”I Don’t Believe in Leading a Life of My Own, I Lead His Life”: A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms

Abstract

Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression. Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis. Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support. Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support. Clinical Implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

“…Following the initial assessment session, the CBT self-help workbook was introduced (Woodford and Farrand, 2013). The workbook was developed specifically for informal caregivers of stroke survivors and was informed by previous qualitative research exploring the difficulties experienced by informal caregivers with elevated symptoms of depression and anxiety (Woodford et al, 2018). This workbook introduced three single stand LICBT interventions: behavioural activation, problem solving and goal setting (Bennett-Levy et al, 2010).…”

“…Guided LICBT therefore represents a flexible way to deliver evidence-based psychological therapies, making it well suited to address barriers to treatment experienced by informal caregivers given demands of the caregiving role (Woodford et al, 2014;Woodford et al, 2018). Indeed, a review of interventions for informal caregivers of stroke survivors recommended telephone or internet-administered support to increase access for this population (Bakas et al, 2014).…”

“…Following the Medical Research Council (MRC) complex interventions framework (Craig et al, 2008), a written CBT self-help intervention for depression in informal caregivers of stroke survivors was developed (Woodford et al, 2014;Woodford et al, 2018). The CBT self-help intervention was designed to be supported by PWPs for delivery within IAPT services (Clark, 2011;Clark, 2018).…”

Internet use for family carers of people with intellectual disabilities: A literature review and thematic synthesis

“…Social support can become neglected when giving care to others; the intensive nature of caring may lead carers to feel socially isolated. Caring can sometimes cause resentment towards the cared for (Woodford et al, 2018) and can prevent carers from enjoying free time and often they will give up employment (Brodaty and Donkin, 2009). del- Pino-Casado et al (2018) highlight that there was a negative relationship between perceived social support and subjective caregiver burden.…”

Interventions for Psychological Health of Stroke Caregivers: A Systematic Review

“…The reduced physical, cognitive, and sexual functioning (e.g., decline in libido and sexual disorders), and the increased survivor dependency may force many couples to reevaluate and transform their relationship in light of the new post-stroke roles (Tamam et al, 2008; McCarthy and Bauer, 2015). Completing caregiving tasks entails a reduction in free time and social contacts, leading to progressive isolation (Ekwall et al, 2005; Ratti et al, 2017; Woodford et al, 2018). Concerning the psychological area, feelings of solitude, depression, and anxiety are very common among caregivers and are reflected in poor physical health (Perkins et al, 2013; Persson et al, 2015).…”