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1.
Health Expect ; 27(2): e14002, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38549352

RESUMO

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.


Assuntos
Cuidadores , Cuidados Paliativos , Adulto , Humanos , Cuidadores/psicologia , Pessoal de Saúde , Transição do Hospital para o Domicílio , Cuidados Paliativos/métodos
2.
Can J Aging ; 43(1): 45-56, 2024 03.
Artigo em Inglês | MEDLINE | ID: mdl-37501571

RESUMO

Older adults living in residential care often experience challenges in sustaining meaningful social relationships, which can result in compromised health and well-being. Online social networking has the potential to mitigate this problem, but few studies have investigated its implementation and its effectiveness in maintaining or enhancing well-being. This pilot study used a cluster-randomized pre-post design to examine the feasibility of implementing a 12-week group-based technology-training intervention for older adults (n = 48) living in residential care by exploring how cognitive health, mental health, and confidence in technology were impacted. Analysis of variance revealed significant increases in life satisfaction, positive attitudes toward computer use, and self-perceived competence among participants who received the intervention, but increased depressive symptoms for the control group. These findings suggest that, despite challenges in implementing the intervention in residential care, group-based technology training may enhance confidence among older adults while maintaining or enhancing mental health.


Assuntos
Correio Eletrônico , Relações Interpessoais , Humanos , Idoso , Projetos Piloto , Estudos de Viabilidade , Saúde Mental
3.
Transl Stroke Res ; 2024 Jul 13.
Artigo em Inglês | MEDLINE | ID: mdl-38997598

RESUMO

Aneurysmal subarachnoid haemorrhage (aSAH) is a devastating condition with high mortality and morbidity. The outcome measures used in aSAH clinical research vary making it challenging to compare and combine different studies. Additionally, there may be a mismatch between the outcomes prioritized by patients, caregivers, and health care providers and those selected by researchers. We conducted an international, online, multiple round Delphi study to develop consensus on domains (where a domain is a health concept or aspect) prioritized by key stakeholders including those with lived experience of aSAH, health care providers, and researchers, funders, or industry professionals. One hundred seventy-five people participated in the survey, 59% of whom had lived experience of aSAH. Over three rounds, 32 domains reached the consensus threshold pre-defined as 70% of participants rating the domain as being critically important. During the fourth round, participants ranked the importance of each of these 32 domains. The top ten domains ranked highest to lowest were (1) Cognition and executive function, (2) Aneurysm obliteration, (3) Cerebral infarction, (4) Functional outcomes including ability to walk, (5) Delayed cerebral ischemia, (6) The overall quality of life as reported by the SAH survivor, (7) Changes to emotions or mood (including depression), (8) The basic activities of daily living, (9) Vasospasm, and (10) ICU complications. Our findings confirm that there is a mismatch between domains prioritized by stakeholders and outcomes used in clinical research. Our future work aims to address this mismatch through the development of a core outcome set in aSAH research.

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