A study to investigate parental satisfaction with the allocation of respite care for their child by a children’s hospice

Abstract

Prior to this study the children’s hospice had no evidence base to demonstrate parental satisfaction regarding the allocation of respite care for their child. The study explored the opinion of parents whose children received respite care at a children’s hospice, how it was allocated and their satisfaction with what they received. The research adopted a mixed methods approach. All families whose children attended the hospice for respite care were invited to participate by completion of a postal questionnaire. The first six who responded and gave their consent participated in individual semi-structured interviews. The combination of the two data collection methods gave rise to six broad themes through which the data was analysed. There was a good response rate, sixty two percent of the questionnaires were returned. The results showed parents liked the perceived informality of the current method used to allocate respite care, preferring it to a more formal assessment. Parents valued the relationship that developed with the hospice, felt fairly treated and expressed degrees of satisfaction with the respite care received. However there was a lack of knowledge about the allocation of respite care. The interviews highlighted the complexity of the relationship parents have with the hospice which could prevent them from articulating concerns. Knowledge gained from the research and critical reflection on practice has enabled improvements to be made to the allocation of respite care. * Parents receive a leaflet providing information about respite care and its allocation * Guidelines to allocate respite care have been written so the process is carried out in a consistent way * Respite care is regularly reviewed with parents The children’s hospice must constantly question the effectiveness of the model used to allocate respite care. It should be equitable, consistent, transparent and objective whilst recognising the uniqueness of each family. Clarity of information provided to parents will allow an understanding of the care the hospice can provide alongside the organisational constraints that are integral to the allocation process. Further areas for research were identified. * Exploration of gratitude for respite care and its impact on the relationship between hospice and parents * Evaluation of the allocation of respite care from an organisational viewpoint.