Social Policy Research Unit, University of York, UK.
Health Soc Care Community. 2012 Jul;20(4):388-99. doi: 10.1111/j.1365-2524.2011.01042.x. Epub 2012 Feb 24.
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.
服务相关选择的满意度并未受到太多关注，尤其是在医学/健康相关决策之外。本文报告了对父母在为残疾子女或代表残疾子女做出与服务相关的选择时的叙述的分析结果，这些子女患有退行性疾病。本文特别关注影响父母满意度的因素和过程。鉴于在实施服务相关选择后，通常会出现不理想的结果或负面后果，这一点尤其有趣。本文所报告的数据是作为更大的纵向研究（选择与变革项目）的一部分收集的，该研究关注服务使用者的选择体验，包括这些选择的结果和后果。有退行性疾病的残疾年轻人的父母是该样本的一部分。在两年半的时间里进行了三次访谈，收集了其中 14 位父母的叙述，他们都对服务相关选择的中-长期结果表示满意，这些叙述被选中进行特定分析，以了解服务相关选择满意度的基础。明确年轻人想要的结果有助于做出有效的决策，并使父母有信心做出最佳选择。父母会利用实现期望结果的证据来权衡选择的负面后果。这些包括为实施选择而对父母的个人、财务和实际资源造成的巨大需求，以及照顾者角色丧失等重大变化所带来的情感影响。时间的推移对于出现积极结果的证据、对重大变化的心理或情感调整以及父母对新服务提供者的信任发展非常重要。研究结果表明，从业者在为残疾子女或代表残疾子女做出选择时，可以为父母提供重要的实际和情感支持。
