A Qualitative Study of Caregiving for Adolescents and Young Adults With Spinal Cord Injuries: Lessons From Lived Experiences.

Objective: To examine characteristics of caregiving from the perspectives of adolescents and young adults (AYAs) with spinal cord injuries (SCIs) and their informal caregivers to address outstanding gaps in knowledge relating to definitions of caregiving and its associated practices for this population. Methods: A multiphase qualitative design was applied, using phenomenological and narrative methods to capture data in participants' homes and communities. Participants were recruited from rehabilitation hospitals and community organizations throughout Los Angeles County, California. Inclusion criteria for AYAs included being 15-22 years old, having acquired an SCI within the previous 5 years, and using a wheelchair for mobility. The AYAs nominated persons they identified as primary caregivers to also participate. Data were collected through individual and group interviews as well as activity observations. Results: Data from the 17 participants (9 AYAs and 8 informal, primary caregivers) revealed ways in which the meaning of caregiving varied among dyads. Caregiving practices extended beyond physical assistance to include support for a range of day-to-day activities spanning from practical needs to facilitating developmental trajectories. Although AYAs expressed ideas about preferred caregiver characteristics, care partnerships appeared to be guided more by availability than preference. Conclusion: Phenomenological analysis revealed that the meaning of "caregiving" and its associated practices are highly individualized for AYAs with SCIs. Caregiving is rooted in personal needs related to effects of SCI and developmental goals. Everyday practices are shaped by individual relationships and the beliefs of AYAs and their caregivers. Addressing influences of caregiving on long-term health and function may require attention to developmental processes, caregiver "fit," and ways care is, or can be, distributed throughout broader networks according to personal needs and preferences.

Catalyzing Research to Optimize Cancer Survivors' Participation in Work and Life Roles.

Participation refers to a state of health in which a person is able to fully engage in roles and life situations. Adults living with and beyond cancer often report persistent participation restrictions that affect their productivity and quality of life. The American Occupational Therapy Foundation convened a group of scientists from seven different disciplines in a Planning Grant Collective (PGC) to stimulate research to identify scalable ways to preserve and optimize participation among cancer survivors. Participants identified challenges, prioritized solutions, and generated novel research questions that move beyond symptom and impairment mitigation as outcomes to identify interventions that improve participation in roles and life situations. This article summarizes the PGC discussion and recommendations regarding three challenges: (a) the dynamic and multi-faceted nature of participation, (b) a need to integrate the concept of participation within the culture of oncology, and (c) identification of priority areas in which new lines of research regarding participation would be most impactful.

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.

"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 doctor's office, the tacit expectations about the visit may have to be renegotiated to facilitate the child's, the parent's, and the doctor's 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.

"And I look down and he is gone": narrating autism, elopement and wandering in Los Angeles.

'Wandering' and 'elopement' have been identified as common in autism, affecting half of all diagnosed children ages four to ten, yet families rarely receive advice from practitioners even after the fact. Family perspectives have been missing from the literature as well as from public health and policy debates on how and when to respond to this problem. The problem of 'wandering' and 'elopement' reveals a complex intersection of larger issues encountered by families of children with autism. To consider these issues, this article examines 'wandering' and 'elopement' from the perspectives of African American mothers of children with autism, an underrepresented group in autism research. We consider how the mothers experience these behaviors and the response to these behaviors by professionals, such as service coordinators and law enforcement personnel working within various jurisdictions that become involved with the problem. We analyze the mothers' narratives about 'wandering' and 'elopement' drawn from ethnographic interviews that were collected between October 1, 2009 and August 31, 2012. These interviews were part of a larger project on disparities in autism diagnosis and services that followed a cohort of 25 four to ten-year old children. Drawing on narrative, phenomenological and interpretive traditions, we trace the mothers' developing understandings of 'wandering' and 'elopement' over time, and show how these understandings become elaborated and transformed. This article provides a nuanced, moment-to-moment and longitudinal picture of the mothers' experiences of 'wandering' and 'elopement' that enriches the cross-sectional view of large-scale surveys about the problem and contributes unique insights at the family and community levels. Implications for professional awareness, clinical practice and service provision are also suggested.

The significance of being occupied: the social construction of childhood occupations.

The purpose of this paper is to explore theoretical and developmental foundations for interpreting childrens hood engagement with activity in the typically social worlds of childhood. Drawing upon longitudinal ethnographic children data, I argue for the need to reframe the study of childhood occupation to the study of "socially occupied beings" as a means of enhancing our understanding of children's experiences. The focus is on childhood experiences that are socially constructed through adult and child co-created action sequences. The unit of analysis is constructed around a child or children, their adult partners in action, the social world of engagement, and proposed the cultural context. The interpretive focus is on acts and actors, acting in a socially constructed world. Two pation, microethnographic examples are provided; the first relates to an observation of a mother and her children playing in a hospital corridor and the second to an occupational therapist and child engaged in jointly constructed activity within a therapy session. These segments illustrate pragmatic and conceptual understandings of the interconnectedness of social relatedness, intersubjectivity, social action, and engagement. Further development of theoretical and research models is needed to capture the essence of children as socially occupied beings, doing something with someone else that matters.

Gazing anew: the shift from a clinical gaze to an ethnographic lens.

The purpose of this paper is to analyze ways of perceiving, knowing, and being with others while engaging in qualitative and ethnographic research. As occupational therapists acquire research expertise and embark on research trajectories, they bring their clinical legacy into the research arena. The ability to conduct qualitative and ethnographic projects may require a reconfiguration of the clinical gaze of occupational therapists. This transformation is complex and also involves acquiring and adopting a stance that alters relational and interpersonal processes and results in new ways of seeing and being. I draw upon experiences in training, mentoring, and supervising therapists who embark on ethnographic research, as well as my own research practices, to illustrate points of intersection and divergence between the clinical gaze and ethnographic lens. Artistic metaphors are also used to highlight aspects of the interactional and intersubjective processes intrinsic to ethnographic practices. I argue that ethnographers are continually evaluating and negotiating their stance in the field. The clinician who becomes an ethnographer faces unique challenges to his or her stance in the midst of moment to moment encounters as well as over time in the course of prolonged engagement.