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The HEADS: UP Development Study: Working with Key Stakeholders to Adapt a Mindfulness-Based Stress Reduction Course for People with Anxiety and Depression after Stroke
Mindfulness By Brandon Gaudiano
By Maggie Lawrence 1, * , Bridget Davis 1, Leyla De Amicis 2, Jo Booth 1, Sylvia Dickson 1, Nadine Dougall 3, Madeleine Grealy 4, Bhautesh Jani 5, Margaret Maxwell 6, Ben Parkinson 1, Matilde Pieri 1 and Stewart Mercer 7
Nursing, Midwifery and Allied Health Professions Research Unit (NMAHP-RU), Faculty of Health Sciences and Sport, University of Stirling, Stirling FK9 4LA, UK
Background: Following stroke, rates of mood disorder are and remain high at five years (anxiety 34.4%; depression 23%). Structured mindfulness-based stress reduction (MBSR) courses are effective in a range of health conditions, but stroke survivors find adherence challenging. We aimed to adapt a standard MBSR course specifically for people affected by stroke. Methods: We recruited stroke survivors and family members with symptoms of anxiety and/or depression to take part in a co-development study comprising two rounds of MBSR ‘taster’ sessions, followed by focus groups in which views were sought on the practices sampled. Data were collected in October 2017 and May 2018 and were analysed using framework analysis, informed adaptations to mindfulness materials and delivery. Results: Twenty-eight stroke survivors and seven family members participated. Nineteen (76%) stroke survivors had anxiety; 15 (60%) had depression. Five (71.4%) family members reported anxiety; n = 4 (57.1%) depression. Thirty participants attended the first round of taster sessions and focus groups; twenty (66%) the second and three (10%) were unable to attend either round. Framework analysis informed adaptations to course delivery, practices, and materials, ultimately resulting in a stroke-specific MBSR course, HEADS: UP (Helping Ease Anxiety and Depression after Stroke). Conclusions: HEADS: UP may provide a feasible, appropriate, and meaningful self-management intervention to help alleviate symptoms of mood disorder.
Social Science (2015)
Stroke is a leading cause of death and disability [1]. Globally, over 80 million people live with the effects of stroke and annually new events affect 13.7 million people [1]. One in four people aged over 25 years will have a stroke in their lifetime [2]. The potential effects are many and varied, and may include physical, cognitive, and communication impairment as well as psychological disorders of anxiety, depression and psychosocial stress, the last often being referred to as ‘invisible’ effects of stroke [3]. An additional feature of stroke is recurrence; in a UK population-based cohort study (n = 6052), estimated 12% (10%–15%) at 5 years [4]. It is estimated that up to 90% of stroke events are linked to lifestyle risk factors, including psychosocial factors (stress (home and work), life events, and depression), and could be preventable if people took action to reduce risk such as making changes to lifestyle factors including stress management [5].
At a systems level it is estimated that per patient month stroke services and care provision costs USD 4850 (USA), or AUD 752 (Australia) [6]. At the individual level psychosocial wellbeing can be significantly challenged, with individuals experiencing psychological disorders, distress, and social isolation, which individually or in combination may affect long-term functioning and quality of life [7]. Stroke impacts are felt across families, friends, and wider networks who may experience a sense of burden, emotional distress and disruption of family relationships [8, 9]. Stroke experiences are different for everyone, and recovery trajectories are variable [10]. Psychological consequences of stroke are considerable and often enduring. A large-scale meta-analysis (22, 262 participants; 34 countries) found post-stroke anxiety in 18.7% (95% CI, 12.5, 24.9) with clinical interview and 24.2% (95% CI, 21.5, 26.9) using a rating scale [11]. A 5-year post-stroke meta-analysis revealed depression in 23% (95% CI, 14%–31%) of cases [12]. A large cohort study [13] found anxiety at five years in 34.4% (95% CI, 30.8%–38.1%). Mood disorder negatively impacts rehabilitation outcomes, possibly due to reduced engagement levels [14, 15] and on proactive self-management of recovery and prevention of recurrence of stroke and other cardiovascular disorders [15, 16]. A recent systematic review identified that low mood/ and depression negatively affected motivation to be active, even though being physically active is known to improve mood [17]. In a stakeholder consultation project, stroke nurses identified management of mood as a research priority [18], and people affected by stroke and health professionals, identified long-term psychological consequences of stroke as an unmet need and called for long-term, family-centred, self-management interventions [19].
Mindfulness-based interventions (MBI) are structured mindfulness courses, developed from traditional Buddhist meditation [20]. The first mindfulness-based stress reduction (MBSR) course was developed in the 1980s [21]. Forty years on, MBSR is a widely used intervention delivered to groups in clinical and non-clinical settings. It has an established protocol [22] comprising an introductory session followed by eight weekly sessions (2.5–3.5 h; 7.5 h (day retreat) in week 6). Daily practice, sustained over time, is an essential element of course engagement. A considerable body of evidence demonstrates the effectiveness of MBSR, and more broadly, MBIs in the treatment of mood disorder (predominantly anxiety and depression) in diverse clinical populations, including in long-term conditions ((95% CI, 0.35, 0.17–0.53) [23], and in a range of settings from acute clinical settings to the wider community [24].
Annual Meeting Program
In relation to stroke, research evidence regarding psychosocial complex interventions is inconclusive and often based on methodologically weak studies [25]. Lawrence et al.’s review (2013) found only four studies, three of which were methodologically poor [26]. No statistically significant findings were reported; however, positive trends for psychosocial complex interventions were observed across a range of outcomes including anxiety and depression. Study attrition rates were high (23%–61%) and intervention adherence was poor, often due to common stroke-related issues including fatigue, cognitive problems, and travel difficulties—challenges reported in other studies (e.g., [17, 27]). While arguably, MBSR is not a self-management intervention per se, it does incorporate principles of self-management including self-efficacy [16]. The course facilitates learning new skills which, with practice, can lead to mastery of those skills that can be used by individuals to self-manage symptoms of mood disorder in the longer term.
Cognizant of the size and nature of the problem, the context of the increasing relevance of (supported) self-management of chronic conditions [28, 29], and substantial evidence highlighting the potential for MBSR to be an effective, appropriate, and meaningful intervention for people affected by stroke [30, 31], a programme of work, HEADS: UP (Helping Ease Anxiety and Depression after Stroke), was conceived. The overarching aim of the programme is to ascertain the effectiveness and appropriateness of HEADS: UP, a stroke-specific adaptation of a standard MBSR course. This paper reports the processes and outcomes of the development stage in which we aimed to adapt, or tailor, a standard MBSR course to enhance its appropriateness and meaningfulness for people affected by stroke.
In this development work we drew on the Medical Research Council’s guidance for complex intervention design [32, 33]. Accordingly, in earlier preparatory work we had reviewed the stroke/MBSR evidence base [26] and identified conceptual and theoretical understandings which would inform aspects of the work, namely family systems theory [34], behaviour change theory [35, 36] and self-management [37, 38]. This preparatory work formed the underpinning to the empirical development study reported here. It should be noted that we use the term ‘adaptation’ to describe the work rather than ‘development’, as we were working to enhance the accessibility, acceptability, and meaningfulness of a pre-existing standardised intervention [39]. However, the work is dynamic, iterative, creative, open to change, and is forward looking to future evaluation and implementation, and as such meets development criteria described by O’Cathain and colleagues [33]. Protocol Registration: ClinicalTrials.gov Identifier NCT04985838.
Jagged Little Pill By Dpac
In this community-based study we aimed to adapt a standard MBSR course to enhance its appropriateness and meaningfulness for people affected by stroke. We
Stroke is a leading cause of death and disability [1]. Globally, over 80 million people live with the effects of stroke and annually new events affect 13.7 million people [1]. One in four people aged over 25 years will have a stroke in their lifetime [2]. The potential effects are many and varied, and may include physical, cognitive, and communication impairment as well as psychological disorders of anxiety, depression and psychosocial stress, the last often being referred to as ‘invisible’ effects of stroke [3]. An additional feature of stroke is recurrence; in a UK population-based cohort study (n = 6052), estimated 12% (10%–15%) at 5 years [4]. It is estimated that up to 90% of stroke events are linked to lifestyle risk factors, including psychosocial factors (stress (home and work), life events, and depression), and could be preventable if people took action to reduce risk such as making changes to lifestyle factors including stress management [5].
At a systems level it is estimated that per patient month stroke services and care provision costs USD 4850 (USA), or AUD 752 (Australia) [6]. At the individual level psychosocial wellbeing can be significantly challenged, with individuals experiencing psychological disorders, distress, and social isolation, which individually or in combination may affect long-term functioning and quality of life [7]. Stroke impacts are felt across families, friends, and wider networks who may experience a sense of burden, emotional distress and disruption of family relationships [8, 9]. Stroke experiences are different for everyone, and recovery trajectories are variable [10]. Psychological consequences of stroke are considerable and often enduring. A large-scale meta-analysis (22, 262 participants; 34 countries) found post-stroke anxiety in 18.7% (95% CI, 12.5, 24.9) with clinical interview and 24.2% (95% CI, 21.5, 26.9) using a rating scale [11]. A 5-year post-stroke meta-analysis revealed depression in 23% (95% CI, 14%–31%) of cases [12]. A large cohort study [13] found anxiety at five years in 34.4% (95% CI, 30.8%–38.1%). Mood disorder negatively impacts rehabilitation outcomes, possibly due to reduced engagement levels [14, 15] and on proactive self-management of recovery and prevention of recurrence of stroke and other cardiovascular disorders [15, 16]. A recent systematic review identified that low mood/ and depression negatively affected motivation to be active, even though being physically active is known to improve mood [17]. In a stakeholder consultation project, stroke nurses identified management of mood as a research priority [18], and people affected by stroke and health professionals, identified long-term psychological consequences of stroke as an unmet need and called for long-term, family-centred, self-management interventions [19].
Mindfulness-based interventions (MBI) are structured mindfulness courses, developed from traditional Buddhist meditation [20]. The first mindfulness-based stress reduction (MBSR) course was developed in the 1980s [21]. Forty years on, MBSR is a widely used intervention delivered to groups in clinical and non-clinical settings. It has an established protocol [22] comprising an introductory session followed by eight weekly sessions (2.5–3.5 h; 7.5 h (day retreat) in week 6). Daily practice, sustained over time, is an essential element of course engagement. A considerable body of evidence demonstrates the effectiveness of MBSR, and more broadly, MBIs in the treatment of mood disorder (predominantly anxiety and depression) in diverse clinical populations, including in long-term conditions ((95% CI, 0.35, 0.17–0.53) [23], and in a range of settings from acute clinical settings to the wider community [24].
Annual Meeting Program
In relation to stroke, research evidence regarding psychosocial complex interventions is inconclusive and often based on methodologically weak studies [25]. Lawrence et al.’s review (2013) found only four studies, three of which were methodologically poor [26]. No statistically significant findings were reported; however, positive trends for psychosocial complex interventions were observed across a range of outcomes including anxiety and depression. Study attrition rates were high (23%–61%) and intervention adherence was poor, often due to common stroke-related issues including fatigue, cognitive problems, and travel difficulties—challenges reported in other studies (e.g., [17, 27]). While arguably, MBSR is not a self-management intervention per se, it does incorporate principles of self-management including self-efficacy [16]. The course facilitates learning new skills which, with practice, can lead to mastery of those skills that can be used by individuals to self-manage symptoms of mood disorder in the longer term.
Cognizant of the size and nature of the problem, the context of the increasing relevance of (supported) self-management of chronic conditions [28, 29], and substantial evidence highlighting the potential for MBSR to be an effective, appropriate, and meaningful intervention for people affected by stroke [30, 31], a programme of work, HEADS: UP (Helping Ease Anxiety and Depression after Stroke), was conceived. The overarching aim of the programme is to ascertain the effectiveness and appropriateness of HEADS: UP, a stroke-specific adaptation of a standard MBSR course. This paper reports the processes and outcomes of the development stage in which we aimed to adapt, or tailor, a standard MBSR course to enhance its appropriateness and meaningfulness for people affected by stroke.
In this development work we drew on the Medical Research Council’s guidance for complex intervention design [32, 33]. Accordingly, in earlier preparatory work we had reviewed the stroke/MBSR evidence base [26] and identified conceptual and theoretical understandings which would inform aspects of the work, namely family systems theory [34], behaviour change theory [35, 36] and self-management [37, 38]. This preparatory work formed the underpinning to the empirical development study reported here. It should be noted that we use the term ‘adaptation’ to describe the work rather than ‘development’, as we were working to enhance the accessibility, acceptability, and meaningfulness of a pre-existing standardised intervention [39]. However, the work is dynamic, iterative, creative, open to change, and is forward looking to future evaluation and implementation, and as such meets development criteria described by O’Cathain and colleagues [33]. Protocol Registration: ClinicalTrials.gov Identifier NCT04985838.
Jagged Little Pill By Dpac
In this community-based study we aimed to adapt a standard MBSR course to enhance its appropriateness and meaningfulness for people affected by stroke. We
