Inpatient stroke caregivers support group: a pilot study

Juvairia Qasmi

Carlotta Urso

Abstract

Stroke is a common cause of adult disability in the UK. Caregivers often assume the role of primary carers, providing unpaid care and support to stroke patients.  The burden of care reported by stroke caregivers is high and there is general dissatisfaction regarding the information offered to them, including lack of support and resources available during and after hospital stays. We started a support group in a stroke ward to examine how the information about stroke patients’ support can be delivered effectively.  Stroke carers were asked to complete a validated questionnaire before and after the delivery of the support groups. Our results show that most of the critical needs of stroke caregivers were not being met or only partially met on the ward. We also found that the stroke caregivers had found our support group a valuable resource. Our pilot is limited due to its size, duration, and for being conducted at one stroke unit. Nonetheless, we highlight gaps in the current literature and a need to carry out large multi-site studies for drawing firm conclusions regarding such support groups for stroke caregivers.

Keywords: stroke, stroke caregivers, outcome measures, pilot support group, service improvement.

Introduction

A stroke happens when the blood supply to part of the brain is cut off and brain cells are damaged or die. The effects of stroke may vary from person to person, depending on which parts of the brain have been affected, severity of the stroke, and background factors. Stroke is the single most common cause of adult disability in the UK and the third most common cause of death [1].

Stroke can lead to substantial familial challenges [2] with multiple negative outcomes for spouses of stroke survivors, including high levels of strain [3,4,5], perceived care burden [6], dissatisfaction with life as a carer [7] and anxiety [8]. In addition to emotional distress, stroke caregivers are often subjected to disruptions to their social and leisure activities [9], loss of freedom and unmet information needs [10]. Furthermore, stroke can often cause cognitive impairment, and the level of cognitive deficits correlates to stroke caregivers’ outcomes, e.g., perceived stress, care burden, and psychological wellbeing [11].

Stroke patients and their carers routinely report dissatisfaction with the volume, content, delivery and timing of needed information. There is consistent evidence to suggest that providing relevant and usable information to stroke survivors and their carers decreases reported levels of stress and frustration [9,12,13]. However, when Cheng and colleagues [14] examined eighteen studies evaluating the effectiveness of psychoeducation and social support groups, there was insufficient evidence about which intervention was optimal and could be provided to stroke caregivers.

We organised a stroke caregiver support group within an inpatient stroke ward, as a pilot, to ascertain psychoeducational needs of the stroke caregivers and to understand whether these needs were being met on the ward. 

Methods

2.1 Participants

A total of 12 carers (m=2; f=10) participated in this pilot. Participants were recruited from the Hyper Acute Stroke Unit (HASU) and Stroke Unit (SU) of an acute hospital in Southeast London. They self-enrolled in this pilot carers’ support group after coming across invitation posters on the stroke unit noticeboard.

2.2 Materials

Two questionnaires were administered by the healthcare team to the participants: the carers’ support group questionnaire and a feedback questionnaire.

The carers’ support group questionnaire was based on the Family Needs Questionnaire (FNQ – Kreutzer et al, 1994), a 40-item self-report measure that provides a quantitative assessment of perceived needs of family members of brain injury survivors in the acute and post-acute stages of recovery. The FNQ consists of six scales: Health Information, Emotional Support, Instrumental Support, Professional Support, Community Support Network, and Involvement in Care. From the FNQ, the researchers extracted 11 questions which were most relevant for the scope of this study.

The feedback free-text questionnaire was created by the researchers to gather information about how the stroke caregivers perceived the support group itself. It had 6 questions to capture how helpful they felt the group was, and which topics they felt they needed to know more about.

A PowerPoint presentation created by the researchers was used to provide psychoeducation to the stroke caregivers.

Approval for this study was granted by the Hospital Patient and Public Involvement committee.

2.3 Procedure

Following recruitment, the carers attended the support group sessions held in the dayroom of the SU. After the welcome and explanation of the scope of this pilot support group, they were asked to complete the carers’ support group questionnaire prior to the start of the first session. The researchers then delivered the PowerPoint presentation, followed by a space dedicated to open questions. The session lasted for approx. one and a half hour.  Afterwards, stroke caregivers were asked to complete the feedback questionnaire. The support group had three additional sessions.

For the carers’ support group questionnaire, the data collected was entered into Excel data worksheet and the 11 questions were divided into the following three themes:

  • Communication skills and inclusion
  • Knowledge – Practicalities

Results

To understand whether the need was met, the mean from the responses in data was calculated and then transformed into a percentage value. 

Stroke carers were asked to rate the importance of each theme (1-10). This scale was then classified and put in different ranges “low”, “medium” and “high” as per following: score 0-4 “low”, 5-7 “medium”, 8-10 “high”. Overall, results can be summarised as it follows.

“Communication skills and inclusion” and “practicalities” themes were rated as “high” importance. Results showed that 70% of participants thought that these needs had been met by healthcare professionals.

The “knowledge” theme was rated as “high” importance. Results showed that 75% of participants thought that their knowledge needs had not been met on the ward/unit.  Approximately 70% of stroke caregivers reported that they were not aware of which resources were available post-discharge in the community.

For the feedback questionnaire after the carers’ support group, a qualitative approach was used.  All stroke carers (100%) identified the support group as being “very helpful” and would recommend it to other carers. Themes were identified on what stroke caregivers found helpful. Suggestions for improvements were proposed, which have been divided into the following three categories:

  • to receive stroke education
  • to be given information regarding the medications, treatment and investigations related to stroke and its possible aetiology
  • to have a better understanding of the impact of stroke on mental health.

Participants also reported on the ways to improve and provided recommendations: to include a group discussion, to be able to share experiences, to be given more information about the support available in the community post discharge, for the support group to be offered earlier in the patient’s experience and to have other ward representatives join the support group.

Discussion and Conclusion

Our findings highlight that needs of high importance for stroke caregivers were not met or only partially met on the ward. It appears that stroke caregivers had experienced significant barriers, such as limited availability of information, lack of dedicated time, and lack of participation in healthcare team decisions. This lack of engagement may have created a mismatch between stroke caregivers’ and healthcare providers’ goals or expectations for recovery [14, 16].

We observed that all stroke caregivers found the support group a valuable and useful space, and would recommend it to other stroke caregivers. It seems that establishing a weekly support group within stroke wards could fill the gap for this unmet need and enhance the support offered to stroke caregivers, providing tailored psychoeducation and resources available post-discharge. Evidence shows that adopting a family-centered care model on stroke wards can lead to better outcomes for survivors post-discharge, and promotes wellbeing amongst caregivers [17]. 

Growing evidence links psychological and functional outcomes of stroke survivors to family functioning [18]. Providing stroke caregivers with psychoeducation that included stress coping strategies and problem-solving skills has been shown to have a beneficial effect on stroke caregiver’s family functioning and a significant reduction of the stroke caregivers’ depression level [19].  Our pilot study did not include stress coping strategies or problem-solving skills; a follow-up study could focus on offering these in support groups.

There is a lack of coordination between community resources and inpatient wards as 70% of stroke caregivers reported not being aware of which resources were available post-discharge in the community. Studies report that 44% of stroke caregivers perceive a substantial burden during the post-acute phase [20,21]. Our support group targeted this by including information about post-discharge support resources in our presentation, and stroke caregivers reported this knowledge very helpful. Having healthcare professionals from different backgrounds also allowed for a more comprehensive and holistic approach.

The stroke carers were asked in the feedback forms about what other content they would like to have included in the support group. They expressed that they needed to know about practical issues following discharge, such as how to apply for the lasting power of attorney, quota protection and benefits advice and what to do if their loved one lost capacity. These needs could be addressed in a future support group, with a social worker included in conducting the support group.

In terms of limitations of this pilot, our recruitment process limited participants to stroke support group attendees reducing our sample size. We also offered a few sessions over a short duration due to limited resources. Future studies could include stroke support group non-attendees or controls, for comparison and to gather wider insight into the benefits or otherwise of attending the support groups. Female overrepresentation in our pilot reflects predominance of male patients in the unit at the time and perhaps their own enthusiasm to improve the service.

Despite limitations, this pilot has identified unmet needs of carers of stroke patients in a typical stroke unit in the UK. We recommend large scale multi-site studies for drawing firm conclusions regarding the efficacy of such support groups for stroke caregivers.

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About the authors

Dr Juvairia Qasmi is a Higher Trainee (ST6) in Psychiatry, working at Oxleas NHS Trust.

Carlotta Urso is a Higher Assistant Psychologist, working at Lancaster Road Hospital.