A Needs-led Framework for Understanding the Impact of Caring for a Family Member With Dementia

Abstract

Background and ObjectivesApproximately half the care for people with dementia is provided by families. It is therefore imperative that research informs ways of maintaining such care. In this study, we propose that a needs-led approach can provide a useful, novel means of conceptualizing the impact of caring on the lives of family carers. Our aim was to develop and present a needs-led framework for understanding how providing care impacts on carers’ fulfilment of needs.Design and MethodsIn this qualitative study, we conducted 42 semistructured interviews with a purposively diverse sample of family carers to generate nuanced contextualized accounts of how caring impacted on carers’ lives. Our inductive thematic analysis focused upon asking: “What need is being impacted here?” in order to generate a needs-led framework for understanding.ResultsNine themes were widely endorsed. Each completed the sentence: “Being a carer impacts on fulfilling my need to/for….”: Freedom; feel close to my relative; feel in control of my life; be my own person; protect my relative; share/express my thoughts and feelings; take care of myself; feel connected to the people around me; get things done.Discussion and ImplicationsThese needs echo those from other research areas, with relational needs emerging as particularly central. The needs-led approach offers a perspective that is able to capture both stresses and positive aspects of caregiving. We recommend that clinical interviewing using Socratic questioning to discover human needs that are being impacted by caring would provide a valuable starting point for care planning.

What do family caregivers of people with dementia need? A mixed‐method systematic review

“…Of the qualitative studies, the study design was specified in three of them as a grounded theory (Samson, Parker, Dye, & Hepburn, 2016), a cross‐sectional qualitative (Pini et al, 2018) and a descriptive qualitative study design (Flynn & Mulcahy, 2013). Included studies involved a total of 310 family caregivers and 175 care recipients.…”

Carer needs on an organic inpatient unit

“…When examining the needs of family carers of a PwD, Pini, Ingleson, Megson, Clare, et al, (2017) critique existing research for focusing on care needs rather than the human needs of carers. They use a systematic review conducted by McCabe, You and Tatangelo (2016) to support this notion.…”

Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

“…The interviews, which were audio-recorded, focused on finding out about the ways that caring impacted on quality of life by asking about rewarding and challenging experiences of caring and related thoughts, feelings and experiences. (The semi-structured interview schedule can be seen in openly available material supplementary to Pini et al [36]). Recordings were professionally transcribed, then safely deleted and personal details in transcripts were changed to protect confidentiality.…”

“…In parallel with generation of the item pool, the researchers also conducted a separate thematic analysis [38] of the qualitative interviews to derive a needs-led framework of the impact of dementia care upon fulfilment of carers' needs. This was not conducted to inform scale development, but was a separate piece of work, fully described elsewhere [36]. The framework was iteratively developed with the final version capturing the way caring impacted on the fulfilment of nine needs: Being a carer impacts on fulfilling my need to feel in control of my life; to feel close to the person I care for; to be my own person; to feel connected to the people around me; to take care of myself; for freedom; to protect the person I care for; to get things done and to share/express my thoughts and feelings.…”

“…Nonetheless items were checked for spread against the themes of the needs-led framework to add to confidence that the item pool comprehensively reflected all key areas of impact of caring on quality of life. For further detail of the subthemes see Pini et al 2017[36].…”