Dellve Lotta, Samuelsson Lena, Tallborn Andreas, Fasth Anders, Hallberg Lillemor R-M
Assistant Professor, Department of Public Health and Community Medicine, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden.
J Adv Nurs. 2006 Feb;53(4):392-402. doi: 10.1111/j.1365-2648.2006.03736.x.
This paper reports a study to assess stress, well-being and supportive resources experienced by mothers and fathers of children with rare disabilities, and how these variables were affected by an intensive family competence intervention.
Despite diagnosis-specific studies, little overall knowledge exists about life-consequences for families of children with rare disorders.
We used a prospective design with baseline data and two follow-ups (at 6 and 12 months) after an intervention. The intervention aimed at empowering parents in managing their child's disability. Parents from all parts of Sweden visiting a national centre for families of children with rare disabilities were consecutively selected (n = 136 mothers, 108 fathers). Instruments of parental stress, social support, self-rated health, optimism and life satisfaction and perceived physical or psychological strain were used. Stratified analyses were carried out for mothers and fathers, and related to parental demands: single mothers, full-time employment, participation in a parent association, child's age and type of disability.
We found high parental stress, physical and emotional strain among mothers, especially among single mothers. Fathers showed high stress related to incompetence, which decreased after the intervention. Decreased strain was found among full-time working mothers and fathers after the intervention. Parents' perceived knowledge and active coping and mothers' perceived social support were increased at follow-up. Factors related to parents' overall life satisfaction (57-70% explained variance) changed after the intervention, from being more related to internal demands (perceived strain, incompetence and social isolation) to other conditions, such as problems related to spouse, paid work and social network.
Parents, especially fathers and full-time working parents, may benefit from an intensive family competence programme.
本文报告一项研究，旨在评估患有罕见残疾儿童的父母所经历的压力、幸福感和支持资源，以及这些变量如何受到强化家庭能力干预的影响。
尽管有针对特定诊断的研究，但对于患有罕见疾病儿童的家庭所面临的生活后果，总体了解甚少。
我们采用前瞻性设计，收集基线数据，并在干预后进行两次随访（分别在6个月和12个月时）。干预旨在增强父母管理孩子残疾状况的能力。连续选取了来自瑞典各地、前往一家全国性罕见残疾儿童家庭中心的父母（136名母亲，108名父亲）。使用了父母压力、社会支持、自评健康、乐观和生活满意度以及感知到的身体或心理压力等测量工具。对母亲和父亲进行了分层分析，并与父母的需求相关联：单身母亲、全职工作、参与家长协会、孩子年龄和残疾类型。
我们发现父母压力较大，母亲中存在身体和情感压力，尤其是单身母亲。父亲表现出与能力不足相关的高压力，干预后有所降低。干预后，全职工作的母亲和父亲的压力有所减轻。随访时，父母感知到的知识、积极应对方式以及母亲感知到的社会支持有所增加。干预后，与父母总体生活满意度相关的因素（解释方差为57 - 70%）发生了变化，从更多地与内部需求（感知到的压力、能力不足和社会孤立）相关，转变为与其他状况相关，如与配偶、有偿工作和社交网络相关的问题。
父母，尤其是父亲和全职工作的父母，可能会从强化家庭能力计划中受益。
