Karen Harrison

Does arthritis influence perceived ability to fulfill a parenting role? Perceptions of mothers, fathers and grandparents.

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 childrens increased awareness of the needs of others. Limitations of the methodological approach adopted are discussed.

The Experience of Parenting in the Context of Juvenile Chronic Arthritis

Caring for a child with juvenile chronic arthritis (JCA) places considerable demands upon parents. The purpose of this study was to gain greater insight and understanding into the experience of parents in terms of the stressors encountered and the resultant impact on parental well-being. Reflecting this aim, the study utilized a qualitative methodology, focused group technique. Parents expressed the impact of JCA in terms of guilt, anxiety, anger, frustration, helplessness, powerlessness and isolation. Lack of information and inadequate support hindered their efforts to cope with their childs pain and disability. Social barriers, particularly in the school environment, emerged as significant sources of stress. Parents suggested that the burden of care could be eased by greater provision of information, increased support through self-help groups, more opportunities for discussion with health professionals, and education at individual and societal levels.

Focusing on Empowerment: facilitating self-help in young people with arthritis through a disability organisation

Young people with arthritis face a number of disabling barriers when negotiating their way through contemporary society. A national disability organisation, Young Arthritis Care YAC , has established a Contact network, whereby young people with arthritis provide support to similar others in the community. To improve the service, YAC initiated Contact Training Courses in the fields of advocacy and counselling. An appropriate research methodology was required that enabled the efficacy of this training to be examined in a disability framework. Focus group technique was selected as a research methodology set within an emancipatory paradigm that can in itself be an empowering experience for participants. Results illustrated that focus group technique enabled young people with arthritis to freely articulate their views concerning the efficacy of training set within the framework of self-help.