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1.
Artigo em Inglês | MEDLINE | ID: mdl-38056777

RESUMO

PURPOSE: Hope is important in serious illnesses, as it has been linked to patient quality of life. We aimed to determine factors associated with lower hope scores among patients with central nervous system disease or bone metastases. METHODS AND MATERIALS: The Adult Dispositional Hope Scale (AHS) is a 12-item questionnaire that measures hope through 2 qualities: agency (goal-directed energy) and pathways (plan to meet goals). Total scores range from 8 to 64, with higher scores reflecting higher agency and pathways thinking. We prospectively collected scores from patients seen in 2 radiation oncology clinics at our institution from October 2022 to April 2023. The method of least squares to fit general linear models and Pearson's correlation coefficients was used to determine relationships between AHS score and socioeconomic and disease factors. RESULTS: Of the 197 patients who responded, the median age was 60.5 years (range, 16.9-92.5 years) and most patients were male (60.9%), were White (59.4%), and had malignant disease (59.4%). The median overall AHS score was 54 (range, 8-64), and median pathway and agency thinking scores were 27 (range, 4-32) and 27 (range, 4-32), respectively. Patients who needed an interpreter compared with those who did not had significantly lower overall AHS scores (mean score, 45.4 vs 51.2, respectively; P = .0493) and pathway thinking scores (mean score, 21.5 vs 25.7, respectively; P = .0085), and patients with poorer performance status had significantly worse overall AHS scores (Pearson's correlation coefficient = -0.2703, P = .0003). CONCLUSIONS: Patients with central nervous system disease or bone metastases requiring the use of an interpreter had lower AHS scores, highlighting the possible association of language barriers to hope. Addressing patient language barriers and further studies on the possible association of language barriers to hope may improve hope, quality of life, and outcomes among these patients.

3.
Pediatr Surg Int ; 37(4): 431-435, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33475771

RESUMO

PURPOSE: After treating many adopted patients with congenital colorectal conditions, our goal was to understand if parents were properly counseled about their child's medical needs before adoption. METHODS: A comprehensive questionnaire was developed. Recruitment occurred by social media and colorectal database. RESULTS: 48 parents participated. Adopted children were primarily male (60%), internationally adopted (75%), and a median age of 2.5 years (range newborn-13yo). While 96% of parents received medical records, 41% had incorrect/missing information. Most patients had an anorectal malformation (83%, Table 1), and a third had the primary pull-through prior to adoption (16). Nearly all required a surgical procedure after adoption (87%), including a redo pull-through (19%). Children were frequently incontinent of stool (83%) and urine (46%). In some families, the medical condition negatively affected the relationship between the parent and adopted child (12.5%), parent and other siblings (40.5%), and adopted child and other siblings (19%). 58% of parents state managing their child's medical condition was more difficult than anticipated. Family, friends, and the medical team was noted as the most helpful support systems. Table 1 Colorectal diagnoses Diagnosis Number of Participants Percentage (%) ARM (Unknown) 11 23 Cloaca 8 17 Cloacal Exstrophy 4 8 ARM No Fistula 3 6 Rectobulbar Fistula 3 6 Rectovestibular Fistula 3 6 Hirschsprung's Disease 3 6 Rectoprostatic Fistula 2 4 Spina Bifida 2 4 Rectoperineal Fistula 1 2 Rectovaginal Fistula 1 2 Rectobladderneck Fistula 1 2 Complex Malformation 1 2 Rectal Atresia 1 2 Rectal Stenosis 1 2 Idiopathic Constipation 1 2 Sacral Agenesis 1 2 Sacrococcygeal Teratoma 1 2 CONCLUSION: We strongly recommend putting support systems in place, obtaining as much medical information as possible, preparing for possible lifelong management, and consulting with a specialized colorectal team before adoption.


Assuntos
Adoção , Malformações Anorretais/psicologia , Pais/psicologia , Adolescente , Adulto , Malformações Anorretais/cirurgia , Criança , Pré-Escolar , Aconselhamento , Anormalidades do Sistema Digestório , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Recém-Nascido , Masculino , Prontuários Médicos , Pessoa de Meia-Idade , Avaliação das Necessidades , Doenças Retais , Inquéritos e Questionários
4.
Artigo em Inglês | MEDLINE | ID: mdl-24375182

RESUMO

BACKGROUND: Community advisory committees (CACs) increasingly are formed to cultivate partnerships between researchers and communities. OBJECTIVES: This article details the processes used to recruit CAC members, the purpose and structure of the committees, members' motivation to participate, and examples of member input and influence. METHODS: In-depth interviews, meeting notes, and partners' reflections were synthesized to identify key lessons regarding establishing and sustaining effective CACs. LESSONS LEARNED: Findings highlight the need for partner agreement on the role of CACs, structured meeting procedures, intentional integration of CAC input into project activities, and training on sharing research information with the community. CONCLUSIONS: CAC members' expertise regarding indigenous culture and experiences increased the project relevance for workers and strengthened research and intervention efforts. Members also reported greater knowledge of safety, health, and workers' rights, and increased confidence to share information. This influence extends beyond the project and contributes to sustained change among CAC members and in the participating communities.


Assuntos
Doenças dos Trabalhadores Agrícolas/prevenção & controle , Agricultura , Pesquisa Participativa Baseada na Comunidade , Promoção da Saúde/organização & administração , Exposição Ocupacional/efeitos adversos , Praguicidas/intoxicação , Doenças dos Trabalhadores Agrícolas/epidemiologia , Feminino , Humanos , Entrevistas como Assunto , Masculino , Oregon/epidemiologia , Desenvolvimento de Programas , População Rural , Populações Vulneráveis
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