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1.
Am J Community Psychol ; 66(3-4): 222-231, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32578886

RESUMO

Childhood asthma disparities persist, with children living in low-income areas experiencing worse morbidity. We partnered with a community-academic research team and stakeholders to conduct a needs assessment to understand barriers and supports to asthma treatment. We convened a community advisory board, comprised of parents of children with asthma, youth with asthma, and members of key community organizations. Two focus groups with parents of children with asthma and four focus groups with youth with asthma were conducted, and a survey was administered to 100 parents. A visual mapping process was used to gather qualitative data about barriers, strategies, and outcomes, and allowed advisory board members to interpret focus group and survey data within the lived experiences of families. Focus group themes included parent stress/anxiety, concerns about school nurses, and lack of trust in providers. Findings from focus groups and surveys suggested that emergency department visits were not perceived negatively by families, although health providers and researchers generally view them as such. Public health implications include systemic changes that allow the healthcare system to address families' acute needs and worry. A community program focused on education and coordination among families, schools, and medical homes might improve asthma outcomes at the population level.


Assuntos
Asma/terapia , Disparidades nos Níveis de Saúde , Avaliação das Necessidades , Adolescente , Adulto , Idoso , Criança , Pré-Escolar , Serviços de Saúde Comunitária , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Pais , Pesquisa Qualitativa , Instituições Acadêmicas , Inquéritos e Questionários , Adulto Jovem
2.
Contemp Clin Trials ; 139: 107483, 2024 04.
Artigo em Inglês | MEDLINE | ID: mdl-38431133

RESUMO

BACKGROUND: Medication non-adherence is common among adolescents and young adults (AYAs) with cancer and associated with poor health outcomes. AYAs with cancer endorse multiple barriers to adherence that differ across individuals, suggesting that tailoring intervention content to an AYA's specific barriers may have the potential to improve adherence. The purpose of this manuscript is to report on ORBIT-guided Phase I design efforts to create the first tailored adherence-promotion intervention for AYAs with cancer and the study protocol for the ongoing Phase II pilot feasibility trial. METHODS: Phase I design included qualitative interviews (n = 15 AYAs) to understand patient preferences for adherence-promotion care, development and refinement of a best-worst scaling exercise barriers tool (n = 5 AYAs), and development of intervention modules and a tailoring algorithm. In the ongoing Phase II pilot feasibility trial, AYAs (ages 15-24 years) with cancer currently taking oral chemotherapy or prophylactic medication will be recruited from three children's hospitals. Feasibility, acceptability, and usability will be assessed and these outcomes along with data on medication adherence will be used to inform the next phases of intervention development and testing. CONCLUSIONS: If promising, this program of research ultimately has the potential to equip clinicians with additional strategies for supporting adherence among AYAs with cancer. NCT05706610.


Assuntos
Neoplasias , Adolescente , Humanos , Adulto Jovem , Estudos de Viabilidade , Adesão à Medicação , Neoplasias/tratamento farmacológico , Projetos Piloto , Projetos de Pesquisa , Ensaios Clínicos Fase II como Assunto
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