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"This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy.

ABSTRACT: Rationale: Expansion of chronic ventilation options and shared decision-making have contributed to an increasing population of technology-dependent children. One particularly vulnerable group is children with tracheostomy who depend on technology for basic respiratory functions. Chronic critical care is now provided in the homecare setting with implications for family caregivers.Objectives: This study explores the experience of family caregivers of children and young adults with a tracheostomy during the transition from hospital to home care. We sought to identify the specific unmet needs of families to direct future interventions.Methods: We recruited a convenience sample of families from an established home ventilation program to participate in semistructured interviews. Sessions were conducted in person or via teleconference. A grounded-theory qualitative analysis was performed.Results: Between March 2017 and October 2018, we interviewed 13 individuals representing 12 families of children and/or young adults with tracheostomy. Patients ranged in age from 9 months to 28 years, had a tracheostomy for 8 months to 18 years, and represented a variety of underlying diagnoses. Five key themes emerged: 1) navigating home nursing; 2) care coordination and durable medical equipment (DME) impediments; 3) learning as a process; 4) managing emergencies; and 5) setting expectations.Conclusions: Our findings support the need for family-centered discharge processes including coordination of care and teaching focused on emergency preparedness.

SUBMITTER: Amar-Dolan LG

PROVIDER: S-EPMC7328176 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundReturning home from the hospital for palliative-focused care is a common transition, but the process can be emotionally distressing and logistically challenging for patients and caregivers. While interventions exist to aid in the transition, none have been developed in partnership with patients and caregivers.ObjectiveTo undergo the initial stages of codesign to create an intervention (Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home [ACEPATH]) to improve the experience of hospital-to-home transitions for adult patients receiving palliative care and their caregiver(s).MethodsThe codesign process consisted of (1) the development of codesign workshop (CDW) materials to communicate key findings from prior research to CDW participants; (2) CDWs with patients, caregivers and healthcare providers (HCPs); and (3) low-fidelity prototype testing to review CDW outputs and develop low-fidelity prototypes of interventions. HCPs provided feedback on the viability of low-fidelity prototypes.ResultsThree patients, seven caregivers and five HCPs participated in eight CDWs from July 2022 to March 2023. CDWs resulted in four intervention prototypes: a checklist, quick reference sheets, a patient/caregiver workbook and a transition navigator role. Outputs from CDWs included descriptions of interventions and measures of success. In April 2023, the four prototypes were presented in four low-fidelity prototype sessions to 20 HCPs. Participants in the low-fidelity prototype sessions provided feedback on what the interventions could look like, what problems the interventions were trying to solve and concerns about the interventions.ConclusionInsights gained from this codesign work will inform high-fidelity prototype testing and the eventual implementation and evaluation of an ACEPATH intervention that aims to improve hospital-to-home transitions for patients receiving a palliative approach to care.Patient or public contributionPatients and caregivers with lived experience attended CDWs aimed at designing an intervention to improve the transition from hospital to home. Their direct involvement aligns the intervention with patients' and caregivers' needs when transitioning from hospital to home. Furthermore, four patient/caregiver advisors were engaged throughout the project (from grant writing through to manuscript writing) to ensure all stages were patient- and caregiver-centred.

Project description:BACKGROUND:Improving the quality of care for patients who return home after a hospital stay is an international priority; however, few jurisdictions have engaged broadly with patients and caregivers to understand what most affects their experience transitioning home. We performed Ontario-wide group concept mapping, beginning with a brainstorming phase, to understand patient and caregiver priorities in the transition. METHODS:We used group concept mapping to engage patients and caregivers who had lived experience transitioning from hospital to home in Ontario in the previous 3 years. We report on the first phase, brainstorming, conducted over 10 weeks beginning Jan. 11, 2018 via an online survey or facilitated group discussion. Participants responded to a single focal prompt: "When leaving the hospital for home, some thing(s) that affected the experience were: ____." The study team identified recurrent concepts and overarching themes. Patients and caregivers informed the study design, recruitment and data interpretation. RESULTS:In all, 665 people (263 patients [39.5%], 352 caregivers [52.9%] and 50 people who were both patient and caregiver [7.5%]) participated in brainstorming online, and 71 people participated in 1 of 8 group discussions. Participants identified 6 key areas affecting their experience of transition from hospital to home: home and community care, the discharge process, medical follow-up after discharge, medications, patient and caregiver education, and the kindness and caring of the health care team in hospital. Most notable were challenges with the timeliness, sufficiency, reliability and consistency of publicly funded home care services. INTERPRETATION:Patients and caregivers from across Ontario noted a range of issues affecting their experience transitioning from hospital to home, particularly the quality and sufficiency of publicly funded home care. Our findings will be used to inform a provincial quality standard on the transition from hospital to home.

Project description:BackgroundThe Veterans Health Administration (VA) implemented the comprehensive life-sustaining treatment (LST) Decisions Initiative to provide training and standardize documentation of goals of care and LST preferences for seriously ill Veterans to improve end-of-life (EOL) outcomes. LST documentation is expected for all Home-Based Primary Care (HBPC) Veterans because they are at high risk of hospitalization and mortality.MethodsA retrospective, cross-sectional analysis compared associations between Bereaved Family Survey (BFS) EOL care ratings and LST documentation. Participants were Veterans who died August 1, 2018 through September 30, 2019 in one of 55 VA HBPC programs. Regression modeling generated odds for key BFS outcomes. LST template completion rate was plotted by month to understand the interaction between time, LST completion rate, and EOL care family ratings.ResultsLST preferences were documented for 39% of HBPC Veterans. Family members rated overall EOL care as excellent for 53% of Veterans but significant divergence in BFS ratings occurred during the last 7 months of the study with 60% of family members of LST completers rating care as excellent compared with 48% for Veterans lacking LST documentation (p = 0.003). The adjusted odds of rating overall care in the final month of life as excellent was higher among those with a completed LST template (1.64 95% CI 1.19, 2.26).ConclusionsHigher rates of LST documentation were associated with more favorable ratings of EOL but not in initial months following implementation of the comprehensive initiative; however, LST documentation rates were lower than expected among HBPC Veterans. Following an initial period of implementation of a comprehensive national initiative to promote Veteran choice about care during serious illness, documented LST preferences were associated with better family ratings of EOL care. HBPC clinicians may improve the bereaved family experience by using LSDTI tools and training to elicit and document preferences.

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"This Is How Hard It Is". Family Experience of Hospital-to-Home Transition with a Tracheostomy.

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