Background Informal carers are vital in caring for palliative and end of life care (EoLC) patients and need to be adequately supported. Hospice Isle of Man sought to understand the unique carer experience and identify areas for service development.
Aims To identify the support carers access and value; the factors that assist or hinder accessing support; and to understand carer wellbeing.
Methods Using a mixed methods study design, a survey was developed based on carer reported outcome measures (Michekls et al., 2016). Data were collected on demographics and domains of the carer experience. Surveys were distributed by clinical staff to carers of patients on their case-loads between November 2017 and February 2018. We calculated frequencies for multiple-choice questions and conducted thematic analyses on qualitative responses.
Results A total of 44 carers returned the survey. The average age of carers was 58.0±17.1 years, ranging between 7 to 84 years and 66% were female. A large proportion (68%) felt ‘out of control’ since their loved one’s illness. Qualitative analyses highlighted themes of feeling ‘dictated to by the illness’ and having ‘no free time’. Half of carers received ‘some’ or ‘little’ support from their family and friends. Services provided ‘some’ assistance to 61% of the sample, ‘a lot’ to 32% and ‘a little’ to 7%. Carers valued responsiveness, access to out of hours, information and reassurance. Analyses revealed difficulties in asking family for support and found practical support from external agencies to be vital. Despite these challenges, 57% of carers described the role as fulfilling.
Conclusion Carers primarily rely on services, and not families, for support. Service strategies need to recognise that although carers face challenges, they also find fulfilment and they need to support carers in ways to mitigate the feelings of loss of control.
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