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Cited by 12Palliative Care and End-of-Life IssuesPalliative and Oncologic CareHealth Policy Implementation Science

Advancing the Care Experience for patients receiving Palliative care as they Transition from hospital to Home (ACEPATH): Codesigning an intervention to improve patient and family caregiver experiences

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McCoy, Madeline, Shorting, Taylor, Mysore, Vinay Kumar, Fitzgibbon, Edward, Rice, Jill, Savigny, Meghan, Weiss, Marianne, Vincent, Daniel +15 more·2024·Health Expectations
DOI 10.1111/hex.14002PMC PMC10979115
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Abstract

BACKGROUND: Returning 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. OBJECTIVE: To 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). METHODS: The 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. RESULTS: Three 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. CONCLUSION: Insights 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 CONTRIBUTION: Patients 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.

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  • Caregivers in Alberta, like those across Canada and in most countries, remain the de facto system navigators, often acting as case managers without training or support.

    “Caregivers in Alberta, like those across Canada and in most countries, remain the de facto system navigators [4,29,30].”

    From Home care comparison (2026) · cites this paper as [30]

    The Results (Stage 1: Development of codesign workshops; page unavailable) report that caregivers often coordinated equipment and medical supplies before discharge, supporting the system-navigation point. The Setting section places the study in Ottawa, Ontario, not Alberta; the paper does not establish that caregivers across Canada or in most countries have this role. The cited passages also do not establish that caregivers act as case managers without training or support. (LLM, conf=0.86)

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  • Collaboratively designing and implementing interventions for palliative care patients during the transition period can effectively improve the experiences of patients and family caregivers.

    “McCoy et al. demonstrated that collaboratively designing and implementing interventions for palliative care patients during the transition period can effectively improve the experiences of patients and family caregivers [35].”

    From Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study (2024) · cites this paper as [35]

    The Results describe codesign workshops with patients and caregivers that produced four intervention prototypes. But the Discussion’s “Next steps” section says implementation testing will occur later; this paper does not demonstrate that an implemented intervention improved patient or caregiver experiences. (LLM, conf=0.92)

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Research works printed but not linked: 2

  1. [17]Killackey T, Lovrics E, Saunders S, Isenberg SR. Palliative care transitions from acute care to community‐based care: a qualitative systematic review of the experiences and perspectives of health care providers. Palliat Med. 2020; 34(10): 1316‐ 1331. 32772787
  2. [30]Saunders S, Killackey T, Kurahashi A, et al. Palliative care transitions from acute care to community‐based care—a systematic review. J Pain Symptom Manage. 2019; 58(4): 721‐ 734. 31201875

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Authors
McCoy, M., Shorting, T., Mysore, V. K., Fitzgibbon, E., Rice, J., Savigny, M., Weiss, M., Vincent, D., Hagarty, M., MacLeod, K. K., Ernecoff, N. C., Pattison, R., Kornberg, M., Bruni, A., Bush, S. H., Kuluski, K., Fiset, V., Li, C., Parsons, H. A., Lalumière, G., Connolly, T., Webber, C., & Isenberg, S. R.
Affiliations
  • Bruyère (CA)
  • The New School (US)
  • Ottawa Hospital (CA)
  • University of Ottawa (CA)
  • Consultant
  • Marquette University (US)
  • The Ottawa Hospital Ottawa Ontario Canada
  • RAND Corporation (US)
  • Caregiver Partner
  • University of Toronto (CA)
  • Carleton University (CA)
Corresponding author
McCoy, Madeline
ORCID
Venue
Health Expectations
Publisher
Wiley
Published
2024-03-28
Volume
27
Issue
2
Pages
e14002-e14002
ISSN
  • 1369-6513 (ISSN-L)
  • 1369-7625
DOI
10.1111/hex.14002
PMC
PMC10979115
OpenAlex
W4393281624
Cited by
12
References
42
Citations by year
2026: 6 · 2025: 4 · 2024: 2
FWCI
4.97
Type
journal article
Language
en
Open access
Licence
Locations
  • Health Expectations (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
Funders
Canadian Institutes of Health Research (478488)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Health Professions › General Health Professions › Health Policy Implementation Science
Keywords
palliative care, hospital-to-home transition, co-design, low-fidelity prototypes, patient-centered care, intervention development, end-of-life care
MeSH terms
Hospital to Home Transition, Adult, Health Personnel, Hospitals, Humans, Palliative Care, Caregivers

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