The experience of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services: A qualitative study
The experience of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services: A qualitative study
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DOI：
10.1111/cch.12706
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发表时间：
2019-08-16
影响因子：
1.9
通讯作者：
Carpenter, Christine
中科院分区：
文献类型：
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作者：
Nyante, Gifty Gyamah;Carpenter, Christine
目的本研究旨在探讨加纳农村地区未接受康复服务的脑瘫儿童的护理经验。脑瘫是儿童期最常见的慢性残疾，需要终生康复。生活在加纳农村社区的大多数人几乎没有任何形式的慢性残疾康复服务。众所周知，照顾残疾儿童具有挑战性，特别是在农村社区面临环境挑战的情况下。结果采用目的法和滚雪球法对7 ~ 15岁脑瘫患儿的12名照护者进行调查，年龄22 ~ 68岁。两个主要主题，发展个人信念以支持照顾者的角色和塑造照顾经验的需求，从照顾者叙述的六个副主题和25个主题集群中出现。这一现象的基本结构表明，个人因素和环境因素的复杂相互作用与实际需求相协调，对参与者的体验产生积极或消极的影响。积极地说，照顾者做到了应对，致力于照顾，对未来充满希望，并接受了这种情况。然而，消极的是，看护人将绝望和悲伤的触发因素描述为沮丧和缺乏对病情的理解，感到耻辱，并认为孩子正在经历痛苦和折磨。结论护理员的宗教和精神信仰是平衡护理需求的力量来源。研究结果可以作为制定干预措施的基础，以支持护理人员，并为康复服务的新战略提供信息，并使社区成员对残疾儿童的包容更加敏感。
Aim This study aims to explore the experiences of carers of children with cerebral palsy living in rural areas of Ghana who have received no rehabilitation services. Background Cerebral palsy is the most common chronic disability from childhood, which needs lifelong rehabilitation. Most of the population living in rural communities in Ghana have virtually no form of rehabilitation services for their chronic disabling conditions. Caring for children with disability are known to be challenging especially when coupled with environmental challenges in rural communities. Results Purposive and snowball techniques were used to recruit 12 carers, age 22 to 68 years, of children with cerebral palsy aged 7 to 15 years. Two main themes, developing personal beliefs to support the caregiving role and the demands that shape the experience of caring, emerged from six subthemes and 25 theme clusters of the narratives of the carers. The essential structure of the phenomenon demonstrated the complex interaction of personal and environmental factors in harmony with the actual demands to influence the experiences of participants positively or negatively. Positively, carers achieved coping, committed to caring, hoped for the future, and accepted the condition. However, negatively, carers described the triggering factors of feeling of despair and sorrow as frustration and lack of understanding of the condition, felt stigmatized, and perceived the child was going through pain and suffering. Conclusions Carers derived strength from their religious and spiritual beliefs to balance the demands of caregiving. Findings could be used as basis for developing interventions to support carers and inform new strategies for rehabilitation service and sensitization of community members about inclusion of children with disabilities.