Psychoeducation Interventions after Brain Injury – A Scoping Review

doi:10.21203/rs.3.rs-4840819/v1

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Psychoeducation Interventions after Brain Injury – A Scoping Review

https://doi.org/10.21203/rs.3.rs-4840819/v1

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Background and aims: Psychoeducation is an intervention which involves structured disease specific information and support aimed at improving coping and understanding. Evidence has shown that this type of intervention improves outcome in mental illness and other medical illnesses. The aim of this scoping review is to identify the available evidence and key concepts relating to psychoeducational interventions following acute brain injury.

Methods: This review was reported in line with the PRISMA Extension for Scoping Reviews. Three electronic databases (MEDLINE, Embase, PsycINFO) were searched for articles relating to psychoeducation interventions following acute brain injury. Search retrieved 5.492 articles (after removal of duplicates), titles, abstracts and full texts were screened, and data extracted for included studies. The quality of randomised control studies was assessed using JADAD scale. TIDieR scale was used to describe interventions.

Results: Twenty-seven studies were included with a total of 1726 participants. Eighteen of the studies were randomised control studies, all with a JADAD score ≥ 2.

Thirteen studies were in stroke, eight in traumatic brain injury and six in acquired brain injury. There was heterogeneity in study design, intervention and outcome measures used. Eleven randomised control studies showed significant improvements in fatigue, emotion, or quality of life.

Conclusion: Psychoeducation may improve life after brain injury, however interventions to date have been varied and used a wide range of outcome measures. Standardisation would be needed to facilitate reproducibility.

Neurology

Psychoeducation

Support group

Brain injury

Patient education

Patient support

Brain Injury is a significant cause of mortality and morbidity, and survivors can experience a number of ongoing difficulties which impact on their ability to return to their previous level of function and quality of life¹. Aside from physical disability, studies in traumatic brain injury (TBI), stroke and subarachnoid haemorrhage (SAH) consistently describe cognitive, emotional, and psychosocial issues, and fatigue, which are associated with reduced social participation and community re-integration including return to work ^2,3,4.

It has been estimated that around 50% of individuals experience anxiety and depression following traumatic brain injury along with issues relating to anger management and reduced self-esteem⁵. Such difficulties are also evident in the stroke literature with depression reported in up to 54% of survivors and cognitive disturbance 50–70%, both of which affect adjustment and the return to daily life^6,7. In SAH survivors’, high levels of ongoing need are reported, with a large proportion described as unmet. Congruent with TBI and stroke, difficulties with fatigue, mood and cognition are described along with a need for further information relating to their condition and recovery. The current literature does not identify any relationship between level of unmet need and time since brain injury, indicating that these needs are persistent and long term⁴.

Despite the high prevalence of ongoing problems in survivors, the availability of guidance on how to address these issues is inconsistent, however there is an overwhelming recognition that further support, and education should be offered post-discharge.

The Scottish Intercollegiate Guidelines Network acknowledge the need for non-pharmacological interventions to address emotional and cognitive difficulties after head injury but note the lack of evidence on which to base the development of services⁸.

Stroke rehabilitation guidelines recommend that education and support is provided for people with stroke to help them to understand the extent of their deficits and the Royal College of Physicians stroke guidance suggests that those with mild/moderate symptoms of psychological distress, depression or anxiety after stroke should be given information, support and advice and be considered for psychosocial interventions such as psychosocial education groups ^9,10.

Psychoeducational interventions involve the provision of education to individuals with psychological disorders or physical illnesses, most of the current literature relates to mental health, where psycho-education programmes have been shown to improve knowledge, symptom management and adaptation/coping. Such programmes have also been used in other medical illnesses, including cancer, cardiovascular disease, diabetes, and chronic pain¹¹. In areas common to both mental and physical illness such as mood, fatigue, need for information and self-management, psychoeducation has been shown to be effective, leading to the World Health Organization encouraging its provision with the aim of providing information to patients about treatment management, helping them to avoid complication and engaging them in their own care path to achieve the best possible quality of life^12,13.

In recommending their use, NICE define psycho-education interventions as “any structured group or individual programme that addresses an illness from a multi-dimensional viewpoint, including familial, social, biological and pharmacological perspectives, as well as providing service users and carers with information, support and management strategies”¹⁴.

Given the emerging evidence of the effectiveness of psychoeducation in chronic illness, survivors of acute brain injury may benefit from this type of intervention. The aim of this scoping review is to explore the psycho-educational interventions used to address the difficulties experienced following acute brain injury. The evidence identified will inform the development of a group psycho-education programme which the authors are in the early stages of devising for SAH survivors.

This scoping review is reported in accordance with the PRISMA Extension for Scoping Reviews.

Data sources and search strategy

Search terms were developed using index terms and free text words relating to, subarachnoid haemorrhage, intracranial haemorrhage, stroke, cerebrovascular accident, acute brain injury, traumatic brain injury, head injury, concussion and psychoeducation, patient education, group education, support group and support program. MEDLINE, EMBASE and PsycINFO databases were searched, with strategies adapted for each database. Search results were exported to Zotero, and duplicates removed. The last search was conducted on 22nd April 2022.

Eligibility criteria

Studies were included if they met the following criteria: (1) focused on interventions related to education, support, and management strategies after acute brain injury (2) were administered following discharge in hospital or community settings; (3) included people with SAH, traumatic brain injury, head injury or stroke (4) presented relevant information about psychoeducation as a component of the intervention that could be extracted. Articles were excluded if they (1) did not have a component specifically designed for people with SAH, traumatic brain injury, head injury or stroke (2) did not have an educational component (3) did not have any outcomes related to mood, quality of life, or fatigue (4) focused only on the physical impact of acute brain injury (5) focused only on secondary prevention (6) were a protocol; (7) focused on other participant groups (for example, carers, family members, or health-care professionals).

Procedure

Databases were searched; duplicates removed from results and titles and abstracts were then screened for eligibility. Full text articles of potentially eligible studies were then assessed. Results of included studies were then collated.

Data extraction

Data were extracted relating to study characteristics, participant numbers and demographics, outcome measures and results. A data extraction form based on the TIDieR checklist was used to ensure the same data was collected from all studies.

Study design and participant characteristics

The initial search identified 5,578 results. Twenty-seven studies were included in the review. Most studies (18/27) were randomised controlled studies. Figure 1

A total of 1726 participants with brain injury (958 stroke, 422 traumatic brain injury, 185 acquired brain injury, 158 head injury and 3 subarachnoid haemorrhage) were recruited across 27 studies. Studies were conducted in Australia, Canada, China, France, Netherlands, Norway, New Zealand, Taiwan, United Kingdom, and USA between 1999 and 2019. Recruitment rates of 42% − 94% were reported, however detail regarding recruitment methods was limited. Participant numbers and demographics were consistently well-reported. Dropout rates, of between 0 and 34%, were detailed by all studies. Five studies had complete adherence ^{24,26,34–36}, the two studies with the highest dropout rate also had the largest sample sizes (202 and 204 ^{16, 29}). Where reported, the time from injury to recruitment ranged between 3 months and eight years. Seven studies utilised a facilitator manual ^{18,21,33,37–40} which would suggest enhanced fidelity of delivery, tailoring and modifications aimed at improving accessibility of resources were also reported.

Quality appraisal

The quality of included randomised controlled studies (RCTs) was assessed using the JADAD scale¹⁵. All RCTs scored ≥ 2 on JADAD scale. Almost all studies received a low score for blinding, 17/18 studies accounted for all participants and 12/18 of studies scored highly for randomisation. A summary of scores is shown in Table 1

Table 1

Intervention details

Overall, interventions were well described in accordance with the TIDieR checklist ⁴¹.

Most interventions were carried out in outpatient clinic or rehabilitation centre settings, with four being delivered at the participants home ^{17 ,18,20,21}. Intervention duration ranged from 1 to 24 weeks and consisted of between 4 and 24 sessions.

Some studies focused specifically on areas such as fatigue, psychosocial functioning, memory, ongoing symptoms, and quality of life, with five interventions incorporated a goal setting approach^{28,33,36,37,43}.

All studies included a psychoeducation component, of which the content, focus and delivery varied, with two also involving of an element of physical exercise. Two interventions were based on mindfulness therapy with a control group who received a programme of psychoeducation ^16,32.

Interventions were delivered by a range of professionals, over half of those studies who provided detail were led by a psychologist, other disciplines included speech and language therapists, occupational therapists, advanced practice nurses, employment specialists, stroke nurses and peer dyads.

Twenty-two interventions were delivered face to face in group sessions, two of which had additional telephone sessions ^31,40. Three were delivered in person, one to one ^17,18,21, one was delivered either in a group, one to one or a combination of both ⁴¹ and one was delivered online ²⁰.

Outcome Measures

Several different outcome assessment tools were used to measure the effect of the interventions, seven relating to fatigue with three studies using the Fatigue Severity Scale (FSS) ^23,36,42, fourteen measured mood or emotional wellbeing ten of which administered the Hospital Anxiety and Depression Scale (HADS) ^{19,23–26,29,31,35,38,39} and eight to quality of life with 4 choosing to use the Stroke Impact Scale ^22,34,40,42

Effectiveness of interventions

22/27 studies reported significant results^{16–19,21,22,23,24–29,32,33,34,36–39,42,43}. 14 out of 17 RCT’s showed significance in favour of psychoeducation ^{16–19, 21,22,23,25–28,32,33,38}. In the four studies that focused specifically on fatigue after brain injury, all 4 described significant improvements in fatigue^23,25,35,40, however in one of the two randomised controlled studies both the intervention and control groups showed significant levels of improvement ²³. Nine studies specifically aimed to target anxiety, depression and/or psychological distress ^{16,19,24,25,28,32,33,38,39}, five of these showed significant results relating to these specific symptoms ^{28,32,33, 38,39,} with one of the three randomised controlled studies noting significant results in both experimental and control groups³³. One study which focused primarily on improving memory showed significant improvement in the intervention arm ²¹. 13/27 studies related to wider aspects of overall recovery ^{17,18,20,22,26,27,29–31,34,35,37,42}, six of which showed significant improvement in areas such as quality of life, resilience, cognition, post-concussion symptoms, self-efficacy, and stroke knowledge ^{17,18,26,27,29,37}. All the studies that were delivered with the use of a manual for facilitators (n = 2)^17,22, participants (n = 2)^21,38 or both (n = 5) ^{18,33,37,39,40} reported significant results.

The aim of this scoping review was to assess the nature and extent of evidence relating to psychoeducational interventions following acute brain injury. The review identified 27 studies that focused on providing education and support to people who had experienced an acute brain injury, aimed at improving knowledge of their condition and assisting in the self-management of ongoing issues with fatigue, emotional and cognitive functioning. Overall, the evidence suggests the potential for psychoeducation interventions to be beneficial in improving life after acute brain injury, however the extent of the intervention effects varies, and the quality and heterogeneity of the studies identified, makes generalisability difficult. Specific areas which may relate to this are:

Definition

The lack of a consistently utilised definition of psychoeducation led to some difficulty in deciding which studies were using this approach and could therefore be included, the inclusion criteria for this review were based on there being evidence of education (where available detailed descriptions of the intervention facilitated this judgment) and outcome measures relating to psychosocial functioning, fatigue, and quality of life.

Samples

Sample sizes varied, but overall were small with 16/27 recruiting 50 or less participants, this may reflect recruitment strategy with several cohort studies using convenience sampling methods. This may also indicate uncertainty from those approached to take part, due to their lack of awareness of such interventions and/or the link between emotions and medical illness. They may feel that such programmes represent abandonment from the traditional clinician follow up or potentially associate them with a sense of social stigmatisation⁴⁷. 10/27 studies screened potential participants over and above them having suffered a brain injury. Four used specified cut-off points on screening tools and others only included participants who had ongoing symptoms identified during an initial interview or with a clinical measure. Seven of the ten who screened participants reported significant results.

Appropriate time point

The reported time since brain injury varied with only four studies recruiting participants who were less than a year post injury and 5 including patients more than five years post injury. This clearly represents a diverse population in terms of recovery; however, this did not translate into any clear guide to the optimum time at which to offer such an intervention, with significant results reported in studies at a variety of times post injury. The UK and Ireland National Clinical Guidelines for Stroke recommend that the physical, neuropsychological, and social needs of survivors are assessed at 6 months post stroke and that if any needs are identified, interventions to address these should be offered¹⁰. NICE concur in recommending that following a comprehensive assessment, people with panic or anxiety should be offered access to interventions based on the severity of disorder⁹. Systematic screening is recommended by the Improving Access to Psychological Therapies (IAPT) to identify all relevant problems and guide intervention⁴⁴.

Which Intervention

The studies identified in this review delivered a variety of interventions, some with a focus on a specific problem such as fatigue, memory, psychological distress others to overall recovery. A structured programme of education was the most delivered format, with an average of 9 sessions (1–24). Session themes commonly related to reducing stress, exercise, nutrition, sleep hygiene, mood disorders, relationships and returning to work and recreation.

The mental health literature describes significant efficacy of psychoeducation interventions⁴⁵ and there is clear overlap of mood and anxiety disorder in brain injury survivors. In combining data from this review psychoeducation appears to show some signal of effectiveness in depression, psychological distress, and fatigue.

NICE recommend that psychoeducation groups should be delivered by “trained practitioners” although there is no clarity as to what this should involve⁴⁶. In addition, Sansone highlights the importance of including a professional who understands the natural course and treatment of the illness the person is suffering from⁴⁷, with others going as far as to state that expertise in the disorder itself is more important than the therapy technique⁴⁸. Training of professionals was not routinely reported in the studies identified in this review, although all included healthcare professionals usually involved in the care of brain injured patients, such as nurses, occupational therapists etc. with 14/27 reporting that a psychologist was involved in the delivery of the intervention^{17, 21,24–29,33.36.38–40,42}. The delivery of a psychoeducation programme by a disease specific multi-disciplinary team may address the issues of access to one-to-one psychological support which are well recognised as being limited services, in 2013 the National Confidential enquiry into Patient Outcome and Death (NCEPOD) found that only 36% of neurosurgical units were able to offer neuropsychological support to subarachnoid haemorrhage patients post discharge⁴⁹.

NICE recommend a manual based approach to the delivery of psychoeducation interventions⁵⁰, the studies identified in this review as having utilised this approach all reported significant results, suggesting that this may enhance effectiveness.

The control groups in several studies were very similar to the intervention, consisting of a similar, or the same number, of sessions of education without the specific focus of e.g., memory, goal management or fatigue. In some of these studies, significant improvements were noted in both groups.

Which outcome measures

A wide variety of outcome measures were used across all studies identified, measures of anxiety and depression (HADS), fatigue (FSS), psychological distress (BSI-18) and quality of life (SIS) were the most frequently used in line with the issues commonly reported after brain injury. In measuring depression, the Improving Access to Psychological Therapies guidance (IAPT) recommend the use of Patient Health Questionnaire − 9 (PHQ-9) which was used by one study⁴⁰ and in measuring anxiety, the Generalised anxiety Disorder Assessment (GAD – 7) and for fatigue the Chalder Fatigue Questionnaire (CFQ) neither of which were used in any of the studies.

The findings of this review suggest that psychoeducation may improve life after acute brain injury, However, a wide range of methods and outcome measures have been used. Future studies should use contemporary guidance to enhance standardisation and facilitate reproducibility.

Disclosure of interests

No interests to declare.

Declaration of funding

Louise Dulhanty received some funded time from the Manchester Academic Health Science Centre

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Table 1 is available in the Supplementary Files section.

The authors declare no competing interests.

IncludedStudiesTable.png
Table 1: JADAD scale scores of included randomised controlled studies.

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Psychoeducation Interventions after Brain Injury – A Scoping Review

Status:

Version 1

Abstract

Figures

Introduction

Methods

Data sources and search strategy

Eligibility criteria

Procedure

Data extraction

Results

Study design and participant characteristics

Quality appraisal

Intervention details

Outcome Measures

Effectiveness of interventions

Discussion

Definition

Samples

Appropriate time point

Which Intervention

Which outcome measures

Conclusion

Disclosure of interests

Declaration of funding

References

Tables

Additional Declarations

Supplementary Files

Status:

Version 1