EXPERIENCES OF CAREGIVERS OF CHILDREN WITH SPASTIC CEREBRAL PALSY REGARDING SPLINTING IN UGANDA

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Tusiime C.1,2, Struthers P.3
1University of the Western Cape, CHS, Cape Town, South Africa, 2CoRSU Rehabilitation Hospital, Rehabilitation Services, Entebbe, Uganda, 3University of the Western Cape, School of Public Health, Cape Town, South Africa

Background: Splinting is one of many techniques used globally for managing neuromuscular impairments related to cerebral palsy. In Uganda, there is no documented information on why children who are provided with splints are still getting contractures and deformities. This makes it difficult for health professionals to know what they can do to further support the splinting process.

Purpose: The study's aim was to describe the experiences of caregivers of children with spastic cerebral palsy regarding splinting.

Methods: The study used a qualitative exploratory research design in two research settings (one urban and one rural) in Uganda. Ethical considerations included permission to gain access to the centres and their clients and to ensure confidentiality of the caregivers. Twenty-four purposively selected caregivers of children with spastic cerebral palsy participated in the in-depth interviews conducted in Luganda language. With written consent from the participants, the interviews were audio-taped, transcribed and translated to English. The data were analysed using content analysis.

Results: Twenty-four caregivers of children with spastic cerebral palsy were interviewed (21 mothers, 1 father and 2 grandmothers). Six themes emerged from the data: 1) The caregivers’ expectations that using splints would lead to changes in the child’s limb, 2) The experience of acquiring splints (the time required and the costs), 3) The caregivers’ knowledge or experience of obtaining information and skills on applying the splints, 4) The attitudes of the children, caregivers, and the community to the use of splints, 5) The caregivers’ practice (frequency and duration of splinting), and 6) The caregivers’ experience of the benefits of splinting and suggestions for improvement in the process. Caregivers described positive and negative experiences associated with splinting. Positive experiences were linked to observing a reduction in the child’s impairment, activity limitation or improved participation in the community. Negative experiences were the result of a tight or uncomfortable splint causing the skin to redden or break. Caregivers found it difficult when the children cried and did not want to wear the splints, or they observed negative attitudes of people in the community towards their children and stigmatisation.

Conclusion(s): Caregivers of children with spastic cerebral palsy in Uganda have positive and negative experiences with splints usage for these children. Positive experiences could facilitate the regular use of splints. Negative experiences may lead to less frequent use of the splints, thus development of contractures or deformities. These include the negative attitude of children and adults in the community or in the family that affect participation while wearing the splint; the difficulties caregivers have applying the splint; and the unhappiness or pain of the child and not knowing if it was necessary to apply the splint when the child was crying.

Implications: Physiotherapists need to understand the experiences of caregivers during the splinting process. It will help them recognise the importance of increased involvement of the caregivers and children while prescribing splints so the caregivers are well informed. This client-centred practice advocated for in literature for health workers is not yet common practice in Uganda.

Funding acknowledgements: Comprehensive Rehabilitation Services in Uganda (CoRSU) Hospital, my family and Christofell Blinden Mission (CBM) International

Topic: Professional issues

Ethics approval: University of Western Cape Senate Ethics Committee (11/8/17) and Uganda National Council of Science and Technology (SS 2829).


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