Using Shared Medical Appointments for Delivering Patient-Centered Care to Cancer Survivors: A Feist-Weiller Cancer Center Pilot Study.

Background: Shared medical appointments (SMAs) have shown promise in the care of patients with conditions such as diabetes; however, the impact of lifestyle medicine-based SMAs on the overall health status of cancer survivors remains poorly understood. Materials and Methods: This cross-sectional survey of patients was conducted to study the impact of a unique lifestyle medicine-based survivorship program on cancer survivors. Results: A total of 64 patients were telephonically contacted for the survey, out of which 39 (60.9%) patients responded. All patients (39 of 39, 100%) found the program to be helpful in some way; 26 patients (66.7%) found SMAs to be significantly helpful, while 13 patients (33.3%) found SMAs as only somewhat helpful. The majority noted feeling a great sense of support (35 of 39, 89.7%), followed by improvement in appetite (21 of 39, 54%) and improvement in pain (14 of 39, 35.9%). All patients reported at least some improvement in subjective well-being (SWB); patients who attended >3 appointments reported significant/very significant improvement in SWB (P = .03). Conclusion: SMAs offer promise in the effective delivery of lifestyle medicine-focused care to cancer survivors. Further prospective studies are needed to validate these findings.

Underserved and Undermeasured: a Mixed-Method Analysis of Family-Centered Care and Care Coordination for Low-Income Minority Families of Children with Autism Spectrum Disorder.

This study examined how a racially and socioeconomically diverse group of caregivers of children with autism spectrum disorder (ASD) responds to national standard measures of family-centered care (FCC) and care coordination (CC) and what aspects of quality care are missing from these measures. Based on survey and interview data collected from 70 caregivers who have a child with ASD that receive services at a community-based autism clinic located in Atlanta, GA, we compared proportions of answers to FCC and CC questions to national and state representative data using chi-square analyses and contextualized our findings through a thematic analysis of qualitative interviews. Compared to national- and state-level data, the Atlanta autism clinic data had a higher percentage of participants who identified as Black, relied on public health insurance, and lived below 200% of the federal poverty line. The Atlanta autism clinic responses were significantly more positive in four measures of FCC but significantly less effective in two CC measures, including a lower reported percentage who received CC and greater reported percentage who needed extra help. Qualitative data revealed a range of positive meanings and challenges associated with FCC and identified areas of help needed beyond CC, including physical and mental health care and emotional connection, especially for low-income single Black female caregivers. Our mixed-method approach identified strengths in FCC, barriers to CC, and suggestions for developing more pragmatic questions in national surveys that address experiences of quality-of-care among low-income, racial minority families of children with ASD.

Autism Disparities: A Systematic Review and Meta-Ethnography of Qualitative Research.

Racial, ethnic, and socioeconomic disparities associated with autism spectrum disorder (ASD) are evident across many service domains including access to early assessment, diagnosis, and therapeutic interventions. To better understand the complex social and structural factors contributing to these disparities, this article offers a systematic review of peer-reviewed qualitative research conducted from 2010 to 2016 in the United States that investigates autism disparities experienced by marginalized communities. Based on these criteria, we identified 24 qualitative research studies and conducted an analysis using meta-ethnography and an intersectional interpretive lens. We identified three interdependent themes contributing to autism disparities, including familial, cultural, and structural barriers. Omissions in the literature were also evident, including a lack of research on underserved adults with ASD and the gendered inequities of caregiving. We discuss the implications of our findings and offer new questions that take an intersectional approach using qualitative research to investigate autism disparities.

Parenting work and autism trajectories of care.

This study investigates the work and care associated with raising a child with disabilities in the United States. Based on in-depth interviews with parents who have a child with autism, it develops the notion of parenting work and trajectories of care to investigate how parents navigate and coordinate the challenges of getting an autism diagnosis, obtaining educational services, and re-contextualising the possibilities for the future. I argue that parents embody a complex mix of love, hope, and responsibility in parenting work and trajectories of care that expands temporal and social elements of illness work and trajectories initially developed by Anselm Strauss and colleagues. This type of parenting work changes over time and is influenced by social structural forces and relationships in which the care takes place. The re-articulation of these analytic tools also begins to untangle the intricate mix of both medical and social models of disability that parents embrace and continuously negotiate. This study demonstrates how parents accept the medical model of disability by seeking and pushing for a clinical autism diagnosis and subsequent treatments, while at the same time challenge the limits placed on their children by providing them with opportunities, possible futures, and a sense of personhood. A Virtual Abstract of this paper can be accessed at: https://www.youtube.com/watch?v=x0UmGvpcjeQ.