The third person in the room: The needs of care partners of older people in home care services—A systematic review from a person‐centred perspective

Anker-Hansen, Camilla; Skovdahl, Kirsti; McCormack, Brendan; Tønnessen, Siri

doi:10.1111/jocn.14205

Cited by 46 publications

(56 citation statements)

References 44 publications

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“…Patient-and family-centred care must involve collaboration with patients, families and care providers. [38,39] Care plans for patients with complex or multiple chronic conditions should consider caregivers' needs and incorporate their input given the impact of caregiving on their lives.…”

Section: Discussionmentioning

confidence: 99%

An evaluation study of caregiver perceptions of the Ontario’s Health Links program

et al. 2020

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IntroductionIn 2012, the Ontario government launched Health Links (HL), which was designed to integrate care for patients with multimorbidity and complex needs who are high users of health services. This study evaluated perceptions of family and friend caregivers of patients enrolled in the HL program. Research questions included: What are (a) characteristics of caregivers of patients enrolled in HL (b) caregivers' perceptions of the program in relation to HL's guiding principles (patient and family-centred care, accessibility, coordination of services, and continuity of care and care provider) and (c) caregivers' perceptions of the impact of HL on themselves and their care recipient? MethodsThis study involved a survey and qualitative, semi-structured interviews. HL guiding principles (patient and family-centered care, accessibility, coordination of services, and continuity) guided the analysis. ResultsTwenty-seven surveys and 16 qualitative interviews were completed. Caregivers reported high levels of strain [Modified Caregiver Strain Index (MCSI) 15.5 (SD 7.03)], mild anxiety [Generalized Anxiety Disorder (GAD 7), 9.6 (SD 6.64)] and depression [Center for Epidemiological Studies Depression Scale (CES-D 10), 11.9 (SD 8.72)]. Regarding the guiding principles, most caregivers had a copy of the HL patient's care plan, although some caregivers noted that their needs were not included in the plan, nor were they asked for input. Caregivers found the program's home and phone visits accessible. Despite minimum wait times for community-based services, other access barriers persisted, (i.e., out-of-pocket costs). HL provided well-coordinated patient services, although some perceived that there was poor team communication. Caregiver perceptions varied on the quality of care provided. Provider

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Section: Discussionmentioning

confidence: 99%

An evaluation study of caregiver perceptions of the Ontario’s Health Links program

et al. 2020

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“…When older people with mental health problems are treated as a low priority group, it is reasonable to believe that this will also have a negative impact on their care partners. Other studies conclude that care partners have several, continuously unmet needs, and there is a lack of support from the municipal health services in meeting these needs (Anker-Hansen et al, 2017;Wester, Larsson, Olofsson, & Pennbrant, 2013).…”

Section: Mental Healthmentioning

confidence: 99%

“…The experiences and needs of care partners have been widely studied over the last few decades (Barnes, Given, & Given, ; Thomas, Morris, & Harman, ; Tønnessen, ; etc.). In an earlier systematic review, however, we reported that, despite extensive research on care partner's needs, care partners still have several unmet needs, ranging from practical help, like information and training, to emotional support (Anker‐Hansen, McCormack, Skovdahl, & Tønnessen, ). Furthermore, we reported the lack of research on the care partners of older people with mental health problems who receive home care services.…”

Section: Introductionmentioning

confidence: 99%

Invisible cornerstones. A hermeneutic study of the experience of care partners of older people with mental health problems in home care services

Anker-Hansen

Skovdahl

McCormack

et al. 2018

Int J Older People Nursing

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Objectives To explore the lived experiences and support needs of the care partners of older people with mental health problems living at home with assistance from home care services. Care partners face significant challenges in their care role and they often feel unsupported. An understanding of their experiences may help improve home care to support their needs. Method An exploratory qualitative approach was used. The study is based on the SRQR and COREQ reporting guidelines. In‐depth interviews were conducted with six Norwegian care partners from two municipalities. Data were collected during 2012–2013 and 2016. The data were analysed using Gadamer's hermeneutics. Results Three themes were identified: “invisible cornerstones,” “dimensions of collaboration” and “unwanted roles.” Conclusion Few or no routines for collaboration exist between care partners and home care, and the care partners seem to have little knowledge of legal rights. They request more information, spare time and the opportunity to remain in their original family role. However, their main focus is for the patient to receive the necessary help from home care. Home care have restricted resources for meeting these needs and share a sense of powerlessness and lack of influence over their own everyday life with the care partners. There is a need for a systematic, person‐centred approach to collaboration. A correlation is necessary between what is communicated at the system level and the means of realising this in practice for home care to meet care partners' needs.

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“…Health care is often first offered when a somatic disease occurs, which means that care partners may have provided care for years without help. When home care services initiate health care, the mental health needs of the person are often not prioritised and thus remain the care partners’ responsibility. When these persons get insufficient help, this also affects their care partners .…”

Section: Introductionmentioning

confidence: 99%

“…When home care services initiate health care, the mental health needs of the person are often not prioritised and thus remain the care partners’ responsibility. When these persons get insufficient help, this also affects their care partners . The relationship between formal and informal care has been conceptualised in different ways , conventionally in a perspective about how professionally registered carers (home care staff) and un‐registered carers (the care partners) collaborate in meeting needs, clarifying roles and agreeing responsibilities .…”

Section: Introductionmentioning

confidence: 99%

Collaboration between home care staff, leaders and care partners of older people with mental health problems: a focus on personhood

Anker-Hansen

Skovdahl

McCormack

et al. 2019

Scandinavian Caring Sciences

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Background Collaboration with care partners is a political aim in recent white papers in Norway and internationally. Home care services regularly work closely with care partners, but there are many indications that the collaboration does not work satisfactorily. Aim To explore home care staff and leaders’ experiences of collaborating with care partners of older people with mental health problems through a personhood perspective. Methods The study had a qualitative design and comprised eight health professionals in two focus groups and in‐depth interviews with three leaders in one home care district. The data were analysed using a thematic framework analysis building on previous research on personhood. criteria for reporting qualitative reporting guidelines were used to ensure comprehensive reporting. Results Four themes were identified in the analysis: ‘non‐negotiated relationships’, ‘contradictory agendas’, ‘weak paternalism’ and ‘moral compromise’. Conclusion There seems to be a lack of facilitation of collaborative relationships through all levels of the home care organisation. The interactions between care partners and home care staff sometimes appear to produce low or negative levels of emotional energy, and situations where the personhood of neither of them is respected occurs. Paying attention to the four modes of being as a framework for understanding personhood creates the foundation for a person‐centred approach that enhances the potential of creating stronger partnership in care relationships.

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The third person in the room: The needs of care partners of older people in home care services—A systematic review from a person‐centred perspective

Cited by 46 publications

References 44 publications

An evaluation study of caregiver perceptions of the Ontario’s Health Links program

An evaluation study of caregiver perceptions of the Ontario’s Health Links program

Invisible cornerstones. A hermeneutic study of the experience of care partners of older people with mental health problems in home care services

Collaboration between home care staff, leaders and care partners of older people with mental health problems: a focus on personhood

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