Department of Psychology, Marquette University, Milwaukee, WI 53201-1881, USA.
J Pediatr Gastroenterol Nutr. 2010 Dec;51(6):747-52. doi: 10.1097/MPG.0b013e3181de0651.
Understanding families' quality of life can be important for interdisciplinary treatment planning. The present study examined child and parent perspectives about how constipation and fecal incontinence affect families' quality of life.
Semistructured interviews were conducted with 8 children/adolescents and 8 caregivers. All of the children met Rome II criteria for functional constipation. Interviews were analyzed by an interdisciplinary team using a content analysis approach, which included developing a coding manual that described emergent themes from the interview transcripts.
Qualitative and quantitative responses revealed the varied experiences of participating families. Child and parent views may be misaligned, which can affect treatment planning and effectiveness. Families described variable satisfaction with the treatment recommendations they had been offered and experienced difficulty finding appropriate care. Children's social and family functioning were significantly affected by constipation and fecal incontinence difficulties. Both children and parents described the challenges of discussing the problems with others.
Multiple domains of individual and family functioning are affected by children's constipation and fecal incontinence difficulties, thereby affecting the quality of life of both children and their parents. The findings underscore the need for providers to consider the influence of symptoms on adjustment to both the medical condition and treatment adherence and discuss concerns with children and parents. The results provide the foundation for developing a standardized tool for quantitative assessment of quality of life for children with constipation.
了解家庭的生活质量对于跨学科治疗计划可能很重要。本研究检查了儿童和父母对便秘和粪便失禁如何影响家庭生活质量的看法。
对 8 名儿童/青少年和 8 名照顾者进行半结构化访谈。所有儿童均符合罗马 II 功能性便秘标准。由跨学科团队使用内容分析法对访谈进行分析，该方法包括开发一个编码手册，描述访谈记录中出现的主题。
定性和定量的反应揭示了参与家庭的不同经历。儿童和父母的观点可能不一致，这会影响治疗计划和效果。家庭对他们所接受的治疗建议的满意度各不相同，并且很难找到合适的护理。儿童的社交和家庭功能受到便秘和粪便失禁困难的显著影响。儿童和父母都描述了与他人讨论这些问题的挑战。
儿童便秘和粪便失禁困难会影响个人和家庭功能的多个领域，从而影响儿童及其父母的生活质量。研究结果强调了提供者需要考虑症状对医疗状况和治疗依从性调整的影响，并与儿童和家长讨论相关问题。研究结果为开发用于评估便秘儿童生活质量的标准化工具提供了基础。
