1. The experience of care home placements for people with Parkinson’s: A qualitative study in the North East of England
Lloyd L. Oates1, Annette Hand2,3, William K. Gray2, Richard W. Walker2,4
1. Lincolnshire Partnership NHS Foundation Trust, 2 Northumbria Healthcare NHS Foundation Trust, North Tyneside General Hospital, Rake Lane, North Shields, Tyne and Wear, UK. 3.Department of Nursing, Midwifery and Health, Northumbria University, Newcastle-upon-Tyne, UK 4. Institute of Health and Society, Newcastle University, Newcastle-upon-Tyne, UK
Thematic analysis
Four themes and two subthemes were developed:
Loss: This was described in terms of loss of independence and loss of relationships, although these aspects were interrelated.
2. Reasons for care home admission: In many cases a serious fall resulting in hospitalisation, acted as a catalyst for care home admission.
2a.Care home choice: For many, making decisions about care home placement felt rushed. Care home availability, bed space and location were important factors. Often the response to ‘what made you choose this home?’ was that ‘they had a bed’.
3.Transition, adjustment and adaptation: Adjusting to new routines, living with others, having others make decisions for them, while managing changes in symptoms, was a challenge.
4. Care home life: People talked about what impacted on their experience of living in the home. Having staff that understood Parkinson’s helped them feel safe.
4a. Medication: timing, control and impact: Participants highlighted that not getting medication on time was a major concern.
Objective
This study aimed to explore the decision-making processes at the time of placement and the experiences of care homes residents with Parkinson’s.
‘Hellish, it takes your, a bit of your, manhood away from you, it takes away your independence.’
Background
People with Parkinson’s have an increased risk of care home placement1.
Data on the lived experiences of people with Parkinson’s within care homes, and the decision-making process around the time of placement are scant.
Methods
This study was part of the larger Northumbria Care Needs Project (NCNP)2 and was a qualitative, experiential account of people with Parkinson’s living in care homes.
Inclusion criteria were people with moderate to advanced Parkinson’s (H&Y III-V), taking part in the NCNP, and living in a care home in North-East England.
24/91 in a care home were recruited to the NCNP, of whom 16 had capacity to consent to an interview.
Data collection took place between 3 September 2015 and 1 February 2016.
Semi-structured interviews were conducted and continued until data saturation was reached.
Transcripts were manually categorised and thematically analysed3.
Results
Data saturation was reached after 10 interviews, their profile is summarised in Table 1.
‘Having to rely on somebody else for everything, if I need to go to the toilet I have to wait until somebody comes and helps me, that sort of loss of personal dignity is the most difficult thing.’
‘In the other places I’ve been to there was no mention of it [PD], they didn’t seem to know anything about Parkinson’s, but this place does… I feel better about it. I was always frightened that I would get the wrong tablets [in previous homes].’
‘I say I regularly don’t get enough tablets. They say I do, but I put them down in the book every time I get them. Some nights I don’t get any.’
CONCLUSION
This study provides an insight into participants’ positive and negative experiences of care home placement. Increased support from health and social care services before individuals need to move to a care home may help to smooth the transition and increase self-efficacy.
ACKNOWLEDGEMENTS
This study was part-funded by a grant from Parkinson’s UK (Ref: G-1310). Northumbria Healthcare NHS Foundation Trust acknowledges the support of the National Institute of Health Research Clinical Research Network (NIHR CRN).
References
1. Aarsland D, Larsen JP, Tandberg E, Laake K. Predictors of nursing home placement in parkinson’s disease: A population-based, prospective study. J Am Geriatr Soc. 2000; 48(8):938–942
2. Hand A, Walker RW, Gray WK, Oates LL. The care needs project: understanding the experience of people with PD in institutional care and understanding the care needs of people with PD: 527. Movement Disorders. 2016; 31: S168–S169
3. Braun V, Clarke V. Using thematic analysis in psychology. Qualitative research in psychology. 2006; 3(2):77–101