A Pilot Study exploring Families' Experience of Caring for Children with Chronic Arthritis: Views from the Inside

Abstract

Control of juvenile chronic arthritis (JCA) is sought by a cocktail of strong drugs, but effective rehabilitation depends upon robust exercise and splinting programmes carried out at home. This article describes the pilot stage from a larger research project and explores the global impact of both the disease process and associated health care programmes on the child with JCA, the parents, the siblings and other family members. The pilot study used a pre-tested self-completion questionnaire with families attending JCA outpatient appointments. The questionnaire was designed around six key issues in order to test issue validity and significance for the families involved. It elicited both quantitative and qualitative data that informed and guided subsequent in-depth fieldwork. The findings included the following: (a) 41% of all families reported that the experience prior to diagnosis had a strong impact on later coping; (b) the degree of understanding about the aims and methods of exercise and splinting programmes varied widely; (c) there was common confusion about prognosis; and (d) there was evidence of parental grieving. The literature review and study findings strongly suggest a knowledge gap between families and professionals. There were indications of the wideranging root causes of compliance difficulties. The recommendations include more reflexive practice by service providers, greater attention to the families' priorities and perspectives, and improvements in effective mutual information sharing between practitioners and families. There were strong indications for further in-depth research.