Barlow J H, Cullen L A, Foster N E, Harrison K, Wade M
Psychosocial Rheumatology Research Centre, School of Health and Social Sciences, Coventry University, Priory Street, Coventry CV1 5FB, UK.
Patient Educ Couns. 1999 Jun;37(2):141-51. doi: 10.1016/s0738-3991(98)00136-0.
The presence of a painful, disabling chronic disease may have implications for perceived ability to fulfill a parenting role. The purpose of this research was to examine the realities of parenting from the perspectives of mothers, fathers and grandparents with arthritis using a combination of methods: a cross sectional survey and in-depth focus group discussions. There was consensus that pain, fatigue and restricted physical functioning combined to interfere with the parenting role. Overall, approximately 35% of the sample had experienced difficulties attributed to arthritis. A gender difference emerged with women reporting more difficulties in relation to caring for babies and toddlers, whereas men reported more problems as children grew older. Key themes concerned: physical limitations; practical and caring issues; social factors; emotional response; hereditary risks and safety issues. Perceived inability to fulfill parenting roles resulted in feelings of frustration, guilt, anger and depression. A number of positive outcomes were mentioned including children's increased awareness of the needs of others. Limitations of the methodological approach adopted are discussed.
患有疼痛性、致残性慢性病可能会对履行育儿角色的感知能力产生影响。本研究的目的是通过横断面调查和深入的焦点小组讨论相结合的方法，从患有关节炎的母亲、父亲和祖父母的角度审视育儿的现实情况。大家一致认为，疼痛、疲劳和身体功能受限共同干扰了育儿角色。总体而言，约35%的样本曾经历过与关节炎相关的困难。出现了性别差异，女性报告在照顾婴幼儿方面有更多困难，而男性报告随着孩子长大问题更多。关键主题包括：身体限制；实际照料问题；社会因素；情绪反应；遗传风险和安全问题。感知到无法履行育儿角色会导致沮丧、内疚、愤怒和抑郁情绪。也提到了一些积极成果，包括孩子对他人需求的认识有所提高。文中讨论了所采用方法的局限性。
