Care Home Placement - Integrated Data Results
6.2 Quantitative and Qualitative Data to be Integrated .1 The Quantitative Data .1 The Quantitative Data
During the study recruitment period (1st January 2015 – 31st December 2016), a total of 63 people under the PD service entered into a care home.
Out of these, 22 PwP had consented to be part of the Care Home study with 13 having identified an informal carer, all of whom had consented to take part in this study. Data were missing for one carer and so data were available for 12 carers of PwP who went into a care home during the study period (Figure 6.1).
187 Figure 6.1
Number of PwP Admitted into a Care Home during the study period
6.2.2 The Qualitative Data
From the interviews, three themes were identified of issues and reasons for care home placement, along with the decision making process, and who ultimately made it. Once the PwP went into the care home carers
experienced a whole array of feelings and emotions and often still carried on their caregiving role, albeit to a lesser extent. Carers also described how
63
PwP entered into a CH
22
PwP Consented into study entered CH
29 declined study
12 PwP did not meet inclusion
criteria
5
incomplete data
17
PwP with complete data
4 PwP with no informal carer
13
PwP with an informal carer (all consented to take part in study)
1
incomplete carer data set
12 Complete patient/carer dyad
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their quality of life had changed following care home placement. These three themes were:
4. I can’t do this anymore…but all I need is a crisis 5. The need to care and worry continues
6. The impact of not being an informal carer anymore.
The overview of each theme is described below.
6.2.2.1 I can’t do this anymore, but all I need is a crisis.
Many carers were aware that they had reached a stage, prior to care home placement, where they could not cope any longer. They identified how close to breaking point they were, mainly due to the disruptive symptoms displayed by the PwP. For some carers this stage had been reached months before care home placement finally occurred. A number of carers also described how this point had been identified by others, either family or a healthcare professional, who had hinted or suggested that it was time for the PwP to be placed a care. Carers described how they felt at this time and what they had wanted or expected of their own life. Conflicting feelings of guilt and relief around care home placement were prominent. Some carers described how they had looked into a care home placement and the discussions that took place with the PwP and/or social services.
Carers described how they needed an ‘event’ or ‘catalyst’ to finally lead to the permanent care home placement. For all carers this ‘event’ or
deterioration in symptoms then led to a respite placement or hospital admission for the PwP, and from there they never returned home. Carers witnessed tasks they used to perform being undertaken by others (formal carers) allowing them to reflect on the full extent of the role they used to undertake.
Carers then talked about who finally made the decision for the PwP to go into a care home and if this was a joint decision making process. Once the
decision was made then carers described how they made the choice as to
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which home the PwP would go into and what may have influenced this decision.
6.2.2.2 The need to care and worry continues
For a number of carers their caring role did not stop when the PwP went into a care home placement and they described the need for frequent visits, due in part to feelings of guilt and/or to ease the workload of overstretched formal carers, and the tasks they continued to undertake during these visits. Long term plans were also considered in the form of advanced care plans and financial security for the PwP to ensure their wishes would still be maintained.
Carers discussed a number of issues relating to the PwP that still caused worries or fears for them. This was often related to the disruptive or difficult symptoms still displayed by the PwP, or due to their experience of living in a care home and the quality of care they were now receiving. Carers explored what it was like for the PwP adjusting to living with others, adapting to care home routines and the positive elements and issues around care home staff.
6.2.2.3 The impact of not being an informal carer anymore
Carers described conflicting feelings now they were no longer the primary carer for the PwP, and how they were adapting to their new way of life. They described feelings of guilt, relief, worry, gratefulness and happiness. Whilst carers encountered difficulties adapting to separate lives from the PwP, there was also a realisation of an altered future for the carer, with new
opportunities and recovered social interaction with friends. Many carers described how their health and quality of life had improved with the new activities they were now able to be involved with. Some talked about their financial situation and the reassurance that they had financial security and would not have to sell their home, whilst others, who were paying for care privately, had concerns about long term care costs. A number of carers also talked about how the quality of the relationship with PwP had improved and that they were finally able to spend some quality time together again.
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6.3 The Role of Carer Strain in Influencing the Decision for Care