Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living With Congenital Heart Defects.

There have been substantial advances in the diagnostics and treatment of congenital heart defects (CHDs) in recent decades, and this has improved survival significantly. Consequently, there is a growing interest in how CHDs affect the daily lives of children and youth. We examine life with CHDs as a particular kind of living from the perspectives of both children and youth with CHDs and their families through a systematic review of existing qualitative research. Based on a meta-ethnographic analysis of 20 articles (identified through PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from January 7 to 12, 2016), we argue that living with CHDs is characterized by chronic paradoxes arising out of the transitions, normalities, and futures that families have to navigate.

Living with a disability: a qualitative study of associations between social relations, social participation and quality of life.

PURPOSE: We explored which shared aspects of social relations were considered important to the quality of life of persons between the ages of 10 and 40 years living with a disability. We examined how social relations were experienced as affecting quality of life and social participation. MATERIALS AND METHODS: Fifteen focus groups involving 48 persons with disabilities were conducted using photo elicitation, preference ranking and props. Focus group interviews were supplemented with seven individual interviews with individuals unable to participate in focus groups. All focus group interviews and individual interviews were audiotaped, transcribed, and thematic data analysis was conducted. RESULTS: We identified caregiving, dependency, and understanding as essential for quality of life. Acceptance from society, discrimination and prejudice, and the ability to participate in society were also highlighted as affecting quality of life. The use of social tactics to avoid confrontation with certain aspects of their disability was common among participants. CONCLUSIONS: Across disabilities, caregiving, dependency, understanding and acceptance, and discrimination and prejudice were all important aspects for the quality of life of the individuals. Social relations were closely related to social participation, and the latter affected the quality of life of the participants. Social tactics were used to navigate social relations. Implications for rehabilitation We suggest to formalize the concept of social tactics and use it in patient education to enhance quality of life in individuals living with disabilities. People may accept and learn to cope with the impact of their disability, but how they maintain their social participation and social relations also impact on their quality of life. In their assessment, professionals working with individuals with disabilities should, therefore, give more priority to analyze the impact of social relations. When intervening, an effort to establish and maintain social relations should be considered along with psychological help, allocation of aids and economical support aiming to enhance quality of life and social participation among individuals with disabilities. When evaluating efforts to improve quality of life, it is important to investigate whether the intervention has improved the social relations.