The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study

Wasilewski, Marina B; Kokorelias, Kristina M; Nonoyama, Mika; Dale, Craig; McKim, Douglas; Road, Jeremy; Leasa, David; Tandon, Anu; Goldstein, Roger; Rose, Louise

doi:10.1177/20552076221134964

Cited by 2 publications

(3 citation statements)

References 45 publications

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“… 18 Providing mechanisms for peer-support is also a facilitator for ongoing support both in-person and remotely. 16 , 30 , 48 …”

Section: Resultsmentioning

confidence: 99%

“…18 Providing mechanisms for peer-support is also a facilitator for ongoing support both in-person and remotely. 16,30,48 Ideally all of the key processes for transition from hospital to home would be integrated within a publicly or government funded LTMV program or framework. 2,19 However, community-based LTMV programs vary widely, from well-supported to piecemeal or nonexistent.…”

Section: Transition From Hospital To Homementioning

confidence: 99%

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Long-term mechanical ventilation and transitions in care: A narrative review

2023

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Objectives Individuals dependent on long-term mechanical ventilation (LTMV) for their day-to-day living are a heterogenous population who go through several transitions over their lifetime. This paper describes three transitions: 1) institution/hospital to community/home, 2) pediatric to adult care, and 3) active treatment to end-of-life for ventilator-assisted individuals (VAIs). Methods A narrative review based on literature and the author’s collective practical and research experience. Four online databases were searched for relevant articles. A manual search for additional articles was completed and the results are summarized. Results Transitions from hospital to home, pediatric to adult care, and to end-of-life for VAIs are complex and challenging processes. Although there are several LTMV clinical practice guidelines highlighting key components for successful transition, there still exists gaps and inconsistencies in care. Most of the literature and experiences reported to date have been in developed countries or geographic areas with funded healthcare systems. Conclusions For successful transitions, the VAIs and their support network must be front-and-center. There should be a coordinated, systematic, and holistic plan (including a multi-disciplinary team), life-time follow-up, with bespoke consideration of jurisdiction and individual circumstances.

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“… 18 Providing mechanisms for peer-support is also a facilitator for ongoing support both in-person and remotely. 16 , 30 , 48 …”

Section: Resultsmentioning

confidence: 99%

Section: Transition From Hospital To Homementioning

confidence: 99%

Long-term mechanical ventilation and transitions in care: A narrative review

2023

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“…Such support has been found in the literature to be important for the caregivers’ well-being. 63 “Peer mentoring” is added to the PSD model to provide users with focused and individual mentorship with other users in the same situation.…”

Section: Discussionmentioning

confidence: 99%

Design suggestions for a persuasive e-coaching application: A study on informal caregivers’ needs

et al. 2023

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Objective Informal caregivers such as relatives or close friends of patients are essential for caregiving at home. However, caregiving is a complex experience that may affect the caregivers’ well-being. Therefore, there is a need to provide support for caregivers, which we address in this article by proposing design suggestions for an e-coaching application. This study identifies the unmet needs of caregivers in Sweden and provides design suggestions for an e-coaching application using the persuasive system design (PSD) model. The PSD model offers a systematic approach to designing IT interventions. Methods A qualitative research design was used, and semi-structured interviews were conducted with 13 informal caregivers from different municipalities in Sweden. A thematic analysis was performed to analyze the data. The PSD model was used to map the needs emerging from this analysis to propose design suggestions for an e-coaching application for caregivers. Results Six needs were identified, and based on them, we proposed design suggestions for an e-coaching application using the PSD model. These unmet needs are monitoring and guidance, assistance to avail formal care services, access to practical information without being overwhelmed, feeling of community, access to informal support, and grief acceptance. The last two needs could not be mapped using the existing PSD model, resulting in an extended PSD model. Conclusion This study revealed the important needs of informal caregivers based on which design suggestions for an e-coaching application were presented. We also proposed an adapted PSD model. This adapted PSD model can be further used for designing digital interventions in caregiving.

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The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study

Cited by 2 publications

References 45 publications

Long-term mechanical ventilation and transitions in care: A narrative review

Long-term mechanical ventilation and transitions in care: A narrative review

Design suggestions for a persuasive e-coaching application: A study on informal caregivers’ needs

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