An interpretative phenomenological analysis of family involvement in the hospital nursing care of children with autism spectrum disorder within eThekwini District

Abstract

Autism spectrum disorder (ASD) is characterised by dramatic impairments in communication, social interaction and repetitive patterns of behaviour, resulting from a neuro-developmental disorder of the brain. Hospitalisation for children with autism spectrum disorder (ASD) can be very stressful because of sensory overload, their impaired ability to communicate, disruption of routine, a new unfamiliar environment and the illness for which the child was admitted. These factors can provoke difficult behaviour in these children such as uncontrolled crying, screaming, biting, scratching and other self-injurious behaviour. For these reasons, a nurse who is not knowledgeable about ASD often finds it very difficult to nurse a child with ASD in hospital. Nurses’ lack of knowledge about ASD results in poor nursing care of children with ASD. Literature has shown that this poor nursing care can be resolved by effectively involving parents in the care of their children. In South Africa and especially in KwaZulu-Natal there have been no studies conducted to corroborate these findings and therefore a gap exists in the literature. Aim of the study: The study aimed to develop in-depth insights into family involvement in the provision of in-hospital nursing care for children with ASD in the South African context, in order to develop a framework for the improvement of family involvement in the hospital nursing care of a child with ASD Objectives of the study: The study’s objectives were to critically assess the perceptions of professional nurses and families regarding the involvement of families in the hospital nursing care of a child with ASD; identify and describe the challenges perceived by professional nurses and families, in the involvement of families in the hospital nursing care of a child with ASD, explore participant perceptions on the range of corrective interventions and actions to overcome challenges and promote effective family involvement in the hospital nursing care of a child with ASD then develop a framework for the improvement of family involvement in the hospital nursing care of a child with ASD. Method: The study design was interpretative phenomenological analysis (IPA), which is a qualitative approach. Sampling was achieved utilising the maximum variation purposive sampling method and data were collected from ten nurses and ten families of children with ASD, using semi-structured interviews. The “Neil Williams framework for the improvement of family involvement in the hospital nursing care of a child with ASD”, was developed, utilising the Gray and Grove framework development process. Findings: The data collected were categorised into four themes, seventeen subthemes and 6 codes. The findings highlighted the nurse’s perceived lacked knowledge and time, and they were not listening to parents. Nurses had an uncaring attitude toward children with ASD. However, both nurse and family participants acknowledged the importance of family involvement in the care of a child with ASD in hospital. Family participants made several suggestions to improve family involvement in the hospital nursing care of the child with ASD. In order to overcome the identified challenges and incorporate the participants suggestions, the “Neil Williams framework for the improvement of family involvement in the hospital nursing care of a child with ASD”, was developed, utilising the empiric data from this study and the theoretical frameworks of the Neuman’s systems model, Bowen’s family systems theory and the theory of family care during critical illness. This framework was validated using the Delphi method of validation. Conclusion: The study findings confirm that nurses lack knowledge on hospital nursing care of a child with ASD, and it is important to involve family who know better about the child. This involvement can be strengthened by the empowerment of nurses and family members. This empowerment can be achieved by implementing the four components of empowerment, namely: information sharing, proximity, attitude and garnering resources. The framework developed in this study can contribute to improving nursing practice for paediatric ward nurses in the eThekwini region of KZN and may improve the in- patient experience of children with ASD and their families. It can ensure that families are meaningfully involved in the treatment of their children which may lead to improved health outcomes for children with ASD and increased positive work experience for nurses in this region, if implemented correctly.