Home Health Nursing Agencies' Services for Children With Medical Complexity: Parent and Nurse Perspectives.

OBJECTIVE: Many children with medical complexity (CMC) require the services of home health nurses (HHNs). Home health agencies (HHAs) hire, train, and manage nurses. For children to flourish, families, nurses, and HHAs must establish successful working relationships. Our objective was to understand the perspectives of parents and nurses about HHAs. METHODS: In Illinois (IL) from 2019 to 2022, HHNs for and parents of children with invasive mechanical ventilation were interviewed. In North Carolina (NC) from 2012 to 2013, parents of CMC were interviewed, and from 2013 to 2014 HHNs participated in focus groups. Each dataset was initially analyzed separately for main themes relating to HHAs. Using collaborative thematic analysis, we determined themes common across datasets. RESULTS: In IL, 23 mothers, 12 fathers, and 20 nurses were interviewed. In NC, 19 mothers, 6 fathers, and 1 grandmother were interviewed; and 4 focus groups of 18 nurses were conducted. Four common themes were identified. 1) HHAs do not have a uniform process for hiring and assigning nurses to cases. 2) HHAs have marked variability in training offered to nurses. 3) Shift scheduling, notifications, and communications with the HHAs frustrate parents and nurses. 4) Nurses and parents have little allegiance to specific HHAs; they frequently change agencies or work with several simultaneously. CONCLUSIONS: Parents and nurses perceive practices for hiring, training, and staffing as inconsistent, and experience communication challenges. HHA-level problems may contribute to issues with HHN retention and complicate the lives of the families of CMC. Further research about this critical health care sector is needed.

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.

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.