Community Caring for a Family Member With Brain Injury: Women's Lived Experiences.

Individuals with a brain injury often require a caregiver to live safely in a community-based setting. This role typically defaults to a woman family member. Under the auspices of a constructivist interpretive tradition that honors a desire-based approach, this study blended narrative inquiry and grounded theory to explore the lived experiences of women caring for loved ones with brain injury. Twenty women completed the semi-structured interview, electing to participate either via videoconferencing or telephone. Employing a constant comparative method, three consecutive rounds of interviews, coding, and analysis occurred. Findings revealed an overarching theme surrounding the intractable challenges and enduring triumphs of caregiving. This discovery further sub-divided into four themes. Two themes focused on traversing a fragmented system of care and managing the burden of caregiving. The remaining two entailed finding supports in family and friends and leveraging professional skillset(s) to optimize caregiving. The recommendations garnered from the women's experiences included enhanced caregiver education with follow-up post-medical care, expanding services into the community to support caregivers and their family members appropriately, and building compassionate networks of women living the caregiving experience. Consistent with a desire-based paradigm, leveraging relationships to triumph over the challenges provided this group of women a voice to promote effective care for self, loved ones, and others.

Leveraging the Power of Online Qualitative Inquiry in Mixed Methods Research: Novel Prospects and Challenges Amidst COVID-19.

The rare circumstances of COVID-19 have transformed research toward increased dependence on online spaces. This article examines related challenges and opportunities, focusing on how philosophical and ethical implications are differentially manifest amid crisis. Anchored by a transformative perspective, our framework recognizes heightened vulnerabilities amid COVID-19; it seeks dexterous strategies for implementing qualitative strands that adapt well to a virtual context while remaining philosophically grounded and ethical. Our findings highlight issues of unequal access, disembodiment, safety and vulnerability, researcher positionality, anonymity, and the delineation between private and public spaces; we also showcase an array of virtual qualitative methods. We conclude that ethical practice in the use of online methods is likely to be broadly applicable and adaptable to the mixed methods research community.

Access to Care for Persons With Brain Injury: Ethical Frameworks to Promote Health Systems Change.

The challenges of providing optimal healthcare for individuals with brain injuries are heightened by the unique complexity of the injury itself. Survivors with long-term needs often encounter precarious situations where they struggle to receive services in health systems focused on cost containment driven by medical necessity and managed care. This article draws inductively from the rehabilitation experiences of 2 survivors to highlight neuroethical considerations representing the person, the rehabilitation system, and the medical model. Drawing upon our experience studying the provision of care in the Commonwealth of Virginia, we seek to explicate the challenge of providing longitudinal services. Three diverse and intersecting ethical considerations are applied: (1) teleological implications within rehabilitation medicine; (2) a care ethics framework, nested in the scholarship of feminist and disability ethics; and (3) the literature on pragmatism and dehumanization. This article uses these frameworks to explore the challenge posed by current healthcare practices and the needs of individuals with chronic brain injury.

Impact of the Brain Injury Family Intervention (BIFI) training on rehabilitation providers: A mixed methods study.

BACKGROUND: The psychological impact of TBI is vast, leading to adverse effects on survivors and their caregivers. Unhealthy family functioning may be mitigated by therapeutic strategies, particularly interdisciplinary family systems approaches like the well-documented Brain Injury Family Intervention (BIFI). Little is known about the experience of providers who offer such interventions. OBJECTIVE: This mixed methods study aims to demonstrate that a structured three-day training on the BIFI protocol improves providers' knowledge and confidence in working with survivors and families, and that this outcome is sustainable. METHODS: Participants were 34 providers who participated in an intensive training and completed a web-based survey at four points of time. Quantitative data were analyzed via Wilcoxon signed-rank tests and binomial test of proportions. Qualitative data were analyzed according to rigorous coding procedures. RESULTS: Providers' knowledge of brain injury and their ability to conceptualize treatment models for survivors and their families increased significantly and mostly remain consistent over time. Qualitative data point to additional gains, such as understanding of family systems. CONCLUSIONS: Past studies quantify the BIFI as an evidence-based intervention. This study supports the effectiveness of training and serves as first to demonstrate the benefit for providers short- and long-term.

Accessing crisis intervention services after brain injury: a mixed methods study.

PURPOSE: To understand empirically the perceived barriers to accessing crisis intervention services for individuals with acquired brain injury. METHOD: This action research design encompassed two phases of mixed methods data collection and analysis. Phase one consisted of the electronic distribution of a survey comprised primarily of quantitative items, launched to a nonrandom sample of 226 providers with a response rate of 49% (n = 110). Phase two entailed seven focus group interviews with 25 participants, designed to add explanatory power to phase one results. RESULTS: Quantitative results revealed an array of major barriers significant to persons with brain injury, such as funding for services, coexisting diagnoses, and limited self-advocacy. Organizationally specific barriers included funding for services, limited training and education, and systems resources (e.g., personnel). Adding depth and insight, qualitative findings triangulated with these results, also highlighting the prevalence of the funding barrier and pointing to additional barriers relative to the individual, the family, and external stigma. CONCLUSIONS: The need for convenient, cost-effective, and applicable training and education is paramount. Opportunities for interagency cross training and education, particularly around risk assessment, psychosocial adjustment symptoms, and the biomechanical causes of psychiatric symptoms may alleviate perceived disconnections, improve provider confidence, and mitigate crises. Developing interprofessional teams of providers to maximize access to services, either face-to-face or virtual, is integral. These perspectives highlight opportunities to improve access to services and to strengthen relationships across providers and agencies.