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In this study we explored the ways that mothers and fathers of children who have a chronic health condition coconstructed their parenting roles. We wanted to move beyond the standard focus on individual parenting behaviors and use a grounded theory approach to better capture the dyadic and interpersonal gestalt of how parents worked out their roles. We explored multiple factors that influenced their decision making and the unique models that each couple developed. We held conjoint qualitative interviews with 20 couples from the Toronto area, as well as follow-up interviews with individual partners in five of these couples. Our findings introduce several concepts (such as role negotiation, complementarity and symmetry of roles, and "good enough" role performance) that form an explanatory model. A key finding is the diversity of ways in which couples adapted to the parenting challenges they faced. Implications in conceptual, clinical, and research areas are presented.

Relatively little is known about how children perceive and manage end-stage renal disease (ESRD) in daily life. To address this gap in the literature, the experiences and perceptions of children with ESRD were examined in this study. Study design comprised ethnographic interviews with 25 children and adolescents ages 7 to 18 years. Semistructured interviews were audiotaped, transcribed verbatim, and subjected to content analysis. Participants received a range of ESRD treatments including transplantation and dialysis. Findings indicate that ESRD has a profound impact on children. They described a range of challenges and experiences including not feeling “normal”; developing ESRD knowledge; frequent absence from school; gaining responsibility for ESRD care; relying on family, friends, and health care providers; and adjusting despite adversity. These findings depict a multifaceted, dynamic perspective engendered in tensions as children and adolescents grapple with adversity yet experience personal growth and resiliency. Implications and recommendations for clinical practice and research are discussed.

In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample. Issues related to social isolation due to infection control precautions were predominant. Themes included emotional upheaval, communication challenges, and changes in parental and professional roles. These findings reveal the cogent effects of SARS on family-centered care. The notion of providing family-centered care within an environment plagued by an infectious outbreak suggests an ominously difficult task. Efforts must be made to optimize family-centered care despite obstacles. The authors suggest effective clinical approaches in the event of future outbreaks.