Browsing by Subject "caregivers"

Now showing 1 - 5 of 5
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    An exploration of the care needs of frail older persons in Namibia: perspectives and experiences of formal and informal caregivers
    (2022) Zamuee, Charmill; Abdullah, Somaya
    The adequate care of older persons is a major global concern and countries are examining ways to respond to these needs, especially the needs of frail older persons in the care environment. Important strides have been made in developed countries but progress has been slow in less developed countries in the Global South and limited information exists on the care needs of frail older persons and lived experiences of formal and informal caregivers. This thesis examines the care needs of frail older persons in Namibia. Namibia has only recently been liberated from colonial rule by Germany and apartheid South Africa. During this time black communities were disenfranchised, resource-scarce and living under poor conditions. For older persons, this meant unequal treatment, social exclusion and denial of access to decent care. The aim of this study was to provide an in-depth understanding of the needs of frail older persons in the care environment in Namibia by examining the lived experiences of caregivers and analysing policy. Using a qualitative methodology, the study collected primary data from formal and informal caregivers based on semi-structured interviews and focus groups. The data analysis relied mainly on coding strategies under Atlas-ti and qualitative content analysis. The secondary data were collected from legislation, government policy documents, journals and other public reports. The finding revealed that Namibia's history has entrenched the current situation of unmet needs of frail older persons, exacerbated by inadequate policy protection. These limitations were highlighted by the Covid-19 pandemic. The study also found that the effective care of frail older persons is only possible through stakeholder engagement and cross-sectoral collaboration. The study therefore recommends that government should undertake a process of social reforms to ensure that the needs of this group are prioritised, that a performance framework should be implemented to ensure delivery and that all stakeholders should be mobilised. The study has contributed to these outcomes by suggesting a model for needs assessment of frail older persons, especially during the Covid-19 pandemic. This model could be used to improve care practices, serve government in evidence-based policy making and provide a useful analytical tool for scholarship.
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    Mothers’ facilitation of the occupational engagement of their children with FASD: a qualitative descriptive study in an under-resourced district in South Africa
    (2019) Coetzee, Lian-Marie; Sonday, Amshunda; Gretschel, Pamela
    South Africa has the highest reported prevalence of Fetal Alcohol Spectrum Disorder (FASD) worldwide. The high prevalence is aggravated by limited remedial and rehabilitative services in the rural Northern Cape. Parents requested guidance to facilitate the development of their children with FASD. Understanding their needs and strengths will inform intervention programmes to create the stable environments children with FASD require for optimal life outcomes. The aim of the study is to explore the way that mothers facilitate the occupational engagement of their children with FASD as well as the challenges they face. Using a qualitative descriptive study design, the author purposively selected mothers to reveal three turning points in the lives of their children. Semi structured- and photo-elicitation interviews highlighted mothers’ experiences. Interviews were transcribed verbatim and inductively analysed with content analysis. Two themes emerged, namely, “Doing together” and “Varying access to engagement”. The findings of this study highlight the important role mothers play to facilitate the occupational engagement of children with FASD. Recognising mothers as agents of change and including them in intervention will enhance occupational therapy practice in the area of FASD.
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    TEDI 4 Week 3 - Building Relationships of Care and Education
    (2019-06-01) Isaacs, Aimee
    In this video, Aimee Isaacs discusses how to empower the team working with children with severe to profound intellectual disability in order to support learning. Aimee speaks of the importance of a multi-disciplinary approach to supporting learning, involving different specialists and caregivers in the educational process. She speaks of the importance of specialists consulting caregivers as part of their intervention, and the value of minimising the power imbalance between these groups as perceived authority and power dynamics can reduce the quality of information that the primary caregivers provide. She then speaks of the multi-disciplinary care approach as part of a holistic care approach, that brings together different skillsets and acknowledges different socio-economic and environmental factors in developing and implementing a care plan. She discusses the importance of creating mutually-empowering working relationships between the different specialists and caregivers.
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    TEDI 4 Week 4 - Developing an Ethics of Care - A Parent's Perspective
    (2019-06-01) McKenzie, Judith; le Roux, Marlene
    In this video, Judith McKenzie and Marlene le Roux discuss the mother's perspective of parenting a child with severe to profound intellectual disability. They share their experiences with the medical system and the mental care system and the inability of these institutions to provide personal support and emotional care. Marlene le Roux speaks of the importance of structure, engagement, routine, and community care and support from the community in raising a child with disabilities. Marlene also speaks of the importance of respecting and honouring the professional caregivers who provided care support for her disabled son. Lastly, she discusses how her son contributed to the family and to her life.
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    The feeding and swallowing impact survey (FS-IS): cross-cultural adaptation for the South African context
    (2021) Bestenbier, Candice; Norman, Vivienne; Pascoe, Michelle
    Background: Feeding and swallowing difficulties (FSD) are found in typically developing children and children with complex medical and developmental conditions. These difficulties may have negative health consequences which can be stressful for caregivers as they are required to provide care for their children in the home environment. The Feeding and Swallowing Impact Survey (FS-IS) is a subjective rating scale used to determine the health-related quality of life (HRQoL) of caregivers of children diagnosed with FSD. However, this scale is not yet available in any of the official South African languages (except for English), and has not yet been culturally or linguistically adapted for the South African context. Research aims: The study aimed to cross culturally adapt and validate the FS-IS for the South African context by 1) describing the content validity of the FS-IS in a South African context; 2) describing the cultural and linguistic appropriateness of the English, isiXhosa and Afrikaans versions of the FS-IS; and 3) describing the experiences caregivers of children have in caring for their child with FSD using the FS-IS, in a pilot study. Methodology: A descriptive exploratory design was used to cross-culturally adapt and pilot the FS-IS, which consists of 3 subsections related to daily activities, worrying and problems with feeding. Five expert speech-language therapist (SLT) participants were identified to review the FS-IS for content validity. The FS-IS was then translated into Afrikaans and isiXhosa using the forward and back translation process. Caregivers (n=15) were identified at feeding clinics to determine the cultural and linguistic appropriateness of the FS-IS in English (n=5), Afrikaans (n=5) and isiXhosa (n=5). Their recommendations were taken into consideration and changes made. The pilot study included caregivers of children with FSD attending feeding clinics at two institutions (n=32) who completed the FS-IS. The participants in the pilot study included parents as primary caregivers (n=28; 88%), grandparents (n=2; 6%), as well as foster parents (n=2; 6%). Thirty-one participants were female with 14 English speaking, 9 isiXhosa and 9 Afrikaans speaking. The caregivers were the primary caregivers of children with a variety of FSD including non-oral feeds, oral feeds with specific modifications and picky or selective eaters. Results: The FS-IS was found to have content validity as experts and caregiver participants judged it to be contextually relevant for the South African context. Caregivers considered the items on the FSIS important, clear and appropriate for speakers of their native language as well as for fellow South African families, with minor changes suggested for the isiXhosa translated version. The tool has high internal consistency (Cronbach's alpha = 0.827) as well as excellent intra and inter-rater reliability (100% agreement). Daily activities that caregiver participants found most difficult included getting help from others (50%, n=16) and leaving their child in the care of others as they are scared to have others feed or take care of their child (62.5%, n=19). The majority of caregiver participants reported concerns related to their child's general health (84%, n=27) and whether they were doing enough to help with their child's FSD (50%, n=16). Few caregivers reported difficulties with feeding, with 87.5% (n=28) reporting no difficulties as a result of the time taken to prepare meals and 72% (n=23) reported no difficulty due to professionals or family having differing opinions about how to feed their child with FSD. Conclusion: The results confirm that the FS-IS is a reliable and valid tool for the identification of caregivers with reduced HRQoL related to caring for their child with FSD in a South African context. The adapted and translated FS-IS can therefore be used to identify caregivers who may need additional support or referral for further management from the multidisciplinary team. The results highlighted the complexity of caring for a child with FSD and the effects of the burden of care on caregivers. Early identification of the HRQoL of caregivers will not only benefit the caregivers but also the child they are caring for as the HRQoL of caregivers impacts on the QoL of the child with FSD.