Methodological Challenges in Examining Family and Child Perspectives on Lived Experiences of Disability in Daily Life

Drawing on several National Institutes of Health–funded ethnographic and mixed-methods studies (e.g., 2R01 HD38878; R01 MH089474), the authors discuss the salience of family and child perspectives, conceptualization of study design, methodological innovations designed to elicit data related to lived experiences, scientific rigor, analytic approaches, and moral dilemmas. The presented studies were designed to address research questions related to health disparities and access and treatment inequities; “partnering up” processes; meanings of illness and disability in home, family, and community life; intersections of developmental and illness or disability trajectories; and emic perspectives on special health care and developmental needs including autism. These research projects were designed drawing on narrative, phenomenological, interpretive, and social network approaches.

We have conceptualized these methods as narrative phenomenology (Mattingly, 2010) and designed specific data collection strategies including collective narrative approaches. Participants in these studies were African-American children with special health care needs including autism, their primary caregivers, family members, extended family members, and practitioners with whom they were engaged. These interdisciplinary, multimethod, longitudinal projects involved individual and collective interviewing; extensive participant observations in home, clinical and community settings; document reviews; and collection of cultural artifacts (e.g., photographs, drawings, home videos). Data analysis was both within case and across cases and incorporated narrative, thematic, categorical, and social networks approaches. Multiple forms of triangulation were utilized to enhance rigor.

Selected findings will be presented to illustrate the data collection and analysis strategies incorporated to discover and interpret the family and child perspectives. Contextual features across both time and space will be described. Specific findings related to collecting individual and within-family perspectives (Lawlor & Mattingly, 2014), previously underreported problems (Solomon & Lawlor, 2013), and the centrality of relational and intersubjective processes (Lawlor, 2012) will be presented as exemplars of the particular challenges and benefits of gathering emic perspectives from children and families. Attention will be paid to efforts to discover the lived experiences of children though both verbal and nonverbal engagements. Management of moral and ethical dilemmas that have emerged will be briefly discussed. Impact of these research projects will be discussed, including unanticipated impacts of participating in this type of longitudinal, developmental, engaged, and relational work. Arguments will be presented that both highlight and problematize research programs conducted in clinical, home, and community settings that seek to examine health disparities. The impact of ethnographic and multimethod studies on translational research efforts will be described.

References

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Lawlor, M. C., & Mattingly, C. (2014). Family perspectives on occupation, health, and disability. In B. A. B. Schell, G. Gillen, & M. Scaffa (Eds.), Willard and Spackman’s Occupational therapy (12th ed., pp. 149– 162). Philadelphia: Lippincott Williams & Wilkins.

Mattingly, C. (2010). The paradox of hope: Journeys through a clinical borderland. Berkeley: University of California Press.

Solomon, O., & Lawlor, M. C. (2013). “And I look down and he is gone”: Narrating autism, elopement and wandering in Los Angeles. Social Science and Medicine, 94, 106–114. http://dx.doi.org/10.1016/j.socscimed.2013.06.034