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5. Informal Caregivers’ Perceptions of Facilitators of Successful Weight Management for People With Spinal Cord Injury

Author

Pedersen, Jessica Presperin, Ehrlich-Jones, Linda S., Heinemann, Allen W., and LaVela, Sherri L.

Subjects
Research Articles
Abstract

Importance: Informal caregivers have valuable insights that occupational therapists can use to prevent and manage problems that may arise in people with spinal cord injury (SCI) because of a lack of physical activity and poor nutrition. Objective: To assess caregiver-identified facilitators of weight management in people with SCI. Design: Descriptive qualitative design using semistructured interviews and thematic analysis. Setting: Regional SCI Care Model System and Veterans Health Administration. Participants: Informal caregivers (n = 24) of people with SCI. Outcomes and Measures: Facilitators of successful weight management in care recipients with SCI. Results: Four themes were identified as weight management facilitators: healthy eating (subthemes: food content, self-control, self-management, and healthy preinjury lifestyle), exercise and therapy (subthemes: occupational and physical therapy, receiving assistance, and resources for exercise), accessibility, and leisure activity or activities of daily living, the latter described as a source of activity (because of required energy expenditure) to facilitate weight management for people with more severe injuries. Conclusions and Relevance: These findings can inform the development of successful weight management plans by occupational therapists by incorporating feedback from informal caregivers. Because caregivers are involved in many of the facilitators identified, occupational therapists should communicate with the dyad about sourcing accessible places to increase physical activity and assessing in-person assistance and assistive technology needs to promote healthy eating and physical activity. Occupational therapists can use informal caregiver–identified facilitators of weight management to help prevent and manage problems for people with SCI secondary to limited activity and poor nutrition. What This Article Adds: Occupational therapy practitioners provide therapeutic intervention to people with SCI; this includes attention to weight management from the time of initial injury throughout their lives. This article is novel in the presentation of informal caregivers’ perceptions about successful facilitators of weight management among people with SCI, which is important because caregivers are intimately involved in the daily activities of people with SCI and can be a liaison for occupational therapists and other health care providers about ways to facilitate healthy eating and physical activity.

Published
2023

27. Presentation abstracts

Author

Rice, Laura, primary, Sung, JongHun, additional, Keane, Kathleen, additional, Peterson, Elizabeth, additional, Sosnoff, Jacob, additional, Farkas, Gary, additional, Swartz, Ann, additional, Strath, Scott, additional, Gorgey, Ashraf, additional, Berg, Arthur, additional, Gater, David, additional, Dyson-Hudson, Trevor, additional, Malanga, Gerard, additional, Cherian, Chris, additional, Michalec, Monica, additional, Kirshblum, Steven, additional, Miller, Carrie, additional, Garlanger, Kristin, additional, Kortes, Sam, additional, Schnorenberg, Alyssa, additional, Slavens, Brooke, additional, Lee, Kenneth, additional, Potter-Baker, Kelsey, additional, Frost, Frederick, additional, Plow, Ela, additional, Solinsky, Ryan, additional, Wilson, Catherine, additional, Henry, Carrie Ann, additional, Lombard, Alexander, additional, Maher, Matthew, additional, Weir, Joseph, additional, Saeed, Sana, additional, Cirnigliaro, Christopher, additional, Specht, Adam, additional, Garbarini, Erica, additional, Augustine, Jonathan, additional, Forrest, Gail, additional, Bauman, William, additional, Wecht, Jill, additional, Hearn, Jasmine, additional, Razvi, Imaduddin S., additional, Sikka, Seema, additional, Callender, Librada, additional, Bennett, Monica, additional, Robertson, Keston, additional, Driver, Simon, additional, Kline-Quiroz, Cristina, additional, Donovan, Jayne, additional, Botticello, Amanda, additional, Arnold, Dannae, additional, Latham, Nancy, additional, Houlihan, Bethlyn, additional, Bickmore, Timothy, additional, Trinh, Ha, additional, Shamekhi, Ameneh, additional, Ellis, Teresa, additional, LaVela, Sherri L., additional, Burkhart, Elizabeth, additional, Kale, Ibuola, additional, Bombardier, Charles, additional, Snoxell, Ellen, additional, Knezevic, Steven, additional, Hong, EunKyoung, additional, Asselin, Pierre, additional, Kornfeld, Stephen, additional, Gorman, Peter, additional, Spungen, Ann, additional, Castillo, Camilo, additional, Cleveland, Christine, additional, Gabet, Joelle, additional, Harrington, Amanda, additional, Arenth, Patricia, additional, Dolbow, David, additional, Luther, Stephen, additional, Finch, Dezon, additional, Bouayad, Lina, additional, Kopp, Marcel, additional, Watzlawick, Ralf, additional, Martus, Peter, additional, Failli, Vieri, additional, Finkenstaedt, Felix, additional, Chen, Yuying, additional, DeVivo, Michael, additional, Dirnagl, Ulrich, additional, Schwab, Jan, additional, LiMonta, James, additional, Santiago, Tiffany, additional, Wu, Yu-Kuang, additional, Harel, Noam, additional, Monden, Kimberley, additional, Trost, Zina, additional, Nguyen, Nguyen, additional, Morse, Leslie, additional, Boals, Adriel, additional, Wenzel, Lisa, additional, Silveira, Stephanie, additional, Hughes, Rosemary, additional, Nosek, Margaret, additional, LeDoux, Tracey, additional, Taylor, Heather, additional, Diaz, Lauren, additional, Robinson-Whelen, Susan, additional, Garshick, Eric, additional, Betz, Kendra, additional, Krause, James, additional, Cao, Yue, additional, Li, Chao, additional, Hon, Beverly, additional, Khong, Cria –May, additional, Dirlikov, Ben, additional, Shem, Kazuko, additional, Charlifue, Susan, additional, Song, Shawn, additional, and Burns, Stephen, additional

Published
2018
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32. Experience and Utility of Using the Participatory Research Method, Photovoice, in Individuals With Spinal Cord Injury.

Author

Balbale, Salva, Hill, Jennifer N., and LaVela, Sherri L.

Abstract

Background: There is a need to engage persons with spinal cord injuries/disorders (SCI/D) in research methodologies beyond traditional approaches. This provides an opportunity for individuals to convey their perspectives in a variety of ways. Photovoice empowers people to share their perspectives through photographs and narrative; this is well-suited for individuals who are less comfortable speaking up when other methods are used, such as focus groups. Objective: To examine photovoice methodology in US Veterans with SCI/D to describe their experiences with and the utility of photovoice. We also provide a sample of content (qualitative data) to illustrate how individuals with SCI/D conceptualized function and factors important to them. Methods: Photovoice, a qualitative participatory research method, was used to collect photographs from Veterans with SCI/D, which was followed by personal narratives describing the meaning of their photos. Results: Participants (N = 9) were 64 years old, on average, and 75% had paraplegia. Participants discussed the challenges with taking photographs, but they enjoyed participating, appreciated inclusion, and hoped the information they provided would help others with disabilities. Conclusion: These findings suggest that despite challenges and ethical barriers, individuals with SCI/D are interested in, highly capable of, and should be given the opportunity to be included in studies like this that empower participants to share their views using novel ways of expression. These findings demonstrate the desirability, feasibility, and utility of using photovoice in individuals with SCI/D. This method may be used to understand factors impacting health and well-being and can be made available to individuals with SCI/D to minimize inequalities in research opportunities. [ABSTRACT FROM AUTHOR]

Published
2018
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36. Patient-centred care is a way of doing things: How healthcare employees conceptualize patient-centred care.

Author

Fix, Gemmae M., VanDeusen Lukas, Carol, Bolton, Rendelle E., Hill, Jennifer N., Mueller, Nora, LaVela, Sherri L., and Bokhour, Barbara G.

Subjects
PSYCHOLOGY of executives, INTERVIEWING, RESEARCH methodology, MEDICAL cooperation, MEDICAL personnel, SENSORY perception, RESEARCH, RESEARCH funding, VETERANS' hospitals, QUALITATIVE research, THEMATIC analysis, PATIENT-centered care, DATA analysis software, HEALTH facility employees, FIELD notes (Science), PSYCHOLOGY
Abstract

Background Patient-centred care is now ubiquitous in health services research, and healthcare systems are moving ahead with patient-centred care implementation. Yet, little is known about how healthcare employees, charged with implementing patient-centred care, conceptualize what they are implementing. Objective To examine how hospital employees conceptualize patient-centred care. Research Design We conducted qualitative interviews about patient-centred care during site four visits, from January to April 2013. Subjects We interviewed 107 employees, including leadership, middle managers, front line providers and staff at four US Veteran Health Administration ( VHA) medical centres leading VHA's patient-centred care transformation. Measures Data were analysed using grounded thematic analysis. Findings were then mapped to established patient-centred care constructs identified in the literature: taking a biopsychosocial perspective; viewing the patient-as-person; sharing power and responsibility; establishing a therapeutic alliance; and viewing the doctor-as-person. Results We identified three distinct conceptualizations: (i) those that were well aligned with established patient-centred care constructs surrounding the clinical encounter; (ii) others that extended conceptualizations of patient-centred care into the organizational culture, encompassing the entire patient-experience; and (iii) still others that were poorly aligned with patient-centred care constructs, reflecting more traditional patient care practices. Conclusions Patient-centred care ideals have permeated into healthcare systems. Additionally, patient-centred care has been expanded to encompass a cultural shift in care delivery, beginning with patients' experiences entering a facility. However, some healthcare employees, namely leadership, see patient-centred care so broadly, it encompasses on-going hospital initiatives, while others consider patient-centred care as inherent to specific positions. These latter conceptualizations risk undermining patient-centred care implementation by limiting transformational initiatives to specific providers or simply repackaging existing programmes. [ABSTRACT FROM AUTHOR]

Published
2018
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38. Examining Participation among Persons with Spinal Cord Injuries and Disorders Using Photovoice.

Author

Balbale, Salva, Lones, Keshonna, and LaVela, Sherri L.

Subjects
SPINAL cord injuries, THERAPEUTICS, PATIENTS with spinal cord injuries, COMMUNITY involvement, PHOTOVOICE (Social action programs), VETERANS -- Social aspects, QUALITATIVE research
Abstract

Participation is a significant rehabilitation outcome for individuals with spinal cord injury and/or disorder (SCI/D), yet few qualitative studies have described the social aspect of disability and community participation. We used the photovoice methodology to explore perceptions and experiences related to participation among Veterans with SCI/D. We recruited a convenience sample of individuals with SCI/D at the Hines Veterans Affairs (VA) SCI/D Unit. Participants were asked to take photographs exemplifying their experiences and activities regarding participation. Within four weeks, participants returned their photographs and completed semi-structured interviews to discuss their photographs. Interview transcripts were analyzed using an inductive coding approach to identify emerging themes. Of the 18 Veterans with SCI/D who completed the initial orientation session, 9 (50%) completed the photography phase and follow-up interviews. A majority of participants were White (67%) and the mean age was 64 years. The mean duration of injury was 21.8 years, and 75% of participants were paraplegic. Most participants (78%) were community-dwelling. All participants discussed participation as a highly relevant issue in their lives. A majority of participants (67%) described sports as an example of participation. Over half (56%) emphasized the positive effects of participation (i.e., feelings of enjoyment / accomplishment) in sports as well as engaging in faith-based activities, being outdoors, and managing business- or household-related responsibilities. Barriers to participation were mobility impairments, lack of transportation and cost. Findings from this study can be used to address environmental changes or other accommodations that influence participation, both inside and outside the health care setting. [ABSTRACT FROM AUTHOR]

Published
2017

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