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A systematic review of psychological interventions for adolescents and young adults living with chronic illness
Abstract
OBJECTIVE: There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. METHODS: Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. RESULTS: Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. CONCLUSIONS: Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.
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“Our inclusion of an attention control (the peer-support group) was novel and aligned with recent calls in the field [81].”
From Providing psychological support to parents of childhood cancer survivors: ‘cascade’ intervention trial results and lessons for the future (2021) · cites this paper as [81]
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“However a systematic review on interventions to improve psychological adaptation to chronic disease by adolescents concluded that the efficiency of peer support groups requires more research; in particular how to achieve greater reach and adoption using novel information and communication technologies [16].”
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“A previous systematic review suggested that structured coping skills were effective in improving AYAs' psychological and quality of life outcomes.(43) Supporting AYAs to develop adaptive coping and problem‐solving skills around challenges to their imagined future goals may form part of future educational/vocational in…”
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“Although research suggests that teaching AYAs CBTbased coping skills is likely to reduce their post-cancer distress [29], it is possible that some participants will experience increased short-term distress.”
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“Between 1988 and 2015, only 12 controlled intervention studies targeting AYA were reported, and of these, only 7 were guided by an explicit theoretical framework.(9,10) In addition to the unmet needs of AYA with cancer, there are few empirically derived and tested models to guide research for this population.”
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“Parents and caregivers play an important role in assisting AYAs to negotiate the disruption caused by cancer [121,122], and their inclusion in skills-based programs appears to enhance AYAs’ own psychological outcomes [19].”
BackgroundInfluentialSelf-citationTailored patient therapeutic educational interventions: A patient‐centred communication model
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“The importance of social workers or psychologists is also highlighted.(22,23) For individualization, professionals should have precise and up‐to‐date medical knowledge of the illness and high communication skills reinforced by training courses.”
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“Including additional sessions can increase intervention efficacy [43].”
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“The YAs may also benefit from psychological interventions that promote awareness of coping styles and increased coping skills including strategies for problem solving and communication.(58) Coping skills for emotional distress are often successfully addressed with principles from cognitive behavioral therapy including…”
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“Programs and services that offer opportunities for AYAs to tell their stories and share their challenges, struggles, and successes with others have already proven to be powerful interventions that promote the quality of AYAs lives.(31) These opportunities, coming in the form of oncology camps or retreats and social me…”
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“11,13 If the intervention involved children or older adults, studies could be included in the review if the AYA data were presented separately.”
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“Peer support groups generally aim to provide emotional and informational support to people with a chronic illness in order to promote illness self-management, health, and well-being (Dennis 2003; Sansom-Daly et al. 2012).”
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McCauley, E. (2017) · American Journal of Medical Genetics Part C Seminars in Medical Genetics · doi:10.1002/ajmg.c.31563 · Cited by 35
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BackgroundCamp experiences in the lives of adolescents with serious illnesses
Gillard, A., & Allsop, J. (2016) · Children and Youth Services Review · doi:10.1016/j.childyouth.2016.04.001 · Cited by 31
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Wakefield, C. E., Sansom-Daly, U. M., McGill, B. C., Hetherington, K., Ellis, S. J., Robertson, E. G., Donoghoe, M. W., McCarthy, M., Kelada, L., Girgis, A., et al. (2021) · Cancers · doi:10.3390/cancers13225597 · Cited by 28
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BackgroundResultInfluentialImpact of warm mindfulness on emotion regulation: a randomized controlled effectiveness trial
Gawande, R., Smith, L., Comeau, A., Creedon, T. B., Wilson, C. L., Griswold, T., Cook, B. L., Loucks, E. B., & Schuman-Olivier, Z. (2023) · Health Psychology · doi:10.1037/hea0001303 · Cited by 24
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A Mindful Approach to Chronic Illness
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“Psychosocial interventions addressing family and peer relationships among AYAs with chronic illnesses, although less common than interventions addressing education or individual coping, tend to be effective (Sansom-Daly et al., 2012; Zebrack and Isaacson, 2012).”
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“8 Therefore, a trans-diagnostic model and intervention that identifies and modifies a set of core psychological processes that underpin multiple forms of emotional distress may be most suitable for AYAC survivors.”
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Addressing Mental Health in Pediatric Rheumatology
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Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis
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Nursing young people with cancer: What is “different” about it?
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“Having cancer as an AYA has implications for their growth and development and adjustment in their future life [37] and frontline nurses can help to make this a positive and supported experience.”
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“Our results support previous findings that psychosocial wellbeing is particularly thwarted by threats to a child’s sense of normality in terms of their identity, acceptance by others, participation with their peers, and limitations on future opportunities [5, 15, 19].”
BackgroundResultA new Australian online and phone mental health support service for young people living with cancer
Patterson, P., McDonald, F. E. J., & Orchard, P. (2014) · Australasian Psychiatry · doi:10.1177/1039856213519144 · Cited by 18
Adolescent and young adult neuro-oncology: a comprehensive review
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Relationships Between Adolescents with Cancer and Healthy Peers: A Qualitative Study
Fladeboe, K., Walker, A. J., Rosenberg, A. R., & Katz, L. F. (2020) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2020.0133 · Cited by 19
Devine, K. A., Monaghan, M. C., & Schwartz, L. A. (2017) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsx101 · Cited by 17
Psychosocial Issues in Adolescent and Young Adult Patients and Survivors
Penn, A., Kuperberg, A., & Zebrack, B. (2016) · Pediatric oncology · doi:10.1007/978-3-319-33679-4_23 · Cited by 16
McDonnell, G. A., Pope, A. W., & Ford, J. S. (2020) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2020.0111 · Cited by 18
“AYAs with cancer and AYA cancer survivors may also benefit from targeted interventions to teach problem solving and develop skills relevant to managing cancer-related concerns.(53) A recent multicenter randomized controlled trial is assessing the efficacy and feasibility of an online cognitive behavioral group interve…”
BackgroundMay, E., McGill, B. C., Robertson, E. G., Anazodo, A. C., Wakefield, C. E., & Sansom‐Daly, U. M. (2017) · Journal of Adolescent and Young Adult Oncology · doi:10.1089/jayao.2017.0015 · Cited by 16
“16 This lack of interventions extends to families, who show a number of unmet needs in the survivorship period.”
Self-citationPromoting Emotional Well-being in Hospitalized Children and Adolescents With Virtual Reality
Flujas-Contreras, J. M., Ruiz-Castañeda, D., & Becerra, I. G. (2019) · CIN Computers Informatics Nursing · doi:10.1097/cin.0000000000000586 · Cited by 16
Chadi, N., Kaufman, M. E., Weisbaum, E., Malboeuf‐Hurtubise, C., Kohut, S. A., Viner, C., Locke, J. J., & Vo, D. X. (2017) · JMIR Research Protocols · doi:10.2196/resprot.7700 · Cited by 15
“For example, a recent systematic review of psychological interventions for adolescents and young adults living with chronic illnesses emphasizes the importance of conducting high-quality randomized studies exploring new ways to support young people with chronic health conditions [30].”
BackgroundNgai, S. S., Cheung, C., Ng, Y., Shang, L., Tang, H.-Y., Ngai, H.-L., & Wong, K. H.-C. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph18063061 · Cited by 16
“Young PCHC face many personal challenges in daily life, including demanding treatment regiments, treatment side effects, and in some cases, the prospect of a shortened future [4].”
BackgroundEmpowering Young Persons During the Transition to Adulthood
Mora, M. A., Sparud‐Lundin, C., Bratt, E., & Moons, P. (2019) · Springer eBooks · doi:10.1007/978-3-030-23384-6_2 · Cited by 14
Ahn, H. S., Lee, M. H., Broadbent, E., & MacDonald, B. A. (2017) · IEEE International Conference on Robotic Computing (IRC) · doi:10.1109/irc.2017.48 · Cited by 14
“Some research has already been conducted with Nao robot in children with diabetes in a Wizard of Oz scenario [47], with promising results.”
O‘Sullivan, G., O’Higgins, S., Caes, L., Saetes, S., McGuire, B. E., & Stinson, J. (2018) · Pediatric Rheumatology · doi:10.1186/s12969-018-0287-0 · Cited by 13
Donisi, V., Poli, S., Mazzi, M. A., Gobbin, F., Schena, F. F., Piccolo, L. D., Bigardi, V., Gajofatto, A., & Rimondini, M. (2022) · Frontiers in Psychology · doi:10.3389/fpsyg.2022.1042234 · Cited by 12
McKelvey, E. R., Zelikovksy, N., & Psihogios, A. M. (2023) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsad066 · Cited by 12
Pérez, A. B., & Verdet, H. M. (2015) · Psicooncología · doi:10.5209/rev_psic.2015.v12.n1.48909 · Cited by 10
“En consonancia con esto, una revisión reciente de las intervenciones con adolescentes con enfermedades crónicas, (incluyendo cáncer) basadas en competencias altamente eficaces en el tratamiento de problemas emocionales o conductuales, muestran que producen un efecto de mediano a grande(71).”
BackgroundGender influences on the health of adolescents with sickle cell disease
Barton‐Gooden, A., Grindley, M., Knight‐Madden, J., & Asnani, M. (2018) · Psychology Health & Medicine · doi:10.1080/13548506.2018.1533985 · Cited by 10
Youth with chronic health problems: how do they fare in main-stream mentoring programs?
Lipman, E. L., DeWit, D. J., DuBois, D. L., Larose, S., & Erdem, G. (2018) · BMC Public Health · doi:10.1186/s12889-017-5003-3 · Cited by 9
“Samson-Daly and colleagues reviewed psychological interventions for individuals with chronic illness [13].”
BackgroundAmbrosio, L., Pérez-Manchón, D., Carrascal, G. C., Fuentes-Ramírez, A., Caparros, N., Armentia, M. I. R. D. O., Timonet-Andreu, E. M., Sánchez, M. V. N., & Rodríguez‐Blázquez, C. (2021) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph18020572 · Cited by 9
“Although results emerged in this study should be taken with caution, the LW-CI-HF scale could be used by cardiovascular healthcare practitioners as a complement to conventional generic health-related quality of life measures, as a basis for evaluation where interventions may affect both health and social care outcomes…”
COPING IN YOUNG PEOPLE WITH CHRONIC KIDNEY DISEASE (CKD)
Muhammad, S. N., Milford, D. V., Carson, A., Young, H., & Martin, C. R. (2015) · Journal of Renal Care · doi:10.1111/jorc.12131 · Cited by 8
Staal, D. P., Vlooswijk, C. C. P., Mols, F., Lidington, E. K., van der Graaf, W. T. A., Bijlsma, R. M., & Husson, O. (2020) · Supportive Care in Cancer · doi:10.1007/s00520-020-05502-0 · Cited by 8
“Developmentally appropriate psychological interventions, for example skill-based interventions with a focus on adaptive coping styles, could be offered to help forming realistic attributions and potentially reduce distress [38, 39].”
BackgroundÇağlar, E. Ç., Ceylan, L., Ermiş, S. A., Çamiçi, F., Eliöz, M., Uzun, R. N., Çiçek, G., Kusan, M., Bayraktar, M. T., Şahin, F. N., et al. (2025) · Frontiers in Psychology · doi:10.3389/fpsyg.2025.1545048 · Cited by 7
Peer Support for Young People with Chronic Conditions
Kirk, S. A., & Milnes, L. J. (2021) · Springer eBooks · doi:10.1007/978-3-030-64293-8_7 · Cited by 6
Dattilo, T. M., Fisher, R. S., Roberts, C. M., Sharkey, C. M., Clawson, A. H., Chaney, J. M., & Mullins, L. L. (2022) · Journal of Pediatric Health Care · doi:10.1016/j.pedhc.2022.07.008 · Cited by 7
Loyal, D., Ricci, L., Villegente, J., Ayav, C., Kivits, J., & Rat, A. (2021) · Chronic Illness · doi:10.1177/17423953211058411 · Cited by 8
“Studies including parents might lead to more frequent significant results regarding TPE efficacy in adolescents and young adults.(50) Patients who are accompanied by loved ones during TPE sessions might benefit from more knowledge acquisition and real-life application.”
ResultTezol, Ö., Karahan, F., & Ünal, S. (2021) · Turkish Archives of Pediatrics · doi:10.5152/turkarchpediatr.2021.20270 · Cited by 6
“4 Total difficulties score 11 (2-23) 10 (2-18) 9 (1-30) .”
Friendship in Adolescents and Young Adults With Experience of Cancer
Evered, J. A. (2018) · Cancer Nursing · doi:10.1097/ncc.0000000000000686 · Cited by 6
“From this developmental perspective, distress in adolescents and young adults with cancer stems from the inability to continue achieving developmental tasks.(38) Helping youth with cancer stay on track is thus thought to improve distress.”
BackgroundCOX, E. D., Palta, M., Lasarev, M. R., Binder, A. T., Connolly, J. R., & Flynn, K. E. (2021) · Quality of Life Research · doi:10.1007/s11136-020-02737-6 · Cited by 6
Li, J., Li, Y., Mei, X., He, H. G., Yu, L., Ho, G. W. K., & Chan, E. A. (2024) · International Journal of Mental Health Nursing · doi:10.1111/inm.13391 · Cited by 7
Psychosocial considerations in pediatric autoimmune liver disease
Wellen, B. C. M., Lin, H. C., & Stellway, J. E. (2022) · Clinical Liver Disease · doi:10.1002/cld.1238 · Cited by 5
Metadata
- Authors
- Sansom-Daly, U. M., Peate, M., Wakefield, C. E., Bryant, R. A., & Cohn, R. J.
- Affiliations
- UNSW Sydney (AU)
- Sydney Children's Hospital (AU)
- Venue
- Health Psychology
- Published
- 2012
- Volume
- 31
- Issue
- 3
- Pages
- 380-393
- ISSN
- 0278-6133 (ISSN-L)
- 1930-7810
- OpenAlex
- W1979918262
- Cited by
- 157
- References
- 73
- Citations by year
- 2026: 5 · 2025: 12 · 2024: 3 · 2023: 9 · 2022: 7 · 2021: 20 · 2020: 8 · 2019: 11 · 2018: 17 · 2017: 9 · 2016: 18 · 2015: 14 · 2014: 11 · 2013: 9 · 2012: 4
- FWCI
- 17.99
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Health Psychology (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Adolescent and Pediatric Healthcare
- Social Sciences › Psychology › Clinical Psychology › Family Support in Illness
- Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Diabetes Management and Education
- Keywords
- adolescents and young adults, chronic disease, psychological intervention, cancer, diabetes mellitus, juvenile idiopathic arthritis, sickle cell disease, asthma, skills-based intervention, communication skills training, coping strategies, peer support groups, educational intervention, intervention efficacy
- MeSH terms
- Adaptation, Psychological, Adolescent, Chronic Disease, Humans, Male, Parents, Patient Education as Topic, Peer Group, Young Adult
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