Skip to main content

Advertisement

SpringerLink
Log in

The Development and Process Evaluation of PEER: A Camp-based Programme for Adolescents Impacted by Cancer

  • Original Paper
  • Published:
Journal of Child and Family Studies Aims and scope Submit manuscript

    We’re sorry, something doesn't seem to be working properly.

    Please try refreshing the page. If that doesn't work, please contact support so we can address the problem.

Abstract

Adolescents impacted by their own or a relative’s cancer diagnosis experience significant psychosocial needs. Residential programmes provide opportunities to address these, yet limited evaluation research and unclear reporting of therapeutic and theoretical underpinnings complicate efforts to understand programme effects. This paper reports the development and process evaluation of PEER, a four-day programme with psychosocial (acceptance and commitment therapy, self-compassion) and recreational components for adolescents impacted by their own or a parent/sibling’s cancer. Staff (N = 51) and adolescents (N = 148, 12–17 years) who attended a PEER programme participated in this evaluation. The evaluation of fidelity included measures of facilitators’ confidence to deliver content, adherence to the programme manual, quality of programme delivery, participants’ engagement, and overall satisfaction. The process evaluation included assessment of quality of life, distress, and process variables (psychological flexibility, mindfulness, self-compassion) at pre-programme, post-programme, and two-month follow-up, as well as qualitative feedback from participants and facilitators. Moderation analyses identified predictors of clinically significant improvement in psychosocial outcomes. The programme was delivered with good fidelity, and participants reported high satisfaction and engagement. Approximately 15–20% of participants experienced clinically-meaningful improvements in distress and quality of life; those who reported higher distress and lower baseline psychological flexibility, mindfulness and self-kindness experienced greater improvements. Qualitative feedback additionally evidenced the value of peer connection and support. The evaluation evidences PEER’s feasibility, acceptability and value for adolescents impacted by cancer, particularly those experiencing greater distress. Its success indicates the potential of the therapeutic approaches used, and for community organisations to develop interventions complementing services offered by healthcare systems.

Highlights

  • A new programme informed by Acceptance and Commitment Therapy and self-compassion was developed for adolescents impacted by cancer.

  • The programme was delivered with high fidelity, and found to be feasible and acceptable for participating adolescents.

  • 15–20% of participants reported clinically-meaningful improvements in distress and quality of life.

  • Those with higher baseline distress and lower psychological flexibility, mindfulness and self-kindness reported greater benefits.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

Notes

  1. Distress was not assessed immediately post-program as the Kessler-10 measures distress over the past 30 days and is therefore inappropriate to detect changes in distress over a four-day program.

  2. Participants also completed the brief COPE (Carver, 1997) as part of the evaluation of the PEER program, although this was not used in this study’s analyses.

References

  • Alderfer, M. A., Long, K. A., Lown, E. A., Marsland, A. L., Ostrowski, N. L., Hock, J. M., & Ewing, L. J. (2010, Aug). Psychosocial adjustment of siblings of children with cancer: a systematic review. Psycho-Oncology, 19(8), 789–805.

  • Australian Bureau of Statistics (ABS). (2012, 4/4/2012). 4817.0.55.001—Information paper: use of the Kessler Psychological Distress Scale in ABS Health Surveys, Australia, 2007–08. ABS.

  • Berbis, J., Oudin, C., Alessandrini, M., Vercasson, C., Barlogis, V., Chambost, H., Michel, G., & Auquier, P. (2015). Quality of life in minor siblings of childhood leukemia survivors, long-term after diagnosis: a LEA study. Psycho-Oncology, 24(6), 661–668.

    Article  PubMed  Google Scholar 

  • Bluth, K., & Eisenlohr-Moul, T. A. (2017). Response to a mindful self-compassion intervention in teens: a within-person association of mindfulness, self-compassion, and emotional well-being outcomes. Journal of Adolescence, 57, 108–118.

    Article  PubMed  PubMed Central  Google Scholar 

  • Bluth, K., Gaylord, S. A., Campo, R. A., Mullarkey, M. C., & Hobbs, L. (2016). Making friends with yourself: a mixed methods pilot study of a mindful self-compassion program for adolescents. Mindfulness, 7(2), 479–492.

    Article  PubMed  Google Scholar 

  • Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.

    Article  Google Scholar 

  • Campo, R. A., Bluth, K., Santacroce, S. J., Knapik, S., Tan, J., Gold, S., Philips, K., Gaylord, S., & Asher, G. N. (2017). A mindful self-compassion videoconference intervention for nationally recruited posttreatment young adult cancer survivors: feasibility, acceptability, and psychosocial outcomes. Supportive Care in Cancer, 25(6), 1759–1768.

    Article  PubMed  Google Scholar 

  • Carroll, C., Patterson, M., Wood, S., Booth, A., Rick, J., & Balain, S. (2007). A conceptual framework for implementation fidelity. Implementation Science, 2(1), 40.

    Article  PubMed  PubMed Central  Google Scholar 

  • Carver, C. S. (1997). You want to measure coping but your protocol’s too long—consider brief cope. International Journal of Behavioural Medicine, 4(1), 92–100.

    Article  Google Scholar 

  • Clark, C. D. (2018). Summer camp as therapeutic landscape. In R. Hawkins & L. A. Nabors (Eds.), Promoting prosocial behaviors in children through games and play: Making social emotional learning fun (pp. 205–225): Nova Science Publishers Inc.

  • Clarke, K., Patterson, P., McDonald, F. E. J., Wakefield, C. E., Sansom-Daly, U., & Zebrack, B. (2021). The development and process evaluation of a 3-day acceptance and commitment therapy group program for adolescent cancer survivors. Child and Youth Care. Forum, 50, 229–246. https://doi.org/10.1007/s10566-020-09571-4.

    Article  Google Scholar 

  • Ernst, M. M., & Mellon, M. W. (2016). Acceptance and Commitment Therapy (ACT) to foster resilience in pediatric chronic illness. In C. DeMichelis & M. Ferrari (Eds.), Child and adolescent resilience within medical contexts: Integrating Research and Practice (pp. 193–2007). Springer.

  • Feros, D. L., Lane, L., Ciarrochi, J., & Blackledge, J. T. (2013). Acceptance and Commitment Therapy (ACT) for improving the lives of cancer patients: a preliminary study. Psycho-Oncology, 22, 459–464.

    PubMed  Google Scholar 

  • Franklin, M., Patterson, P., Allison, K. R., Rosso-Buckton, A., & Walczak, A. (2018). An invisible patient: Healthcare professionals’ perspectives on caring for adolescents and young adults who have a sibling with cancer. European Journal of Cancer Care, 27(6), e12970.

  • Gard, T., Brach, N., Hölzel, B. K., Noggle, J. J., Conboy, L. A., & Lazar, S. W. (2012). Effects of a yoga-based intervention for young adults on quality of life and perceived stress: The potential mediating roles of mindfulness and self-compassion. The Journal of Positive Psychology, 7(3), 165–175.

    Article  Google Scholar 

  • Greco, L. A., Lambert, W., & Baer, R. A. (2008). Psychological inflexibility in childhood adolescence: development and evaluation of the Avoidance and Fusion Questionnaire for Youth. Psychological Assessment, 20, 93–102.

    Article  PubMed  Google Scholar 

  • Van der Gucht, K., Takano, K., Labarque, V., Vandenabeele, K., Nolf, N., Kuylen, S., Cosyns, V., Van Broeck, N., Kuppens, P., & Raes, F. (2017). Journal of Adolescent and young adult oncology, 6(2), 307–317.

  • Halliburton, A. E., & Cooper, L. D. (2015). Applications and adaptations of Acceptance and Commitment Therapy (ACT) for adolescents. Journal of Contextual Behavioral Science, 4(1), 1–11.

    Article  Google Scholar 

  • Hancock, L. (2011). The camp experience of siblings of pediatric cancer patients. Journal of Pediatric Oncology Nursing, 28(3), 137–142.

    Article  PubMed  Google Scholar 

  • Hayes, S. C., Luoma, J. B., Bond, F. W., Masuda, A., & Lillis, J. (2006). Acceptance and commitment therapy: model, processes and outcomes. Behaviour Research and Therapy, 44(1), 1–25. Jan.

    Article  PubMed  Google Scholar 

  • Huizinga, G. A., Visser, A., Zelders-Steyn, Y. E., Teule, J. A., Reijneveld, S. A., & Roodbol, P. F. (2011). Psychological impact of having a parent with cancer. European Journal of Cancer, 47(Suppl 3), S239–246. Sep.

    Article  PubMed  Google Scholar 

  • Hulbert-Williams, N., Storey, L., & Wilson, K. G. (2015). Psychological interventions for patients with cancer: psychological flexibility and the potential utility of acceptance and commitment therapy. European Journal of Cancer Care, 24, 15–27.

    Article  PubMed  Google Scholar 

  • Ing, V., Patterson, P., Szabo, M., & Allison, K. R. (2019). Interventions available to adolescents and young adults bereaved by familial cancer: a systematic literature review. BMJ Supportive and Palliative Care. Advance online publication. https://doi.org/10.1136/bmjspcare-2019-001959

  • Johnson, P. O., & Fay, L. F. (1950). The Johnson-Neyman technique, its theory and application. Psychometrika, 15, 349–387.

    Article  PubMed  Google Scholar 

  • Johnson, P. O., & Neyman, J. (1936). Tests of certain linear hypotheses and theri application to some educational problems. Statistical Research Memoirs, 1, 57–93.

    Google Scholar 

  • Jong, M., Lown, E. A., Schats, W., Mills, M. L., Otto, H. R., Gabrielsen, L. E., & Jong, M. C. (2021). A scoping review to map the concept, content, and outcome of wilderness programs for childhood cancer survivors. PLOS One, 16(1), e0243908 https://doi.org/10.1371/journal.pone.0243908.

    Article  PubMed  PubMed Central  Google Scholar 

  • Kabat-Zinn, J. (2003). Mindfulness-based interventions in context: past, present, and future. Clinical Psychology: Science and Practice, 10(2), 144–156.

    Google Scholar 

  • Kearney, P. J. (2018). Healing rites of passage: Salutogenesis in serious fun camps. London, UK: Routledge.

  • Kelada, L., Wakefield, C. E., Cruz Silva, M. C., & Signorelli, C. (2020). Camps for children with cancer and their families: A systematic review of psychosocial and physical impacts. Journal of Developmental & Behavioral Pediatrics, 41(2), 145–156. https://doi.org/10.1097/DBP.0000000000000728.

    Article  Google Scholar 

  • Keng, S.-L., Smoski, M. J., Robins, C. J., Ekblad, A. G., & Brantley, J. G. (2012). Mechanisms of change in mindfulness-based stress reduction: self-compassion and mindfulness as mediators of intervention outcomes. Journal of Cognitive Psychotherapy, 26(3), 270–280.

    Article  Google Scholar 

  • Kessler, R. C., Andrews, G., Colpe, L. J., Hiripi, E., Mroczek, D. K., Normand, S. L. T., Walters, E. L., & Zaslavsky, A. M. (2002). Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological Medicine, 32, 959–976.

    Article  PubMed  Google Scholar 

  • Kirchhoff, A. C., McFadden, M., Warner, E. L., & Kinney, A. Y. (2014). Quality of life and comorbidities impact education and employment for survivors of adolescent and young adult cancers. Cancer Epidemiology, Biomarkers and Prevention, 23(3), 568.

    Article  Google Scholar 

  • Kuby, A., Mclean, N., & Allen, K. (2015). Validation of the Child and Adolescent Mindfulness Measure (CAMM) with non-clinical adolescents. Mindfulness, 6(6), 1448–1455.

    Article  Google Scholar 

  • Kuhne, F., Krattenmacher, T., Bergelt, C., Ernst, J. C., Flechtner, H. H., Klitzing, K., Romer, G., & Moller, B. (2012). Parental palliative cancer: Psychosocial adjustment and health-related quality of life in adolescents participating in a German family counselling service. BMC Palliative Care, 11(1), 21.

    Article  PubMed  PubMed Central  Google Scholar 

  • Leary, M. R., Tate, E. B., Allen, A. B., Adams, C. E., & Hancock, J. (2007). Self-compassion and reactions to unpleasant self-relevant events: the implications of treating oneself kindly. Journal of Personality and Social Psychology, 92(5), 887–904.

    Article  PubMed  Google Scholar 

  • L’Estrange, K. L., Timulak, L., Kinsella, L., & D’Alton, P. (2016). Experiences of changes in self-compassion following mindfulness-based intervention with a cancer population. Mindfulness, 7(3), 734–744.

    Article  Google Scholar 

  • Lewis, P., Jordens, C. F. C., Mooney-Somers, J., Smith, K., & Kerridge, I. (2013). Growing up with cancer: Accommodating the effects of cancer into young people’s social lives. Journal of Pediatric Oncology Nursing, 30(6), 311–319.

    Article  PubMed  Google Scholar 

  • Marshall, E.-J., & Brockman, R. N. (2016). The relationships between psychological flexibility, self-compassion, and emotional well-being. Journal of Cognitive Psychotherapy, 30(1), 60–72.

    Article  PubMed  Google Scholar 

  • Martiniuk, A., Silva, M., Amylon, M., & Barr, R. (2014). Camp programs for children with cancer and their families: Review of research progress over the past decade. Pediatric Blood and Cancer, 61(5), 778–787.

    Article  PubMed  Google Scholar 

  • McDonald, F. E. J., Patterson, P., White, K. J., Butow, P., & Bell, M. L. (2015). Predictors of unmet needs and psychological distress in adolescent and young adult siblings of people diagnosed with cancer. Psycho-Oncology, 24(3), 333–340.

    Article  PubMed  Google Scholar 

  • Miles, M. B., & Huberman, A. M. (1994). Qualitative data analysis: a sourcebook (2nd ed.). Thousand Oaks, CA: Sage.

  • Millar, B., Patterson, P., & Desille, N. (2010). Emerging adulthood and cancer: How unmet needs vary with time since treatment. Palliative and Supportive Care, 8(2), 151–158.

    Article  PubMed  Google Scholar 

  • Montoya, A. K. (2019). Moderation analysis in two-instance repeated measures designs: probing methods and multiple moderator models. Behavior Research Methods, 51(1), 61–82.

    Article  PubMed  Google Scholar 

  • Neff, K. D. (2003a). The development and validation of a scale to measure self-compassion. Self and Identity, 2(3), 223–250.

    Article  Google Scholar 

  • Neff, K. D. (2003b). Self-compassion: An alternative conceptualisation of a healthy attitute toward oneself. Self and Identity, 2, 85–102.

    Article  Google Scholar 

  • Neville, A. R., Moothathamby, N., Naganathan, M., Huynh, E., & Moola, F. J. (2019). “A place to call our own”: The impact of camp experiences on the psychosocial wellbeing of children and youth affected by cancer—a narrative review. Complementary Therapies in Clinical Practice, 36, 18–28.

    Article  PubMed  Google Scholar 

  • Norman, G., Sloan, J., & Wyrwich, K. (2003). Interpretation of changes in health-related quality of life: The remarkable universality of half a standard deviation. Medical Care Research and Review, 41(5), 582–592.

    Google Scholar 

  • Packman, W., Greenhalgh, J., Chesterman, B., Shaffer, T., Fine, J., VanZutphen, K., Golan, R., & Amylon, M. D. (2005). Siblings of pediatric cancer patients: the quantitative and qualitative nature of quality of life. Journal of Psychosocial Oncology, 23(1), 87–108.

    Article  PubMed  Google Scholar 

  • Patterson, P., Koussa, M., McDonald, F., Middlemiss, W., Stevens, H., Wright, A., Albritton, K., & Heath, C. (2017, June). The impact of attachment on the effectiveness of mindfulness as an intervention for AYA siblings of cancer patients ANZCHOG Annual Scientific Meeting, Adelaide, Australia.

  • Patterson, P., McDonald, F., Tindle, R., Kelly-Dalgety, E., Zebrack, B., & Costa, D. (2018, Dec). The development and preliminary evaluation of the cancer peer support scale in adolescents living with cancer. Psycho-Oncology, 27(12), 2865–2868.

  • Patterson, P., & McDonald, F. E. J. (2015). ‘Being Mindful’: Does it help adolescents and young adults who have completed cancer treatment? Journal of Pediatric Oncology Nursing, 32(4), 189–194.

  • Patterson, P., McDonald, F. E. J., Ciarrochi, J., Hayes, L., & Tracey, D. (2017, June). Truce: The development and evaluation of an Acceptance and Commitment Therapy program for young people who have a parent with cancer. Association for Contextual Behavioural Science World Conference 15, Seville, Spain.

  • Patterson, P., McDonald, F. E. J., Ciarrochi, J., Hayes, L., Tracey, D., Konings, S., Wright, A., & Hulbert-Williams, N. (2019, June). Modifying Truce—a program for young people with a parent with cancer—for online delivery. ACBS World Conference, Dublin, Ireland.

  • Patterson, P., McDonald, F. E. J., Ciarrochi, J., Hayes, L., Tracey, D., Wakefield, C. E., & White, K. (2015). A study protocol for Truce: a pragmatic controlled trial of a seven-week acceptance and commitment therapy program for young people who have a parent with cancer. BMC Psychology, 3(1), Article 31.

    Article  Google Scholar 

  • Patterson, P., McDonald, F. E. J., White, K. J., Butow, P. N., & Walczak, A. (2017). Levels of unmet needs and distress amongst adolescents and young adults (AYAs) impacted by familial cancer. Psycho-Oncology, 26(9), 1285–1292.

    Article  PubMed  PubMed Central  Google Scholar 

  • Patterson, P., Millar, B., Desille, N., & McDonald, F. E. J. (2012). The unmet needs of emerging adults with a cancer diagnosis: a qualitative study. Cancer Nursing, 35(3), E32–E40.

    Article  PubMed  Google Scholar 

  • Pinto-Gouveia, J., Duarte, C., Matos, M., & Fráguas, S. (2014). The protective role of self-compassion in relation to psychopathology symptoms and quality of life in chronic and in cancer patients. Clinical Psychology and Psychotherapy, 21, 311–323.

    Article  PubMed  Google Scholar 

  • Przezdziecki, A., & Sherman, K. A. (2016). Modifying affective and cognitive responses regarding body image difficulties in breast cancer survivors using a self-compassion-based writing intervention. Mindfulness, 7(5), 1142–1155.

    Article  Google Scholar 

  • Renshaw, T. L. (2017). Screening for psychological inflexibility: Initial validation of the Avoidance and Fusion Questionnaire for Youth as a school mental health screener. Journal of Psychoeducational Assessment, 35(5), 482–493.

    Article  Google Scholar 

  • Rodgers, R. F., Donovan, E., Cousineau, T., Yates, K., McGowan, K., Cook, E., Lowy, A. S., & Franko, D. L. (2018). BodiMojo: Efficacy of a mobile-based intervention in improving body image and self-compassion among adolescents. Journal of Youth and Adolescence, 47, 1363–1372.

    Article  PubMed  Google Scholar 

  • Ruiz, F. J. (2012). Acceptance and commitment therapy versus traditional cognitive behavioral therapy: a systematic review and meta-analysis of current empirical evidence. International Journal of Psychology and Psychological Therapy, 12(2), 333–367.

    Google Scholar 

  • Seitz, D. C. M., Besier, T., Debatin, K.-M., Grabow, D., Dieluweit, U., Hinz, A., Kaatsch, P., & Goldbeck, L. (2010). Posttraumatic stress, depression and anxiety among adult long-term survivors of cancer in adolescence. European Journal of Cancer, 46, 1596–1606.

    Article  PubMed  Google Scholar 

  • Swain, J., Hancock, K., Dixon, A., & Bowman, J. (2015). Acceptance and commitment therapy for children: a systematic review of intervention studies. Journal of Contextual Behavioral Science, 4, 73–85.

    Article  Google Scholar 

  • Wu, Y. P., McPhail, J., Mooney, R., Martiniuk, A., & Amylon, M. D. (2016). A multisite evaluation of summer camps for children with cancer and their siblings. Journal of Psychosocial Oncology, 34(6), 449–459. https://doi.org/10.1080/07347332.2016.1217963.

    Article  PubMed  PubMed Central  Google Scholar 

  • Wu, Y. P., Prout, K., Roberts, M. C., Parikshak, S., & Amylon, M. D. (2011). Assessing experiences of children who attended a camp for children with cancer and their siblings: a preliminary study. Child & Youth Care Forum, 40, 121.

    Article  Google Scholar 

  • Zabelina, D., & Robinson, M. (2010). Don’t be so hard on yourself: self-compassion facilitates creative originality among self-judgmental individuals. Creativity Research Journal, 22(3), 288–293.

    Article  Google Scholar 

  • Zoogman, S., Goldberg, S. B., Hoyt, W. T., & Miller, L. (2015). Mindfulness interventions with youth: a meta-analysis. Mindfulness, 6(2), 290–302.

    Article  Google Scholar 

Download references

Acknowledgements

The authors thank Helen Bibby for her support with the statistical analysis of quantitative data.

Author contributions

PP, FM and EKD contributed to the development of the PEER programme and the evaluation design. AL and KA analysed the data, aided by HB and supervised by the other authors, and drafted the manuscript. KA revised the manuscript, in conjunction with PP and FM. All authors approved the final manuscript.

Funding

Canteen Australia is a registered charity that receives funding from a variety of government and individual sources. No specific finding was provided for this study.

Author information

Authors and Affiliations

  1. Canteen Australia, PO Box 3821, Sydney, NSW, 2001, Australia

    Pandora Patterson, Fiona E. J. McDonald, Elizabeth Kelly-Dalgety, Aileen Luo & Kimberley R. Allison

  2. Cancer Nursing Research Unit, The University of Sydney, PO Box M30, Missenden Road, Sydney, NSW, 2050, Australia

    Pandora Patterson & Fiona E. J. McDonald

Authors
  1. Pandora Patterson
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Fiona E. J. McDonald
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Elizabeth Kelly-Dalgety
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Aileen Luo
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kimberley R. Allison
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Fiona E. J. McDonald.

Ethics declarations

Conflict of Interest

All authors are affiliated with Canteen Australia, which owns the intellectual property rights to the program described in this paper, including any potential financial benefits that may result from future program dissemination.

Ethics Approval

This study was conducted in accordance with the ethical standards laid out in the 1964 Declaration of Helsinki (and subsequent amendments). Ethical approval for was granted by the University of Sydney Human Research Ethics Committee (2017/104).

Informed Consent

Written informed consent was obtained from facilitators, participants, and participants’ parents prior to the programme.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Patterson, P., McDonald, F.E.J., Kelly-Dalgety, E. et al. The Development and Process Evaluation of PEER: A Camp-based Programme for Adolescents Impacted by Cancer. J Child Fam Stud 30, 2627–2640 (2021). https://doi.org/10.1007/s10826-021-02061-8

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10826-021-02061-8

Keywords

Search

Navigation