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Thesis (MA. (Clinical Psychology)) -- University of Limpopo, 2014 / The current study explored resilience factors among low-income African families in South Africa, caring for children with Down’s syndrome. Two studies were conducted. In study 1, qualitative data about the family was obtained through semi-structured, one-toone interviews from eight family members, seven females and one male, who described themselves as primary caregivers of the children. Data were thematically analyzed. Themes that emerged from the interviews included perceptions of impoverishment, blaming witchcraft for the ailment, the experience of emotional distress by the main caregiver, caregiver’s lack of social support and sense of isolation, frustration pertaining to the timely reception of state grants, family conflict, fathers’ rejection of Down’s syndrome children, and spirituality. The sample for study 2, the quantitative study, consisted of 36 respondents who were all primary caregivers representing families of children with Down’s syndrome. It first explored possible sources of social support for Down’s syndrome children’s families. Several sources of support were found to be helpful. Personal or children’s physicians, followed by social agencies, were found to be extremely helpful. Yet neighbours, other parents and partners’ relatives were considered not to be helpful at all. Social and parents’ groups and professionals such as therapists, teachers and social workers were perceived not to be available sources of support. Quantitative analysis then used correlation analysis to identify independent variables that can be included in a regression model to predict family satisfaction. The results of regression analysis were complex to interpret. Reframing was negatively related to family satisfaction. Both studies revealed a number of challenges confronting low-income families caring for Down’s syndrome children. Nonetheless, a replication of the findings is recommended.

Advances in medical technologies and changing philosophies of health care have led to a rapid increase in home-based care for children with disabilities. While there are cost savings for health services if children are cared for at home there are extensive additional demands on the time and resources of parents, particularly primary caregivers, who are usually mothers. Previous studies have shown that parents caring for children with disabilities experience considerable stress and increased rates of mental health problems. The present dissertation investigated the impact of caring on the daily lives of parents and in particular, a model proposing factors contributing to parental psychological, social and health outcomes. A preliminary qualitative study found time demands to be a core theme when discussing the consequences of caring, and when describing tasks of caring. A second, larger scale quantitative study focused on assessing the time constraints facing parents of children with developmental disabilities. Participants were 95 primary caregivers (mostly mothers) and 65 secondary caregivers (mostly fathers) of children (mean age = 4½ years) with developmental disabilities who were clients of the Early Childhood Service, part of Disability Services SA. Children‟s diagnoses included global developmental delay, Down syndrome, and autism. Caring and other activities of parents were assessed using a 24 hour pre-coded time-use diary. Parents also completed questionnaires measuring characteristics of child disability; their experience of time pressure and partner support; and psychological, social and physical well-being. Examination of time-use diaries found parents of children with disabilities spent more time in “active” rather than “passive” caring tasks, than parents of children in the general community. As well, they spent less time in personal care, and less time in recreational activities. Intensity of caring, rather than total time caring was correlated with reports of daily stress for primary caregivers. Patterns of caring and non-caring activities carried out by primary caregivers on weekdays and weekend days differed from those undertaken by secondary caregivers, reflecting gender differences in parenting roles. Analysis of questionnaire data showed children to have high levels of emotional and behavioural problems. Parents (particularly primary caregivers) had significantly poorer psychological, social and physical health outcomes than normative samples. Feelings of time pressure had a stronger association with parental depression than actual time spent caring. Further, testing of the model showed time pressure and partner support to be potential mechanisms by which caring for a child with a disability may lead to poor parental mental health. It is suggested that professionals providing early intervention services need a greater awareness of the constraints of the caring role undertaken by parents, together with the key role played by feelings of time pressure and partner support in contributing to the mental health of parents of children with disabilities. / http://proxy.library.adelaide.edu.au/login?url= http://library.adelaide.edu.au/cgi-bin/Pwebrecon.cgi?BBID=1346851 / Thesis (Ph.D.) - University of Adelaide, School of Paediatrics and Reproductive Health, 2008

Feeding disorders are common in disabled children, and family reactions are critical factors influencing the severity and course of this problem. This study hypothesized that feeding disorders in disabled children would be significantly more stressful to parents than other childhood disabilities; that pediatric feeding disorders would be more stressful in single parent families than two parent families; and that childhood feeding disorders would be less stressful to fathers than to mothers.Two copies each of the Friedrich Questionnaire on Resources and Stress (QRS-F) and a demographic data survey were sent to 79 families of disabled children. Responses were received from 47 subjects representing 31 households. Analysis of Variance of the QRS-F scores indicated significantly greater stress levels in families of disabled children who received tube feedings, but not in families whose disabled children required special assistance with oral feeding. There was an inadequate number of responses from single parent families to statistically compare their stress levels to two parent families with feeding disordered children. The comparison of fathers and mothers of disabled children with feeding disorders did not yield a statistically significant difference in stress levels.The greater stress levels found in parents of disabled children who received tube feedings shows a need to provide improved education and training programs, as well as support after hospital discharge, to families with tube fed children. / Department of Family and Consumer Sciences

This study investigated the factors related to the delivery of health care services by school nurses. The purposes of the study were divided into three categories. The first was the nurses' identification of the handicapping conditions of children in their caseloads and their perceptions of the children's health problems. The second involved data about the nurses' educational background and preparation they felt as useful in their work with children with handicaps; data on barriers which limit or prevent nursing care of these children was also solicited. Third, information was sought about future plans of nurses for obtaining more education, barriers perceived which hindered their plans, and special considerations in program planning that would facilitate their educational goals. Institutional guidelines were written based on findings of the study and the review of literature.

Thesis (M Social Work (Social Work))--University of Stellenbosch, 2011. / ENGLISH ABSTRACT: Disability can be physical or mental and have different causes, which determine how it is classified. This study will concentrate on physical disability. In the past, the causes of disability were associated with many beliefs of which most perceived disability as something bad. In Botswana, even though people now understand the causes of disability, they still associate it with something bad or have not fully accepted disabled people. The beliefs surrounding physical disability are worse due to the fact that the disability is visible. The way people perceive physical disability does not only affect the disabled person, but also their families. As the causes of disability vary and can develop prior to birth or be acquired later in life, they affect the different age groups in different ways. This study will focus on physical disability in school children and will explore the impact it has on their mother’s psychosocial needs. The physical disability of school children has different challenges depending on the type of disability. The challenges can be physical, social, economic and psychological. Due to these challenges these children are considered to have special needs and require special care. The special care involves providing for their special basic needs and their medical, social and psychological needs at home and at school. The physically disabled school children also use special equipment which helps them with their daily actives. This equipment needs special care and these children therefore need to go for regular checkups. They also need to be assisted with how to use this equipment at home and school. The challenges of physically disabled school going children are administered by social workers under the Community Based Rehabilitation (CBR) Programme. The CBR must assist with improving the lives of disabled children and their families. When the social workers attend to the disabled school going child, they concentrate on the medical part of the child’s disability, often forgetting other needs. They also do not attend to the mother and her needs, as she is the primary carer. This study was conducted in Letlhakeng village in Botswana. Twenty (20) biological mothers of physically disabled school going children were interviewed using a semi structured questionnaire. The sampling was a non probability purposive sample and the study used both quantitative and qualitative methods of research. The quantitative study has shown that the mothers in the area have limited education and are non-skilled. They are still active and most of them are single parents engaged in low income economic activities or not doing anything and they have a reasonable number of children. Their housing structures are poor and not accessible for the disabled children. The results indicated that mothers know about disability, but the causes have not been fully communicated to them. Even though they consider physical disability to have a natural cause, they still associate it with other beliefs according to which the disability could have happened at birth or after birth. This indicates that cultural beliefs still have an impact. The mothers send their children to school but their schooling is not taken seriously as the mothers do not know about programmes like special education that can help their children. They still have negative feelings when the child is at school. In addition the mothers are not comfortable with the school environment and still believe a disabled child does not have the capacity to learn. The qualitative study showed that mothers have psychosocial needs which are not provided for, as they feel that CBR does not involve them and assist them accordingly. This therefore deprives them of the information and confidence to provide for their disabled children. The mothers do not interact well with their relatives and the community due to the negative attitudes they have towards the disabled. They also lack support from them and from the social workers, because at the time of this study there was no social worker in the area. The mothers showed that they have the burden of caring for their disabled children and this is affecting them physically, economically, socially and psychologically. The role of social work in rehabilitation is still not taken seriously as indicated by the fact that the post at the rehabilitation office has remained vacant for so long. Overall, mothers have psychosocial needs and experience difficulties in coping with the burden of providing for their physically disabled school going children and the social workers are not playing their role in this regard to assist them. The recommendation is made for advocacy to assist the physically disabled children and their families especially the mothers as the primary caregivers and to improve the role of the social worker. / AFRIKAANSE OPSOMMING: Gestremdheid kan liggaamlik of geestelik wees en het verskillende oorsake waarvolgens dit geklassifiseer kan word. Hierdie studie fokus op liggaamlike gestremdheid. In die verlede is die oorsake van gestremdheid met allerlei gelowe vebind, wat meestal as negatief beskou is. Selfs al is die oorsake van gestremdheid vandag bekend, is daar steeds mense in Botswana wat gestremdheid as iets boos beskou of diegene met gestremdhede nie ten volle aanvaar nie. Die gelowe rondom liggaamlike gestremdheid is selfs eger omdat die gestremdheid sigbaar is. Die manier waarop mense liggaamlike gestremdheid beskou, beïnvloed nie net die gestremde persone nie, maar ook hulle gesinne. Aangesien die oorsake van gestremdheid verskil en dit by geboorte of later opgedoen kan word, beïnvloed dit verskillende ouderdomsgroepe op verskillende maniere. Hierdie studie fokus op liggaamlike gestremdheid by skoolkinders en ondersoek die impak daarvan op hulle moeders se psigososiale behoeftes. Die liggaamlike gestremdheid van skoolkinders bied verskillende uitdagings na gelang van die soort gestremdheid. Die uitdagings kan liggaamlik, maatskaplik, ekonomies en sielkundig wees. Hierdie uitdagings beteken dat die kinders beskou word as kinders met spesiale behoeftes wat spesiale sorg nodig het. Die spesiale sorg behels dat voorsiening gemaak moet word vir hulle spesiale basiese behoeftes, asook hulle mediese, maatskaplike en sielkundige behoeftes tuis en by die skool. Liggaamlik gestremde skoolkinders gebruik ook spesiale toerusting wat hulle in staat stel om hulle daaglikse aktiwiteite te kan uitvoer. Aangesien hierdie toerusting deel uitmaak van spesiale sorg, word die kinders gereeld medies ondersoek. Hulle moet ook hulp kry om die toerusting tuis en by die skool te gebruik. Die uitdagings wat die skoling van liggaamlik gestremde kinders bied word ooreenkomstig die Gemeenskapsgebaseerde Rehabilitasieprogram (GBRP) deur maatskaplike werkers aangebied. Die GBRP is gemik daarop om kinders met gestremdhede én hulle ouers se omstandighede te verbeter. Wanneer die maatskaplike werkers met skoolgestremde kinders werk, fokus hulle op die mediese sy van die kind se gestremdheid en vergeet dikwels van die ander behoeftes. Hulle sien ook nie om na die moeder – wat die hoofversorger is – en háár behoeftes nie. Die studie is uitgevoer in die dorpie Letlhakeng in Botswana. Onderhoude is gevoer met twintig biologiese moeders van skoolgaande liggaamlik gestremde kinders deur gebruik te maak van ʼn halfgestruktureerde vraelys. Die steekproefneming behels ʼn doelgerigte niewaarskynlikheidsteekproef en die studie gebruik kwantitatiewe sowel as kwalitatiewe navorsingsme. Die kwantitatiewe studie dui daarop dat die moeders in die gebied oor ʼn lae opvoedingsvlak beskik en weinig vaardighede het. Ofskoon hulle nog aktief is en die meeste van hulle die hoof van die huishouding is, is hulle betrokke by ekonomiese aktiwiteite wat lae inkomste bied. Ander beskik oor geen inkomste nie, terwyl die getal kinders binne die nasionale gemiddeld is. Die huisstruktuur is swak en ontoeganklik vir kinders met gestremdhede. Die resultate dui daarop dat die moeders vertroud is met gestremdheid, maar dat die oorsake daarvan nie volledig aan hulle oorgedra is nie. Selfs al besef hulle dat liggaamlike gestremdheid wel ʼn natuurlike oorsaak het, assosieer hulle dit steeds met ander gelowe wat by geboorte of na geboorte ʼn rol kon speel. Dit dui daarop dat kulturele gelowe wel ʼn impak op hulle het. Alhoewel die moeders hulle kinders laat skoolgaan, word die skoling nie in ʼn ernstige lig beskou nie, aangesien die moeders onbewus is van spesialeonderrigprogramme wat hulle kan help. Hulle bly dus negatief oor hulle kinders se skoolbywoning. Verder het die moeders nie vertroue in die skoolomgewing nie en meen gestremde kinders se leervermoë is ontoereikend. Die kwalitatiewe studie wys dat moeders psigososiale behoeftes het waarin daar nie voorsien word nie. Hulle meen die GBRP betrek hulle nie en staan hulle nie dienooreenkomstig by nie. Dít ontneem hulle dus die inligting en selfvertroue om vir hulle gestremde kinders te kan voorsien. Die moeders kommunikeer nie juis met familielede en die gemeenskap nie weens die familielede en gemeenskap se ingesteldheid. Die moeders kry nie bystand van hulle óf van maatskaplike werkers nie. Met die studie is daar vasgestel dat daar geen maatskaplike werkers in die omgewing is nie. Dit was duidelik dat die moeders gebuk gaan onder die las om hulle gestremde kinders te versorg en dat dit hulle liggaamlik, ekonomies, sosiaal en sielkundig beïnvloed. Die rol van maatskaplike werk in rehabilitasie word steeds nie ernstig opgeneem nie en daarom staan die rehabilitasiekantoor dikwels vir lang tye leeg. Oor die algemeen het moeders psigososiale behoeftes en hulle vind dit moeilik om die las te hanteer wat die skoling van hulle liggaamlik gestremde kinders op hulle plaas, terwyl daar onvoldoende maatskaplike werkers is om bystand hiermee te verleen. Daar word vervolgens aanbevelings gedoen en voorspraak gelewer om die gesinne en families van liggaamlik gestremde kinders te help, veral betreffende die rol van die moeders as versorgers en om maatskaplike werkers se betrokkenheid te verbeter.

This study investigated the experiences of caregivers regarding their participation in community-based rehabilitation for children with physical disabilities in two selected communities in Botswana. The experiences included the impact of disability on the immediate family, coping strategies, enabling factors and barriers to participation in community-based rehabilitation.

The continued development of the American health care system and evolving technology have led to an increased life expectancy within the general population. In fact, these advancements have also resulted in growing numbers of young people with chronic illnesses living into adulthood. Approximately one third of children ages 10-17 have a chronic disease, and the vast majority of these children will survive beyond their 20th birthday (Blum, 1995; Lotstein, McPherson, Strickland, & Newacheck, 2005; White, 2002). The main objective of this study was to explore the healthcare transition (HCT) practices of health care providers and the HCT experiences of chronically ill young adults living with sickle cell disease, cystic fibrosis, and/or diabetes. Meleis, Sawyer, Im, Hifinger Messias, & Schumacher’s (2000) theory on transition and Boykin and Schoenhofer’s (2001) theory of Nursing as Caring provided the theoretical lenses throughwhich study findings were viewed. This was a descriptive exploratory mixed methods design that consisted of survey data and used conventional content analysis to analyze the qualitative data. The quantitative portion of this study incorporated a 41-question survey that was completed by 33 health care providers working with chronically ill young adults in the southeast Florida region. Additionally, semi-structured interviews were conducted with eight young adults (18-24 years of age) living with a sickle cell disease, cystic fibrosis, and/or diabetes. Five themes emerged from an analysis of the data describing the healthcare transition (HCT) experience: Transition Confusion, Familial Reliance, Lost in Transition, Fiscal Stressors, and Transition Uneasiness. The findings of this study demonstrate that there are, at minimum, three general parts of the HCT process that remain deficient: educational preparation, consistent communication between all parties involved in the HCT process, and guidance for the independent negotiation of the present healthcare system. Recommendations for healthcare providers that work with chronically ill young adults include establishing a HCT framework that incorporates consistent communication among team members and patients/families, individualized educational formats, and guidance for navigational skills to negotiate the healthcare system. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

Thesis (M. A. (Social Work)) --University of Limpopo, 2017. / This study investigates experiences of parents of children living with physical and intellectual disabilities in South Africa’s Limpopo province. The study utilized a sample of 14 participants drawn using purposive sampling. An interview schedule with a set of questions was used to collect data. The results suggest that both positive and negative experiences are encountered by parents of children living with disabilities. Problems which children encounter on a daily basis have got also similar implications on their parents or guardians. This study has revealed that parents face many challenges ranging from personal, social, economic and financial. The study found out that it is actually more expensive, mental draining for parents of children living with disabilities to look after them. It emerged in the study that community negative attitudes on children with disabilities hinders their progress and results in social exclusion. The study also revealed that the majority of the parents believe that witchcraft had a hand in disabling their children. It also emerged that most of the parents of children living with disabilities hoped for a cure of the disabilities medically, traditionally and spiritually. However the study confirms that parents of children living with disabilities go through a cycle of denial fear, guilty, depression and acceptance after discovering that their child is disabled.

Many people in South Africa are aware of the need for intervention and rehabilitation of disabled children. The lack of resources in the state healthcare system has necessitated a move towards capacity building and empowerment of community members to reduce the burden of responsibility on the healthcare system. Such engagement of community members in healthcare initiatives also has the potential of re-integrating disabled people back into society. The implementation of these strategies is undertaken largely by non-governmental organisations. One such NGO, the Child Development and Resource Centre (CORC) provides a service to children with multiple disabilities and their caregivers for whom no other resources are available. In attempting to increase the range of its impact on disabled people in Kwazulu-Natal, a training programme was developed to deal with the needs of the caregivers. The purpose of this study is to describe, evaluate and recommend changes of this nine module training course facilitated by the CDRC. The target population was the primary caregivers of disabled children living in peri-urban and rural areas and educare workers from non-profit organisations who were involved in service delivery to such families. The purpose of the training programme was to raise community awareness around disability, to sensitise and educate individuals to the needs of the disabled, and to empower caregivers in caring for disabled children in their communities. The CDRC training programme was subjected to on-going evaluation and monitoring throughout the entire process. Based on an action research model, programme evaluation was implemented and data was gathered from three sources: observation notes on each of the nine modules, evaluation forms completed by the participants, and focus group discussions with the participants. / Thesis (M.Ed.)-University of Natal, Pietermaritzburg, 2001.