title: The development of satisfaction with service-related choices for disabled young people with degenerative conditions: evidence from parents' accounts.
abstract: Satisfaction with service-related choices has not received much research attention, especially beyond medical/health-related decisions. This paper reports findings from an analysis of parents' accounts of making service-related choices with, or on behalf of, a disabled son or daughter with a degenerative condition. It focuses particularly on factors and processes, which contribute to parents' satisfaction. This is particularly interesting given that sub-optimal outcomes or negative consequences are often experienced following a service-related choice being implemented. The data reported here were collected as part of a larger, longitudinal study (the Choice and Change project) of service users' experiences of choice-making, including the outcomes and consequences of those choices. Parents of disabled young people with degenerative conditions formed part of this sample. The accounts of 14 of these parents, collected over three interviews during a two and a half-year period, all of whom expressed satisfaction with the medium- to long-term outcomes of a service-related choice, were selected for specific analyses to understand what underlies satisfaction with service-related choices. Clarity of the desired outcome for the young person supported effective decision-making and led parents to feel confident that the best possible choice was being made. Evidence of desired outcomes being attained were used by parents to 'trade off' the negative consequences of a choice. These included the considerable demands placed on parents' personal, financial and practical resources to operationalise a choice, and the emotional impact incurred by significant changes such as the loss of the carer role. The passage of time was important in allowing evidence of positive outcomes to emerge, psychological or emotional adjustments to be made, and for parents to develop trust in new service providers. The findings suggest that practitioners can have an important role in both practical and emotional support for parents' choice-making for, or with, their disabled son/daughter.
authors.affiliation: Social Policy Research Unit, University of York, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Maddison
authors.forename: Bryony
authors.initials: B
authors.lastname: Beresford
mesh_terms: D000293:Adolescent; D002755:Choice Behavior; D003657:Decision Making; D006233:Persons with Disabilities; D004644:Emotions; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D008137:Longitudinal Studies; D008297:Male; D008659:Metabolic Diseases; D009468:Neuromuscular Diseases; D010290:Parents; D017060:Patient Satisfaction; D016896:Treatment Outcome; D035502:Trust; D055815:Young Adult