Affiliation: School of Medicine, Department of Allied Health Sciences, Division of Occupational Science and Occupational Therapy
There is much to be learned about health, wellness, and inclusion from the everyday things that families do. Families with children with disabilities, in particular, are adept at negotiating myriad situational factors as they construct activities together. This study began by examining family research methods and exploring how qualitative designs fit into daily family life. Semi-structured interviews with 13 parent advisors yielded their key motivations for participation in research, reservations about naturalistic designs, and recommendations for improved feasibility. These findings were applied during a subsequent ethnographic phase of the project. This second phase of study employed participant observations with 7 families with one or more 6-11 year old (middle childhood age) children with a variety of disability diagnoses. The researcher accompanied families in their homes and communities to learn about the enactment of family time occupations and shared engagement. Narrative and thematic analyses revealed that families constructed moments together with awareness of the multi-bodied, multi-abilitied, and multi-preferenced natures of their collective units. Family occupations were inherently manifold, evolving, and negotiated. Several inclusion practices used by families to promote member participation in joint activities are also described. Disability was one of many family characteristics that impacted these activities, supporting the use of relational approaches to family-centered care. Family occupation is a helpful window for exploring daily life, social relationships, and coordinated action among groups.