{"title":"我为我的 CP 儿子感到骄傲\":脑瘫护理人员的经历,豪登省。","authors":"Faith Maronga-Feshete, Sonti Pilusa, Abigail Dreyer","doi":"10.4102/ajod.v13i0.1357","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers' particularly demanding responsibilities, literature on their experiences is limited.</p><p><strong>Objectives: </strong>This study explored the caregivers' experiences of providing care to children with CP.</p><p><strong>Method: </strong>An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi's seven-step methodology.</p><p><strong>Results: </strong>Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.</p><p><strong>Conclusion: </strong>Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.</p><p><strong>Contribution: </strong>There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.</p>","PeriodicalId":45606,"journal":{"name":"African Journal of Disability","volume":"13 ","pages":"1357"},"PeriodicalIF":1.3000,"publicationDate":"2024-06-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11219972/pdf/","citationCount":"0","resultStr":"{\"title\":\"'I'm proud of my son with CP': Cerebral palsy caregivers' experiences, Gauteng province.\",\"authors\":\"Faith Maronga-Feshete, Sonti Pilusa, Abigail Dreyer\",\"doi\":\"10.4102/ajod.v13i0.1357\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Background: </strong>Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers' particularly demanding responsibilities, literature on their experiences is limited.</p><p><strong>Objectives: </strong>This study explored the caregivers' experiences of providing care to children with CP.</p><p><strong>Method: </strong>An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi's seven-step methodology.</p><p><strong>Results: </strong>Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.</p><p><strong>Conclusion: </strong>Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.</p><p><strong>Contribution: </strong>There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.</p>\",\"PeriodicalId\":45606,\"journal\":{\"name\":\"African Journal of Disability\",\"volume\":\"13 \",\"pages\":\"1357\"},\"PeriodicalIF\":1.3000,\"publicationDate\":\"2024-06-27\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11219972/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"African Journal of Disability\",\"FirstCategoryId\":\"1085\",\"ListUrlMain\":\"https://doi.org/10.4102/ajod.v13i0.1357\",\"RegionNum\":0,\"RegionCategory\":null,\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2024/1/1 0:00:00\",\"PubModel\":\"eCollection\",\"JCR\":\"Q4\",\"JCRName\":\"HEALTH CARE SCIENCES & SERVICES\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"African Journal of Disability","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.4102/ajod.v13i0.1357","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/1/1 0:00:00","PubModel":"eCollection","JCR":"Q4","JCRName":"HEALTH CARE SCIENCES & SERVICES","Score":null,"Total":0}
'I'm proud of my son with CP': Cerebral palsy caregivers' experiences, Gauteng province.
Background: Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers' particularly demanding responsibilities, literature on their experiences is limited.
Objectives: This study explored the caregivers' experiences of providing care to children with CP.
Method: An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi's seven-step methodology.
Results: Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.
Conclusion: Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.
Contribution: There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.
期刊介绍:
The African Journal of Disability, the official journal of CRS, AfriNEAD and CEDRES, introduce and discuss issues and experiences relating to and supporting the act of better understanding the interfaces between disability, poverty and practices of exclusion and marginalisation. Its articles yield new insight into established human development practices, evaluate new educational techniques and disability research, examine current cultural and social discrimination, and bring serious critical analysis to bear on problems shared across the African continent. Emphasis is on all aspects of disability particularity in the developing African context. This includes, amongst others: -disability studies as an emerging field of public health enquiry -rehabilitation, including vocational and community-based rehabilitation -community development and medical issues related to disability and poverty -disability-related stigma and discrimination -inclusive education -legal, policy, human rights and advocacy issues related to disability -the role of arts and media in relation to disability -disability as part of global Sustainable Development Goals transformation agendas -disability and postcolonial issues -globalisation and cultural change in relation to disability -environmental and climate-related issues linked to disability -disability, diversity and intersections of identity -disability and the promotion of human development.