Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes

Cottrell, Laura; Duggleby, Wendy; Ploeg, Jenny; McAiney, Carrie; Peacock, Shelley; Ghosh, Sunita; Holroyd‐Leduc, Jayna; Nekolaichuk, Cheryl; Forbes, Dorothy; Paragg, Jillian; Swindle, Jennifer

doi:10.1080/13607863.2018.1531369

Cited by 14 publications

(45 citation statements)

References 25 publications

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“…4,16,18,23 Additionally, specific support should have been offered to informal caregivers taking on miscellaneous care roles (eg, advocating, expert, or a visitor role). 4,8,16,24 In the pre-transition phase, older persons and informal caregivers preferred support from family and health care professionals to make a shared decision rather than them making that decision. 4,5,8,14,16,21,25 Studies, moreover, recommended the health care professional to confirm the necessity of this transition while also offering practical support.…”

Section: Supportmentioning

confidence: 99%

“…This dialogue ideally, according to older persons and informal caregivers, should have been initiated by a health care professional. 6,22,24 These constructive discussions aimed to exchange knowledge, feelings, and expectations from all involved and they could be facilitated by acquiring the necessary communication skills. 3e7, 14,16,18,22,24,27e29 Moreover, a health care professional should have coordinated the transition process and defined the responsibilities of those involved.…”

Section: Communicationmentioning

confidence: 99%

“…4,7,16,18,27 It allowed informal caregivers to start a partnership with the health care professional and for both to elaborate on their transition experience. 4,6,16,21,23,24,27…”

Section: Communicationmentioning

confidence: 99%

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Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

Groenvynck

Boer

Hamers

et al. 2021

Journal of the American Medical Directors Association

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The transition from home to a nursing home can be stressful and traumatic for both older persons and informal caregivers and is often associated with negative outcomes. Additionally, transitional care interventions often lack a comprehensive approach, possibly leading to fragmented care. To avoid this fragmentation and to optimize transitional care, a comprehensive and theory-based model is fundamental. It should include the needs of both older persons and informal caregivers. Therefore, this study, conducted within the European TRANS-SENIOR research consortium, proposes a model to optimize the transition from home to a nursing home, based on the experiences of older persons and informal caregivers. These experiences were captured by conducting a literature review with relevant literature retrieved from the databases CINAHL and PubMed. Studies were included if older persons and/or informal caregivers identified the experiences, needs, barriers, or facilitators during the transition from home to a nursing home. Subsequently, the data extracted from the included studies were mapped to the different stages of transition (pre-transition, mid-transition, and post-transition), creating the TRANSCITmodel. Finally, results were discussed with an expert panel, leading to a final proposed TRANSCIT model.The TRANSCIT model identified that older people and informal caregivers expressed an overall need for partnership during the transition from home to a nursing home. Moreover, it identified 4 key components throughout the transition trajectory (ie, pre-, mid-, and post-transition): (1) support, (2) communication, (3) information, and (4) time.The TRANSCIT model could advise policy makers, practitioners, and researchers on the development and evaluation of (future) transitional care interventions. It can be a guideline reckoning the needs of older people and their informal caregivers, emphasizing the need for a partnership, consequently reducing fragmentation in transitional care and optimizing the transition from home to a nursing home.

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Section: Supportmentioning

confidence: 99%

Section: Communicationmentioning

confidence: 99%

See 1 more Smart Citation

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

Groenvynck

Boer

Hamers

et al. 2021

Journal of the American Medical Directors Association

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“…However, the previous qualitative research that guided our understanding of the unique experiences of carers of persons living with dementia residing in LTC were studies of the overall caregiving experience (Duggleby et al, 2013; Peacock et al, 2014) and not focused on the transition experience. To address this issue, we utilized qualitative methods (thematic and conversation analysis) to study transitions experienced by family carers of persons with dementia residing in LTC (Cottrell et al, 2020). The findings of this study were then compared with the MT4C conceptual framework and were found to validate the framework and the essential components.…”

Section: Adapting a Web-based Interventionmentioning

confidence: 99%

Qualitative Research and Its Importance in Adapting Interventions

et al. 2020

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Systematic approaches are essential when adapting interventions, so the adapted intervention is feasible, acceptable, and holds promise for positive outcomes in the new target population and/or setting. Qualitative research is critical to this process. The purpose of this article is to provide an example of how qualitative research was used to guide the adaptation a web-based intervention for family carers of persons with dementia residing in long-term care (LTC) and to discuss challenges associated with using qualitative methodologies in this regard. Four steps are outlined: (a) choosing an intervention to adapt, (b) validating the conceptual framework of the intervention, (c) revising the intervention, and (d) conducting a feasibility study. Challenges with respect to decontextualization and subjective reality are discussed, with suggestions provided on how to overcome them. The result of this process was a feasible and acceptable web-based intervention to support family carers of persons with dementia residing in LTC.

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“…Carers of a family member living with dementia in a LTC community are an at-risk group , and evidence suggests that carers’ mental health may actually worsen after their relative with dementia moves to LTC [ 7 ]. Carers may report feelings of blame, self-doubt, loneliness, isolation, and powerlessness [ 4 , 7 ] which negatively affect their mental health [ 8 ]. In contrast, hope, confidence in the ability to deal with difficult situations or self-efficacy, and social support can improve their mental health.…”

Section: Introductionmentioning

confidence: 99%

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care

et al. 2020

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Background: When a family member resides in long term care facility (LTC), family carers continue caregiving and have been found to have decreases in mental health. The aim of My Tools 4 Care-In Care (an online intervention) is to support carers of persons living with dementia residing in LTC through transitions and increase their selfefficacy, hope, social support and mental health. This article comprises the protocol for a study to evaluate My Tools 4 Care-In Care (MT4C-In Care) by asking the following research questions: 1) Is there a 2 month (immediately post-intervention) and 4 month (2 months post-intervention) increase in mental health, general self-efficacy, social support and hope, and decrease in grief and loneliness, in carers of a person living with dementia residing in LTC using MT4C-In CARE compared to an educational control group? 2) Do carers of persons living with dementia residing in LTC perceive My Tools 4 Care-In Care helps them with the transitions they experience? Methods: This study is a single blinded pragmatic mixed methods randomized controlled trial. Approximately 280 family carers of older persons (65 years of age and older) with dementia residing in LTC will be recruited for this study. Data will be collected at three time points: baseline, 2 month, and 4 months. Based on the feasibility study, we hypothesize that participants using MT4C-In Care will report significant increases in hope, general self-efficacy, social support and mental health quality of life, and significant decreases in grief and loneliness from baseline, as compared to an educational control group. To determine differences between groups and over time, generalized estimating equations analysis will be used. Qualitative descriptive analysis will be used to further evaluate MT4C-In Care and if it supports carers through transitions.

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Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes

Cited by 14 publications

References 25 publications

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

Toward a Partnership in the Transition from Home to a Nursing Home: The TRANSCIT Model

Qualitative Research and Its Importance in Adapting Interventions

Study protocol: pragmatic randomized control trial of my tools 4 care- in care (MT4C-in care) a web-based tool for family Carers of persons with dementia residing in long term care

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