Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Zmora, Rachel; Birkeland, Robyn; McCarron, Hayley R; Finlay, Jessica; Rosebush, Christina; Gaugler, Joseph E.

doi:10.1177/0898264320963588

Cited by 19 publications

(14 citation statements)

References 38 publications

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“…This is similar to the findings of a qualitative study of seven carers, that suggested developing communication through informal contact with staff enabled family and staff alike to build a personal connection [25]. Carers highly valued interactions and communication with staff when they felt there was a personal connection [13]. Our findings extend these previous findings and suggested that establishing personal connections was an important component of communicating with LTC staff, but also with the goal of becoming a member of the care team.…”

Section: Discussionsupporting

confidence: 88%

“…When this occurred, balancing their two worlds, the one in LTC and the other outside of LTC was very difficult. The struggle of balancing two worlds, when carers were concerned about the care their family member was receiving, was also reported in a mixed methods study examining interpersonal and contextual factors that influence carer-staff relationships [13]. Although focused on carer-staff relationships, Zamora et al (13) reported the quality and appropriateness of care was an important factor influencing carers' experiences.…”

Section: Discussionmentioning

confidence: 98%

“…Hennings and Froggatt [8] also described the significant changes that carers experienced such as the evolving relationships with their family member, their own need for companionship and the need to face end-of-life issues. More recent studies suggest that carers of persons residing in LTC also experience significant changes such as: a transfer in responsibilities from being the primary caregiver to a visitor, new relationships with LTC staff members, and feelings of grief and loss of hope [11,13,14]. Carers need to adjust to a new way of living both for themselves and for the person with dementia [10,15].…”

Section: Introductionmentioning

confidence: 99%

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Building a new life: a qualitative study of how family carers deal with significant changes

et al. 2022

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Background Family carers of persons living with dementia who are residing in long term care (LTC), often experience significant changes in their roles and relationships which affects mental and physical health. Research has focused on describing the carers’ experience, but not on how they deal with these changes or their perceptions of support needs. The purpose of this study was to explore how family carers of persons living with dementia residing in LTC deal with significant changes and to understand how best to support these carers. Methods Eight face-to-face audio-recorded focus group interviews were conducted with 45 participants from September 2019 to January 2020, as part of a larger study aimed at guiding the adaptation of an online toolkit to support family carers of persons living with dementia residing in LTC. Applied thematic analysis was used to analyze the focus group data. Findings/results Carers dealt with the significant changes they experienced through the process of “building a new life” consisting of two sub-processes: a) building new relationships (with their family member, LTC staff and others outside of LTC), and b) finding space for themselves (sharing of care and finding balance). Understanding dementia, support from others (staff, family and friends), connecting with resources, and being included in care decisions helped carers build a new life. Conclusion The process of building a new life describes the ways that family carers deal with the life-altering changes they experienced when a family member is admitted to LTC. Carers may be supported in building their new life, by providing them with information about dementia and how to relate to staff and their family member living with dementia. The quality of care being provided and the LTC environment may also play an important role in how carers deal with the significant changes they experience.

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Section: Discussionsupporting

confidence: 88%

Section: Discussionmentioning

confidence: 98%

Section: Introductionmentioning

confidence: 99%

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Building a new life: a qualitative study of how family carers deal with significant changes

et al. 2022

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“…Literature on transitions has largely focused on specific transitions (e.g., hospital-to-home) [18,24,25]. This trend is echoed in recent studies exploring transitions for persons with dementia [26][27][28][29]. For example, Gilmore-Bykovskyi and colleagues [26] obtained nurses' perspectives on transitions for persons living with dementia from hospitals to skilled-nursing facilities.…”

Section: Introductionmentioning

confidence: 99%

Health care transitions for persons living with dementia and their caregivers

et al. 2021

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Background Persons with dementia are likely to require care from various health care providers in multiple care settings, necessitating navigation through an often-fragmented care system. This study aimed to create a better understanding of care transition experiences from the perspectives of persons living with dementia and their caregivers in Ontario, Canada, through the development of a theoretical framework. Methods Constructivist grounded theory guided the study. Seventeen individual caregiver interviews, and 12 dyad interviews including persons with dementia and their caregivers, were recorded and transcribed verbatim. The data were coded using NVivo 10 software; analysis occurred iteratively until saturation was reached. Results A theoretical framework outlining the context, processes, and influencing factors of care transitions was developed and refined. Gaining an in-depth understanding of the complex care transitions of individuals with dementia and their caregivers is an important step in improving the quality of care and life for this population. Conclusion The framework developed in this study provides a focal point for efforts to improve the health care transitions of persons living with dementia.

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“…They largely relied on ICT-based communication and increased the frequency of remote contacts to stay close to FCs and satisfy their information and emotional needs. The literature supports this strategy, showing that FCs highly valued HCPs’ competence and their efforts to maintain a therapeutic relationship between staff and their relative by employing a variety of means of communication [ 42 , 43 ].…”

Section: Discussionmentioning

confidence: 99%

Challenges Experienced by Italian Nursing Home Staff in End-of-Life Conversations with Family Caregivers during COVID-19 Pandemic: A Qualitative Descriptive Study

Gonella

Giulio

Antal

et al. 2022

IJERPH

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End-of-life conversations are among the most challenging of all communication scenarios and on the agenda of several healthcare settings, including nursing homes (NHs). They may be also difficult for experienced healthcare professionals (HCPs). This study explores the difficulties experienced by Italian NH staff in end-of-life conversations with family caregivers (FCs) during COVID-19 pandemic to uncover their educational needs. A qualitative descriptive study based on inductive thematic analysis was performed. Twenty-one HCPs across six Italian NHs were interviewed. Four themes described their experiences of end-of-life conversations: (1) communicating with FCs over the overall disease trajectory; (2) managing challenging emotions and situations; (3) establishing a partnership between HCPs and FCs; (4) addressing HCPs’ communication skills needs. HCPs had to face multiple challenging situations that varied across the care period as well as complex emotions such as anxiety, guilt, uncertainty, fear, anger, or suffering, which required tailored answers. COVID-19 pandemic increased FCs’ aggressive behaviors, their distrust, and uncertainty due to visitation restrictions. HCPs had to overcome this by developing a set of strategies, including adoption of an active-listening approach, supportive communication, and explicit acknowledgement of FCs’ emotions. Since communication needs were mostly practical in nature, HCPs valued practical communication training.

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Transitioning to Long-Term Care: Family Caregiver Experiences of Dementia, Communities, and Counseling

Cited by 19 publications

References 38 publications

Building a new life: a qualitative study of how family carers deal with significant changes

Building a new life: a qualitative study of how family carers deal with significant changes

Health care transitions for persons living with dementia and their caregivers

Challenges Experienced by Italian Nursing Home Staff in End-of-Life Conversations with Family Caregivers during COVID-19 Pandemic: A Qualitative Descriptive Study

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