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1.
Prog Transplant ; 31(1): 55-61, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33353498

RESUMO

INTRODUCTION: The Living Donor Navigator (LDN) program is one of several initiatives designed to help transplant candidates identify living donors with the help of a friend or family member advocate to speak on their behalf. More than half of advocates in the LDN program were the spouse or parent of the candidate and served in a caregiving role. Caregivers for patients awaiting transplantation have reported poorer quality of life than the general population, suggesting more support is needed for this vulnerable group. The purpose of this study was to understand whether the LDN program met the needs of advocates who were also caregivers for the transplant candidate. METHODS: We performed a supplementary secondary qualitative analysis of a parent study conducted December 2017-January 2018 with 9 advocates who participated in the LDN program. Transcripts were reanalyzed from focus group discussions, concentrating on comments about caregiving or made by caregivers. Using manual coding and reflexive thematic analysis, we identified broad codes and major themes. FINDINGS: Our re-analysis revealed one theme overlapping with our previous analysis (Support) and 2 new themes specific to caregiver advocates: Quality of Life and Fear. Caregivers agreed that the LDN program equipped them with tools to address these areas and best serve their simultaneous caregiver/advocate roles. DISCUSSION: These analyses demonstrated that those who served as advocate and caregiver derived a benefit from the LDN program but had distinct needs from other advocates. These findings can inform continued refinement of the program and expansion to support needs of caregiver.


Assuntos
Cuidadores , Doadores Vivos , Família , Grupos Focais , Humanos , Qualidade de Vida
2.
J Racial Ethn Health Disparities ; 6(4): 707-718, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-30747331

RESUMO

Using a concurrent mixed methods design, we investigated how knowledge, attitudes, values, and beliefs among women with osteoporosis can explain racial disparities in bone health. We recruited African American and White women ≥ 65 years of age with osteoporosis to participate in focus groups. We quantitatively compared scores of the "Osteoporosis & You" knowledge scale and each domain (internal, powerful others, and chance) of the Multidimensional Health Locus of Control scale by race using t tests. We qualitatively explored potential racial differences in attitudes, values, and beliefs in the domains: (1) osteoporosis and bone health concerns, (2) knowledge about osteoporosis, (3) utilization of medical services for osteoporosis, (4) facilitators of osteoporosis prevention activities, and (5) barriers to osteoporosis prevention activities. A total of 48 women (White: 36; African American: 12) enrolled in the study. White women had a mean (SD) of 7.8 (0.92), whereas African American women score a 6.6 (2.6) (p = 0.044) out of 10 on the Osteoporosis & You Scale. The powerful others domain was significantly higher among African American for both general and bone health [General Health - African American: 26.7 (5.9) vs. White: 22.3 (3.8); p = 0.01]. Qualitative thematic analysis revealed differences by race in knowledge, types of physical activity, coping with comorbidities, physician trust, religion, and patient activation. Using both quantitative and qualitative methods, our study identified racial differences in knowledge, attitudes, and beliefs in women with osteoporosis that could result in racial disparities in bone health, indicating the need to improve education and awareness about osteoporosis in African American women.


Assuntos
Negro ou Afro-Americano/psicologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Serviços de Saúde/estatística & dados numéricos , Disparidades nos Níveis de Saúde , Osteoporose/etnologia , Adaptação Psicológica , Idoso , Idoso de 80 Anos ou mais , Comorbidade , Exercício Físico , Feminino , Grupos Focais , Humanos , Osteoporose/prevenção & controle , Participação do Paciente , Fatores Socioeconômicos , Confiança , População Branca
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