Negotiating the transition from acute hospital care to home: perspectives of patients with traumatic brain injury, caregivers and healthcare providers

Abstract

PurposeThe purpose is to explore experiences transitioning home from acute hospital care from perspectives of younger traumatic brain injury (TBI) patients, family caregivers and healthcare providers (HCPs).Design/methodology/approachThe authors conducted 54 qualitative interviews (N = 36: 12 patients, 8 caregivers, 16 HCPs) and analyzed data using conventional content analysis.FindingsThe transition from hospital to home was described as a negotiation, finding a way through these obstacles: (1) preparing for discharge home during acute hospital care; (2) navigating transitions in healthcare and health; (3) addressing recovery concerns, and (4) setting goals to return to normal. Factors influencing the negotiation process included social support, health-related knowledge or training, coping mechanisms, financial stability, and home environment stability.Originality/valueYounger TBI patients and caregivers have unique needs during the transition home from the hospital. Needed support from HCPs was inconsistently provided. Findings are foundational for integrated care research and practice with TBI.

The BETTER Traumatic Brain Injury Transitional Care Intervention: A Feasibility Study

“…Community-engaged research methods include seeking and capturing input, perspectives, and guidance from key stakeholders throughout the full research process. 21 The intervention was informed by our team’s prior research 7,8,16,17,22-42 ; literature used to support, educate, and train patients and families in recovery 43-46 ; and the Individual and Family Self-Management Theory. 47 In addition, as no US TBI transitional care guidelines exist, guidelines on TBI discharge planning and follow-up from the United Kingdom 48 informed the intervention.…”

Efficacy of BETTER transitional care intervention for diverse patients with traumatic brain injury and their families: Study protocol of a randomized controlled trial

“…In alignment with U.S. usual transitional care management for patients with TBI, usual transitional care management arm activities for adults with TBI and their family caregivers (see Fig 3 ) already include usual transitional care management discharge planning process and followup (e.g., verbal and written discharge instructions, with guidance on medications, outpatient therapy, and follow-up appointments) [13,24]. U.S. usual transitional care management for patients with TBI does not typically consist of any intervention activities planned for treatment arm participants, such as assignment to work with a clinical interventionist, needs assessment, resource referral, goal setting, care coordination, or training on self-and family-management and brain injury coping skills.…”

“…[11] The complexity of TBI-related impairments, combined with the fragmentation of healthcare services, creates the perfect storm for low patient quality of life (QOL), mismanaged symptoms, rehospitalizations, and increased caregiver strain. [12,13] Lack of insurance or access to care, as well as language barriers, aggravate these issues. [14] Despite complex health needs, there are no U.S. clinical standards for transitional care management for any patients, including patients with TBI.…”

“…[15] Yet, the current state of usual transitional care management often leaves patients with TBI and their families to independently navigate and access fragmented services and supports. [13,[24][25][26][27][28][29] It is critical that TBI transitional care evolves to meet the needs of adults with TBI and their families with attention to specific needs of racial/ ethnic minorities to drive equitable advancements in care for minoritized communities.…”

“…[30][31][32] We developed and refined BETTER with our findings from mixed-methods research with key stakeholders to identify needs and areas to improve in the TBI transitional care process. [13,15,[24][25][26][27][33][34][35][36][37][38][39][40][41][42][43][44][45][46][47][48][49] We built capacity to enroll Spanishspeaking patients and families via cultural and linguistic adaptation of the intervention and accompanying materials. [30] The objective of this randomized controlled trial (RCT) is to examine the efficacy of BET-TER [30][31][32] (vs. usual transitional care management) among diverse adults with TBI and families.…”