Family centred care for Children with chronic respiratory disease: A New Zealand perspective

Abstract

Introduction: Family-centred care (FCC) is proposed as best-practice within paediatrics facilitating positive outcomes for parents, children, health professionals and facilities. However, issues exist around the consistent implementation and definition of this philosophy of care. It is proposed that limited research, education, evaluation and understanding regarding the practical application attribute to this. Accordingly, the focus of this thesis was to assess the factors that impact on family-centred care for parents of children with a chronic respiratory disease.

Method: A two stage embedded mixed method approach was undertaken. Stage One involved a national benchmark survey of four paediatric facilities within New Zealand, and aimed to provide a national overview, and internationally benchmark, the integration of FCC within New Zealand’s paediatric facilities. Stage Two utilised both quantitative and qualitative methodologies. The influence of coping, anxiety, depression and parental needs on parent’s ability to participate in the care of their hospitalised child was explored through three tools the Coping Health Inventory for Parents, Hospital Anxiety and Depression Scale and the Needs of Parents Questionnaire. The qualitative stage of the study explored parental self-efficacy, coping and social support for parents managing their child’s chronic respiratory disease.

Results: A total of eighty two nurses across the four centres completed the survey on family-centred care. New Zealand was found to be at a beginning stage in terms of the integration of family-centred care and behind international facilities within the United States, Canada and Italy.

A total of fifty one parents completed the three questionnaires. Overall parents were not experiencing symptoms of anxiety and depression and coped with their child’s hospitalisation and chronic respiratory condition. Aspects of service delivery that were deemed important for parents to be able to cope, centred on child access, discharge and care. The aspect of service delivery that parents considered to be lacking was related to continual access to their child.

Twenty three parents were interviewed about managing their child’s respiratory condition. Parents identified that the management of their child’s chronic disease impacted on family life and their own self-management.. Parents felt an overwhelming sense of being on their own with the responsibility of their child’s chronic disease; this was shaped by the level of predictability of the disease process.

Discussion: The study suggests that how effectively information is shared between nurses and parents and the degree to which health professionals value parental knowledge and expertise impact on parental participation and engagement with primary health services. While the level of parental responsibility experienced by parents managing their child’s disease and lack of organisational support can negatively influence parental participation and thus FCC. There is evidence that a dichotomy exists within New Zealand between the nurse’s perception of family-centred care practice and parents’ experiences. Findings also suggest when parent’s knowledge and expertise are not respected or information needs are not appropriately met, parents feel isolated, less confident and disengage from the health service, thus impacting on their sense of responsibility and participation in their child’s care. Moreover, a lack of organisational and health professional support around FCC implementation suggests the need to improve the integration of FCC within facilities and the education of health professionals in New Zealand. These findings are important as they suggest that parents of children with chronic respiratory diseases, health professionals and organisations within New Zealand are not experiencing the full benefit of a philosophy of care that can enhance outcomes and experiences

While these findings provide new knowledge on how well paediatric facilities in New Zealand support the concepts of FCC, it is the discovery of overwhelming responsibility experienced by the primary caregiver and reduced self-efficacy amongst fathers that is an original contribution to knowledge and provides the potential for future work.