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Cited by 148Childhood Cancer Survivors' Quality of LifeFamily Support in IllnessCancer survivorship and care

Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis.

Open access
Stehl, M. L., Kazak, A. E., Alderfer, M. A., Rodriguez, A., Hwang, W.-T., Pai, A. L. H., Boeving, A., Reilly, A.·2009·Journal of Pediatric Psychology
DOI 10.1093/jpepsy/jsn130PMC PMC2734126
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Abstract

OBJECTIVE: To report acceptability, feasibility, and outcome data from a randomized clinical trial (RCT) of a brief intervention for caregivers of children newly diagnosed with cancer. METHOD: Eighty-one families were randomly assigned following collection of baseline data to Intervention or Treatment as Usual (TAU). Recruitment and retention rates and progression through the protocol were tracked. Measures of state anxiety and posttraumatic stress symptoms served as outcomes. RESULTS: Difficulties enrolling participants included a high percentage of newly diagnosed families failing to meet inclusion criteria (40%) and an unexpectedly low participation rate (23%). However, movement through the protocol was generally completed in a timely manner and those completing the intervention provided positive feedback. Outcome data showed no significant differences between the arms of the RCT. CONCLUSIONS: There are many challenges inherent in conducting a RCT shortly after cancer diagnosis. Consideration of alternative research designs and optimal timing for interventions are essential next steps.

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Crossref · 10.1093/jpepsy/jsn130

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  • Engaging parents within a tertiary hospital setting has been recognized as particularly challenging.

    “Engaging parents within a tertiary hospital setting has been recognized as particularly challenging.20,23,44,46”

    From Effect of a Videoconference-Based Online Group Intervention for Traumatic Stress in Parents of Children With Life-threatening Illness (2020) · cites this paper as [23]

    The Discussion reports difficulty recruiting and retaining caregivers for an intervention at a large children’s cancer center, with a 23% participation rate. This supports the difficulty of engaging parents in this study, but the paper does not establish that parent engagement is particularly challenging across tertiary hospital settings generally. (LLM, conf=0.82)

    Experimental — accuracy not yet measured

  • Challenges with recruitment and attrition were encountered in the internet-administered psychological self-help intervention study for parents of children recently diagnosed with cancer.

    “However, challenges with recruitment and attrition were encountered, indicating that end-user involvement in the development of interventions, alongside informing study procedures to test and evaluate interventions, may be essential for intervention research within this population.13”

    From Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer (2018) · cites this paper as [13]

    The Discussion reports recruitment and retention difficulties, including a 23% participation rate and greater dropout in the intervention arm. It also recommends stakeholder input to refine interventions. However, the studied intervention was not internet-administered self-help: the intervention-procedure section describes sessions with trained interventionists, while the Discussion proposes web-based interventions as a future option. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • End-user involvement in the development of interventions, alongside informing study procedures to test and evaluate interventions, may be essential for intervention research within this population.

    “However, challenges with recruitment and attrition were encountered, indicating that end-user involvement in the development of interventions, alongside informing study procedures to test and evaluate interventions, may be essential for intervention research within this population.13”

    From Study protocol for a feasibility study of an internet-administered, guided, CBT-based, self-help intervention (ENGAGE) for parents of children previously treated for cancer (2018) · cites this paper as [13]

    The Discussion (page not provided) reports recruitment and retention difficulties and recommends stakeholder input to refine the context and delivery of interventions. It also discusses burdensome study procedures and challenges in evaluating interventions, but does not recommend end-user involvement in designing those testing and evaluation procedures. (LLM, conf=0.83)

    Experimental — accuracy not yet measured

  • Barriers to attending face-to-face programs include recurrent illness and/or ongoing disability in the child, time, childcare and financial pressures, and a preference to spend time at home following family separations.

    “Barriers to attending face-to-face programs include recurrent illness and/or ongoing disability in the child, time, childcare and financial pressures that have arisen from the child’s illness, and a preference to spend time at home following family separations associated with the child’s hospitalization [22–24].”

    From Take A Breath: Study protocol for a randomized controlled trial of an online group intervention to reduce traumatic stress in parents of children with a life threatening illness or injury (2016) · cites this paper as [22]

    Recruitment (page unavailable) identifies unwillingness to commit time as a reason for not participating. Implementation and Discussion (pages unavailable) describe childcare and scheduling accommodations and suggest that financially strained families could be excluded by the two-caregiver requirement. The paper does not identify recurrent illness or ongoing disability as attendance barriers, or report a preference to stay home after hospitalization-related family separations. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

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Research works printed but not linked: 1

  1. Weiss, D. (2004). The Impact of Events Scale - Revised. In J. P. Wilson, & T. M. Keane (Eds.), Assessing psychological trauma and PTSD (2nd ed., pp. 168-189). New York: The Guilford Press.

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Authors
Stehl, M. L., Kazak, A. E., Alderfer, M. A., Rodriguez, A., Hwang, W.-T., Pai, A. L. H., Boeving, A., & Reilly, A.
Affiliations
Children's Hospital of Philadelphia (US)
ORCID
Venue
Journal of Pediatric Psychology
Publisher
Oxford University Press (OUP)
Published
2008-12-17
Volume
34
Issue
8
Pages
803-816
ISSN
  • 0146-8693 (ISSN-L)
  • 1465-735X
DOI
10.1093/jpepsy/jsn130
PMC
PMC2734126
OpenAlex
W2170795458
Cited by
148
References
47
Citations by year
2026: 4 · 2025: 7 · 2024: 4 · 2023: 8 · 2022: 9 · 2021: 10 · 2020: 10 · 2019: 10 · 2018: 10 · 2017: 3 · 2016: 14 · 2015: 15 · 2014: 6 · 2013: 8 · 2012: 17
FWCI
3.29
Type
journal article
Language
en
Open access
Locations
  • Journal of Pediatric Psychology (publishedVersion)
  • PubMed Central (publishedVersion)
  • PubMed (publishedVersion)
Funders
  • Drexel University
  • National Cancer Institute (CA088828, R01CA088828)
Topics
  • Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Childhood Cancer Survivors' Quality of Life
  • Social Sciences › Sociology and Political Science › Family Support in Illness
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
Keywords
childhood cancer, caregiver stress, parents of children with cancer, brief psychological intervention, trial acceptability, participant recruitment and retention, state anxiety, posttraumatic stress symptoms, intervention timing
MeSH terms
Adaptation, Psychological, Adolescent, Anxiety, Child, Culture, Depression, Family Therapy, Feasibility Studies, Female, Humans, Male, Neoplasms, Parents, Personality Inventory, Psychometrics, Psychotherapy, Group, Research Design, Stress Disorders, Post-Traumatic, Randomized Controlled Trials as Topic, Patient Selection

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