What do spouse primary caregivers of patients with glioblastoma want medical providers to know? A qualitative thematic reflexive analysis of letters written by primary caregivers from a secret Facebook support group.

OBJECTIVES: To analyse the content of letters written by female spouse primary caregivers of patients with glioblastoma multiforme (GBM), a devastating and terminal primary brain cancer, and give voice to their experiences for medical providers of patients with GBM. DESIGN: A qualitative study using reflexive thematic analysis of letters written by female spouses/life partners and primary caregivers of patients with GBM. PARTICIPANTS: 101 current or former female spouse primary caregivers of patients with GBM wrote letters to share with the medical community between July 2019 and August 2019. INCLUSION CRITERIA: (1) the primary caregiver who is a spouse of a patient with glioblastoma, (2) be a member of the secret Facebook group, 'We are the wives of GBM and this is our story', and (3) completed informed consent for the contents of their letter to be included for primary and secondary data analysis. Participants who wrote letters but did not complete the informed consent were excluded from the study. RESULTS: Themes from the letters included the patient experiences: (1) medical details of the disease trajectory, (2) interactions of the patient/caregiver dyads with healthcare and (3) the changing patient condition over time. Themes focused on the caregiver experiences: (1) caregiver challenges, (2) caregiver responses and (3) caregiver coping strategies, and description of tangible needs that would help other caregivers in the future. Caregiver needs were highest during the living with disease progression phase. Caregivers wanted more education and to be valued as members of the care team. CONCLUSION: Shared decision-making through family-centred care would be beneficial for primary caregivers of patients with GBM. These findings provide opportunities to guide more timely and tailored interventions to provide support and improve care for patient/caregiver dyads to help mitigate the burden of this progressive disease and improve quality of life for caregivers.

The work of managing a chronic illness: A job description.

RATIONALE: Self-management of a chronic illness is a struggle for many patients. There is substantial evidence that patients are not as successful as they and their providers would like. Considering patient self-management through an innovative and diverse lens could help patients, providers and the health care system to consider novel changes to improve success. AIMS AND OBJECTIVES: To provide a complete view of patient work by utilizing the human resources management practice of job analysis to develop an initial job description for patients suffering from chronic illness. METHODS: Study design was descriptive qualitative with analysis aiming to identify those reoccurring ideas from the data. Thirty patients, with at least one chronic illness, in three focus groups were assembled for this study. Verbatim recordings and notes were used to categorize the data provided. Five coders analyzed the data independently, and jointly met to discuss the themes identified. Demographic data was collected via surveys. RESULTS: Patients with chronic illness engage in five primary 'job' duties including self-care (actions taken to effectively manage physical and psychological symptoms), managing relationships (effective management of relationships with employers, family, friends and providers to ensure the best outcomes), managing resources (understanding and managing finances, health and prescription medication insurance), coordination (managing and scheduling visits to providers) and research/education (gathering information and conducting research relative to all aspects of managing one's illness). Relevant knowledge, skills, abilities (KSAs) and other resources were identified that are necessary for patients to effectively perform the five job duties. CONCLUSIONS: Creating a job description for the 'job' of patient is a crucial step in understanding the work chronically ill patients undertake. Knowing the duties, their associated tasks and KSAs, and resources required to perform those tasks enables patients and their providers and advocates to better identify ways to assist, relieve and encourage these patients in order to maximize patient success.

Home Health Management of Parkinson Disease Deep Brain Stimulation: A Randomized Clinical Trial.

Importance: The travel required to receive deep brain stimulation (DBS) programming causes substantial burden on patients and limits who can access DBS therapy. Objective: To evaluate the efficacy of home health DBS postoperative management in an effort to reduce travel burden and improve access. Design, Settings, and Participants: This open-label randomized clinical trial was conducted at University of Florida Health from November 2017 to April 2020. Eligible participants had a diagnosis of Parkinson disease (PD) and were scheduled to receive DBS independently of the study. Consenting participants were randomized 1:1 to receive either standard of care or home health postoperative DBS management for 6 months after surgery. Primary caregivers, usually spouses, were also enrolled to assess caregiver strain. Interventions: The home health postoperative management was conducted by a home health nurse who chose DBS settings with the aid of the iPad-based Mobile Application for PD DBS system. Prior to the study, the home health nurse had no experience providing DBS care. Main Outcomes and Measures: The primary outcome was the number of times each patient traveled to the movement disorders clinic during the study period. Secondary outcomes included changes from baseline on the Unified Parkinson's Disease Rating Scale part III. Results: Approximately 75 patients per year were scheduled for DBS. Of the patients who met inclusion criteria over the entire study duration, 45 either declined or were excluded for various reasons. Of the 44 patients enrolled, 19 of 21 randomized patients receiving the standard of care (mean [SD] age, 64.1 [10.0] years; 11 men) and 23 of 23 randomized patients receiving home health who underwent a minimum of 1 postoperative management visit (mean [SD] age, 65.0 [10.9] years; 13 men) were included in analysis. The primary outcome revealed that patients randomized to home health had significantly fewer clinic visits than the patients in the standard of care arm (mean [SD], 0.4 [0.8] visits vs 4.8 [0.4] visits; P < .001). We found no significant differences between the groups in the secondary outcomes measuring the efficacy of DBS. No adverse events occurred in association with the study procedure or devices. Conclusions and Relevance: This study provides evidence supporting the safety and feasibility of postoperative home health DBS management. Trial Registration: ClinicalTrials.gov Identifier: NCT02474459.

Palliative and end-of-life care in stroke: a statement for healthcare professionals from the American Heart Association/American Stroke Association.

BACKGROUND AND PURPOSE: The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. METHODS: Members of the writing group were appointed by the American Heart Association Stroke Council's Scientific Statement Oversight Committee and the American Heart Association's Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association's framework for defining classes and level of evidence and recommendations. RESULTS: The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. CONCLUSIONS: Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.