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"Feeling loss of control": The experiences of informal carers of people at the end of life

Author:

Giovanna Cruz

Hospice Isle Of Man, IM
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Abstract

Introduction

Informal carers play a vital role in caring for palliative and end of life care patients and as such need to be adequately supported. Hospice Isle of Man sought to understand the experience of carers to ensure services meet their needs. The aims of the study were 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 (Michels et al., 2016). Data were collected on demographics and domains of the carer experience using multiple choice questions with an option to comment on the answer. Physical and emotional well-being were measured using a Likert scale of 0 to 10 (excellent). Surveys were distributed by clinical staff to carers of patients on their caseloads between November 2017 and February 2018. Descriptive statistics were conducted. Statistical significance was set at α=0.05 and tested using a Student’s t-test when comparing two group means and the Pearson’s Chi-squared test for proportions. Thematic analysis of the comments was carried out according to the phases outlined in Braun and Clarke, 2006.

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, 66% were female, 50% were retired and 20% were in paid work. Carers were a spouse or partner (68%) or children (23%) and 89% were living with the person. Fewer carers rated their physical health below 5 compared to emotional health (25% and 39%, respectively). The majority (68%) sometimes felt “out of control” since their loved one’s illness (32% said never or rarely). The median number of years caring was 2, range <1 to 18 years. Qualitative analyses highlighted themes of feeling “dictated to by the illness” and having “no free time” and “unable to leave”. Years of caring (<1, 1-3, 4+) was associated with the inability to engage in activities outside of caring (most, some, or few) (p=0.02). For those caring for <1 year, 57% were able to do “few” activities compared to 8% of carers who had been caring for 4+ years. Half of carers received “some” or “little” support from their family and friends. Services provided “some” assistance to 61% of the carers, “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.

Discussion/Conclusion

Carers of patients on the Hospice caseload heavily rely on services, and not families, for support. Support should be tailored to the stage of caring with greater emotional support needed. Service strategies need to recognise that although carers face challenges, they also find fulfilment and they need to support carers in ways to mitigate their feelings of loss of control. 

How to Cite: Cruz G. \"Feeling loss of control\": The experiences of informal carers of people at the end of life. International Journal of Integrated Care. 2021;21(S1):1. DOI: http://doi.org/10.5334/ijic.ICIC20129
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Published on 01 Sep 2021.

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