ࡱ>  [ _bjbj fΐΐ'T%%&&&$&&&P& 0&Q5N B"!C!C!C/Hzfeo`PPPPPPPT,WPPu&s H"/HssP%%!C!CFQCCCsL'%l!C&!CPCsPCC Y&,*!C8$K&\3%`P\Q0Q%L|Wm|W*|W&*%ssCsssssPPCsssQssss|Wsssssssss $: AN EXPLORATION OF SOCIAL PREDICAMENTS FACING CHILDREN WITH HYDROCEPHALUS: THE CASE STUDY OF MUHIMBILI ORTHOPAEDIC INSTITUTE DEBORA ANANIA MANGI A DISSERTATION SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTERS IN SOCIAL WORK OF THE OPEN UNIVERSITY OF TANZANIA 2016 CERTIFICATION  TC "CERTIFICATION" \f C \l "1"  The undersigned certifies that he has read and hereby recommends for acceptance by the Open University of Tanzania the dissertation titled: An Exploration of Social Predicaments Facing Children with Hydrocephalus: The Case Study of Muhimbili Orthopaedic Institute in Partial Fulfillment of the Requirements for the degree of Master of Social Work of the Open University of Tanzania. ................................................... Dr. John Msindai (Supervisor) ................................................... Date COPYRIGHT  TC "STATEMENT OF COPYRIGHT" \f C \l "1"  No part of this dissertation may be reproduced, stored in any retrieval system, or transmitted in any form by any means, electronic, mechanical, photocopying, recording or otherwise without prior written permission of the author or the Open University of Tanzania in that behalf. DECLARATION  TC "DECLARATION" \f C \l "1"  I, Debora Anania Mangi, do hereby declare that this dissertation is my own original work and that it has not been presented and will not be presented to any other university for a similar or any other degree award. . Signature .. Date DEDICATION  TC "DEDICATION" \f C \l "1"  The study is dedicated to my lovely husband Charles Maswi, my son Elisha and Elia Maswi together with my mom Witness Mfinanga,i would like to thank you for their encouragement and support during the entire period of my studies. ACKNOWLEDGEMENT  TC "ACKNOWLEDGEMENT" \f C \l "1"  I would like to express the deepest appreciation to my Supervisor Dr John Msindai of the Open University of Tanzania who continuously encouraged, assisted and guided me throughout the course of doing this work. Without his guidance and persistent help this dissertation would not have been possible. I would like to thank the Management of MOI for allowing me to conduct my research in the Hospital; and all doctors, nurses and social workers in MOI for their support during data collection and for clarification on various issues related to hydrocephalus. Special thanks are extended to Dr Osman Kilololoma and Dr Shabani Kimaro for being there at all the time when I needed them. I would also like to express my appreciation to all hydrocephalus children and their parents who took time to participate in this research, despite their ailments and strenuous lives. I thank the Open University of Tanzania for enrolling me and thereby imparting onto me immerse knowledge and diverse skills in a most interactive way. In addition, I thank my classmates, family and friends who encouraged me throughout my studies. Without their support and courage this dream could not have become true. Finally, to all other individuals who helped in the production of this work. While they remain anonymous, their invaluable assistance will always be kept and cherished in my memory. Suffice it to say, thank you and God Bless You All! ABSTRACT  TC "ABSTRACT" \f C \l "1"  The study on the exploration of social predicaments facing hydrocephalus children was carried out at Muhimbili Orthopaedic Institute in Dar es Salaam. The study was guided by four specific research objectives, finding out if the parents and community at large knew about hydrocephalus problem: identification of the problems faced by children with hydrocephalus; examination of societys response towards families with hydrocephalus; and determination of possible social work interventions. A sample size of 85 respondents was used. Data collection was carried out using interviews, questionnaires, observations and documentary studies. The data were analyzed using Statistical Packages for Social Science (SPSS) software and thematic analysis. The study found that the people in the communities did not know about the hydrocephalus problem. The findings also revealed that the following challenges and predicaments were faced by children with hydrocephalus: Neglect, threat of being killed, living in isolation hidden and discriminated. Women often faced divorce or separation from their husbands. There was a drastic decline in family income, low society awareness as well as limited support from the community and Government. The study found that social workers and medical staff do not provide adequate education to communities on the problem due to limited funds. It was also found that the prevalence of hydrocephalus is very high among children in Tanzania. Early medical interventions greatly enhance the quality of lives of the children. The study recommends increased public awarenes education, erection of special social infrastructure, economic support, enabling social workers and village leaders to help families with hydrocephalus children. TABLE OF CONTENTS  TOC \o "1-1" CERTIFICATION  PAGEREF _Toc342195469 \h ii COPYRIGHT  PAGEREF _Toc342195470 \h iii DECLARATION  PAGEREF _Toc342195471 \h iv DEDICATION  PAGEREF _Toc342195472 \h v ACKNOWLEDGEMENT  PAGEREF _Toc342195473 \h vi ABSTRACT  PAGEREF _Toc342195474 \h vii LIST OF TABLES  PAGEREF _Toc342195475 \h xiii LIST OF FIGURES  PAGEREF _Toc342195476 \h xiv LIST OF APPENDICES  PAGEREF _Toc342195477 \h xv LIST OF ABBREVIATIONS  PAGEREF _Toc342195478 \h xvi CHAPTER ONE  PAGEREF _Toc342195479 \h 1 INTRODUCTION  PAGEREF _Toc342195480 \h 1 1.1 Background to the Study  PAGEREF _Toc342195481 \h 1 1.2 Statement of the Problem  PAGEREF _Toc342195482 \h 5 1.3 Objectives  PAGEREF _Toc342195483 \h 6 1.3.1 General Objective  PAGEREF _Toc342195484 \h 6 1.3.2 Specific Objectives  PAGEREF _Toc342195485 \h 6 1.4 Research Questions  PAGEREF _Toc342195486 \h 6 1.5 Significance of the Study  PAGEREF _Toc342195487 \h 6 1.6 Limitations of the Study  PAGEREF _Toc342195488 \h 7 1.7 Delimitation  PAGEREF _Toc342195489 \h 7 CHAPTER TWO  PAGEREF _Toc342195490 \h 8 LITERATURE REVIEW  PAGEREF _Toc342195491 \h 8 2.1 Introduction  PAGEREF _Toc342195492 \h 8 2.2 Definition of Terms and Concepts  PAGEREF _Toc342195493 \h 8 2.3 Theoretical Literature Review  PAGEREF _Toc342195494 \h 8 2.3.1 Empowerment Theory  PAGEREF _Toc342195495 \h 9 2.3.2 Ecological Model of Child and Family Functioning  PAGEREF _Toc342195496 \h 12 2.3.3 Concepts of Vulnerability and Resilience  PAGEREF _Toc342195497 \h 15 2.4 Empirical Literature Review  PAGEREF _Toc342195498 \h 18 2.4.1 Factors Affecting Children with Hydrocephalus  PAGEREF _Toc342195499 \h 19 2.4.2 Challenges Facing Parents with Hydrocephalus Children  PAGEREF _Toc342195500 \h 21 2.4.3 Social Relationships  PAGEREF _Toc342195501 \h 23 2.4.4 Economic Issues  PAGEREF _Toc342195502 \h 23 2.4.5 Marital challenges  PAGEREF _Toc342195503 \h 23 2.4.6 Managment of Children with Hydrocephalus  PAGEREF _Toc342195504 \h 24 2.5 Gap of the Study  PAGEREF _Toc342195505 \h 30 2.6 Conceptual Framework  PAGEREF _Toc342195506 \h 30 CHAPTER THREE  PAGEREF _Toc342195507 \h 33 RESEARCH METHODOLOGY  PAGEREF _Toc342195508 \h 33 3.1 Introduction  PAGEREF _Toc342195509 \h 33 3.2 Research Design  PAGEREF _Toc342195510 \h 33 3.3 Study Area  PAGEREF _Toc342195511 \h 34 3.4 Target Population  PAGEREF _Toc342195512 \h 34 3.5 Sampling Size and Sampling  PAGEREF _Toc342195513 \h 34 3.5.1 Sample Size  PAGEREF _Toc342195514 \h 34 3.6 Data Collection Techniques  PAGEREF _Toc342195515 \h 35 3.6.1 Primary Data  PAGEREF _Toc342195516 \h 36 3.6.1.1 Interviews  PAGEREF _Toc342195517 \h 36 3.6.1.2 Questionnaires  PAGEREF _Toc342195518 \h 36 3.6.1.3 Observations  PAGEREF _Toc342195519 \h 37 3.6.2 Secondary Data  PAGEREF _Toc342195520 \h 38 3.7 Data Analysis  PAGEREF _Toc342195521 \h 38 3.8 Reliability and Validity  PAGEREF _Toc342195522 \h 38 3.9 Research Ethics  PAGEREF _Toc342195523 \h 39 CHAPTER FOUR  PAGEREF _Toc342195524 \h 40 DATA PRESENTATION, ANALYSIS AND DISCUSSION  PAGEREF _Toc342195525 \h 40 4.1 Introduction  PAGEREF _Toc342195526 \h 40 4.2 Social Demographic Factors of the Respondents  PAGEREF _Toc342195527 \h 40 4.2.1 Distribution of Respondents by Age  PAGEREF _Toc342195528 \h 40 4.2.2 Number of Children with Hydrocephalus within the Family  PAGEREF _Toc342195529 \h 41 4.2.3 Whether the Children were Enrolled at School  PAGEREF _Toc342195530 \h 42 4.2.4 Monthly Family Income  PAGEREF _Toc342195531 \h 44 4.2.5 History of Having Children with Hydrocephalus (Both Parents)  PAGEREF _Toc342195532 \h 45 4.3 Findings According to Specific Research Objectives  PAGEREF _Toc342195533 \h 46 4.3.1 Parents and Community Awareness with Hydrocephalus Children  PAGEREF _Toc342195534 \h 46 4.3.1.1 Whether they have Ever Heard about Hydrocephalus Children Before  PAGEREF _Toc342195535 \h 47 4.3.1.2 Sources of Information on Hydrocephalus to Respondents before they had a Baby with such a Condition  PAGEREF _Toc342195536 \h 48 4.3.1.3 Understanding of the Basic Requirements of these Children while Taking Care of Them  PAGEREF _Toc342195537 \h 49 4.3.1.4 Whether Parents Managed to Attend any Awareness Session  PAGEREF _Toc342195538 \h 51 4.3.2 Social Work Intervation Related to Family/Community with Hydrocephalus Children  PAGEREF _Toc342195539 \h 53 4.3.2.1 Advice/any Assistance from Social Workers  PAGEREF _Toc342195540 \h 53 4.3.2.2 Respondent Wishes on what should be Done by Social Workers  PAGEREF _Toc342195541 \h 55 4.3.3 Challenges Facing Hydrocephalus Children  PAGEREF _Toc342195542 \h 57 4.3.3.1 Whether Respondents Faced any Challenges  PAGEREF _Toc342195543 \h 57 4.3.3.2 Key Challenges Facing Hydrocephalus Children  PAGEREF _Toc342195544 \h 58 4.2.3.3 Parents Responses Towards Challenge Facing  PAGEREF _Toc342195545 \h 65 4.3.3.4 Respondents Satisfaction with Service Offered by MOI  PAGEREF _Toc342195546 \h 67 4.3.4 Society Responses Towards Families with Hydrocephalus Children  PAGEREF _Toc342195547 \h 68 4.3.4.1 Response of the Father of the Child  PAGEREF _Toc342195548 \h 69 4.3.4.2 Treatment from Neighbours and other Family Members  PAGEREF _Toc342195549 \h 71 4.3.4.3 Respondents Suggestions for Improvement to the Government  PAGEREF _Toc342195550 \h 72 4.4 Findings from Doctors, Social Workers and Ministry of Health Staff  PAGEREF _Toc342195551 \h 74 4.4.1 Whether Engange in Providing Awareness on Hydrocephalus Children  PAGEREF _Toc342195552 \h 74 4.5 Synopsis  PAGEREF _Toc342195553 \h 76 CHAPTER FIVE  PAGEREF _Toc342195554 \h 79 SUMMARY, CONCLUSION AND RECOMMENDATIONS  PAGEREF _Toc342195555 \h 79 5.1 Introduction  PAGEREF _Toc342195556 \h 79 5.2 Summary  PAGEREF _Toc342195557 \h 79 5.2.1 Parents and Community Awareness with Hydrocephalus Children  PAGEREF _Toc342195558 \h 80 5.2.2 Challenges Facing Hydrocephalus Children  PAGEREF _Toc342195559 \h 80 5.2.3 Society Responses Towards Family with Hydrocephalus Child (Children)  PAGEREF _Toc342195560 \h 81 5.2.4 Social Work Intervention Related to Family /Community with Hydrocephalus Children  PAGEREF _Toc342195561 \h 81 5.3 Conclusions  PAGEREF _Toc342195562 \h 82 5.4 Recommendations  PAGEREF _Toc342195563 \h 85 5.4.1 General Recommendations  PAGEREF _Toc342195564 \h 85 5.4.2 Recommended Areas for Further Studies  PAGEREF _Toc342195565 \h 87 REFERENCES  PAGEREF _Toc342195566 \h 89 APPENDICES  PAGEREF _Toc342195567 \h 93  LIST OF TABLES  TC "LIST OF TABLES" \f C \l "1"   TOC \c "table 3." Table 3.1: Distribution Respondents and Sample Size  PAGEREF _Toc341769753 \h 35 TOC \c "Table 4."  Table 4.1: Distribution of Children with Hyrocephalus According to their Age  PAGEREF _Toc341769774 \h 40 Table 4.2: Number of Children with Hydrocephalus within the Family  PAGEREF _Toc341769775 \h 42 Table 4.3: Family Income (Monthly)  PAGEREF _Toc341769776 \h 44 Table 4.4: History of having Children with Hydrocephalus (Both Parents)  PAGEREF _Toc341769777 \h 45 Table 4.5: Respondent Wishes on what should be Done by Social Workers  PAGEREF _Toc341769778 \h 55 Table 4.6: Key Challenges Facing Hydrocephalus Children  PAGEREF _Toc341769779 \h 58 Table 4.7: Parents Responses Towards Challenges  PAGEREF _Toc341769780 \h 65 Table 4.8: Father of the Childs Response  PAGEREF _Toc341769781 \h 69 Table 4.9: Respondents Suggestions for Improvement to the Government  PAGEREF _Toc341769782 \h 73  LIST OF FIGURES  TC "LIST OF FIGURES" \f C \l "1"   TOC \c "Figure 2." Figure 2.1: The Conceptual Framework  PAGEREF _Toc341769820 \h 31 TOC \c "figure 4."  Figure 4.1: Whether Enrolled at School  PAGEREF _Toc341769854 \h 43 Figure 4.2: Whether they had Ever Heard about Hydrocephalus Children before this Child was Born  PAGEREF _Toc341769855 \h 47 Figure 4.3: Sources of Information on Hydrocephalus to Respondents Before  PAGEREF _Toc341769856 \h 48 Figure 4.4: Understanding of the Basic Consideration in Taking Care of these Children  PAGEREF _Toc341769857 \h 50 Figure 4.5: Whether Parents Had Attended any Awareness Session  PAGEREF _Toc341769858 \h 51 Figure 4.6: Social Work Intervention to Community with Hydrocephalus Children  PAGEREF _Toc341769859 \h 53 Figure 4.7: Respondents Satisfaction with Service Offered by MOI  PAGEREF _Toc341769860 \h 67 Figure 4.8: Treatment from Neighbours and other Family Members  PAGEREF _Toc341769861 \h 71 Figure 4.9: Whether Engange in Provining Awareness on Hydrocephalus Children  PAGEREF _Toc341769862 \h 74  LIST OF APPENDICES  TOC \c "appendix " Appendix 1: Questionnaires for Parents with Hydrocephalus Children  PAGEREF _Toc342196119 \h 93 Aappendix 2: Interview Guide for Doctors, Social Workers and Officials from the Ministry of Health, and Social Services  PAGEREF _Toc342196120 \h 99  LIST OF ABBREVIATIONS  TC "ABBREVIATIONS AND ACRONYMS" \f C \l "1"  CSF Increased cerebrospinal fluid ETV Endoscopic third ventriculostomy ICD International Classification of Diseases ICP Increased Intracranial Pressure LMICs Low- and Middle Income Countries MOI Muhimbili Orthopaedic Institute NGOs Non Governmental Organization NTDs Neural Tube Defects CHAPTER ONE TC "CHAPTER ONE" \f C \l "1"  INTRODUCTION TC "INTRODUCTION" \f C \l "1"  1.1 Background to the Study TC "1.1 Background to the study" \f C \l "1"  According to Oliver et al (2010) the word hydrocephalus is derived from the Greek literally words... hydro meaning water and cephalus meaning head. Hydrocephalus is the result of the excessive accumulation of fluid in the brain. Traditionally, hydrocephalus has been described as a disease characterized by increased intracranial pressure (ICP), increased cerebrospinal fluid (CSF) volume, and dilatation of the CSF spaces known as cerebral ventricles. The increased HYPERLINK "https://en.wikipedia.org/wiki/Intracranial_pressure" \o "Intracranial pressure"intracranial pressure inside the HYPERLINK "https://en.wikipedia.org/wiki/Human_skull" \o "Human skull"skull sometimes causes progressive enlargement of the head if it occurs in childhood, potentially causing convulsion, HYPERLINK "https://en.wikipedia.org/wiki/Tunnel_vision" \o "Tunnel vision"tunnel vision, and mental disability. It was once informally called "Water on the brain." This chapter covers background to the problem, statement of the problem, objectives, research questions,significance of the study,delimination, limitation of the study and research ethics. Hydrocephalus affects children all over the world. In the developed world the prevalence is estimated to be 1 in every 2000 births. Globally, the incidence of neo-natal hydrocephalus is 3 to 5 for every 2000 births. 79% of these affected infants in low- and middle income countries (LMICs) lack essential lifesaving care (Smith, 2011). In Africa the prevalence is unknown; but it is estimated that there are over 6,000 new cases of hydrocephalus per year in East Africa (HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/?term=East%20African%20Neurosurgical%20Research%20Collaboration%5BCorporate%20Author%5D"East African Neurosurgical Research Collaboration, 2010). In Tanzania, Kinasha et al (2002) found that the prevalence was about 3 per 1000 live births more or less similar to the global estimates. According to HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/?term=East%20African%20Neurosurgical%20Research%20Collaboration%5BCorporate%20Author%5D"East African Neurosurgical Research Collaboration (2010), with about 1 neurosurgeon per 10,000,000 people in East Africa, initial treatment for hydrocephalus is often unavailable. Hydrocephalus is a congenital malformation in the nervous system which can be caused by maternal infection during pregnancy such as syphilis, rubella and toxoplasmosis drugs ingested by the mother during a critical period of gestation e.g. narcotics drugs, strong antibiotics, ionizing radiation, X-Ray, maternal anesthesia, systemic disease, lack of folic acid as well as electrolyte imbalance, dietary deficiencies, high rates of poverty and ignorance (Smith, 2011). The hydrocephalus children face many challenges. Among the challenges facing them is poor child growth and development, poor concentration in the classroom, which leads to low reasoning capacity and memory impairment. In addition, hydrocephalus children have problems of visual impairment and early onset of puberty. Visual problems affect them in everything because they do not see properly (Venkataramana, 2011). However, early puberty makes them to enter adolescents before time which affects child development. Furthermore, hydrocephalus children are very sensitive to the loud noise. Hydrocephalus childrens react by crying and most of the time are distressed. On the other hand, HYPERLINK "http://www.ncbi.nlm.nih.gov/pubmed/?term=Andersson%20S%5BAuthor%5D&cauthor=true&cauthor_uid=16978464"Anderson, et al  (2006) point out that, hydrocephalus children are often affected a etiology, which often causes multiple ophthalmic and visual disorders. Hydrocephalus is commonly treated by a surgical procedure, performed by a neurosurgeon, in which a tube, called a shunt, is placed into the childs body. The shunt channels the flow of fluid away from the brain or spinal cord into another part of the body, where the fluid can be absorbed and transported into the bloodstream. There is no alternative treatment except for a procedure called endoscopic third ventriculostomy (ETV), which can be used only in a minority of hydrocephalus patients and there is no medication to treat hydrocephalus,Van M. et al, (2009). Previously, the hydrocephalus children were not treated. When the family found that they were having a hydrocephalus child, they often tended to hide their children because they believed that a child with hydrocephalus children was a curse. It was simply a hard time, a nightmare for the child and the family. According to Mbago (2015) it was common in Tanzania for children born with hydrocephalus to be either kept away from the public or killed immediately after birth by their parents or local midwives due to ignorance, fear of family exclusion or marginalization by the society, fearing prolonged stay in hospital, poor management due low incomes, and superstitious beliefs. The situation is still the same. The families with hydrocephalus children still pass through a lot of difficulties, sorrow, depression, poor moral support, poor social interation, psychological effects and poor economic status, Mbago (ibid) points out that while about 4,800 cases are born in Tanzania every year, only 400 children are sent to Muhimbili Orthopedic Institute (MOI) for treatment. According to Kinasha, et al, (2002) many parents do not seek medical attention as early as possible after the onset of clinical symptoms to their children, which is the sign of late presentation to hospital that results to treatment delay therefore prolonged hospitalization. As a consequence, most of these children born with hydrocephalus die because they do not get treatment. Furthermore, Mbogo, (2015) observes that, the deaths of hydrocephalus children are also caused by poor nutrition during pregnancy which leads to impeded growth and development. Early treatment and management, usually accompanied by early surgical treatment, often within the first 24 hours, is vital for increasing the chances of survival of the child, and the reduction of the risk of severe disability among the affected newborns. This is often not possible in majority of the families of low socio-economic status. They are often in a shock and distress and go through great difficulties to bring their children for treatment; and often have to travel long distances in order to reach a health facility equipped to deal with the affected newborn. The infants who do survive are likely to have severe, chronic disabilities and are at risk of psychosocial maladjustment. Currently, the necessary social support structures and rehabilitation services for children with resulting physical disability are practically absent thereby predisposing the affected individuals to a lifelong threat to their quality of life. From this background, this study is built to explore the living conditions and the medical and social welfare services of the hydrocephalus and spinal bifida children and their status. 1.2 Statement of the Problem TC "1.2 Statement of the Problem" \f C \l "1"  Hydrocephalus is one of major causes of infant morbidity and mortality in Tanzania and many parts of the world. Children with hydrocephalus often die very early in life because of the hydrocephalus disorder, or survive with severe developmental delay problems. Early treatment and management of hydrocephalus children always makes a great difference (Oliv et al, 2012). Hydrocephalus is one of serious health and socially sensitive problems in Tanzania. Each year more than 4,800 children in the country are born with hydrocephalus condition and only 400 are received at the Muhimbili Orthopaedic Institute (MOI) yearly. Most children are not brought at the hospital due to various reasons, including wrong beliefs, ignorance and extreme poverty (Smith, 2012). However, only few research reports in Tanzania have been written about hydrocephalus and they are all concerned about surgical procedures (Kinasha, 2002 and 2005). Muhimbili Orthopedic Institute (MOI) admits 5 to 7 hydrocephalus children in a week and 25-30 children in a month Muhimbili Orthopedic Institute (MOI) data base, current study. Going through literature, there is no research that has been carried out in Tanzania looking at the social predicament of children with hydrocephalus. Children with hydrocephalus, in many cases, lack paternal love and affections from their parents and relatives who are usually distressed. As a consequence, in the predicament they are poorly fed and cared leading to poor growth and development with concomitant low academic performance (Lawal, et al 2014). Hence, this study was aimed at filling the gap in knowledge by investigating the predicament of children with hydrocephalus. 1.3 Objectives TC "1.3 Objectives" \f C \l "1"  1.3.1 General Objective TC "1.3.1 General Objective" \f C \l "1"  The main objective of this study was to investigate the social predicaments of children with hydrocephalus. 1.3.2 Specific Objectives TC "1.3.2 Specific Objectives" \f C \l "1"  The specific objectives of this study were to: To assess parents/community awareness of hydrocephalus children. To identify problems facing children/families with hydrocephalus To examine society reponses towards families with hydrocephalus children To determine possible social work interventions related to children /family /community with hydrocephalus children 1.4 Research Questions TC "1.4 Research Questions" \f C \l "1"  This study was guided by the following research questions: To what extent are parents and community aware of the hydrocephalus condition? Are there any social work inteventions for hydrocephalus childrens cases? What are the problem facing hydrocephalus children? How does the society respond towards families with hydrocephalus children? 1.5 Significance of the Study TC "1.5 Significance of the Study" \f C \l "1"  This study is of significance as follows: Firstly, this study was aimed at contributing to the existing knowledge on hydrocephalus children and thereby enhance the welfare of the children with hydrocephalus in Tanzania. Secondly, the study was useful for Health, Social Welfare practitioners and NGOs as a source of information on the current state of the hydrocephalus children in Tanzania. The social workers and NGOs working to support these children were used the findings to sensitize communities on the importance of seeking modern medical assistance and guidance early on in order help the children lead normal lives. Thirdly, the study was beneficial to the academic institutions and individuals who might be interested in carrying out related researches in future. 1.6 Limitations of the Study TC "1.6 Limitations of the Study" \f C \l "1"  The following were the limitations of the study: First, the study was confined to Muhimbili Orthopedic Institute (MOI) in Dar es Salaam. In this regard, it missed a broader spectrum of coverage and comparability as far as the problem is concerned. Second, there was also a problem of language for certain patients. Third, a friendly environment without elements of suspicion had to be established for indepth interviews with parents of hydrocephalus children, family, friends and community members. 1.7 Delimitation TC "1.7 Delimitation" \f C \l "1"  This study focussed on parents of hydrocephalus children admitted at MOI, medical personnel such as doctors, nurses and social workers. Information from the communities surrounding the hydrocephalus children was obtained from the friends, neighbours and family members who visited the patients or came with them to the Hospital. In certain cases there were problems with language, especially for those patients who came straight from villages and were illiterate. This problem was overcome by use of interpreters who usually accompanied them. CHAPTER TWO TC "CHAPTER TWO" \f C \l "1"  LITERATURE REVIEW  TC "LITERATURE REVIEW" \f C \l "1"  2.1 Introduction TC "2.1 Introduction" \f C \l "1"  Literature review forms an important part of any rigorous study. This chapter provides, definition of concepts, an analysis of theories related to the study, a review of empirical studies, i.e. studies which have been carried out by other researchers, the conceptual framework and ends up with a summary and identification of gaps, 2.2 Definition of Terms and Concepts TC "2.2 Definition of Terms and Concepts" \f C \l "1"  Hydrocephalus Hydro means water and kephalos means head. These two Greek words combine to form the word hydrocephalus. According to Oliver et al (2010) hydrocephalus is a medical condition in which there is an HYPERLINK "https://en.wikipedia.org/wiki/Abnormality_%28behavior%29" \o "Abnormality (behavior)"abnormal accumulation of HYPERLINK "https://en.wikipedia.org/wiki/Cerebrospinal_fluid" \o "Cerebrospinal fluid"Cerebrospinal Spinal Fluid (CSF) in the brain. This causes increased HYPERLINK "https://en.wikipedia.org/wiki/Intracranial_pressure" \o "Intracranial pressure"intracranial pressure inside the HYPERLINK "https://en.wikipedia.org/wiki/Human_skull" \o "Human skull"skull and may cause progressive enlargement of the head if it occurs in childhood, potentially causing convulsion, HYPERLINK "https://en.wikipedia.org/wiki/Tunnel_vision" \o "Tunnel vision"tunnel vision, and mental disability. It was once informally called "Water on the brain. Shunting is a surgical procedure of inserting a shunt into the head in order to drain the excess fluids. The shunt is medically referred to as ventriculoperitoneal catheter. Therefore, a shunt is a medical device that relieves pressure on the brain caused by fluid accumulation. 2.3 Theoretical Literature Review TC "2.3 Theoretical Literature Review" \f C \l "1"  Theoretically, the design of the study of the predicament of children with hydrocephalus has taken into account the theoretical trappings of the transactional model of human development by Sameroff et al (2010), the ecological model of child and family functioning (Bronfenbrenner, 1999; 2005), systems theory and the concepts of vulnerability and resilience (Werneret al., 1982; Garmezy et al 1983; Payne et al 2003). Thus, competence development in young children with hydrocephalus and the adaptation of their families to the situation are processes that are influenced by both intrinsic and extrinsic factors related to the child and to the ecology of the family and the community as a whole. When a child is born with a hydrocephalus condition more often the family is, in general, greatly affected. The parents gender roles are deeply disturbed, the quality of life of other members of the family and their relationships degraded, financial resources and the concomitant employment status of parents are greatly affected. The use of time tilts towards care activities, health deteriorate coupled with persistent stress and even the occurrence of demographic life events, such as divorce or marriage or the birth of another child are shaken. Who will marry into a family with a hydrocephalus child? Should the couple get another child? What if again a child with hydrocephalus is born into the family? These questions and others persistently reverberate into minds. 2.3.1 Empowerment Theory TC "2.3.1 Empowerment Theory" \f C \l "1"  Hydrocephalus children in family are real challenge, most of parents and family members are usually stressed and in despair, and the need for empowerment of such families is to say the least essential. Empowerment is the process of providing basic opportunities for marginalized people, either directly to those people, or indirectly through non-marginalized people who share their own access to these opportunities (Narayan, 2005). Empowerment refers to principles, such as the ability of individuals and groups to act in order to ensure their own well-being or their right to participate in decision-making that concerns them and also guided research on and social intervention among poor and marginalized (Cornwall et al, 2005). Empowerment includes encouraging, and developing skills for self-support, with a focus on eliminating the future need for charity or welfare in the individuals of the group. Creation of family/community awareness, especially women, on the causes of hydrocephalus and what the condition of hydrocephalus is all about enables parents to seek medical help and social work assistance early, thereby enhancing the livelihood of the children and families. Also women will recognize the need to attend clinic and identify the problem early during the pregnancy. However, the community should be knowledgeable about diseases because the problem can be prevented and managed when it happens to the family. Knowledge about diseases and in this case hydrocephalus will reduce the number of mortality and morbidity rates of children (Kabeer, 2001). In social work, empowerment offers an approach that allows social workers to increase the capacity for self-help of their clients. For example, this allows clients not to be seen as passive, helpless 'victims' to be rescued; but instead as a self-empowered person fighting abuse, oppression; a fight, in which the social worker takes the position of a facilitator, instead of the position of a 'rescuer'. Marginalized people who lack self-sufficiency become, at a minimum, dependent on charity, or welfare Frey, et al (1989). They lose their self-confidence because they cannot be fully self-supporting. The opportunities denied them also deprive them of the pride of accomplishment, which others, who have those opportunities, can develop for themselves. This in turn can lead to psychological, social and even mental health problems. Marginalized here refers to the overt or covert trends within societies whereby those perceived as lacking desirable traits or deviating from the group norms tend to be excluded by wider society and ostracized as undesirables (Augustine, 2010). This theory is applicable to this study because the theory provides guidance for families and communities to seek financial services and support to meet the challenges of hydrocephalus children and confidence to meet with difficult situations of having hydrocephalus children. There is an extensive literature describing the positive relationship between social support and parental well-being (Levitt, et al, 1986; Dunst et al, 1990; Beckman, 1991; diminished maternal depression and an enhanced sense of parental competence (Gowen et al., 1989), mother - child interaction (Crnic, et al., 1984), and recovery from physical illness (Wortman et al 1985). Social support may be differentially effective, however, as suggested by Frey, et al (1989), who studied correlates of family adjustment, parenting stress, and psychological distress among mothers and fathers of preschoolers with disabilities and found that social support was associated only with maternal family adjustment. Other studies have noted that the effect of stressful situations on individual and family outcomes may be strongest when social supports are inadequate, suggesting an indirect or buffering rather than a direct or main effect of social support. Koeske et al (1990), for example, investigated the effects of parenting stress and social support on satisfaction with the parenting role, parental self-esteem, and psychological complaints in a sample of young mothers. They found that stress was associated with negative outcomes only for mothers with inadequate support. 2.3.2 Ecological Model of Child and Family Functioning TC "2.3.2 Ecological Model of Child and Family Functioning" \f C \l "1"  The Ecological Model of child and family functioning explains the paradox on family reaction and adaptation to the challenges of rearing a child with disabilities and specifically hydrocephalus. Most researchers on the subject have primarily focused on mothers rather than on families applying a pathological model of adaptation (Byrne & Cunningham, 1985; Krauss, 1986). Such models assumed that rearing a child with a hydrocephalus was inherently stressful and that the affected families were a homogeneous group. In contrast to the usual normal family development patterns, families with a hydrocephalus child experience high levels of marital disintegration; greater marital dissatisfaction; elevated tension and psychological dysfunction among siblings; chronic and dysfunctional stress by parents, particularly mothers; avoidance and abandoning of families among fathers; restricted social mobility and social relationships; and poor mother-child relationships. Fathers and mothers usually experience the increased stress related to the presence of a hydrocephalus child differently: in most cases, it is the mother who gives up her job or career to stay home and take over most of the childcare responsibilities (Hedov et al., 2000, Lukemeyer et al. 2000, Powers, 2011). According to Byrne (2002), Contemporary conceptual models of family adaptation incorporate dimensions of enduring family life and others expound family systems theory, which considers families as definite organizational entities into which inputs and outputs affect all members (Walsh, 1980). Common to most contemporary theories and models of family adaptation is the perspective that families, as a system, change in response to normative transitions and unpredictable events while at the same time preserving the integrity of their structural and organizational unity (Melito, 1985; Shonkoff, et al, 1987; Krauss et al, 1990) Within this context, successful negotiation of the opposing tendencies of change and stability characterizes positive family functioning. Several models of family adaptation have been formulated since the early 1980s. Although the models differ in their emphasis, they converge in their identification of determinants of adaptation, including characteristics of the stressful event, available internal and external resources, the family's attribution of meaning to the event, and interactions among the various ecological contexts in which the family operates. In early intervention programs, four indices of family adaptation are particularly important. The first one is the interaction between mother and child; the second parenting stress; the third the effects on the family of rearing a child with hydrocephalus; and the fourth, is social support. As a group, these four constructs represent both theoretically and programmatically salient aspects of family functioning that change over time (Turkey & Ergn, 2012). Children with hydrocephalus are at greater risk of growing up in a single-parent household Loft 2011, (2013). In terms of family size and fertility decisions, the decision whether to have other children or not is difficult. In a study based in a province of Turkey& Ergn (2012) report that the most frequent problems experienced by mothers of disabled children were sadness, anger and loneliness. Such could be the case with mothers of hydrocephalus children. Mash & Johnston (1990) conceptualize parental stress as involving behavioral affective and cognitive components. In the relationship with a child, the level of stress experienced depends on the difference between the situational demands and the individuals resources and goals. Eight categories of potential stress seem relevant to the parents of children with hydrocephalus (as mainly proposed by Mc Cubbin et al. (1982) for children with disabilities, but also cited in Olsson & Hwang, 2003): financial hardship, strained emotional relationships within the family (in fact, mothers who have support from their partners experience less stress and depression), modification of family activities and goals, restricted social life, time restrictions caused by care demands, family contact with professionals (which can cause frustration, disappointment and anger), mourning and depression (depressive symptoms as a consequence of the mourning process - the birth of a child with a disability is a permanent stressful event in the life (Olsson and Hwang, 2003). Longitudinal studies (Dyson, 1993) show stability over time (and therefore as the child grows older) of overall parental stress and family functioning. Parenting stress and its impact on family functioning, controlled by family annual income and parental education, has been associated with family functioning variables and with childrens social skills (rather than other skills (Smith et al. 2001). Consequently, the role of specific service interventions on particular child and parent could be associated with changes in parenting stress over time. In fact, family systems theories emphasize that novel demands on any member of a family have reverberating effects on other members and on the family as an organizational unit (Walsh, 1980). Social support are set of interconnected relationships among a group of people that provides enduring patterns of nurturance and provides contingent reinforcement for efforts to cope with life on a day-to-day basis. Particularly for families with a member with hydrocephalus, the affective and instrumental support provided by intimate and extended family members, professionals, and community agencies can be extensive. Social support networks provide a buffer for affected parents and immediate family member from the physically and emotionally depleting effects stress (Dunst et al., 1986; Koeske et al 1990). Given the potentially important and positive effects of social support network (Cohen & Syme, 1985), many early intervention programs enhance parental support as a primary intervention goal (Dunst et al., 1988). The strategy is particularly important given the long-noted vulnerability of parents of children with hydrocephalus to social isolation within their extended families as well as within the community at large (Crnic et al., 1986; Suelzle et al., 1981). 2.3.3 Concepts of Vulnerability and Resilience TC "2.3.3 Concepts of vulnerability and resilience" \f C \l "1"  In all families during the early childhood period typically the developmental tasks facing them involve the establishment of positive, nurturing relationships between parents and their children and the reformulation of roles among family members (Belsky, 2016; Pluess et al., 2011). In order to assess the processes of family adaptation to normative and non-normative stress, contemporary conceptual models focus on the extent to which personal, family, and community resources are mobilized to meet changing life situations (Malcolm Hill, 2007). Within this context, adaptive families generally are characterized by an ability to support the needs of all their members and to be responsive to acute and chronic adversities as they arise. Families of children with disabilities traditionally have been seen as "at risk (Schofield et al., 2000). In the case of hydrocephalus children, parents are shocked and mesmerized by the birth of this strange child and so is the community around. Traditional healers complicate the birth of the hydrocephalus by pointing out certain family members and neighbors as people who bewitched them. This is where the role of social workers comes in, fending off family and community discord. The social worker supports the newly born and the family in general by enlightening the parents and community about the condition; this might not be a common type of newly born, but they are found in many parts of the world, let alone Tanzania; the condition is known as hydrocephalus. A hydrocephalus child has special needs and should be nurtured under the expertise of medical doctors and social workers. The concept of resilience is fundamental to the well-being of hydrocephalus children and is used often in assessments by social workers. A well-known definition of resilience is, Normal development under difficult conditions (Fonagy et al., 1994). Vulnerability is the opposite of resilience. Many children who need additional and specialized help experience harsh conditions of living. This may relate to their health, their progress at school or what is happening in their family or community. In the African environment, which is often interwoven with mystic traditional falsifications and disturbing predictions as to the future of the family and community, the prescription of right ways of handling the cases is complicated. A resilience-based approach fits closely with the aim of getting it right for every child to build on the strengths in the childs whole world, and always drawing on what the family, community and universal services can offer. Focusing on the positives and the strengths in a childs life is likely to help to improve outcomes by building a protective network around hydrocephalus children (Daniel et al 2002). At the same time, it is always important to be alert to whether any adversity of vulnerability is putting childrens well-being at risk and make sure this is taken into account. Home is important but so too is what is going on in the rest of a childs world. School and spare-time activities, for example can provide opportunities for enhancing resilience. The existence of protective factors can help to explain why one child may cope better with adverse life events than another. The level of individual resilience can be seen as falling on a dimension of resilience and vulnerability. This dimension is usually used to refer to intrinsic qualities of an individual. Some children are more intrinsically resilient than others because of a whole range of factors. For example, an easy temperament is associated with resilience in infancy Checkoway et al (1986). Although pointers to resilience may be present these have always to be taken in the context of an individual childs situation. For example, some children may appear on the surface to be coping well with adversity, but they may be feeling very stressed internally Daniel et al (2002). This is why it is important to get to know a child during the process of assessment and also why views of the child from different adults in their world are so valuable. There are many factors associated with resilience such: A secure base whereby the child feels a sense of belonging and security. Self esteem, that is an internal sense of worth and competence. A sense of self-efficacy; that is, a sense of mastery and control, along with an accurate understanding of personal strengths and limitations. There are some factors which may be both protective and also suggest vulnerability or adversity, for example, removing an abuser from a domestic violence situation may be protective to both mother and child but can result in poverty which increases adversity. Judgements made should see what needs to be done to help the child and family in order to strengthen protective factors and resilience, and reduce adversity and vulnerabilities Gilligan (1997). 2.4 Empirical Literature Review TC "2.4 Empirical Literature Review" \f C \l "1"  Although most research on family issues related to childhood disability, such as hydrocephalus, has focused on mothers, a growing body of literature suggests that the adaptation of fathers may differ in some respects. Whereas some studies have found mothers to have higher levels of parenting stress and depression than fathers, others have reported that fathers experience higher levels of stress than mothers. Notwithstanding the emergence of greater attention to fathers by the research community, similarities and differences in the adaptive patterns of both mothers and fathers of children with hydrocephalus remain relatively unexplored (Augustine, 2010). The persistence of their heightened parenting difficulties, coupled with their diminishing informal support network, signals troubling vulnerability during the early childhood period. Tracking the durability of these and exploring the difficulties these families experience in sustaining helpful support systems could represent an important agenda for continued longitudinal study. 2.4.1 Factors Affecting Children with Hydrocephalus TC "2.4.1 Factors affecting children with hydrocephalus" \f C \l "1"  Hydrocephalus is a big challenge; nowadays, many children are born with the hydrocephalus problem. The main factors for the occurrence of hydrocephalus are not well known, but there are certain factors which seem to be associated with hydrocephalus children. Most neurosurgical problems during infancy and childhood are due to congenital malformation and occur in the nervous system more frequently than in any other organ system and are exceeded only by prematurity as a course death. In most cases, no specific courses can be demonstrated, although a number of teratogenic factors have been recognized, such as maternal infections, for example, rubella, toxoplasmosis,cytoplasmsis, cytomegalic inclusion disease, and syphilis, drugs ingested by the mother during critical period of gestation fore intense thalidomide-rays to the mother, maternal anesthesia, systemic disease, electrolyte imbalance ,and dietary deficiencies. According to Darvin (2014), infections are not good for the pregnancy. Bacterial infections can affect pregnant women from implantation of the fertilized ovum through the time of delivery and per partum period they may also affect the fetus and newborn. Many women with these infections are asymptomatic, necessitating both a high degree of clinical awareness and adequate screening. Many infectious diseases affect development of the premature birth. Infections in the uterus during pregnancy such as syphilis affect the development of the child and may lead to hydrocephalus child. However, there are other diseases which can lead to hydrocephalus child such as tumors in the brain and spinal cord may affect the development of the child and results into hydrocephalus child. However, bleeding in the brain may affects development of the child and may lead to hydrocephalus child, abnormal flow of the spinal fluid is normally caused by abnormal development of the central nervous system. When there is abnormal flow of the spinal fluid, results is a child with hydrocephalus (Darvin, 2014). Another factor is lack of folic acid. Folic acid is very important on the development of the premature child. All women who could become pregnant should take a daily multivitamin containing folic acid. Since many pregnancies in Canada are unplanned, and neural tube defects (NTDs) occur before most women even know they are pregnant, all women who could become pregnant should take folic acid at least three months prior to conception. Lack of folic acid may lead to a child of hydrocephalus,other factors for hydrocephalus children are that there are some tribes who marry each other while they are coming from the same relations. Marriage of people from the same relations affects new born child and one of the effect is production of hydrocephalus children. On the other hand, normally a child is supposed to get birth without any complications. However, complication of the premature birth may lead to a child with hydrocephalus. This is because complications interrupt the development of the child and may lead to hydrocephalus children Lawal et al (2014). 2.4.2 Challenges Facing Parents with Hydrocephalus Children TC "2.4.2 Challenges facing parents with hydrocephalus children" \f C \l "1"  Children with hydrocephalus are a burden in the family. The availability of hydrocephalus children in the family draws the attention of the whole family and neighbours. According to Muala et al., (2008) lack of social services such health services, poverty, unawarnes, education and ignorance further complicate the support offered to the parents and families in general. In addition, stigma is a major challenge facing parents with hydrocephalus children. According to Checkoway and Norsman (1986) stigma is one of the barriers to seeking care for parents/care takers with children suffering from hydrocephalus. Managing hydrocephalus is real a challenge with stigmatization. In other community parents are given no information or support when their child is diagnosed. Stigma attached to disability and causes them to worry about how their children will cope when they grow up. Anecdotal evidence from parents attending MOI mothers shows that mothers who deliver babies with this condition are often abandoned by their husbands or partners. Mothers have reported that the husbands claim the disease did not exist in their clans or families. This is an indication of the social cultural aspects related to the definition and beliefs about its causation in the community. On other hand poverty is one of the challenge which affect the family to manarge the child, According to Muala et al (2008) poverty is a condition of unavailability of essential things for a person. Unavailability of money for the parent makes them impossible to take their children to the hospitals. As a result many hydrocephalus children die at their homes without ever having received medical attention. Poverty impedes access important services such as hospitals services. Lack of access to hospital services of parents with hydrocephalus children increases burden to family and makes difficulties situation to take care of the child. Muala et al (2008) discovered that parents of such children suffer low social economic status ,because of the burden of care. Transportation is essential for parents with hydrocephalus children. However, difficulties of the transport make parents with hydrocephalus children to hide the children at home. Certain tribes interpret badly the availability of hydrocephalus. There are tribes with pervase cultures who believe that if a family has hydrocephalus children, then it means that they have a curse. As a consequence, many families with hydrocephalus children usually hide their children, which as the result increases the number of deaths of these children. Furthermore, there are challenges in the Tanzanian hospitals. Availability of equipments in hospitals to manage hydrocephalus children help to reduce the challenges for the parents with hydrocephalus children. However, lack of equipments in our hospitals to management of hydrocephalus children is a challenge for the parents with hydrocephalus children. However, availabilities of qualified health professionals to manage hydrocephalus children help to reduce pains for family. On the other hand, lack of trained health professionals to help treatment for the hydrocephalus children is a challenge. The economic challenges appear voluminous and are described by child neurology society (Muala, 2012) as significant financial disadvantage. 2.4.3 Social Relationships TC "2.4.3 Social relationships" \f C \l "1"  Social relationship is another challenge for the parents, most of the mother has limited with social integration a mother said I travel when it is inevitable, most of the time I have to take care of child.In terms of relationship between parent and affected children, there has big difference, but all cases the child had profound impact on family dynamics, for example some of the parents, describe the situation is stressfull to them, causing parental with affected psychological and at the end left the child without management. Another big challenge is stigma, many parent start their own movement was hampered while a good number of them missed their social interactions due to the health condition of their children women feel inferiority and some times said how can I go out, who is going to stay with my child, another women say that I dont allowed anybody to carry my children because she drools a saliva. 2.4.4 Economic Issues TC "2.4.4 Economic issues" \f C \l "1"  The economic challenges appear voluminous and are described by child neurology society (2012) as significant financial disadvantage. Muala et al (2008) discovered that parents of such children suffer low social economic status, because of the burden of care.most of the parents spend more time to the hospital rather than doing other things.so they have low income execialy for those parents who are not employed. 2.4.5 Marital challenges TC "2.4.5 Marital challenges" \f C \l "1"  Women are more vulnerable in that situation because there always taking care children. The major challenges which are facing woman is socio-economic challenges there poor social and hampered economic status, women were themselves deprived of their normal social lives. On the other hand women with hydrocephalus children cannot have time to deal with economic situation because they are busy with their children. This makes women with hydrocephalus children to be poor due to lack of finance to help their children. However, women with hydrocephalus children are socially neglected by their families and their neighbors. This is because the community believes that hydrocephalus children are cursed. Women with hydrocephalus children are affected psychologically. The women happiness ends when they discovered that their children are hydrocephalus There, women become lonely and unhappy, A baby can be born with hydrocephalus or after a few early months the hydrocephalus starts, However, women with hydrocephalus children are suffered much due to different attacks from their husbands and the society at large. On the other hand, the treatment of hydrocephalus children is not very much aware for the society, Lawal et al, (2014). 2.4.6 Managment of Children with Hydrocephalus TC "2.4.6 Managment of children with hydrocephalus" \f C \l "1"  Smith (2010) conducted a study on parents management of their childs hydrocephalus and shunt. Shunts are the main treatment for hydrocephalus. When shunts malfunction the consequences are serious and can be life threatening. Identifying shunt malfunction requires effective parent-professional collaboration, parents need to recognize and respond appropriately to the symptoms of shunt malfunction in their child; professionals need to integrate parents information about their childs symptoms during clinical decision making and diagnosis. This thesis explored parents experiences of living with a child with hydrocephalus and parents and professionals contribution to the diagnosis of shunt malfunction in acute hospital admissions. Two exploratory studies were undertaken using interview and observational methods to elicit data. The framework approach and conversation analysis were used to analyze and interpret data. Results revealed that Parents gain considerable skills and knowledge about their childs health needs, (Kothari, 2004) they are able to distinguish between symptoms indicating shunt problems from other childhood illnesses. Deciding where or when to seek help is influenced by minimizing disruption for the whole family and prior experiences of healthcare services. Parents perceive that their expertise is not always valued by health professionals and not always used to make clinical decisions. Analysis of parent-professional interactions suggests health professionals involvement of parents in decisions about their child s care is variable. There was evidence of some collaborative practice but tensions were evident within the interactions when parents disagreed with professionals judgments. The study concluded that a collaborative paradigm is appropriate when engaging with expert parents living with a child with hydrocephalus. The challenge for health professionals was to integrate parents expertise of their child s presenting symptoms within their clinical assessment when planning the child s care. A part of being a good study, the study identified the challenges facing hydrocephalus children. But it fails to identify the social problems and family awareness of hydrocephalus children. Oliv, et al, (2012) conducted a study on mothers of Children with Hydrocephalus. The paper indicated that Hydrocephalus is a major cause of infant morbidity and mortality. Early diagnosis of hydrocephalus gives families more time to prepare to cope with their childrens conditions. This study aimed to describe aspects about the prenatal care received in relation to time of pregnancy among mothers of children with hydrocephalus. The study was conducted with 54 mothers of children with congenital hydrocephalus in the Clinic of Neurosurgery at University Hospital in northeast Brazil. Fifty-one mothers received prenatal care (94.4%); 44 (81.5%) had not taken the folic acid. Four (7.8%) mothers visited during the first month of pregnancy, forty (78.4%) had their first visit after the fourth month of pregnancy. Despite their adherence to prenatal care, most of the mothers had their first visit after the fourth month of pregnancy. Strategies that encourage prenatal care as early as possible in the pregnancy should be implemented. A part of being a good study, the study identified the challenges facing hydrocephalus children. But it fails to identify the social problems and family awareness of hydrocephalus children. Andersson, et al (2006) conducted a study on hydrocephalus in children has many aetiologies, and can cause multiple ophthalmic and visual disorders. This study sets out to detect and quantify visual and visuoperceptual dysfunction in children who have received surgical treatment for hydrocephalus with and without myelomeningocele, and to relate the results to the associated diagnoses and results from a comparison group. Seventy-five school-aged children (41 males, 34 females) with surgically-treated hydrocephalus and 140 comparison children (76 males, 64 females) matched for age and sex underwent comprehensive ophthalmologic examination. Median age at examination was 9 years and 4 months (range 7 y 4 mo-12 y 10 mo). Visual function deficits were identified in 83% (62/75) of the children with hydrocephalus. Visual impairment (binocular visual acuity <0.3) was found in 15% (11/73; comparison group 0%) but in none with myelomeningocele. These disorders were identified in various combinations and comprised (1994) conducted a study on the management of hydrocephalus in children with medulloblastoma: prognostic factors for shunting. The study revealed that patients with medulloblastoma frequently present with hydrocephalus. While not all patients with medulloblastoma will continue to suffer from hydrocephalus after tumor resection, there is a significant proportion that will require a permanent shunt. We have retrospectively reviewed a group of children with medulloblastoma not shunted preoperatively, and have identified several characteristics which are associated with a requirement for permanent shunt. The study studied 42 patients and found that 17 patients (40%) required permanent shunts within 4 weeks of craniotomy. The shunted patients were younger (5.4 +/- 2.9 vs. 10.0 +/- 5.7 years; p < 0.01), had larger ventricles (p < 0.05), and had more extensive tumors (Chang's stage T3 and T4; p < 0.01). These variables were all independently significant. In addition, it found that the patients requiring postcraniotomy shunts had a much higher rate of morbidity including a postoperative pseudobulbar syndrome. Of interest, it found that none of patients without the above characteristics required a shunt. Thus, it concludes that younger patients with moderate to severe preoperative hydrocephalus and extensive tumors may benefit from perioperative Cellebral Spinal Fluid (CSF) diversion. Other patients not meeting the above criteria can probably be safely managed with perioperative corticosteroids alone. The study was good but was based on the treatments of the hydrocephalus children. But it failed to identify the social predicament facing children with hydrocephalus. Raimondi (1994) conducted a study on a unifying theory for the definition and classification of hydrocephalus. If the cerebrospinal fluid (CSF) is considered to be all the fluid (liquid), other than blood or the derivatives of its breakdown, that is normally contained within the brain, its cavities, and its spaces, this could be regarded as "brain fluid" in its most elemental form. "Pathological increases in intracranial CSF volume, independent of hydrostatic or barometric pressure", then, could be considered a definition of hydrocephalus. The observation of significant episodic variation in intracranial pressure (ICP) suggests the necessity of substituting the concept of "time-related pressure variations" for the older one of "level of pressure" in patients with defective ICP control mechanisms. Hydrocephalus is a pathologic increase in intracranial CSF ("brain fluid") volume, whether intra- or extraparenchymal, independent of hydrostatic or barometric pressure. It may be classified as (1) intraparenchymal (cerebral edema) and (2) extraparenchymal, with the extraparenchymal types subclassified into subarachnoid, cisternal, and intraventricular forms. The study was concentrated on the meaning of hydrocephalus children but it failed to explain the social and family awareness of children. This study aimed to fill a gap. Van, et al (2009) conducted a study on risk factors of congenital hydrocephalus. The objective of the study was to evaluate and identify the risk factors associated with the pathogenesis of congenital hydrocephalus in a large specific population. An International Classification of Diseases (ICD) database searches of patients with congenital hydrocephalus treated at the University of Mississippi Medical Center between 1998 and 2007 was performed. All recruited patients were interviewed, assessing maternal age, onset of prenatal care, geographic location of pregnancy, maternal diabetes and chronic hypertension, pregnancy induced hypertension, pre-eclampsia, eclampsia, single or multiparous gestation, maternal alcohol, tobacco and drug use, infection and trauma during gestation, trauma or sexually transmitted disease at parturition, and other family members with hydrocephalus. In this 10 year retrospective study, several significant risk factors were identified among 596 well defined cases of congenital hydrocephalus. The identified risk factors included lack of prenatal care, multiparous gestation, maternal diabetes, maternal chronic hypertension, and maternal hypertension during gestation and alcohol use during pregnancy, these patients with congenital hydrocephalus, 12.1% identified an additional family member also diagnosed with hydrocephalus. No differences in risk factors were identified between sporadic and familial congenital hydrocephalus cases except for an increased incidence of multiparous pregnancies and prenatal care in the first trimester in familial cases. A number of key risk factors have been identified to be strongly associated with the development of congenital hydrocephalus in an infant. The prevalence of familial patterns of inheritance for congenital hydrocephalus suggests a broader role for genetic factors in the pathogenesis of congenital hydrocephalus. A part of being a good study, the study identified the risk factors of hydrocephalus children. 2.5 Gap of the Study TC "2.5 Gap of the study" \f C \l "1"  Most of empirical research above on hydrocephalus is associated children with hydrocephalus (Andersson et el (2006); Lee, et el (1994); Raimondi (1994) Van et al (2009). All these studies concentrated on hydrocephalus children without incorporating the social predicament of the family with hydrocephalus children and involvement of the community and government in the management of the condition. Smith (2010) conducted a study on parents management of their childs hydrocephalus and shunt. However, in Tanzania few studies have been conducted on children with hydrocephalus; but no studies have been done to explore the social predicaments the parents with hydrocephalus. Social services such as education to the family/community would help the family to prevent this problem and also better manage the problem when it occurs. 2.6 Conceptual Framework TC "2.6 Conceptual framework" \f C \l "1"  Conceptual framework is how the researcher is going to do the study. A conceptual framework help to show how the research can be done in a particular way (Patton, 2002). It can also help us to understand and use the ideas of others who have done similar things. A framework can help to decide and explain the routes that are taking and come up with conclusion (Yin, 2003). In this study a conceptual framework will be designed which derived from social predicament with children hydrocephalus. The conceptual framework model for this study is provided in Figure 2.1. Independent Variables Intervening Factors Dependent Variables  Figure 2. SEQ figure_2. \* ARABIC 1: The Conceptual Framework Source: Authors Own Construct, (2016) A conceptual framework is a research tool anticipated to help the researcher to be familiar and understand the social predicaments of hydrocephalus children.The basic feature of conceptual framework includes independent, intervening and dependent variables. Independent variables are variables that influence dependent variables (outcomes); and dependent variables are variables which are influenced by variation that occur in another variable Figure 2.1. Intervening factors such as family/community awareness, health services, availability of medical and social work services, Government assistance, availability of funds - all these are the major factors which provide an environment for either curtailing or increasing morbidity and mortality of children with hydrocephus. Failures of mothers to attend clinics during pregnancy can be one of risks of getting children with hydrocephalus in the family. Certain communities believe that having a child with hydrocephalus is a curse. Such communities have to be educated on the real causes of hydrocephalus as provided in this study. Often old communities tended to hide their children because they believed a child with hydrocephalus is curse. In certain cases the children born with hydrocephalus is either kept away from the public or killed immediately after birth by their parents or local midwives due to ignorance. Fear of family exclusion or marginalization by the society, fear of higly cost, prolonged stay in hospital, poor management due low incomes, and superstitious beliefs influence the outcomes of the fate of children with hydrocephalus. However, by improving, family/community awareness, health services , medical services, increase in number of trained social workers and social services, Government assistance, availability of funds and trained teachers in special education guarantee improved welfare of the affected children and families (dependent variable). CHAPTER THREE TC "CHAPTER THREE" \f C \l "1"  RESEARCH METHODOLOGY  TC "RESEARCH METHODOLOGY" \f C \l "1"  3.1 Introduction TC "3.1 Introduction" \f C \l "1"  This chapter describes the methodology that was used to carry out this study. The chapter describes the type of the study, area of the study, study population and sample size, sampling techniques, types and sources of data, data collection methods and data analysis methods. 3.2 Research Design TC "3.2 Research design" \f C \l "1"  Research design is the conceptual structure within which research is conducted. It constitutes the blueprint for the collection, measurements, and analysis of data (Kothari, 2004). This research used both qualitative and quantitative approaches. Creswell (2003); Denzin and Lincoln (2003), view qualitative research as an approach to research that uses multiple methods that are interactive and humanistic, involving naturalistic and descriptive approaches. Also qualitative research aimed at gathering in-depth understanding of human behavior and the reasons that governs such behavior. Quantitative research as a systematic empirical investigation of quantitative properties phenomena and their relationship with the aim of developing and employing mathematical models, theories and/or hypotheses pertaining to phenomena. Participatory approaches were used and proved its strength in involving the parents and community in the continuation process. This design was felt well as it contained both descriptive as well as interpretive data. It also emphasized on the discovery of ideas, perceptions and insights from respondents. 3.3 Study Area TC "3.3 Study area" \f C \l "1"  This study was at conducted at Muhimbili Orthopedic Institute (MOI). The selection of MOI Hospital was done purposively due to the fact that most of the cases of hydrocephalus in children are referred to MOI hospital for futher management from all hospitals in Tanzania. The treatment of the condition is so specialized that MOI is currently the only hospital with specialists in hydrocephalus conditions. 3.4 Target Population TC "3.4 Target population" \f C \l "1"  Population is very important in research methodology. From the population sample size is drawn which normally used in research methodology. Population is a group of people or things with common characteristics. According to (Kothari, 2004) a population in research is the totality of the objects under investigation while a sample is a part of the population. The study used parents with children with hydrocephalus, doctors, social workers, nurses and other medical personnel at MOI hospital. 3.5 Sampling Size and Sampling TC "3.5 Sampling size and sampling" \f C \l "1"  3.5.1 Sample Size TC "3.5.1 Sample size" \f C \l "1"  A sample size is normally obtained from the population. According to (Cohen, Manion and Morrison 2000) a sample size is a small group or subset of the population, which researcher selects for the purpose of the study and from which generalization is made about the characteristics of the population. This implies that a researcher should know the population first then a sample size can be easy obtained. There were a number of parents with hydrocephalus children in MOI. There were also certain parents who were out patients. Nevertheless, admissions per month ranged from 20 to 30. Thus as a sample it was decided purposely to use 50 parents, which is equivalent to admissions of 2 months in order to get a very detailed collection of data on hydrocephalus condition. In relation to the doctors, nurses and social workers gain15 peoples were selected purposively, since the number working with hydrocephalus children is very limited. 20 members were selected from the communities. The sampling distribution is provided in Table 3.1. Table 3. SEQ table_3. \* ARABIC 1: Distribution Respondents and Sample Size S/NSampleFrequencies1.Parents with Hydrocephalus children 502.Medical officers at Muhimbili Orthopaedic I Institute (MOI)53.Nurses54.Social workers55.Community members20 Total85Source: Field Data, (2016) In our opinion, the data that would be gathered from this sample was adequate for the study. 3.6 Data Collection Techniques TC "3.6 Data collection techniques" \f C \l "1"  It is argued that for a research to deliver the desired and reliable results, more than one data collection methods must be used. The significance of using combination of data collection techniques is emphasized since no single technique is necessarily superior to any other (Kalton et al, 1971). Effective information gathering is the most basic perspective-widening tool an effective leader requires. Good quality information marks out the context in which the leader operates, creates the information patterns from which ideas emerge, and provides the criteria by which ideas are screened and assessed (Mindtools, 1995). The study used three data collection methods, namely questionnaire, interview and observation for primary data collection. Secondary data was gathered through the study of records in MOI and elsewhere and other reports. 3.6.1 Primary Data TC "3.6.1 Primary Data" \f C \l "1"  3.6.1.1 Interviews A series of questions or topics asked by a researcher directly to a person and the answers are recorded by the researcher (Moore, 2001). A simple approach in collecting data is interviewing. It can be defined as getting an answer from a respondent by asking him several questions based on our area of interest. It can be face-to-face through oral or verbal communication between a researchers and respondents, it can also be conducted via telephone or online (Sekaran, 2000). Interview was used to .collect data from Doctors, Social workers and other medical practioners. Interview was purposively used for these category of people because of its capacity to genarate more data as well as giving and getting clarification from respondents is possible. 3.6.1.2 Questionnaires Questionnaires are research tool designed to gather information from Respondents. According to Kothari, (2004) a questionnaire is a research instrument and consists of a group of questions designated to elicit information from an informant to a respondent. However, according to Patton, (2002) questionnaires are commonly used instruments to obtain important information about the population; the method uses questions in order to gather information. The method helps the researcher to collect data at hand, and gets a lot of information on the problem under investigation. Questionnaires are inexpensive way of gathering data from large number of respondents and are only feasible way to reach a number of reviewers large enough to allow a statistically analysis of the results (Yin, 2003). Questionnaires was solely used for collecting data from parents with children with hydrocephalus. In somecases were children were able to express themselves the researcher paved the way for them to fill the questions as well as observing their life experiences. 3.6.1.3 Observations Observation is a primary tool of scientific enquiry. It is increasingly employed in social science research as in physical or natural science researches. For instance the anthropologists observe the activities, folk ways, modes of tribal-people,psychologists observe the psychological behaviour of children and adult,sociologists observe the various aspects of a community,and educationists observe the social situation,such as intaration. Observation means acquiring knowledge through the use of sense organs. In the strict, it implies the use of eyes rather than the ears and the voice.Observation is not merely seeing things or activities or situations. It is watching minutely,slowly and systematically the occurrences with a purpose in a given Situation with a view these children are treated and their living environment. 3.6.2 Secondary Data TC "3.6.2 Secondary Data" \f C \l "1"  Secondary data were collected from archives at the MOI. They included reports from members of staff and doctors, nurses and social workers working wih hydrocephalus children. Data on daily admissions were compiled from admission records and progress on the health of individual hydrocephalus children was provided. Other data included reports from meetings and other published and unpublished papers. 3.7 Data Analysis TC "3.7. Data analysis" \f C \l "1"  Data collected was cleaned, coded and analaysed. Quantitive data was analysed using Statistical Packages for Social Science (SPSS version 22) and in certain cases excell was used. Qualitative data was cleaned and analysed according to each specific objective. SPSS was purposively used because of its capacity of allowing different analytical outputs for different findings. Bar graphs, frequency tables, cross tabulations table and pie chart were used to depict the findings of each study question in relations to study objectives. 3.8 Reliability and Validity TC "3.8 Reliability and validity" \f C \l "1"  Reliability has to do with how someone will answer the same question overtime (Mbamba, 2012). Morgan and Waring (2004), define reliability as a state that exists when data are sufficiently complete and error free to be convincing for their purpose and context. Since data were analyzed to give correct research data input, the respective findings or outputs were subjected to a reliability test. The researcher applied SPSS, Cronbachs Alpha numerical coefficient or reliability tools for assessing the reliability of scales. This aided determination of internal consistency or average correlation of items in a survey instrument aimed at gauging reliability. Computation of alpha was based on reliability of a test relative to other tests with the same number of items, and measuring the same construct of interest (Morgan and Waring, 2004) Alpha coefficient ranged in value from 0 to 1 and was used to describe the reliability of factors extracted from dichotomous (that is, questions with two possible answers) and/or multi-point formatted questionnaires or scales (i.e., rating scale: 1 = poor, 5 = excellent). The higher the score the more reliable the generated scale, where 0.7 is an accepted reliability coefficient. Forza (2002) quoted Nunnally who stated that new developed measures can be accepted with  = 0.6 otherwise, 0.7 should be the threshold with  = 0.8 is very reliable. In this study, reliability was conducted using Cronbach s Alpha test using SPSS. Reliability measure of 0.744 was found, which implies that the data are very reliable and above the minimum of 0.7 set by the rule of thumb. 3.9 Research Ethics TC "1.8 Research Ethics" \f C \l "1"  The study was managed by legal and ethical considerations. Most of the expected patients are children; therefore, every effort was made to protect the children, especially by designing questions which would not traumatize them. Efforts were made to ensure that privacy of the respondents is maintained and honored. The researcher sought permission from respondents on the provision of their information.The study ensured that confidentiality of the data is maintained, as well as the privacy of the subjects. CHAPTER FOUR TC "CHAPTER FOUR" \f C \l "1"  DATA PRESENTATION, ANALYSIS AND DISCUSSION  TC "DATA PRESENTATION, ANALYSIS AND DISCUSSION" \f C \l "1"  4.1 Introduction TC "4.1. Introduction" \f C \l "1"  This chapter presents data, findings, analysis and discussions.The finding is catagerorized into two parts: The first presents descriptive findings (respondents personal particulars) and the second part findings for each study objective. 4.2 Social Demographic Factors of the Respondents TC "4.1 Social demographic factors of the respondents" \f C \l "1"  This part shows the demographic factors of the respondents particulary children with hydrocephalus.These findings are crucial in determining the true situation of the children and their parents.They aided in providing the ages of the respondents, education, family income levels, average number of children as well as histrically background of families. The findings are presented in the sub sections below: 4.2.1 Distribution of Respondents by Age TC "4.1.1 Distribution of respondents by age" \f C \l "1"  Parents with children with hyrocephalus were requested to give the ages of their children (child) with the intention of determining distribution of these children in respect of their age levels. Findings is shown in the Table 4.1. Table 4. SEQ Table_4. \* ARABIC 1: Distribution of Children with Hyrocephalus According to their Age Age of ChildrenFrequencyPercentValid PercentCumulative PercentBelow 5 Year Old3672.072.072.0Between 5 - 10 Years old816.016.088.0Between 10 to 17 Years old612.012.0100.0Total50100.0100.0Source: Field Data, (2016) Table 4.1 shows that 36 (72%) of all children who were involved in the study were under the age of 5 years; 16 (16%) were between 5 to 10 years old and few of them 6(12%) were between 10 to 17 year old. Findings implies that majority of children with hyrocephalus ranges are aged below 5 years.In the course of data collection one of the doctors explained that: They usually die earlier because of being neglected by their families and the community. And they often do not get any medical treatment. Thus the statement reflects low life expectancy (high child mortality rate) of the hydrocephalus children, due to the little attention paid to these children as well as limited knowledge on how to manage the condition of these children.This is inline with the study conducted by Pallant (2014) where Tanzania was ranked 27 in the world average with high under 5 years mortality rate between 130 and 150 per 1000 live births. The study also showed that recently under 5 mortality rate have been substantially reduced; but failed to reach Millenium Develepoment Goal 4 (MDG) targerts 4 to 6. Thus the data from field plus other secondary sources show that despite the fact that the child mortality rate is high, yet the problem is much worse for children with hyrocephalus than others. 4.2.2 Number of Children with Hydrocephalus within the Family TC "4.1.2 Number of children with hydrocephalus within the family" \f C \l "1"  Respondents were asked to indicate number of children with hydrocephalus within their families. The intention was identify the magnitude of the problem to the respondents involved under the study and also to find out if there was genetic disorder within the family inherited from their ancestors. Findings is shown in Table 4.2. Table 4. SEQ Table_4. \* ARABIC 2: Number of Children with Hydrocephalus within the Family Number of Children FrequencyPercentValid PercentCumulative PercentOnly One4794.094.094.0More than one 36.06.0100.0Total50100.0100.0Source: Field Data, (2016) Table 4.2 shows that 47 (94%) out of all respondents who were involved under the study confined only one child while 3 (6%) had more than one child with hydrocephalus in their families. Although only 6% of the families has more than 1 child with hydrocephalus, the findings affirm the findings of  HYPERLINK "https://www.sharecare.com/doctor/dr-aria-fallah" .Fallah (2013) which showed that congenital hydrocephalus can run in families. It is thought that congenital hydrocephalus can be caused by genetic defects that can be passed from one or both parents to a child; but the direct links to hereditary disorders are still being investigated. However, experts have found a connection between a rare genetic disorder called L1 syndrome and hydrocephalus. L1 syndrome is the result of mutated gene. It can cause a condition known as aqueduct stenosis, which involves an obstruction of the flow of cerebrospinal fluid (CSF), which is a fluid that is necessary for the normal functioning of the brain and spinal cord. This obstruction of the CSF can cause hydrocephalus. Researchers estimate that L1 syndrome occurs 1 in 25,000 to 60,000 males and rarely occurs in females. 4.2.3 Whether the Children were Enrolled at School TC "4.1.3 Whether the children were enrolled at school" \f C \l "1"  Respondents were asked to indicate whether they managed to enroll children with hydrocephalus in primary schools or rather to any kind of formal education entity. The intention was to assess the extent to which these children get opportunities to participate in the formal learning process. Findings are presented  TC "Figure 4.1 whether enrolled at school" \f F \l "1"  Figure 4. SEQ figure_4. \* ARABIC 1: Whether Enrolled at School Source: Field Data, (2016) Figure 4.1 shows that 48 (96%) of all children who were involved under the study were not enrolled at school and 2 (4%) were enrolled.Thus the implication we can derive from this findings is that majority of children with hydrocephalus never get opportunity to be enrolled at various schools. In the course of data collection one of the parents commented that. We never enrolled him at school because of his condition, he cannot get used to the normal. Thus, the above statement shows that their condition is considered as the key impeding factor towards enrolling them to school. The researcher was interested to get more medical insight from various doctors during the data collection. Views from the doctor was as follows Despite the fact that they have slow mental development and vulnerable to various diseases but yet they can be enrolled at school. View from doctor seems to be strong over feelings of parents. Thus the enrolment of children with hydrocephalus needs special school under special programs and cares. Government must look for possibility of creating schools that cater for hydrocephalus children and other people with different needs. It is obvious that their life condition, status, appearance and society attitude deter parents from enrolling their children in normal schools. Low life expectancy is also considered as the key impending factor towards enrolling these children at various schools. One doctor says that in the past nearly 80% of children with hydrocephalus did not live beyond two years (New vision, 2012). 4.2.4 Monthly Family Income TC "4.1.4 Monthly Family Income" \f C \l "1"  Household incomes of parents with hydrocephalus children were investigated in order to ascertain the relationship between income size and life condition of children with hydrocephalus. Findings are shown in the Table 4.3. Table 4. SEQ Table_4. \* ARABIC 3: Family Income (Monthly) Monthly Family Income (Tsh.)FrequencyValid PercentBelow 100,0004386.0Between 100,000 -300,000510.0Above 300,00024.0Total50100.0Source: Field data, (2016) Table 4.3 shows distribution of income among respondent included under the study to be, 43 (86%) earn income of less than 100,000 per month. 5 (10%) come from families with income between 100,000 to 300,000 and 2(4%) come from families with income above 300,000 per month. The implication we can drive from the above findings is that majority of children with hydrocephalus comes from families with income level below 100,000 meaning that majority of these children are come from low income income families reflecting poor living conditions. Limited income may be among other factors key impeding factor towards taking good control of these children.This gives alert to the government to prepare good mechanisms of taking control not only children with hydrocephalus but also children with other abnormalities. 4.2.5 History of Having Children with Hydrocephalus (Both Parents) TC "4.1.5 History of having children with hydrocephalus(Both parents" \f C \l "1"  Respondents were also asked to indicate whether their is history of having children with hydrocephalus with the intention of determing possibility of inhering this problem from either of the spouse.,Finding is showing on Table 4.4. Table 4. SEQ Table_4. \* ARABIC 4: History of having Children with Hydrocephalus (Both Parents) FrequencyPercentValid PercentCumulative PercentYes, My family12.02.02.0Yes, Husband's side12.02.04.0Not at all1938.038.042.0I don't know2958.058.0100.0Total50100.0100.0Source: Field Data, (2016) Table 4.4 shows that hydrocephalus child in the history of their family 1(2%) agreed to be have heard it from the husbands side. On the other hand 19(38%) of all respondents showed that it has never ever happened to their familys and 29(58%) were completely unaware of it. Thus the implication we can drive from the above findings is that largely the problem did not result from inheritance. Although rare, hydrocephalus can be inherited genetically or may be associated with developmental disorders, including spina bifida (congenital defect of the spine) and encephalocele (hernia of the brain). 4.3 Findings According to Specific Research Objectives TC "4.2 Findings according to Specific Research Objectives" \f C \l "1"  In this part the findings from each specific objective are presented. Recall the study was guided by four specific objectives that were intended to examine the extent to which parents and community are aware with hydrocephalus condition; to look on the extent to which social workers intervened into the issues related to hydrocephalus children and their families and communities; to investigate key impediments facing children/familes with hydrocephalus children; as well as to examine society responses towards the problem of hydrocephalus children (perception and attitude towards these children) and their families. Findings per each study specific objective are shown in the following explanations below: 4.3.1 Parents and Community Awareness with Hydrocephalus Children TC "4.2.1 Parents and community awareness with hydrocephalus children" \f C \l "1"  The first specific objective was intended to assess the extent to which the public is aware with the hydrocephalus children.Specifically the study intended to examine whether parents had heard about this problem before,where did they heard about it,whether managed to attend an awareness session on it.Findings is showing on the sub sections below: 4.3.1.1 Whether they have Ever Heard about Hydrocephalus Children Before TC "4.2.1.1 Whether they have ever heard about hydrocephalus children before" \f C \l "1"  Respondents were asked to to indicate whether they ever heard about children with this problem before.The rationale behind this was to understand their experiences or knowledge on hydrocephalus children. Findings are shown in Figure 4.2.  Figure 4. SEQ figure_4. \* ARABIC 2: Whether they had Ever Heard about Hydrocephalus Children before this Child was Born Source: Field Data, (2016) Figure 4.2 shows that 11 (22%) of all respondents who were involved under the study had heard about hydrocephalus children.On the other hand 39 (78%) had never heard about it. The implication we can derive from this finding is that majority of citizen are unaware of this problem. One parent commented: I had never heard about it until I got this baby. I thought it was something related to witchcraft. I am unaware of this problem. I still need more time to understand it. I still need more explanation. Thus, the findings indicate that even those parents with hydrocephalus children are still not well informed about the circumstances behind the delivery of babies with hydrocephalus. The comment is a clarion call on the Government and other organizations to sensitize communities on the problem of hydrocephalus children. It might not be surprising to find out that this family still considers the child with this condition to be a result witchcraft. There is need for public awareness and funding to reduce brain damage and death rates of children suffering from hydrocephalus. 4.3.1.2 Sources of Information on Hydrocephalus to Respondents before they Had a Baby with such a Condition TC "4.2.1.2 Sources of information on hydrocephalus to respondents before they had a baby with such a condition" \f C \l "1"  Respondents were requested to indicate the source of information on the thydrocephalus children before having them in their families. The rationale behind these was to identify which source is mostly used to get information and the information gap available that needs to be covered in the future. The findings are shown in Figure 4.3.  TC "Figure 4.3 Sources of information on hydrocephalus to respondents before" \f F \l "1"  Figure 4. SEQ figure_4. \* ARABIC 3: Sources of Information on Hydrocephalus to Respondents Before Source: Field Data, (2016) Figure 4.3 shows that 5(45%) out of all respondents who heard about hydrocephalus children learnt about it from friends, 3(27%) from the media, 1(9%) from family members and 2(18%) from others sources. Thus findings shows that word of mouth played a big role in informing the public. However media seems to lag behind on this. Findings show that usage of media and social networks may be a good way of sharing various information. A well informed community can be in good position of handling and caring these children. Paradoxically, they are often exposed to both family and other hostile community environemnts in which they need support from all of them. Community awareness should not only be directed to family members who live with these children but also to the genaral public. 4.3.1.3 Understanding of the Basic Requirements of these Children while Taking Care of Them TC "4.2.1.3 Understanding of the basic requirements of these children while taking care of them" \f C \l "1"  Respondents were asked to indicate if they understand the basic requirement for taking care of hydrocephalus children. The rationale behind this was to see the extent to which these family are well equiped in serving their children. The findings are shown in Figure 4.4. Findings from Figure 4.4 show that only 9 (18%) and 41 (82%) of all respondents who were involved under the study said that they did know thw basic requirements of hydrocephalus children in taking care of them. One of the parents lamented: I handle them as other normal children. But under certain circumcistances they seem to have different behaviour and growth rate unlike other children.  Figure 4. SEQ figure_4. \* ARABIC 4: Understanding of the Basic Consideration in Taking Care of these Children Source: Field Data, (2016) Thus, the findings imply that there is a big challenge from the family perspective that need to be paid attention by social welfare practioners as well as government medical cadre in ensuring that at the moment these children are born their parents are well trained on all basic requirement and ways of handling them. Those who managed to mention few basic requirement in taking care of these children insisted on being close to them. It was observed that majority of parents do not know that the greatest risk for shunt infections occurs within the first three months following surgery. Patients receive perioperative intravenous antibiotics to help prevent the development of infection. Statistically, approximately 3-12% of patients will develop a shunt infection, with premature and low-birth weight infants being at greatest risk (Casey et al., 2011). Understanding these potential infections and ways of preventing their occurrence is the most important factor in taking care of these children. 4.3.1.4 Whether Parents Managed to Attend any Awareness Session TC "4.2.1.4 Whether parents managed to attend any awareness session" \f C \l "1"  Respondents were asked to indicate whether they had ever attended any awareness session on how to take care of hydrocephalus children. The rationale behind this was to identify the extent to which these parent are informed about various skills of handling these children. The findings are presented in Figure 4.5.  TC "Figure 4.5 Whether parents had attended any awareness session" \f F \l "1"  Figure 4. SEQ figure_4. \* ARABIC 5: Whether Parents Had Attended any Awareness Session Source: Field Data, (2016) Figure 4.5 indicates that 1 (2%) of all respondents had ever attended an awareness session on basic requirement required to handle hydrocephalus children. The rest 49 (98%) had neither attended a formal or an uninformal session on how to handle these children. One of the parent commented that: I have been attending clinic for some time but non of the issues has been explained to me.The issue of explaining to me about the condition and ways of handling the children is unclear and seems to be new and is not prioritized by almost all nurses and doctors. The other parents commented that, I never attended clinic until I got this baby. I took it as a normal way of life since I got the first baby without being to any clinic for check up. Thus,the implication we can drive from the above findings is that largely health tips on the hydrocephalus issue is not well understood by mothers as well as not paid the deserved attention by the medical and social welfare practioners. Limited awareness among parents on how to take care of these children is deemed as the key impeding factor towards ensuring they get deserved service and well as the problem being minimized. In some countries they have set a special month for National Awareness Campaign on hydrocephalus. In USA every September there is National Awareness Campaign. The advertisement below is the case in point: Seven States Join Congress in Declaring September Hydrocephalus Awareness Months Local volunteers joined forces with elected state representatives in connecticut New York Tennessess, Virginia, South Carolina, Colorado andIllionois to proclaim September as Hydrocephalus Awareness Month. Source: Hydroassoc (2013) The communties need to be sensitized on how to prevent the occurrence of hydrocephalus and spinal bifida as well as educating them on how to take care of these children. This will ensure that basic rights of these children are observed within the family and community avoiding unnecessary discriminations. Well informed society will treat these children with great care, sympathy and affection. 4.3.2 Social Work Intervation Related to Family/Community with Hydrocephalus Children TC "4.2.2 Social work intervation related to family/community with hydrocephalus children" \f C \l "1"  The second study objective was to assess the extent to which social workers intervention in various aspects of assisting these children and families. The rationale behind the inclusion of this part in the study was to see the role of this social welfare practioners in ensuring these children are well taken care off as well as taking advisory role to them to ensure the problem is minimized and utlimately resolved. The findings is shown in the following parts below. 4.3.2.1 Advice/any Assistance from Social Workers TC "4.2.2.1 Advice/any assistance from social workers" \f C \l "1"  Respondents were asked to indicate whether they had received any advice or assistance from social workers practioners. The findings are given in Figure 4.6.  TC "Figure 4.6 Social work intervention to community with hydrocephalus children" \f F \l "1"   Figure 4. SEQ figure_4. \* ARABIC 6: Social Work Intervention to Community with Hydrocephalus Children Source: Field Data, (2016) Figure 4.6 shows that only 1 (2%) of all respondents who were involved under the study had met social workers and received advice while 49 (98%) had not had a chance to meet social workers for neither education nor any assistance. One of respondent retorted: Who are these social workers? What are they doing? I never even heard about their existence and what do they do? Thus, the findings and comments from the respondents shows that majority of these social workers are not close to these families either knowly or unknowingly. Social workers are expected to help patients and their families understand a particular illness, work through the emotions of a diagnosis, and provide counseling about the decisions that need to be made. Social workers are also essential members of interdisciplinary hospital teams. Working in concert with doctors, nurses, and allied health professionals, social workers sensitize other health care providers to the social and emotional aspects of a patients illness. Hospital social workers use case management skills to help patients and their families address and resolve the social, financial and psychological problems related to their health condition (Gibelman, 2011). Only one parent who managed to get assistance from social workers agreed to have been advised on best practice of taking care of the child. The researcher was interested to get more insight on why only one respondent out of all who were involved under the study. She went on to explain: One of our neighbors is a social worker. So after discovering that we had a hydrocephalus child, he began to pay regular visits and gave us advice on various aspects of managing the problem, social tips to be taken into account and encouraging us to not give up as the problem can be resolved. The answer given clearly explains that it was a mere coincident that a social worker well informed on the subject matter happened to be a neighbour. As a result advice was given to them. It was a result of closeness (neighbour) relationship rather than job requirement. There is a large gap in educating communities on hydrocephalus in particular from the social workers profession. Strong meausres are needes to bridge this gap. 4.3.2.2 Respondent Wishes on what should be Done by Social Workers TC "4.2.2.2 Respondent wishes on what should be done by social workers" \f C \l "1"  Respondents were asked to indicate what do they wish to be done by social welfare practioners in the course of taking care of their children.The intention was understand parents needs that need to be covered by social workers.Findings are provided in Table 4.5. Table 4. SEQ Table_4. \* ARABIC 5: Respondent Wishes on what should be Done by Social Workers FrequencyValid PercentEducating1530.0Moral support814.0Arranging for resources/funds to finance medications,510.0Being close to our families48.0Evaluation of patient and families716.0Facilitating decision making on behalf of patients and families;612.0Educating hospital staff on patient psychosocial issues;510.0Total50100.0Source: Field Data, (2016) In Table 4.5 major service demands by communities and families from social workers are given. 15(30%) of respondents expected social workers to impart knowledge to the community and patients on the problem. One parent stressed, This problem is new to us. Hence educating us and the general public should be the top priority. In this respect education was rated the top most need of parents, families and communities from social workers, followed by moral support 8 (14%), evaluation of patient and families 7 (16%), provision of resources/funds to finance medication 5(10%), educating hospital staff on patient psychosocial issues 5 (10), being close to families 4(8%) with hydrocephalus. Thus social workers are expected to play vital role in supporting, encouraging and identifying problems facing these families. Evidence shows that the involvement of social workers in patient care, treatment and well being effectively improves care and outcomes. Their role provides greater citizen understanding of personal health management, including prescribed medication purposes and processes and increases attendance at physician appointments (Miles, 2011) The demand for social workers to meet the increased health-care needs in Tanzania is also growing, highlighting the importance of the education and training social workers receive. In general it is observed that there is a wide gap between social workers and community that they are obliged to serve. Social workers must increase their closeness to communities, particularly with people with various abnormalities like hydrocephalus children, albinism and other children exposed to challenging enviroments. 4.3.3 Challenges Facing Hydrocephalus Children TC "4.2.3 Challenges facing hydrocephalus children" \f C \l "1"  The third study specific objective was aimed at determining key challenges facing hydrocephalus children. The rationale behind this was to identify the key social impediments, particularly those related to the physical, medical and mental health of these children. The results are given in the next subsections. 4.3.3.1 Whether Respondents Faced any Challenges TC "4.2.3.1 Whether respondents faced any challenges" \f C \l "1"  Respondents were asked to indicate whether they were any problems in taking care of their children. It was found that all 50(100%) parents were facing a lot of challenges. One respondent remarked: Within a week of being born prematurely in 2014, our baby was not just fighting to breathe without a ventilator, but he was battling for his life. He was born 3 months premature, and while he was in the Muhimbili National Hospital in Intensive Care, we did know early on that he had hydrocephalus. Since we had never experienced, neither expected it That was about a week or two after he was born, we found out. Thus as observed it this part that all 50 (100%) respondent who were involved under the study agreed to have undergone certain challenge in the course of taking care of hydrocephalus children. Thus attracted researchers attention to search for challenges facing these children as explained in the subsequent sections. 4.3.3.2 Key Challenges Facing Hydrocephalus Children TC "4.2.3.2 Key challenges facing hydrocephalus children" \f C \l "1"  Respondents were requested to list key challenges facing hydrocephalus children with the intention of identifying mostly predicaments faced by these children. Findings are shown on the Table 4.6. Table 4. SEQ Table_4. \* ARABIC 6: Key Challenges Facing Hydrocephalus Children FrequencyValid PercentParents delay to admit their infect children48.0Neglected by others918.0Killings48.0Hide them816.0Discriminated by society1122.0Divorce/Separation714.0Decline in family income36.0Low society awareness24.0Limited support24.0Total50100.0Source: Field Data, (2016) Table 4.6 shows that the following are key challenges facing hydrocephalus children. (i) Parents delay to admit their infect children 4(8%) of all the respondents thought that, parents usually delay sending their children to hospitals because they fear being marginalized by the society. More than one of the parents commented that; I never sent my son to hospital until his the condition became critical. I thought this was just a normal disease that could be cured at home. Thus findings imply that parents do not take positive responsive part in admitting the case to the respective hospital until they found no alternative. This was also affirmed by Doctor Shebang of Muhimbili National Hospital, He commented that. Babies that come late do not do so well. We can save their lives, but their outcomes will not be so good, This indicates how serious the problem is that need joint effort of not only of the family members but also the government and non-governmental organizations. (ii) Neglect 9 (18%) of all respondents who were involved under the study showed that their children are neglected by not only the society but even the members of the family. Neglecting them implies that they never get the deserved attention like others children; hence, they feel lonely and are not important in the community. Due this most parents fail to take their babies for follow-ups after surgery, which is very important in the first year after surgery. As a consequence the head continues to grow and becomes very massive posing a serious management dilemma (Wilson, 2010). (iii) Killings of hydrocephalus children 4(8%) of all respondents pointed out that there is always a lingering threat from few member of the community who knowningly or unkonwnly cause death to the children. Some bad traditional beliefs curse these children to be a curse or bad omen. The solution, under the circumstances, is to kill the child and thereby get rid of this curse. The executios are usually carried out secretly and remain within the family. One of the parents sorrowfully reminesced: After getting my baby my uncle told me to prepare a place for burying my baby, since anytime within 7 days he will pass away. This shows how society and particulary family members havea negative attitude towards children with hydrocephalus. hence after having them in the family they lose hope are resigned to the worst. (iv) Hiding Hydrocephalus Children 8 (16%) of respondents agreed that hiding hydrocephalus children from the general public was a very prevalent practice. Parents and family members felt that it was a punishment from God. This observation is supported by a report by Dr. Osman Kuloloma on the Tanzania Today daily news webiste which said that despite the aid given by GSM to support these children yet few of them attended clinics: Akiongea na Channel ten katika hospitali ya rufaa ya mkoa wa Morogoro daktari bingwa wa magonjwa hayo, Osman Kuloloma, amesema ameshangazwa na idadi ndogo ya wazazi kuwaleta watoto wao kupata matibabu hayo wakati takwimu zinaonyesha kuwa kuna wagonjwa wenye matatizo ya vichwa vikubwa na migongo wazi zaidi ya 4000. Kwa upande wao baadhi ya wazazi walijitokeza kupata huduma hiyo ya matibabu ya vichwa vikubwa na migongo wazi wamesema kuwa tatizo hilo limekuwa likiwatesa watoto na kuwasababishia kuugua mara kwa mara huku wakiwataka wazazi wenzao kutowaficha watoto wao kwani ugonjwa huo unatibika. Source,http://www.tanzaniatoday.co.tz/news/wazazi-waficha-watoto-wenye-matatizo-ya-vichwa-vikubwa. The translation for the above Kiswahili comment is: Talking to Channel Ten TV reporters at Morogoro Regional Hospital, Dr. Osman Kuloloma a hydrocephalus specialist, remarked that he was surprised at the low turn up of children with hydrocephalus condition, although statistics indicate that there are more than 4000 hydrocephalus children and spina bifida in Morogoro. Meanwhile, parents who came for treatment said that the hydrocephalus and spinal bifida had been causing a lot of suffering to children. They called upon other parents with similar children to come forward and get treatment. The snipped phrase above shows that despite of having large number of hydrocephalus children in Mororgoro Region, yet very few of them came out to receive free medication. Morogoro Region has more than 4000 cases of hydrocephalus children. (v) Discrimination by the society 11 (22%) of all respondents in the study said that, their children were being disciminated by not only people outside their families but also within their family members. This is undesirable and unconstitutional; it needs Government and private sector interventions, particularly social work interventions, in providing education and regulatory frameworks for combating these inhuman acts, as provide in .Article 13(1) of the United Republic of Tanzania Constitution of 1977. So how can rights of children and their parents, especially mothers are protected? One woman lamented: When I gave birth to this child everyone, including my husband, discriminated against me and my baby. My husband rebuked me saying that this kind of a child emanated from my clan. Therefore, I have to take it as my personal problem and I should count him out. This clearly indicates that the magnitude of the problem is larger than one can image. In the Tanzania Disability Survey (2008) it was reported that peoples negative attitudes towards parents and caretakers of disabled children and the problems faced at home, school and the endemic experiences of discrimination are well entrenched in the society. Of the respondents asked on the frequency or preponderance of discrimatory acts, 22 percent reported some kind of negative attitude at home; the frequency of incidences ranged from always (1.8 percent), often (9.8 percent), sometimes (2.8 percent) and seldom (7.6 percent). The situation was more or less the same at school. Seven percent (7%) of respondents reported some kind of prejudice or discrimination. The same patterns are observed for Mainland and Zanzibar, (Statistical Commission, Report on the Special Session, 2008). Often such disabilities result in discrimination and the actual hiding of children in the back areas of the home. That being the state of affairs, it is only by going to the community that such children may be identified and their parents convinced that a better life is possible for them (vi) Divorce/Separation 7 (14%) of all respondents who were involved under the study showed that after giving birth to hydrocephalus children their husband proposed to separate from them contrary to section 67 of the Law of Marriage, 1971 which provides that The parties to a marriage may, by writing signed by each other, agree to live apart and any such agreement, including any provisions as to maintenance, matrimonial property and the custody of the infant children, if any, of the marriage shall be valid and enforceable Moreover some husbands are purported to divorce their wife because of the same issue. Thus husband usually try to run their marital obligations contrary to section 130 of the Law of Marriage. (vii) Low society awareness 2 (4%) of all respondent who were involved under the study showed that their current situation is due to limited awareness among society members who take these children negatively.One of the parent commented that Nikibeba mwanangu kila nnayekutana naye ananishangaa. Meaning that when I am with my child, everyone stops and a gaze at us, wondering what kind of a baby is this. This reaction gives me a hard time. The lack of society awareness on hydrocephalus condition hinders progressive efforts encouraging parents to come out openly and seek medical and social work support. Limited awareness among parents deters efforts of parents to seek society support and promote family unity in the event they get hydrocephalus children. (viii) Limited support and decline in family income 2 (4%) of respondents said that they were getting very little support from the public (material support); in addition, 3 (6%) of respondents were concerned about decline in family income. A lot of time and resources were being spent taking care of the children and paying medical costs. In the study it was observed that the majority of mothers were unable to pay for CT scan and the shunt. Currenlty, every mother of the child with hydrocephalus is required to contribute Tsh. 150,000/= for general medical services and Tsh. 75,000/= for the shunt, In case a mother fails to pay, the mother is detained at the MOI hospital until all charges are paid. On the part of doctors who were interviewed they said that they will continue to offer surgery services to children every year, however, a campaign is needed to ask more Tanzanians to come out and donate to support the initiatives. If support is not forthcoming from within Muhimbili and from people in the country, MOI might be compelled to reduce the number of children it treats. Recently GSM in collaboration with Muhimbili National Hospital decided to offer free medication to these children in various part of the country, Mothers were very grateful for this service. Nipashe July 3rd 2016 reported that: Akina mama wenye watoto walio na matatizo ya vichwa vikubwa na mgongo wazi, ambao wamepata bahati ya kuonana na madaktari hao kwa ajili ya matibabu ya bure ya watoto wao, wameushukuru uongozi wa hospitali ya Rufaa Bugando kwa kukubali huduma hiyo kufanyika katika hospitali hiyo na kuwaomba madaktari hoa kulifanya zoezi hilo kuwa endelevu. Source,http://www.itv.co.tz/news/local/Zaidi_ya_watoto_50_wenye_vichwa_vikubwa_wamefanyiwa_upasuaji The translation for the above is: Women with children with the hydrocephalus and spina bifida, who were lucky to be treated by the visiting hydrocephalus and spina bifida specialists thanked the Bugando Referral Hospital for allowing the specialists to conduct the clinic in the Hospital and appealed to the specialists to make the medical services permanent. This shows that despite of the limited public awareness on hydrocephalus syndrome, the need for medical services is increasingly being sought. In this respect, the efforts by the news media in disseminating the condition are very commendable. According to New vision data on hydrocephalus: 98% of children with hydrocephalus die at the age of two or earlier. These are only data of those who managed to be reported. This gives red light alert signifying danger as regards to the magnitude of the problem. To avert these early deaths the magnitude of the support of these children must be increased considerably to attract more funds to cover family, medical and social work expenses. 4.2.3.3 Parents Responses Towards Challenge Facing TC "4.2.3.3 Parents responses towards challenge facing" \f C \l "1"  Respondents were asked to indicate how do they respond toward the challenge they are facing by having hydrocephalus children.The intention asking the question was to find out the coping strategies of these distressed mothers. Findings are in Table 4.7. Table 4. SEQ Table_4. \* ARABIC 7: Parents Responses Towards Challenges FrequencyValid PercentDoing nothing2142.0Seek support from my family members1428.0Struggling alone1530.0Total50100.0Source: Field Data, (2016) Table 4.7 shows that parents tend to respond into three different ways: (i) Doing nothing The majority of parents 21 (42%) were helpless. They complained that they could not meet all the medical and other essential requirements needed by their children because of the high cost and limited income, which was also be eroded. One of the parents commented that: I have spent all my family income and servings in order to take care of my baby, I dont have any other income; so what I am doing is very rudimentary. We are just trying to survive. What can I do now? I have left it to God. Findings implies that large percentage of these parents have lost hope due to the fact that, they spend all their time taking care of the children, with no time aside to engage in employment or income generating activities to sustain their life. This calls for government subventions on the treatment hydrocephalus children and family upkeep. (ii) Seek support from my family members 18(28%) respondents were getting or sought support of family members. Despite of the limited assistance from various people, family members were always there to support them. (iii) Struggling alone 15 (30%) of all parents who participated in the study were struggling alone. The support from other sources was very limited. It is more likely that these parents were being discriminated by their own families and community around them because of their hydrocephalus children. Again this gives an alarm to the government and the general public on the gap that they need to cover in the course of helping these children and their families. 4.3.3.4 Respondents Satisfaction with Service Offered by MOI TC "4.2.3.4 Respondents satisfaction with service offered by MOI" \f C \l "1"  Respondents were asked to rate their satisfaction levels from not satisfied at all to very satisfied with the service offered by MOI using the Likert scale.The rationale behind this was to assess the extent to which these familiy are satisfied with service offered to their children.Findings are shown in Figure 4.7:  Figure 4. SEQ figure_4. \* ARABIC 7: Respondents Satisfaction with Service Offered by MOI Source: Field Data, (2016) Figure 4.7 indicates that 24 (48%) of all respondent who rated the services offered by MOI as average while 11 (22%) rated it as satisfied and 12 (24%) very satisfied. The findings imply that majority of respondents are comfortable with the services offered at MOI. On the other hand, there a small number of respondents who were not satisfied with services; which gives an indication that there is something that that needs to be addressed. The Researcher was interested in getting insight from these few dissatisfied respondents and the pursuit managed to get some more information from them. Their main issue was cost. The cost included the cost of Diagnosis of Hydrocephalus which is done by performing following tests: MRI scans, Physical examination, CT scans and Eye examination followed by The treatment. When hydrocephalus is found by accident like at the time of MRI or CT scan examination done for some other problem and is not resulting in any symptoms. In this case there is a particular treatment for hydrocephalus. Only careful examination and monitoring is required (Wilson, 2010). For instance, in cases of infection antibiotics are given. Surgery is required for clearing up the infection when it do not resolve the hydrocephalus. The surgical procedure for hydrocephalus can remove the cause of the blockage. When there is a condition of temporary hydrocephalus, a surgeon may insert a small catheter to enable the fluid to drain out while the original cause such as bleeding is being resolved. In the case of congenital hydrocephalus, a shunt (a permanent tube) is inserted to drain out the excess fluid (Miles, 2011). All these costs plus others are incurred by the family with very little assistance from the Government and the general public. The other bad thing with MOI is that parents often stay at the hospital for long time waiting for operation that is not well scheduled to enable them to participate in other social economic activities. 4.3.4 Society Responses Towards Families with Hydrocephalus Children TC "4.2.4 Society responses towards families with hydrocephalus children" \f C \l "1"  The third study objective was to determine the extent to which the society responds towards families with hydrocephalus children. The intention was to determine society attitudes, perceptions, feelings and support towards these families. A finding is shown on the sub sections below: 4.3.4.1 Response of the Father of the Child TC "4.2.4.1 Response of the Father of the child" \f C \l "1"  Respondents were asked to show how their husband responded after giving birth to such a child. The intention was to see the level of support offered by fathers to mothers and children after a child is born with hydrocephalus. Respondents were asked to give the first word they heard from their husbands when the husbands realized that an abnormal child has been born. The findings are shown in Table 4.8. Table 4. SEQ Table_4. \* ARABIC 8: Father of the Childs Response Father of Children with HyrdocephalusFrequencyParentsDont worry1135%We are together826%Born misfortune723%Is not my baby516%Total31100%Source: Field Data, (2016) Table 4.8 shows that 11(35%) of all woman respondents said that their husbands were very supportive and reacted sympathetically saying dont worry. 8(26%) of husbands also supported their wives by showing that they are together. On the other hand, 7 (23%) considered the birth of such a child a misfortune and 5 (16%) rejected them. In general 19 (61%) of all mothers interviewed indicated that they received positive responses from their spouses. The rest 13 (39%) received negative responses from their spouses after giving birth to such children. The implication we can derive from the above findings is that largely these children are in many cases accepted and supported by their fathers. However, there is a large number of cases (39%) in which the burden of taking care of hydrocephalus left to the mothers. In certain cases, the husbands reject the children outright. Often the mothers suffer alone and silently under pressure of the daily chores of taking care of the children. Social work services and assistance is absent. The legal role of father as custodian of the family who is obliged to take care of family and if neglected the court can use its power to oblige him as covered under section 130 of the Law of Marriage 1971. The court may at any time order a man to pay maintenance for the benefit of his infant child (a) if he has refused or neglected to adequately provide for him or her. However, the abandoned mothers do not go to courts. The researcher perceives that low awareness on the children rights and family rights are the key impeding factor towards enforcing these legal rights. Moreover all parents agreed that their is no discrimination between children among themselves.They commented that: Children do not discriminate each other on the ground of hydrocephalus. It seems as if they dont undertand it. It is the duty of both parents to treat hydrocephalus children with great affection and love so that they each other appreciate equality within the family and hence strong friendship among themselves. Discrimination adversely affects the development and growth of the children and family bonds. 4.3.4.2 Treatment from Neighbours and other Family Members TC "4.2.4.2.Treatment from neighbours and other family members" \f C \l "1"  Respondents were asked how they are treated by neighbours and other family members outside their residences. The intention was to see how they responded towards the new born babies with hydrocephalus using the Likert five point scale from very well to very bad. Findings are shown in Figure 4.8.  Figure 4. SEQ figure_4. \* ARABIC 8: Treatment from Neighbours and other Family Members Source: Field Data, (2016) When asked how they were being treated by neighours and family members, 7 (14%) said that they were being treated very well, 8(16%) well,7(14%) somehow well,17 (34%) bad and 11 (22%) very bad (Figure 4.8). In general 22 (44%) of respondents said they were being treated well by neighbours and family members while for 28(56%) were treated badly by their neighbours and other family member. One of the parent explained sorrowfully: After giving birth to a hydrocephalus child my neigbours stopped to be close to me as it used to be and began to ostracize me. At that time my young brother was about to get married to one of of neigbours daughter; but after this their family rejected such relation with rumours that they think hydrocephalus can be inherited hence bring misfune in their family; and the marriage arrangement was aborted. The availability of hydrocephalus children within the family is often perceived negatively by the majority of neigbours; and poses many challenges to the already existing relationships. This calls for more public awareness and support towards these families to ensure they are treated with great love and affection by not only their families but even the general public. Moreover at the event when any kind of discrimination is noticed and evidenced ward and village leaders including police should take legal action as well as educating the them on the possibility of any family to have equal chance of giving birth to hydrocephalus child at any time. As the result of this bad treatment these families encounter problems, such as; Stigmatization, isolation, lack of supportive social infrastructure, like special schools for them, as well as threats of being killed. All these challenges can not be resolved by the mothers of these children alone. Community, government as well as various activist groups are needed to not only punish those who mistreat these families but also to educate them so that they understand their roles to them. 4.3.4.3 Respondents Suggestions for Improvement to the Government TC "4.2.4.3 Respondents suggestions for improvement to the Government" \f C \l "1"  Respondents were given a chance to give their suggesstions on what need to be done by the Government, Ministry of Health, Medical practitioners to improve social condition of hydrocephalus children. The rationale behind this was to seek respondents views and expectations on what need to be done by the Government. Findings are shown in Table 4.9. Table 4. SEQ Table_4. \* ARABIC 9: Respondents Suggestions for Improvement to the Government FrequencyPercentMore public education1122.0More public health to serve centers1020.0Government health support1224.0Economic support714.0Special schools with special care1020.0Total50100.0Source: Field Data, (2016) Table 4.9 shows that 11(22%) respondents there was need for more public education, 10 (20%) more public health centers, 12 (24%) more government health support, 7 (14%) suggested for more economic support and 10 (20%) suggested special schools for hydrocephalus children. Thus implies that the society excpects the Government to do more than just contributing part of the cost required as it is now. It is true that due to nature of these children as well as slow learning process if mixed with other children may encourage further discrimination on the ground of slowness in understanding the subjects taught. Government and various government agencies should not completely ignore these views since they hold and matches what what the hydrocephalus children have been facing in their real life. It is, however, strange to note that only a few 7 (14%) considered that economic support is important, given the poor state of families and the demands of the children. Probably, the reason is because people have always depended on themselves rather than the Government. Therefore, economic support for these families is most important, since nearly all their incomes are drained serving these children. 4.4 Findings from Doctors, Social Workers and Ministry of Health Staff TC "4.3 Findings from Doctors, Social Workers and Ministry of health staff" \f C \l "1"  The data for this enquiry was obtained from 5 doctors and 30 social workers and ministry of health staff on their experiences dealing with hydrocephalus children. Their experience is of top most importance in identifying social predicaments affecting these children and their families.Findings are shown in the sub sections below: 4.4.1 Whether Engange in Providing Awareness on Hydrocephalus Children TC "4.3.1 Whether engange in providing awareness on hydrocephalus children" \f C \l "1"  Doctors and social workers were asked to indicate whether they usually provide education to the public on the causes, treatment and the needs of hydrocephalus children. Findings are given in Figure 4.9.  Figure 4. SEQ figure_4. \* ARABIC 9: Whether Engange in Provining Awareness on Hydrocephalus Children Source: Field Data, (2016) The results are as follows: 10(29%) had participated in educating the general public on the hydrocephalus children. 25(71%) said that they have never engaged in educating the general public.Thus on further interviewing them they explained that: We dont have adequate funds to engage in public awareness campaigns. Funds allocated to us are very limited and the process of acquiring funds for sensitization purposes is very tortious and difficult. Thus, the major problem that seems to limit doctors and social workers on educating the public seem to be limited awareness budget allocated to them as well as prolonged procedure required in acquiring such fund. The Government as well as the public should allocate in their budgets and support to enable them to fully educate the society.This will not solve the problem completely but will reduce it and create a strong public support toward children with hydrocephalus. Moreover social workers seem to get chance to participate in educating these children and their parents but their level of participation is hindered by limited budget as well as inadequate training on hydrocephalus children. Social workers identified the following tgo be problem facing hydrocephalus children n their community, limited awareness on how to take care of them, Poor family life standard, Limited health centres for taking care of these children, Staying at the hospital for long time due to lack or shortage of funds for paying medication cost as well as poor transport facilities that limit them from attending to the hospital for close checkups.In response to these challenges social workers and doctors are seeking funds for conducting nationwide awareness campigns. In the meantime, they are using the limited funds to educate the communities.They believe hydrocephalus can be reduced by preparing proactive meachanisms rather than reactive ones. 4.5 Synopsis TC "4.4 Synopsis" \f C \l "1"  The exploratory study on hydrocephalus children was confined to Muhimbili Orthopaedic Institute (MOI) Muhimbili Hospital, where children with this condition are treated. For social work research looking at the problems of these children and their families, and community responses to the advent of these children in their society, the setting for the research at Muhimbili Orthopaedic Institute (MOI) doesnt seem to be very appropriate. On the other hand, travelling around Dar es Salaam City and neighbouring towns and villages in search of hydrocephalus children is a tidious, and to a great extent, not a very fruitful task. It is for this reason that Muhimbili Orthopaedic Institute (MOI) was selected purposively as an arena for the research. At Muhimbili Orthopaedic Institute (MOI) it was possible to meet many children, parents, members from the community, doctors, nurses and social workers who were attached to the hydrocephalus unit. Muhimbili Orthopaedic Institute (MOI) admits 5 to 7 hydrocephalus children in a week and 25-30 children in a month as found in the MOI admission records. In the country Muhimbili Orthopaedic Institute (MOI) is the only place where there are experts in hydrocephalus and spinal bifida. Using questionnaires, interviews and observations and documentary research in the Institute it was possible to satisfactorily answer all the research questions. One of the research questions poised was: Are parents and comunity members aware of the problem? The answer was that most parents and community members knew nothing or very little about malady. As a consequence, when such a child is born in their midst a lot of misconceptions arise. Some of them think that it is a result of witchcraft or a curse; leading to neglect, killings of infants, hiding of the children, discrimination, divorce and separation and limited or no support from the community and Government. The adage that knowing about the problem is half the solution is probably appropriate here. Creation of awareness of the communities on the causes of hydrocephalus and what the condition of hydrocephalus is all about is empowering and enables parents to seek medical help and social work assistance early, thereby enhancing the livelihood of the children and families. Sensitization of communities on hydrocephalus will reduce the number of mortality and morbidity rates of children (Kabeer, 2001) and avert family disintegration and disfunction. Awareness of the problem will engender the erection of structures for service and support of hydrocephalus children. In relation to social work interventions, it was found that there were no social work going on in the country that was related to hydrocephalus children. Even at Muhimbili Orthopaedic Institute (MOI) social workers, doctors and nurses were not explaining to the pattients the causes of hydrocephalus, and the best ways of management of the condition. Social workers were not providing financial and material support to the patients knowing how parents were stressed and desperate. One parent asked, Who are these social workers? I have never heard of them! The treatment the hydrocephalus children and their families get from the public, it was found that it was very bad, although there were some members of the community who were very sympathetic. The incidence of the hydrocephalus child into a family often leads to broken marriages, separation, friendships and in many cases marriage arrangements are aborted because they think that hydrocephalus can be genetically passed from parent to child. As a consequence, hydrocephalus cildren and their mothers spend their lives in isolation, poverty, misery without support from the community or their families. Therefore social work is of paramount importance for sensitization of the communities in order to create more public awareness and support towards these families and ensure that they are treated with great love and affection. Stigmatization, isolation, lack of supportive social infrastructure, like special schools for hydrocephalus children, as well as threats of being killed are challenges that can not be resolved by the mothers of these children alone. Community, Government as well as various activist groups are needed to combat the negative social behaviours and erect infracture that can support hydrocephalus children. This is in line with the ecological model of child and family functioning (Bronfenbrenner, 1999; 2005), systems theory and the concepts of vulnerability and resilience (Werner et al., 1982; Garmezy et al., 1983; Payne et al., 2003;); which suggest that competence development in hydrocephalus children and the adaptation of their families to the daily demands of care of the children are processes that are influenced by both intrinsic and extrinsic factors related to the child and to the ecology of the family and the community as a whole. When both intrinsic and extrinsic factors act in unison in support of the child, then the social economic burden on the parents and family is greatly reduced. CHAPTER FIVE TC "CHAPTER FIVE" \f C \l "1"  SUMMARY, CONCLUSION AND RECOMMENDATIONS  TC "SUMMARY, CONCLUSION AND RECOMMENDATIONS" \f C \l "1"  5.1 Introduction TC "5.1 Introduction" \f C \l "1"  This chapter presents Summary, Conclusions and Recommendations. Lastly, it suggests areas for further study. 5.2 Summary TC "5.2 Summary" \f C \l "1"  The main objective of the research was to investigate the social predicaments faced by children with hydrcephalus. The study was guided by four specific objectives: firstly, to examine the extent to which parents and community are aware of hydrocephalus children; Secondly, to investigate the key impediments faced by children with hydrocephalus; Thirdly, to determine the way the society responds towards hydrocephalus children (perceptions and attitudes) and their families; and Fourthly, to look at the social work interventions. In order to delve into the four key specific objectives the study used interviews, questionnaires, observations and documentary review to collect data. Quantitive data collected were edited, coded and entered into Statistical Packages for Social Science (SPSS) for analysis. Thematic method was used to study the data qualitatively. The study used a sample size of 85 respondents out of which 50 were parents of hydrocephalus children, 5 were doctors, 5 nurses, 5 social workers and 20 members of the public. Information from respondents showed that 36(76%) of the children under the study at MOI were less than or equal to 5 years old; and 47(94%) of the parents were having only one hydrocephalus child. The data collected indicated that 48(96%) hydrocephalus children were not enrolled at school. 43(86%) of all respondents were from low income families with average monthly incomes below 500,000 Tanzania shillings. On awareness of the hydrocephalus problem, 48(96%) of respondents were unaware and had never heard about hydrocephalus children. Specifically the findings for each specific objective are shown below: 5.2.1 Parents and Community Awareness with Hydrocephalus Children TC "5.2.1 Parents and community awareness with hydrocephalus children" \f C \l "1"  The first study objective intended to assess the extent to which the public is aware with the hydrocephalus children findings revealed that 39(78%) of all respondents who were involved in the study had never heard anything about hydrocephalus; 41(82%) said that they did not know the basic ways of taking care of these children; and 49(98.5%) had never attended any awareness session on how to take care of them. The data obtained from the study indicates clearly that the people and communities in general in Tanzania are not aware of the hydrocephalus condition. This could be the reason why it is often attributed to withcraft by many common men. That being the state of affairs, it is advised that deliberate efforts be made to sensitize communities on the hydrocephalus condition. Since it is widespread more doctors, nurses and social workers should be trained on the treatment of the condition. 5.2.2 Challenges Facing Hydrocephalus Children TC "5.2.2 Challenges facing hydrocephalus children" \f C \l "1"  The second study objective intended identify key challenges facing hydrocephalus children. The findings revealed that the following are key challenges facing hydrocephalus children: They are often neglected by others, as a consequences they often live in isolation. Killings of hydrocephalus children, often carried in great secrecy, are rampant. Many families hide them. They are discriminated by society, Divorce/Separation among couples are common. It is accompanied by a decline in family income, Low society awareness as well as Limited support. Their parents tend to respond into three in three different ways: Some respond by doing nothing, others Seek support from family members, and many respond by struggling alone, especially when men leave their partners through divorce or separate or simply run away. 5.2.3 Society Responses Towards Family with Hydrocephalus Child (Children) TC "5.2.3 Society responses towards family with hydrocephalus child (children)" \f C \l "1"  The third study objective intended to determine the extent to which the society responds towards families with hydrocephalus children. Findings revealed that 19(61%) of all mothers who were involved under the study agreed to have received negative response from their spouse. Only 13(39%) were positively supported by their husbands after giving birth to such a child. The bulk 28(66%) of all respondents showed that they were not well treated by their neighbours and other family members. Stigma was cast on their family; and no one wanted to be associated with such a family. Ignorance fortified negative community feelings whose actions led them to seek advise from traditional medicinemen whose advise in many cases led to killings of hydrocephalus children or intake of debilitating local herbs. 5.2.4 Social Work Intervention Related to Family /Community with Hydrocephalus Children TC "5.2.4 Social work intervention related to family/community with hydrocephalus children" \f C \l "1"  The forth study objective intended to assess social workers intervention related to hydrocephalus children. The results of the study revealed that 49(98%) of parents with children with hydrocephalus children never met with social workers. Respondents were expected to receive advice, education, moral and material support, close relationship and evaluation of the status of these children by social workers. In response to questions related to these minumum social work interventions, it was clear that Ministry of Health and Social Work officials were not aware of this problem. As a result whenever doctors, nurses and social workers asked for the funding of these activities there were faced by prolonged procedures. Lack of funds and social worker specifically assigned to hydrocephalus unit are the key impending factors towards the activities of social workers. From the responses of parents it was clear that they were in great need of financial, moral and material support, which falls in the realm of social work. Inspite of the shortage of social workers in Tanzania, there is a need of establishing a unit of social workers specially trained in handling hydrocephalus children. 5.3 Conclusions TC "5.3 Conclusions" \f C \l "1"  Hydrocephalus is a condition of excess accumulation of cerebrospinal fluid (CSF) in the brain which results in an abnormal widening of the spaces in the brain called ventricles. The enlargement and widening of the ventricles increases pressure on other tissues in the brain which is very harmful. The fluid in the ventricular system and citerns ensures that the brain tissue is buoyant, thereby acting as a shock absorber. The CFS also delivers food to the brain, removes waste and compensates for blood flow volumes within the brain. Because CSF is made continuously, any blockage to its normal flow or absorption results in an over-accumulation of CSF and pressure build up. The resulting increased pressure of the fluid against brain tissue is what causes hydrocephalus. Hydrocephalus may be congenital or acquired. Congenital hydrocephalus is present at birth and may be caused by either events orinfluences that occur during fetal development, or genetic abnormalities. Acquired hydrocephalus develops at the time of birth or at some point afterward. This type of hydrocephalus can affect individuals of all ages and may be caused by injury or disease. The causes of hydrocephalus are still not well understood. Hydrocephalus may result from inherited genetic abnormalities (such as the genetic defect that causes aqueductal stenosis) or developmental disorders (such as those associated with neural tube defects including spina bifida and encephalocele). Other possible causes include complications of premature birth such as intraventricular hemorrhage, diseases such as meningitis, tumors, traumatic head injury, or subarachnoid hemorrhage, which block the exit of CSF from the ventricles to the cisterns or eliminate the passageway for CSF within the cisterns. In infancy, the most obvious indication of hydrocephalus is often a rapid increase in head circumference or an unusually large head size. Other symptoms may include vomiting, sleepiness, irritability, downward deviation of the eyes (also called "sun setting"), and seizures. Older children and adults may experience different symptoms because their skulls cannot expand to accommodate the buildup of CSF.Symptoms may include headache followed by vomiting, nausea, blurred or double vision, sun setting of the eyes, problems with balance, poor coordination, gait disturbance, urinary incontinence, slowing or loss of developmental progress, lethargy, drowsiness, irritability, or other changes in personality or cognition including memory loss. Data obtained from this study suggests that the hydrocephalus condition is very prevalent among children from low income families. Most of the women with hydrocephalus children were found not to have attended health clinics during pregnancy and never used any food supplements, vitamins or drugs or got any advise on which types of food to take during pregnancy. In short they were malnourished. Medical research suggests that intake of food supplements with folic acid is essential in ameliorating the birth of children with this condition. That being the state of affairs, sensitization of communities on the importance of attenting clinics during pregnancy should be emphasized. It is advised that as soon as a baby with hydrocephalus is delivered, it should be sent for specialised treatment in a hospital with hydrocephalus treatment and management expertise, in order relieve pain and rectify disorders. The study indicates that most communities are unaware of the hydrocephalus condition. The majority of parents never reported to the hospital because of fearing of how society will look at them. The study found that (up to 7 8 children in a week are admitted at MOI) many children are born with hydrocephalus. And it has been found that most of the hydrocephalus children come from families with low income. It is high time for the government to ensure the children are well known and come out with special health programs, special education, special medication fund as well as special ecomonic support to their families. Society support and understanding of the issues is still a challenge that needs to be taken care of to ensure non discrimination and full support to these families. Limited society awareness, poor life condition, poor social infrastructures, limited budget as well as prolonged procedure of acquiring this budget for social workers and medical practiners are the key issues that need to be addressed by not only the government and social work practioners but also genaral public. Society understanding is considered the top most priority that will pave the way for them to assist and support families with hydrocephalus children.This is not a one night or one year action. Strong policy, legal framework and public involement should be prepared and executed. 5.4 Recommendations TC "5.4 Recommendations" \f C \l "1"  It covers general measures as related to the problems and recommendations for further studies: 5.4.1 General Recommendations TC "5.4.1 General Recommendations" \f C \l "1"  This part covers general recommendations on what can be done to address challenges relating to hydrocephalus. Since it is incurable and unpredictable condition measure are related to how to accept it if happens, measures to reduce its impact and well as treatment are outlined. Public education In the findings it was revealed that not only parents but also the community at large are completely unaware of the condition; the community does not know how to take care of hydrocephalus children as well as main causes of it. This limited awareness leads to discrimination and wrong misconceptions within the families as well as among the society. Education will pave the way for full support and acceptance of the hydrocephalus; and hence provide a conducive environment for them to enjoy better life as normal children. Special Social Infrastructures As observed in the findings, majority of these children need special medical care, special school programs and special social support which are not there to date. These children need special setting to enable them enjoy the full life since they have a slow learning process and need close supervision than others. Failure to prepare these special social infrastructures gives hardship condition to their families as well as to themselves. Special Economic Support There must be a special fund to support them since they use a lot of time to attend therapy and medications; hence parents and family members cannot engage in other social economic activities. Thus, long time invested in medication their economies are perpetually in decline, leading to poverty. Legal Review Article 13 of the United Republic of Tanzania Constitution of 1977 prohibits all form of discrimination, this need to be interpreted in broader perspective to have statutory and regulatory framework that clearly prohibit any discrimination to disabled people. Any form of discrimination must be highly punished and police and social workers should investigate and come up with strict legal actions. Local regulations should be introduced to protect and serve these children. Enabling Social Workers and Village Leaders Social workers and village leaders must be trained on hydrocephalus and other critical health challenges that affect the community as well as providing them with special fund for engaging in various awareness and social control activities. Village leaders should promote provision of social and economic services to the disadvantaged, specifically families with hydrocephalus children. Social workers should stay and work within the communities to identify problems and resolve them. 5.4.2 Recommended Areas for Further Studies TC "5.4.2 Recommended Areas for Further Studies" \f C \l "1"  By considering, conclusion and recommendation of this study it is observed that more studies are needed to uncover more findings on not only hydrocephalus but also other social predictaments. The following are reccomended: More comprehensive studies with a wider scope, on the same subject will be important. This should consider many regions to enable complete generalization of the findings to the whole country. Findings for this study involved those patients that were able to come to MOI Muhimbili Hospital. Surely, there is a large number of children in Tanzania who have not been to access these services. A broad study encompassing hydrocephalus children in various communities will enable the researcher to gain full picture in broader perspectives. Moreover another study can be done to other disabilities and abnormalities. The study will identify social challenges facing the people with the problem and provide a solid picture and avenues for solving it. A study on doctors providing services to children with hydrocephalus is important and will enable the Government to cater for their professional, technical and personal needs. The research will enable policy makers to have compressive view on making national policy and laws as well as determine magnitude of the problem. 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APPENDICES  TC "APPENDICES" \f C \l "1"  Appendix  SEQ appendix_ \* ARABIC 1: Questionnaires for Parents with Hydrocephalus Children Dear Participants, This questionnaire has been designed with the purpose of obtaining information on the challenges facing children with hydrocephalus using MOI as the case study.The study is conducted for accademic purpose as a part of partial fulfillment of the requirements for the Masters degree of social work. Hence your politely requested to fill the questionnaire below with relevant answer to the best of your knowldge.The information filled will be treated with high confidentility and will be used solely for accademic purpose. (A) Respondents personal informations (Tick the most appropriate answer) Age of your child Below 5 years ( ) Betwen 5- 10 years ( ) Above 10 to 17 years ( ) Do you have child (children) with hydrocephalus? Yes ( ) No ( ) If Yes in number 2 above how many children with hydrocephalus do you have..................................................................................................................... Did you managed to enrol them at school? (a)Yes ( ) (b)No ( ) Family income level Below 100,000 per month Between 100,000 to 300,000 per month Above 300,000 per month Do you have the history of having children with hydrocephalus from either your family of the other spouse? ( a) Yes, My family ( ) Yes, The family of the other spouse ( ) Not at all ( ) I dont know ( ) (B) GENERAL INFORMATION (AS PER STUDY OBJECTIVE) Please Fill or tick the appropriate area with the requested informations (B1); Parents/community awareness of hydrocephalus children. Did you ever heard about hydrocephalus before having the child with it: Yes ( ) No ( ) If yes in number 7 above where did you heard about children with hydrocephalus before? From friends ( ) From the media ( ) Within my familiy members ( ) Others Specify.......................................................................................................... Do you know the basic consideration required in taking care of the child with hydrocephalus (a)Yes ( ) (b)No ( ) If yes in number 9 above please list them .......................................................................................................................................................................................................................................................... Did you managed to attend any awareness session on how to take care of the children with hydrocephalus? Yes ( ) No ( ) If yes in number 11 above which awareness session? ............................................................................................................................. ............................................................................................................................. (B2) Possible social work intervation related to family/community with hydrocephalus children Did you managed to get any advice or otherwise any assistance from social workers? Yes ( ) No ( ) If yes in number 13 above what was that advice or assistance? .......................................................................................................................................................................................................................................................... What do you wish to be done by social workers in supporting families with children with hydrocephalus? .......................................................................................................................................................................................................................................................... (B3) Problems facing children with hydrocephalus Do you encounter any challenges in the course of taking care of you child (children) with hydrocephalus,If Yes please mention them .......................................................................................................................................................................................................................................................... How do you respond towards challenges your facing in number 16 above? ............................................................................................................................. What are the most social problems likely to affect your child with hydrocephalus? ............................................................................................................................. How can you rate your satisfaction with service offered by MOI on the current hydrocephalus problem to your child (children) Not satisfied at all ( ) Disatisfied ( ) Average ( ) Satisfied ( ) Very satisfied ( ) If disatisfied/ not satisfied at all in number 19 above account for it? .......................................................................................................................................................................................................................................................... Did you managed to get any of such medical service from any other hospital or medical centre other than MOI? If Yes, mention them .................................................................................... No B4. Society reponses towards families with hydrocephalus children From the moment you managed to get a child with hydrocephalus what was the first word/response from your husband? .......................................................................................................................................................................................................................................................... If you have more than one children how do other children treat the one with hydrocephalus? ............................................................................................................................. How did other family and neighbours treated you and you child? Very wel ( ) Well ( ) Somehow well ( ) Bad ( ) Very Bad ( ) What problem did you encourted from the community after giving birth to a child with hydrocephalus .......................................................................................................................................................................................................................................................... 24.If you be given a chance to meet with government officials, ministry of health or medical prationers what will you tell them to do inorder to improve social condition of hydrocephalus children? .......................................................................................................................................................................................................................................................... Aappendix  SEQ appendix_ \* ARABIC 2: Interview Guide for Doctors, Social Workers and Officials from the Ministry of Health, and Social Services Dear respondent This inteview guide has been designed with the purpose of obtaining information on the challenges facing children with hydrocephalus using MOI as the case study. The study is conducted for accademic purpose as a part of partial fulfillment of the requirements for the Masters degree in social work. Hence your politely requested to fill the questionnaire below with relevant answer to the best of your knowldge.The information filled will be treated with high confidentility and will be used solely for accademic purpose. Your designation..................................................................................................... Professionalism................................................................................................... Do you ever deal with any activities related with children with hydrocephalus?................................................................................................... If yes in number 3 above what was that activities ............................................................................................................................. Do you usually engage in providing awareness to the public on the hydrocephalus ......................................................................................... Do social workers get involved in the activities of managing children with hydrocephalus?........................................................................................................ If no in number 6 above what are the key impeding factor towards educating the public on hydrocephalus?........................................................................................ What ere the key problem facing children with hydrocephalus ................................................................................................................................................................................................................................................................ How do you respond towards problem facing children/families with hydrocephalus ......................................................................................................... Do you think the problem is becoming big or rather declining? ............................................................................................................................. 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How do you manage negative society responses towards children with hydrocephalus ............................................................................................................................. What are you suggestions towards improving health and social welbeing of children with hydrocephalus? ............................................................................................................................. 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