Mary C. Lawlor

Learning from Stories: Narrative Interviewing in Cross-cultural Research

This paper argues for the importance of eliciting stories when trying to understand the point of view and personal experience of ones informants. It also outlines one approach to eliciting and analyzing narrative data as part of a complex and multi-faceted ethnographic study. The paper draws upon ethnographic research among African-American families who have children with serious illnesses or disabilities. However, it is not a report of research findings per se. Rather, it is primarily a conceptual paper that addresses narrative as a research method. Features that distinguish a story from other sorts of discourse are sketched and current discussions in the occupational therapy and social science literature concerning the importance of narrative are examined. The heart of the paper focuses on a single narrative interview and examines what we learn about the client and family caregiver perspective through stories.

The Particularities of Engagement: Intersubjectivity in Occupational Therapy Practice

Some therapeutic practices, and occupational therapy in particular, require heightened forms of engagement and involve jointly coordinated actions that are grounded in intersubjective processes. These interactional processes enable people to be together in particular ways, co-create and share experiences, and coordinate actions. Qualities of engagement in therapeutic practices are analyzed in terms of the interrelatedness of the social actors and the investment in the doing of the occupations. Interpretive examples are provided from an interdisciplinary, longitudinal, urban ethnographic study of a cohort of African-American children, their families, and the practitioners with whom they engage in healthcare encounters. Findings include the use of vehicles for engagement to enhance participation, transactional features of jointly constructed clinical activities, and experiential and developmental aspects of childrens engagement in therapeutic practices. Engagement is discussed as a mediator of effectiveness and contributing factor to the “mattering” of therapy. Implications for clinical and research practices are provided.

I/We Narratives Among African American Families Raising Children with Special Needs

This paper examines a statistics debate among African American caregivers raising children with disabilities for insights into the work of “African American mothering.” Using ethnographic, narrative and discourse analyses, we delineate the work that African American mothers do—in and beyond this conversation—to cross ideological and epistemological boundaries around race and disability. Their work entails choosing to be an “I” and, in some cases, actively resisting being seen as a “they” and/or part of a collective “we” in order to chart alternative futures for themselves and their children.

“You Can Turn off the Light If You'd Like”: Pediatric Health Care Visits for Children with Autism Spectrum Disorder as an Interactional Achievement

Substantial scholarship has been generated in medical anthropology and other social science fields on typically developing child-parent-doctor interactions during health care visits. This article contributes an ethnographic, longitudinal, discourse analytic account of a child with autism spectrum disorder (ASD)-parent-doctor interactions that occur during pediatric and neurology visits. The analysis shows that when a child with ASD walks into the doctors office, the tacit expectations about the visit may have to be renegotiated to facilitate the childs, the parents, and the doctors participation in the interaction. A successful visit then becomes a hard-won achievement that requires the interactional and relational work of all three participants. We demonstrate that communicative and sensory limitations imposed by ASD present unique challenges to all the participants and consider how health care disparities may invade the pediatric encounter, making visible the structural and interactional processes that engender them.

Development of a Standardized Telephone Interview Instrument

Although survey research methods have been accepted in the scientific community, applications of telephone interview methods in occupational therapy research and program evaluation studies remain limited. The benefits of telephone interview methods include high response rates, ability to ask exploratory questions, cost-effectiveness, and ability to branch questions to subsets of a study population. Through the process of standardizing research instruments and administration procedures, the reliability of data collected by telephone can be increased substantially. The evaluation of an interview instrument is a critical aspect of study design. Details of an evaluation study and strategies to enhance the process of assessing interview instruments are provided.

Physical Disability and Body Image in Children

Body image for children with physical impairments is multifaceted, shaped by interpersonal experiences and actions in socioculturally infused contexts. This article provides a broad lens for understanding body image including developmental processes, narrative approaches to disability experiences, understandings of the body in clinical and therapeutic environments, and the influence of media and technology. A phenomenological approach to the experience and images of bodies is presented with the caveat that the voices of children with physical disabilities currently have limited exposure in the empirical and theoretical literature.

Understanding lived experiences through multiple perspectives: Caregiving as an exemplar

ABSTRACT Experiences are multidimensional, impactful, and often rooted in occupations, where meaning is felt, and people engage with others and learn about themselves and the world. Experiences are complex phenomena influenced by a multitude of factors, and they have a strong connection to health and well-being. Studies of lived experiences have been central to the development of occupational science. Capturing the essence of experiences can be challenging, but integrating data from multiple perspectives in research designs is a valuable strategy to address challenges to understanding experiences, including their interpersonal, interdependent, and intersubjective natures. This is especially critical for understanding circumstances in which two or more people share experiences or coordinate action together, such as in cases of caregiving. In this paper, we outline the strength and utility of methodological approaches that integrate multiple perspectives in order to understand experiences as they are situated beyond the individual. We draw on original data from a narrative and phenomenological study of lived experiences among adolescents and young adults with spinal cord injuries and their caregivers as an exemplar for discussion. Relative contributions to occupational science and limitations of a multi-perspective approach are considered.

Beyond V40.31 : Narrative Phenomenology of Wandering in Autism and Dementia

Research on autism spectrum disorder (ASD) and on Alzheimer’s Disease (AD) and other types of dementia describes a behaviour called ‘wandering’, a term that denotes movement through space lacking intention or exact destination, as when a person is disoriented or not self-aware. In the U.S., ‘wandering’ in both ASD and AD has been examined mostly from a management and prevention perspective. It prioritizes safety while primarily overlooking personal experiences of those who ‘wander’ and their families, thus limiting the range of potentially effective strategies to address this issue. Communicative challenges faced by many people diagnosed with ASD and AD further obscure the experiential, existential aspects of ‘wandering’. This article reflects an increasing concern of social science scholars interested in whether and how the conceptual and practical strategies to address ‘wandering’ are informed by the situated experiences of people with cognitive and developmental disabilities and their families. We examine ‘wandering’ at the intersections of personal experience, family life, clinical practice, public health policy, and legislation, as a conceptually rich site where notions of personhood, subjectivity, intentionality, and quality of life powerfully and consequentially converge to impact the lives of many people with ASD and AD, and their families. We draw upon critical autism studies describing how attributions of personhood, subjectivity, intentionality, rational agency, and moral autonomy of people with ASD have been contingent upon the norms and conventions governing movement of the human body through space (Hilton, Afr Am Rev 50(2):221–235, 2017). When this movement is deemed aberrant, the person may be construed as irrational, a danger to self because of a lack of self-awareness, and a danger to others because of a lack of empathy. These attributions put the person at risk of being excluded from the considerations and, more importantly, the obligations of the ‘moral community’ to ensure that he or she has a ‘good human life’ (Barnbaum, The Ethics of Autism: Among Them but not of Them. Indiana University Press, Bloomington, 2008; Silvers and Francis, Metaphilosophy 40(3/4):475–498, 2009). Using ethnographic, narrative phenomenological (Mattingly, The Paradox of Hope: Journeys through a Clinical Borderland. Berkeley: University of California Press, 2010), and medical humanities (Charon, JAMA 286:1897–1902, 2001; Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press, 2006) approaches, we examine multiple perspectives on ‘wandering’ in ASD and AD across narrative discourse genres, institutional contexts, and media of representation. We argue for an extension of the prevention and management view to focus not only on safety but also on what phenomenologist Merleau-Ponty (1962) called “having a world” (p. 146). The analysis is intended to inform clinical practice, policy and public health efforts to enhance understanding of first and second person perspectives on ‘wandering’ in order to improve the participation and quality of life of people with ASD and AD who ‘wander’, and their families.