我为我的 CP 儿子感到骄傲":脑瘫护理人员的经历,豪登省。

IF 1.3 Q4 HEALTH CARE SCIENCES & SERVICES African Journal of Disability Pub Date : 2024-06-27 eCollection Date: 2024-01-01 DOI:10.4102/ajod.v13i0.1357
Faith Maronga-Feshete, Sonti Pilusa, Abigail Dreyer
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引用次数: 0

摘要

背景:脑瘫儿童(CP)的照顾者对其子女的生存和福祉至关重要。尽管照顾者承担着特别繁重的责任,但有关他们经验的文献却很有限:本研究探讨了照护者照护脑瘫儿童的经验:方法:采用半结构式访谈的探索性定性研究设计。所有访谈都进行了录音、逐字记录,并在科莱兹的七步方法指导下进行了分析:出现了两个主题:护理过程中的挑战和提供护理的积极经验。照护者面临着经济、心理、社会和身体方面的挑战,如被污名化、缺乏工作便利、因照护需求而导致的时间限制、家庭关系紧张、孤立、排斥、在照护过程中的情感和身体疲惫。尽管有这些挑战,但他们也有充实和积极的经历。随着时间的推移,照顾者的适应能力增强了,一些关系得到了加强,对脊髓灰质炎的认识也有所提高:照顾患有脑瘫的儿童是一项挑战。大脑性瘫痪是一种永久性残疾;因此,有必要从整体和长期的角度为照顾者提供支持,以确保他们能够充分照顾自己的孩子:有必要为照顾者建立各种支持结构,以减轻他们的照顾负担。有必要确定现有支持结构与照顾者如何看待和利用这些结构之间的关系。本研究强调了照顾者的经验和需求,为利益相关者提供了干预策略的信息。
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'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.

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来源期刊
African Journal of Disability
African Journal of Disability HEALTH CARE SCIENCES & SERVICES-
CiteScore
2.10
自引率
5.90%
发文量
50
审稿时长
20 weeks
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.
期刊最新文献
Selection of a classroom observation tool for disability inclusion in Uganda. Employment challenges for persons with visual impairment in Windhoek, Namibia. Paediatric cerebral palsy in South Africa: Prevention and care gaps at hospital level. Primary healthcare rehabilitation users' views on activity limitations and participation in South Africa. Participatory research with youth with disabilities: Experiences from sub-Saharan Africa.
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