Objective: To synthesis evidence from systematic reviews at international level to explore effective community and home based care interventions for family caregivers (FCGs), which may affect quality of life of persons with dementia (PWDs) and their FCGs in China. Methods: A systematic review of reviews was conducted. Studies were identified through Scopus, PubMed and EBSCO databases. Non-pharmacological interventions targeted on FCGs with outcome domains related to psychological health or quality of life of PWDs and/or their FCGs were within this review scope. Quality of systematic reviews was evaluated by AMSTAR. Quality of primary studies included in the systematic reviews was assessed by their internal and external validity. Results: Three systematic reviews of moderate to high quality with 74 publications were included in this systematic review. Among the primary studies, about 60% were conducted by randomized controlled design, and about 85% were carried out in high-income countries. Results at review level suggested that communication skills training, internet-based care management, coping strategy, individual behavioral management techniques were effective interventions for FCGs of PWDs. In contrast, most of the primary studies reported that community or home based interventions positively affected FCGs and/or PWDs. Those interventions included communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques; yet the effects yielded statistically insignificant in most of the trials. In particular, significant effects of community care interventions were found in 8 of 69 trials on FCGs’ psychological health, 3 of 4 trials on FCGs’ competence, 0 of 2 trials on FCGs’ quality of life, and 3 of 7 trials on PWDs’ quality of life. Combination of those community care intervention components was observed in most of the trials with significant effects. Conclusion: Communication skills training, internet-based care management, supportive therapy, educational intervention, coping strategy, behavioral management techniques had positive effects on FCGs of PWDs living in the community. The combination among those intervention components and designing intervention model in FCG needs-oriented manner underpinned a potential significant effect. Given distinguished social economic contexts in urban and rural areas, implementation of community care interventions specific to FCGs in China should be handled with cautions and strengthened by policy supports to empower aging at home. / published_or_final_version / Public Health / Master / Master of Public Health

Objective: The current study aimed to examine the psychological distress of family caregivers of patients with psychosis following a stress-coping model as well as a self-regulation model. Methods: A cross-sectional correlational study was conducted in a psychiatric out-patient clinic of a local hospital. 26 caregivers were recruited. Associations among their psychological distress, appraisal of caregiving experience, illness perception, coping style and care burden were explored. Results: Psychological distress was found to be significantly correlated to negative appraisal of caregiving, perceived consequences on patient, perceived consequences on relative, perceived control by relative and care burden. Preliminary analysis showed that a combination of four factors, including negative appraisal of caregiving, perceived consequences on relative, perceived control by relative and care burden, significantly predicted psychological distress (〖R 〗^2= 0.36, F(4,21) = 2.97, p < 0.05). Among the predictors, negative appraisal of caregiving was the single strongest predictor of distress (〖R 〗^2 = 0.28, F(1,24) = 9.18, p < 0.01). Conclusion: The psychological wellbeing of family caregivers were influenced by both factors suggested by the stress-coping model and the self-regulation model. Findings from the present study provided preliminary evidence for developing caregiver-centered intervention that focused on appraisal of caregiving experience and illness perception in order to reduce the distress of caregivers. Further studies would be recommended to explore and differentiate the impact of appraisal of caregiving, coping style and illness perception on psychological distress in the caregiving experience for patients with psychosis. / published_or_final_version / Psychological Medicine / Master / Master of Psychological Medicine

published_or_final_version / Nursing Studies / Master / Master of Nursing

Autism is a life-long neurological disease that manifests differently in every autistic person. Children with autism have difficulties with four developmental areas, namely: language and communication, social interaction, imagination, and sensory issues. These behaviours make it extremely difficult to care for, or teach, autistic children as these children often present with behaviours that are psychologically, cognitively and physically challenging. As there is only one government subsidised school with the expertise and support structures to teach and care for autistic children in the Eastern Cape, parents often have no option, but to place such children in residential care in order for the children to receive the expert teaching they need. As a result, hostel housemothers are often placed in parental roles as they provide much of the parenting on a daily basis. Many of these caregivers have their own families that also need support and care. This may place additional burdens on these employees that could lead to a variety of psychological and physical conditions, depending on their resilience, and ability to handle frequent stressful situations. It is for this reason that this study is imperative, as it will uncover the stressors experienced by the hostel housemothers who play such a pivotal role in the lives of autistic children. The results of the study will serve to inform possible future interventions. This is a qualitative study. Participants were obtained through purposive sampling, and data was analysed through a thematic analysis approach. The Salutogenesis theory of Antonovsky was used, which particularly looks at stressors, tension, breakdown, and Salutogenesis. The study has generated, in the researcher, an understanding of how hostel housemothers cope with the stressors of caring for autistic children, and intends to do the same for readers.

published_or_final_version / Nursing Studies / Master / Master of Nursing

The high prevalence of HIV/AIDS in Zambia has led to the development of innovative ways of coping with sickness related to this infection. HIV/AIDS home-based care is one such innovation designed in Chikankata Hospital in 1987. Home-based care depends on the availability of family members and community volunteers in the provision of care and support for People Living with HIV/AIDS (PLWHA).<br /> <br /> This minithesis is based on a qualitative descriptive case study exploring perspectives regarding skills, supervision and support mechanisms for carers in the Chikankata HIV/AIDS Community-Home Based Care (CHBC) program. The study utilized documented research, focus group discussions with carers and structured interviews with local CHBC supervisors, national experts in CHBC, and PLWHA and their families, to collect data from 32 study participants.<br /> <br /> The findings were that CHBC was being delivered by community volunteers with limited involvement from the local health services / that carers were highly motivated, personally and collectively mobilizing resources to meet the needs of CHBC clientele / that local arrangements for training, skills and support of carers were not aligned to national guidelines regarding process, content and duration of programmes / and that carers acquired skills in CHBC through formal and informal training processes and were facing challenges related to inadequate skills, poor infrastructure and extreme poverty in households caring for PLWHA. <br /> <br /> Based on the findings the local arrangements for coordination of CHBC need to be strengthened and linked to formal processes for technical support, financial resources and materials for delivery of CHBC in line with existing guidelines on CHBC. The picture of the real situation of the carers that emerges from this qualitative study might inform the supervising organizations and policymakers on the gaps in the training and support of this crucial cadre in the provision of quality care for People Living with HIV/AIDS (PLWHA) at community level.

This study aimed to model the process and its relevant variables in predicting the willingness in home care and actual institutionalization of older persons with dementia in a Hong Kong context. This was a secondary data analysis of a previous research study which collected 122 sample of Chinese caregivers and their older care recipients with clinical diagnosis of dementia, all of whom recruited from a local NGO. Participants were assessed on a battery of instruments that collected both caregivers and patients' characteristics, including demographic details, patients “physical states affected by dementia, caregivers” perceived burden. The period of study was 12 months, with follow up phone calls on state of care every 6 months. Only a very weak relation was shown between expressed intention to care and actual placement at 12M. Higher odds in intention for home care was significantly predicted by male gender in caregiver gender and lower caregiver burden (ZBI score); ZBI was a total mediator between patients' agitation (CMAI score) and willingness. Higher odds of actual institutionalization was related to the use of day care centre. Results called for a need to carefully distinguish the genuinely effective services in helping to delay nursing home placement; rather than assuming all to be useful. While caregivers training was not popular among current sample, current model showed the importance of caregivers' perceived burden in altering objective environmental stress' effect on caregiving outcomes. While more than half of the current sample was using day care centre, model suggested day care centre could have encouraged placement. More resources should be allocated in programmes that aimed to manage caregivers' stress and cognition. There should also be more promotions to heighten awareness and participation of such programmes amongst caregivers of HKG. / published_or_final_version / Social Work and Social Administration / Master / Master of Philosophy

This dissertation, employing an array of theoretical approaches under the rubric of Systems Thinking, explores the reality and experiences of family members that mainly provide care at home for their loved ones who live with or are directly affected by HIV & AIDS. Employing a multidisciplinary approach, the dissertation demonstrates how Systems Thinking, feminist and indigenous knowledge principles can be employed for a better understanding of the contemporary construction of family and experiences of caregivers in an HIV & AIDS context. The discussion of the dissertation is based on data analysed following in-depth interviews with fifteen caregivers of the Bhambayi community. The findings of the study reflect a significant change in the definition and practice of parenting. It was found that HIV & AIDS forces a re-definition of the concept and practice of parenting beyond the traditional boundaries of age, sex and gender. Aligned with this main finding was that parenting practices and coping strategies are largely influenced by a strong commitment to the well-being of the children as well as societal constructs. The thesis of this dissertation is that the HIV & AIDS context and associated gender and cultural stereotypes are principally responsible for a significant shift in the understanding of the concept and practice of parenting within an African context. The study thus submits that a Systems Thinking approach ought to be used by interventionists to better understand and thus contribute towards improving the lives of families or communities in similar circumstance as that of the Bhambayi families. / Thesis (M.Com.)-University of KwaZulu-Natal, Westville, 2009.

Alzheimer's Disease (AD) is among the most prevalent of the dementias and it is anticipated that much of the care required for the dependent patient will be provided in the home setting by a caregiver. The purpose of this study was to identify the importance of needs related to caregiving and the level of satisfaction of those needs related to the caregivers of Alzheimer's victims. The theoretical framework for this study is Dorthea Orem's "Self-Care Deficit Theory."The sample was 18 caregivers who attended one of three Alzheimer's Support Group meetings held in three central Indiana cities. Human subjects rights were protected. The Home Caregiver Needs Survey (HCNS), Hileman, 1990, was used to identify the information, household, patient psychological needs of the and care needs, personal and caregivers of Alzheimer's patients and to determine if these needs are being adequately met. Findings included: (a) the caregivers perceived the need for information, patient care, personal, spiritual, psychological need to be somewhat important to important; teach, assist and support caregivers throughout the and (b) satisfaction of the needs indicated that the caregivers were somewhat satisfied to satisfied with the needs presented. Implications call for: (a) Nursing intervention to caregiving experience. (b) Home health care agencies and senior citizens action groups to lobby for support and programs to assist caregivers. / School of Nursing

The high prevalence of HIV/AIDS in Zambia has led to the development of innovative ways of coping with sickness related to this infection. HIV/AIDS home-based care is one such innovation designed in Chikankata Hospital in 1987. Home-based care depends on the availability of family members and community volunteers in the provision of care and support for People Living with HIV/AIDS (PLWHA).<br /> <br /> This minithesis is based on a qualitative descriptive case study exploring perspectives regarding skills, supervision and support mechanisms for carers in the Chikankata HIV/AIDS Community-Home Based Care (CHBC) program. The study utilized documented research, focus group discussions with carers and structured interviews with local CHBC supervisors, national experts in CHBC, and PLWHA and their families, to collect data from 32 study participants.<br /> <br /> The findings were that CHBC was being delivered by community volunteers with limited involvement from the local health services / that carers were highly motivated, personally and collectively mobilizing resources to meet the needs of CHBC clientele / that local arrangements for training, skills and support of carers were not aligned to national guidelines regarding process, content and duration of programmes / and that carers acquired skills in CHBC through formal and informal training processes and were facing challenges related to inadequate skills, poor infrastructure and extreme poverty in households caring for PLWHA. <br /> <br /> Based on the findings the local arrangements for coordination of CHBC need to be strengthened and linked to formal processes for technical support, financial resources and materials for delivery of CHBC in line with existing guidelines on CHBC. The picture of the real situation of the carers that emerges from this qualitative study might inform the supervising organizations and policymakers on the gaps in the training and support of this crucial cadre in the provision of quality care for People Living with HIV/AIDS (PLWHA) at community level.