| This is a reflexive ethnographic case study of my family as we moved through the process of establishing and providing ongoing support for an individualized home-based care program for my daughter Carly, who has multiple disabilities. Through the use of qualitative research methods, this study sought to understand the meaning for our family as we interrelated with systems traditionally outside the boundaries of home. In using a reflexive approach, that integrates rather than separates the researcher from the lived experience, I documented how my family's personal experiences illuminate the broader culture. During the small moments of our lives, we encountered the larger social, political, and institutional forces that affect a family caring for itself. Informed by the theoretical perspectives of care theory and relational psychology, the study also presents a critical appraisal of the cultural ideology of the separation of the public and private spheres. Our experiences in crossing the boundary between public and private cultures of care revealed that the daily experiences of family life are reflective of larger cultural processes that impact our individual and collective lives. Findings suggest that the alliance of paid and unpaid individuals offers the promise of creating small communities of care that may inform future models of caregiving for individuals who are disabled, elderly, or chronically ill. Our experience further suggests that issues of social trust, both interpersonal and formal, and attention to the relational features of caregiving are critical components in reformulating caregiving practices. |
