A Cross-European Study of Informal Carers' Needs in the Context of Caring for Older People, and their Experiences with Professionals Working in Integrated Care Settings.

Eliva Atieno Ambugo,Lina Masana,Borja Arrue,Simone R De Bruin,Terje P Hagen,Julie Macinnes,Nuri Cayuelas Mateu

doi:10.5334/ijic.5547

Abstract

Introduction:Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers’ needs. This study explores informal carers’ own needs within the context of caregiving; and examines, from the informal carers’ perspective, the extent to which professionals assess, understand and are responsive to informal carers’ needs.Methods:We interviewed (2016–2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed.Results:Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers’ needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people’s needs over their own.Discussion and conclusion:Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

Highlights

Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them
Given the key role that informal carers play in the delivery of care to older people, thereby supporting them to live at home longer and avoid costly institutional care, there is a need for health and social care professionals to work more closely with informal carers to identify and support them in meeting their health and social care needs [1, 3]
The current study explores informal carers’ own needs within the context of caregiving, and their experiences with professionals working within integrated health and social care systems in Europe

Summary

Introduction

Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. While informal carers have reported some positive effects of caregiving (e.g., satisfaction of caring for a loved one) [3, 4], caregiving is known to exert some negative effects on informal carers’ health and wellbeing (e.g., exposure to stress) [3, 5, 6]. The current study explores informal carers’ own needs within the context of caregiving, and their experiences with professionals working within integrated health and social care systems in Europe. Informal carers report positive experiences from caregiving, including a sense of giving back to someone who has cared for them, and the satisfaction of knowing that their loved one is getting excellent care [4], caregiving may negatively affect the health and wellbeing of informal carers. 5% and 8% of midlife women who provide care in the Scandinavian countries and Western Europe reduce their paid work hours or leave the labour force due to caring responsibilities [14]

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