Filling the gap in service provision. Partners as family carers to people with Parkinson's disease: A Scandinavian perspective

TY - JOUR

T1 - Filling the gap in service provision. Partners as family carers to people with Parkinson's disease

T2 - A Scandinavian perspective

AU - Hjelle, Ellen Gabrielsen

AU - Rønn-Smidt, Helle

AU - Haahr, Anita

AU - Haavaag, Silje Bjørnsen

AU - Sørensen, Dorthe

AU - Navarta-Sánchez, Maria Victoria

AU - Portillo, Mari Carmen

AU - Bragstad, Line Kildal

PY - 2024/6

Y1 - 2024/6

N2 - OBJECTIVES: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.METHODS: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches.RESULTS: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role.DISCUSSION: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

AB - OBJECTIVES: The purpose of this study was to explore the expectations of and experiences with the public healthcare system of domestic partners of people with Parkinson`s disease (PD) in Denmark and Norway.METHODS: A qualitative exploratory design was applied. The sample consisted of 14 people from Denmark (n = 9) and Norway (n = 5) living with a partner with PD. Semi-structured individual interviews were conducted between June and September 2020, digitally recorded, transcribed verbatim and analysed using a reflexive thematic analysis approach combining inductive and deductive approaches.RESULTS: The main themes were 'negotiating systems of support' and 'balancing being both a partner and a family carer'. Partners take responsibility for the people with whom they live and attempt to fill gaps in the public healthcare system. The most frequently described needs were more information, service coordination as the illness progressed and acknowledgement of the complex role.DISCUSSION: A recommendation for practice is recognition of the complex roles of partners to people with PD and reaching out to both regularly to determine needs. This may enhance the collaboration between partner carers, people with PD and healthcare providers, ensure sustainability of the system and optimise living with PD in the family.

KW - Parkinson's disease

KW - family carer

KW - caregiver burden

KW - well-being

KW - chronic illness

U2 - 10.1177/17423953231174470

DO - 10.1177/17423953231174470

M3 - Journal article

C2 - 37161264

SN - 1742-3953

VL - 20

SP - 258

EP - 270

JO - Chronic Illness

JF - Chronic Illness

IS - 2

M1 - 17423953231174470

ER -