Qualitative study of the acceptability and feasibility of acceptance and commitment therapy for adolescents with chronic fatigue syndrome
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Abstract
Abstract Background Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is disabling and relatively common. Although evidenced based treatments are available, at least 15% of children remain symptomatic after one year of treatment. Acceptance and Commitment Therapy (ACT) is an alternative therapy option; however, little is known about whether it is an acceptable treatment approach. Our aim was to find out if children who are still disabled by CFS/ME after 12 months of treatment would find ACT acceptable, to inform a randomised controlled trial (RCT) of ACT. Methods We recruited children (diagnosed with CFS/ME; not recovered after one year of treatment; aged 11-17 years), their parent/carer, and healthcare professionals (HCPs) from one specialist UK paediatric CFS/ME service. We conducted semi-structured interviews to explore barriers to recovery; views on current treatments; acceptability of ACT; and feasibility of using an RCT to test effectiveness. Thematic analysis was used to identify patterns in data. Results Twelve adolescents, eleven parents, and seven HCPs were interviewed. All participants thought ACT was acceptable. Participants identified reasons why ACT might be efficacious: pragmatism, acceptance and compassion are valued in chronic illness; values-focussed treatment provides motivation and direction; psychological and physical needs are addressed; normalising difficulties is a useful life-skill. Some adolescents preferred ACT to Cognitive Behavioural Therapy as it encouraged accepting (rather than challenging) thoughts. Most adolescents would consent to an RCT of ACT but a barrier to recruitment was reluctance to randomisation. All HCPs deemed ACT feasible to deliver. Some were concerned patients might confuse ‘acceptance’ with ‘giving up’ and called for clear explanations. All participants thought the timing of ACT should be individualised. Conclusions All adolescents with CFS/ME, parents, and HCPs thought ACT was acceptable, and most adolescents were willing to try ACT. An RCT needs to solve issues around randomisation and timing of the intervention. BOX What is known about the subject? Not all young people with CFS/ME recover. ACT is a possible alternative therapy for CFS/ME, which focuses on improving functioning and quality of life rather than symptom reduction. ACT is efficacious in paediatric chronic pain, and preliminary results show promising effects in adults with CFS/ME. What this study adds? ACT is an acceptable therapy for young people with CFS/ME. Participants thought the ‘pragmatic’, ‘compassionate’ and ‘values-based’ focus of ACT would be helpful. Adolescents, parents and healthcare professionals support a randomised controlled trial of ACT.
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Previous research on ACT for children and adolescents indicates that ACT might be an effective, acceptable, and meaningful treatment for depression, anxiety, and behavioral problems in this age group.
“In summary, previous research on ACT for children and adolescents indicates that ACT might be an effective, acceptable, and meaningful treatment for depression, anxiety, and behavioral problems in this age group (Kanstrup et al., 2019; Fang and Ding, 2020; Clery et al., 2021; Ma et al., 2023).”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
The Abstract Results and Discussion report that adolescents with chronic fatigue syndrome found ACT acceptable and valued its compassionate, values-focused approach. The study did not test treatment effectiveness or establish benefits for depression, anxiety, or behavioral problems; it recommends a future effectiveness trial. Page numbers were not supplied in our copy. (LLM, conf=0.87)
Experimental — accuracy not yet measuredIn all three qualitative studies, adolescents described ACT as an acceptable and feasible treatment for their mental health symptoms.
“In all three studies, adolescents described ACT as an acceptable and feasible treatment for their mental health symptoms (Kanstrup et al., 2019; Clery et al., 2021; Ma et al., 2023).”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
The Results (Thematic analysis; page unavailable) show that adolescents considered ACT acceptable and valued its attention to psychological as well as physical needs. But the study concerns adolescents with chronic fatigue syndrome, not specifically treatment of mental health symptoms, and feasibility of delivery was assessed by healthcare professionals rather than described by adolescents. (LLM, conf=0.88)
Experimental — accuracy not yet measuredThree qualitative studies have investigated how children and adolescents experience ACT.
“So far, three qualitative studies have investigated how children and adolescents experience ACT.”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
The Results describe qualitative interviews with adolescents about their views of ACT, so this paper can count as a study of young people's perspectives. But the Discussion says participants generally responded to information about ACT rather than undergoing it; the paper does not establish how adolescents experienced the treatment. As one study, it also cannot establish the stated total of three. (LLM, conf=0.86)
Experimental — accuracy not yet measuredIdentifying and formulating core values provided clarity and direction beyond symptoms and challenges and was perceived as helpful in guiding, motivating, and encouraging behavior change.
“identifying, and formulating core values provided clarity and direction beyond their symptoms and challenges and was perceived as helpful in guiding, motivating, and encouraging behavior change.”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
The Results (Thematic analysis; page unavailable) say adolescents thought focusing on values would be useful and liked committed action as a way to ‘get through’ illness. Participants also described values-focused goals as a way to move forward and find motivation. The paper reports anticipated benefits, however, not that identifying and formulating values had already provided clarity or produced behavior change. (LLM, conf=0.85)
Experimental — accuracy not yet measuredAcceptance was perceived as an appropriate approach for managing loss and grief as it provided compassion and stressed that thoughts and feelings were valid and grounded in actual events or understandable anxieties, not something they needed to change.
“Acceptance was perceived as an appropriate approach for managing loss and grief as it provided compassion and stressed that thoughts and feelings were valid and grounded in actual events or understandable anxieties, not something they needed to change (Clery et al., 2021).”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
Several of the six core processes of ACT were described as appealing and meaningful to work with.
“Several of the six core processes of ACT were described as appealing and meaningful to work with.”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
The adolescents' perception of cognitive defusion varied; some experienced it as a helpful tool for dealing with negative thoughts, while others felt that dismissing thoughts was too difficult.
“The adolescents’ perception of cognitive diffusion seemed to vary more. Some experienced it as a helpful tool for dealing with negative thoughts, while others felt that dismissing thoughts was too difficult (Clery et al., 2021).”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
Clery et al. (2021) revealed that some mental health care professionals had concerns about the word "acceptance" and how this core process could be easily misunderstood.
“This is in line with the results of Clery et al. (2021), who revealed that some mental health care professionals had concerns about the word “acceptance” and how this core process could be easily misunderstood.”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
Their main concern was that parents and patients might confuse "acceptance" with "giving up," thereby finding it hard to accept a therapy advocating for acceptance.
“Their main concern was that parents and patients might confuse “acceptance” with “giving up,” thereby finding it hard to accept a therapy advocating for acceptance.”
From “And I Can Remind Myself That I Am All Of This”: adolescents’ experiences of group-based acceptance and commitment therapy (2024) · cites this paper as Clery et al., 2021
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- Authors
- Clery, P., Starbuck, J., Laffan, A., Parslow, R. M., Linney, C., Leveret, J., & Crawley, E.
- Affiliations
- University of Bristol (GB)
- Royal United Hospital (GB)
- Corresponding author
- Clery, Philippa
- Venue
- BMJ Paediatrics Open
- Publisher
- BMJ
- Published
- 2021-10
- Volume
- 5
- Issue
- 1
- Pages
- e001139
- ISSN
- 2399-9772 (ISSN-L)
- PMC
- PMC8488698
- OpenAlex
- W3203331915
- Cited by
- 9
- References
- 32
- Citations by year
- 2025: 1 · 2024: 6 · 2023: 2
- FWCI
- 1.43
- Type
- journal article
- Language
- en
- Update notices
- correction (2024-06-03)
- Open access
- diamond
- doi.org
- Locations
- BMJ Paediatrics Open (publishedVersion, cc-by)
- medRxiv (acceptedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Explore Bristol Research (publishedVersion, cc-by)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Bristol Research (University of Bristol) (submittedVersion)
- Funders
- Wellcome (204813/Z/16/Z)
- Topics
- Health Sciences › Medicine › Psychiatry and Mental health › Fibromyalgia and Chronic Fatigue Syndrome Research
- Social Sciences › Psychology › Clinical Psychology › Mindfulness and Compassion Interventions
- Health Sciences › Medicine › Epidemiology › Traumatic Brain Injury Research
- Keywords
- acceptance and commitment therapy, chronic fatigue syndrome, treatment acceptability, treatment feasibility, adolescents, barriers to recovery, cognitive behavioral therapy, healthcare professionals' perspectives, parents' perspectives
- MeSH terms
- Adolescent, Child, Feasibility Studies, Humans, Parents, Fatigue Syndrome, Chronic, Qualitative Research, Acceptance and Commitment Therapy
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