More than medications: a patient-centered assessment of Parkinson's disease care needs during hospitalization.

Background: Parkinson's disease (PD) increases the risk of hospitalization and complications while in the hospital. Patient-centered care emphasizes active participation of patients in decision-making and has been found to improve satisfaction with care. Engaging in discussion and capturing hospitalization experience of a person with PD (PwP) and their family care partner (CP) is a critical step toward the development of quality improvement initiatives tailored to the unique hospitalization needs of PD population. Objectives: This qualitative study aimed to identify the challenges and opportunities for PD patient-centered care in hospital setting. Methods: Focus groups were held with PwPs and CPs to capture first-hand perspectives and generate consensus themes on PD care during hospitalization. A semi-structured guide for focus group discussions included questions about inpatient experiences and interactions with the health system and the clinical team. The data were analyzed using inductive thematic analysis. Results: A total of 12 PwPs and 13 CPs participated in seven focus groups. Participants were 52% female and 28% non-white; 84% discussed unplanned hospitalizations. This paper focuses on two specific categories that emerged from the data analysis. The first category explored the impact of PD diagnosis on the hospital experience, specifically during planned and unplanned hospitalizations. The second category delves into the unique needs of PwPs and CPs during hospitalization, which included the importance of proper PD medication management, the need for improved hospital ambulation protocols, and the creation of disability informed hospital environment specific for PD. Conclusion: PD diagnosis impacts the care experience, regardless of the reason for hospitalization. While provision of PD medications was a challenge during hospitalization, participants also desired flexibility in ambulation protocols and an environment that accommodated their disability. These findings highlight the importance of integrating the perspectives of PwPs and CPs when targeting patient-centered interventions to improve hospital experiences and outcomes.

Collaborative decision-making: A framework for decision-making about life-sustaining treatments in children with medical complexity.

OBJECTIVE: Caregivers of children with medical complexity (CMC) face decisions about life-sustaining treatments (LST) like tracheostomy. We sought to develop a clinically relevant and realistic model for decision-making about tracheostomy placement that might apply to other LST in CMC. DESIGN: This qualitative study, conducted between 2013 and 2015, consisted of 41 interviews with 56 caregivers of CMC who had received tracheostomies and 5 focus groups of 33 healthcare providers (HCPs) at a tertiary-care children's hospital in North Carolina. Participants were asked about their perspectives on the tracheostomy decision-making process. Data were transcribed, and coded. Using thematic content analysis, we inductively developed a tracheostomy decision-making framework and process. RESULTS: Many factors influenced caregivers' decisions, including children's well-being and caregivers' values, faith, knowledge, experience, emotional state, and social factors; preserving the child's life was the most important. HCPs consider many clinical and nonclinical factors; recommending tracheostomy for children with limited survival, perceived poor functioning and quality of life, and progressive conditions is ethically difficult. The framework of tracheostomy decision-making has inter-related caregiver- and HCP-level factors that influence the process. The framework contains elements not captured in a shared decision-making model, but better fits a collaborative decision-making (CDM) model. The tracheostomy CDM process that emerged from the data has two nonsequential components that HCPs could use: (1) gaining understanding and (2) holding decision-making conversations. CONCLUSIONS: CDM could be a useful model for clinicians guiding families about tracheostomy for CMC. The applicability of CDM for decision-making about other LSTs needs further exploration.

Financial burden for caregivers of adolescents and young adults with cancer.

OBJECTIVE: Adolescent and young adult (AYA) cancer survivors are vulnerable to cancer-related financial burden, which is likely shared by their caregivers. This study aims to enhance an existing conceptual model of financial burden by conducting concept elicitation interviews with caregivers to generate knowledge that can be translated to inform instrumental and psychosocial support in cancer care. METHODS: Qualitative concept elicitation interviews were conducted with 24 caregivers of AYA cancer survivors (caregivers of adolescents, n = 12; caregivers of emerging adults, n = 12) recruited from four sites. Constant comparative methods were used to identify themes, and results were interpreted and organized into domains of the conceptual model. We also explored COVID-19 related financial impacts among a subset (n = 12) of caregivers. RESULTS: Seven themes emerged, which varied by age group and strengthened the conceptualization of the model. Themes centered on: (1) direct and indirect costs of cancer; (2) impact of socioeconomic status on financial burden; (3) caregiver desire to shield AYAs from distress due to financial burden; (4) strategies to manage cancer-related costs; (5) worries about AYAs' financial future; (6) seeking and receiving financial support; and (7) navigating the healthcare system. Findings also revealed that COVID-19 exacerbates financial burden for some caregivers. CONCLUSIONS: Building upon our prior work, we have adapted the conceptual model of financial burden to reflect perspectives of AYAs, oncology providers, and now, caregivers. An important next step is to develop a reliable and valid self-report measure of financial burden among caregivers of AYA cancer survivors.

Lessons Learned From a Community-Based Participatory Research Mental Health Promotion Program for American Indian Youth.

Background American Indian (AI) youth have the highest rates of suicide among racial/ethnic minority groups in the United States. Community-based strategies are essential to address this issue, and community-based participatory research (CBPR) offers a model to engage AI communities in mental health promotion programming. Objectives This article describes successes and challenges of a CBPR, mixed-method project, The Lumbee Rite of Passage (LROP), an academic-community partnership to develop and implement a suicide prevention program for Lumbee AI youth in North Carolina. Method LROP was conducted in two phases to (1) understand knowledge and perceptions of existing mental health resources and (2) develop, implement, and evaluate a cultural enrichment program as a means of suicide prevention. Discussion/Results LROP implemented an effective community-academic partnership by (1) identifying and understanding community contexts, (2) maintaining equitable partnerships, and (3) implementing a culturally tailored research design targeting multilevel changes to support mental health. Strategies formed from the partnership alleviated challenges in each of these key CBPR concept areas. Conclusions LROP highlights how a CBPR approach contributes to positive outcomes and identifies opportunities for future collaboration in a tribal community. Using culturally appropriate CBPR strategies is critical to achieving sustainable, effective programs to improve mental health of AI youth.

Lessons learned in community research through the Native Proverbs 31 Health Project.

BACKGROUND: American Indian women have high rates of cardiovascular disease largely because of their high prevalence of hypertension, diabetes, and obesity. This population has high rates of cardiovascular disease-related behaviors, including physical inactivity, harmful tobacco use, and a diet that promotes heart disease. Culturally appropriate interventions are needed to establish health behavior change to reduce cardiovascular disease risk. COMMUNITY CONTEXT: This study was conducted in Robeson County, North Carolina, the traditional homeland of the Lumbee Indian tribe. The study's goal was to develop, deliver, and evaluate a community-based, culturally appropriate cardiovascular disease program for American Indian women and girls. METHODS: Formative research, including focus groups, church assessments, and literature reviews, were conducted for intervention development. Weekly classes during a 4-month period in 4 Lumbee churches (64 women and 11 girls in 2 primary intervention churches; 82 women and 8 girls in 2 delayed intervention churches) were led by community lay health educators. Topics included nutrition, physical activity, and tobacco use cessation and were coupled with messages from the Proverbs 31 passage, which describes the virtuous, godly woman. Surveys collected at the beginning and end of the program measured programmatic effects and change in body mass index. OUTCOME: Churches were very receptive to the program. However, limitations included slow rise in attendance, scheduling conflicts for individuals and church calendars, and resistance to change in cultural traditions. INTERPRETATION: Churches are resources in developing and implementing health promotion programs in Christian populations. Through church partnerships, interventions can be tailored to suit the needs of targeted groups.

Ethnic disparities in health-related quality of life among older rural adults with diabetes.

Diabetes mellitus disproportionately affects ethnic minorities and has serious economic, social, and personal implications. This study examines the effect of diabetes disease burden and social resources on health-related quality of life (HRQOL) among older rural adults with diabetes. Data come from a population-based cross-sectional survey of 701 adults (age > or =65 years) with diabetes in North Carolina from three ethnic groups: African American, Native American, and White. HRQOL was assessed using the 12-item short-form health survey (SF-12). Mean scores were 35.1 +/- 11.4 and 50.5 +/- 10.8 for the physical and mental components of the SF-12, respectively. In bivariate analyses, scores were significantly lower for Native Americans than Whites for both components. In multivariate analyses, higher physical HRQOL was associated with male sex, greater mobility ability, fewer chronic conditions, exercising vs not exercising, fewer depressive symptoms, and not receiving process assistance. Higher mental HRQOL was associated with greater mobility ability, fewer chronic conditions, and a high school education or more. Diabetes appears to have a substantial effect on physical HRQOL. Physical disability associated with diabetes may have a greater impact in the rural environment than in other areas. Aspects of rural social milieu may help to keep mental HRQOL high, even in the face of severe chronic disease. Ethnic differences in HRQOL are largely accounted for by diabetes disease burden and, to a lesser extent, social resources. Strategies to reduce diabetes-related complications (long term) and assist mobility (short term) may reduce ethnic disparities in HRQOL.

Older adults in the rural South are not meeting healthful eating guidelines.

OBJECTIVE: To evaluate diet quality of rural older adults using national dietary guidelines and the Healthy Eating Index (HEI). DESIGN: Five to six 24-hour recalls were conducted at monthly intervals over a 6-month period, using the Nutrition Coordinating Center food grouping system to calculate intake. SUBJECTS: Included in this cross-sectional study were 63 females and 59 males aged 65 to 93 years residing in two rural North Carolina counties; one third of each sex group was African American, Native American, or white. Inclusion criteria included age>65 years, education