Barriers and facilitators for healthcare providers to implement family-centered care in Parkinson's disease: a scoping review

Sun, Wen-Jing; Peng, Ye-Jie; Liang, Yan

doi:10.3389/fneur.2023.1231654

Cited by 2 publications

(1 citation statement)

References 52 publications

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“…Although there is mounting pressure on social services and the NHS to upskill professionals to "ensure they are able to identify, signpost and support carers when they encounter them" [24] (p. 10), in our opinion there is a strong need for more conceptualization and more professional awareness in both social and health sectors of whole-family practices with emphasis on the need to move away from a short-sighted definition of "family" as a dyad formed of the primary carer and the person being cared for [32][33][34]. This should lead to improvements in the way each family member's needs are listened to and addressed, not only in dementia care but also in the care of families affected by Parkinson's [35] or stroke [36], where a lack of family-centered care has also been identified.…”

Section: Discussionmentioning

confidence: 99%

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

Masterson-Algar,

Egan,

Flynn

et al. 2023

IJERPH

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Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low, and, consequently, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDC identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed, drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers, and young adult carers. Data collection involved semi-structured interviews (n = 17) and a participatory 2-h workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: a “whole-family approach” (as a pathway to identification), “not a carer” (self/family identification), a postcode lottery (high variability of support services), tailored support that is “fit for purpose”, and the “power” of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase the identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not “fit for purpose”.

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Section: Discussionmentioning

confidence: 99%

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

Masterson-Algar,

Egan,

Flynn

et al. 2023

IJERPH

View full text Add to dashboard Cite

show abstract

Hard to Reach and Hidden: Improving Identification of Young Dementia Carers

Masterson-Algar,

Egan,

Flynn

et al. 2023

Preprint

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Young dementia carers (YDCs) rarely receive appropriate training and support. Their visibility and identification remain dangerously low and as a consequence, support initiatives being developed are failing to reach them. This study explored the success (or failure) of YDCs identification pathways as well as the barriers and enablers to their implementation. An explorative qualitative approach was followed drawing on the experiences of parents of YDCs, dementia researchers, professionals in the field of dementia/young carers and young adult carers. Data collection involved semi-structured interviews (n=17) and a participatory 2-hour workshop to discuss and critique preliminary themes as well as explore strategies to increase the visibility and identification of YDCs. Five themes were identified: A ‘whole family approach’ (as a pathway to identification); ‘Not a carer’ (self/family identification); A postcode lottery (high variability of support services); Tailored support that is ‘fit for purpose’ and the ‘power’ of peer support. Recommendations on potential initiatives and actions that can help raise awareness and increase identification success of YDCs are proposed. Our findings support the need for a broad and holistic approach to the identification of YDCs that runs alongside the development of support initiatives that are accessible and relatable. The support itself will play a role in improving subsequent identification or hindering it if not ‘fit for purpose’.

show abstract

Barriers and facilitators for healthcare providers to implement family-centered care in Parkinson's disease: a scoping review

Cited by 2 publications

References 52 publications

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

Hard to Reach and Hidden: Improving the Identification of Young Dementia Carers

Hard to Reach and Hidden: Improving Identification of Young Dementia Carers

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