Understanding carer strain and its influence on the decision making process of care home placement for people with Parkinson's - a mixed methods study

Hand, Annette (2017) Understanding carer strain and its influence on the decision making process of care home placement for people with Parkinson's - a mixed methods study. Doctoral thesis, Northumbria University.

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Abstract

Introduction
Parkinson’s disease (PD) is a progressive neurological condition. As the condition progresses people with PD (PwP) need more support with their care needs to remain at home. Due to the complex symptoms of PD, carer strain has been identified as a possible consequence for carers of PwP. PD is recognised as a risk factor for care home placement. It has been reported that carer strain can lead to PwP being placed within a care home setting; however there is scant literature at present to substantiate this claim or to understand the extent of this issue. The aim of this study was to determine the level of carer strain and to understand its influence on care home placement for people with moderate to advanced PD.

Methods
This is a convergent mixed methods study, following a critical realist approach. Participants were recruited from a representative PD Specialist Service in the North East of England. A battery of quantitative data were collected from people with moderate to advanced PD by a research nurse. Quantitative data, following an adapted stress-appraisal model, were collected on carer profile, tasks performed and variables causing carer strain. Study participants were followed for the study period of 24 months. Semi-structured, in-depth interviews were conducted with carers of PwP who went into a care home during the study period, to develop a deeper understanding of the carer role and the factors influencing care home placement. The quantitative data were analysed using multivariable linear regression modelling and qualitative data were analysed using thematic analysis. Quantitative and qualitative results were then integrated to provide a more complete understanding of the issues.

Findings
Quantitative data were collected from 115 patient carer dyads. The mean age of the carers was 70.7, the median time spent caregiving was 5 years and half of all carers spent at least 16 hours per day acting as a carer. A predictive model of carer strain was identified, which was supported and further explained by qualitative data. Variables that caused the greatest levels of strain included neuropsychiatric symptoms displayed by the PwP, along with difficulties with eating tasks, hygiene and mobility. Carers who had poor sleep, their own health issues and were involved in personal care and mealtime support were also most at risk of carer strain. Carer strain was also found to be significant in 69% of carers. Interviews were conducted with 10 carers of PwP who went into a care home placement. They all described the strain of caring and the need to reach a crisis point before PwP were placed into care. All 10 PwP went into a care home placement following a crisis point that involved an emergency respite placement or prolonged hospital stay. Predictors to care home placement were identified, including worsening memory, increased daytime sleepiness and functional disability for the PwP. Carers described distressing delsions and using dysfunctional coping to try and manage the situation.

Conclusions
Informal carers for PwP are older and are providing more support than previously appreciated. It is vital that health and social care professionals are aware that carer strain is a serious issue for many carers and there are a number of variables inparticular that can lead to the greatest levels of carer strain. Improving communication with carers will enable staff to fully understand symptoms displayed by the PwP, but also to ensure that carers feel involved and supported within their role. To try and maintain PwP within their own homes issues of carer strain need to be addressed in clinical practice and carers supported more within their role. Ultimately some PwP will still need to go into a care home and both carers and PwP need to be supported through this process, to avoid distressing crisis events and to make this difficult, but necessary, decision as smooth as possible.

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