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

Woodford, Joanne; Wikman, Anna; Cernvall, Martin; Ljungman, Gustaf; Romppala, Amanda; Grönqvist, Helena; Essén, Louise von

doi:10.1136/bmjopen-2018-023708

Cited by 26 publications

(43 citation statements)

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“…Notwithstanding these limitations, this is to our knowledge the first study to examine attitudes toward clinical trials, preferences regarding study design, and willingness to receive internet-administered psychological support among parents of children previously treated for cancer. The results from this study will have considerable implications for the design of a planned feasibility study [47], such as initial study invitations being sent via postal letters by the research team, full study information being presented on Web via both text and video, and the provision of support from a psychologist.…”

Section: Discussionmentioning

confidence: 99%

“…Survey findings have further enhanced our understanding of the acceptability of internet-administered approaches for the population, alongside an appreciation of potentially acceptable study procedures and design. Results will inform the design of a feasibility study of an ICBT intervention for parents of children previously treated for cancer [47], to further examine methodological, procedural, and clinical uncertainties [25,50].…”

Section: Discussionmentioning

confidence: 99%

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Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey

Woodford¹,

Wikman²,

Einhorn³

et al. 2018

JMIR Ment Health

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BackgroundClinical trials are often challenged with issues of recruitment and retention. Little is known concerning general attitudes and preferences toward trial design and willingness to participate among parents of children treated for cancer. Furthermore, willingness to participate in internet-administered psychological interventions remains unexplored. In this study, we examined attitudes and preferences of the population regarding study procedures for a hypothetical trial of an internet-administered psychological intervention. In addition, differences in the response rate between modes of study invitation and willingness to engage in internet-administered interventions were examined.ObjectiveThe primary objective of this study was to examine attitudes and preferences toward participating in an internet-administrated psychological intervention. The secondary objective was to examine the response rates and help-seeking behavior among parents of children treated for cancer.MethodsA cross-sectional, Web-based survey was conducted with parents of children who had completed cancer treatment. This Web-based survey examined self-reported emotional distress, prior help-seeking and receipt of psychological support, past research participation, attitudes toward research, preferences concerning recruitment procedures, and attitudes toward different types of trial design.ResultsOf all the parents invited, 32.0% (112/350) completed the survey, with no difference in response rate between modes of study invitation (χ21=0.6, P=.45). The majority (80/112, 71.4%) of parents responded that they had experienced past emotional distress. Responses indicated high (56/112, 50.0%) or somewhat high trust in research (51/112, 45.5%), and the majority of parents would accept, or maybe accept, internet-administered psychological support if offered (83/112, 74.1%). In addition, responses showed a preference for postal study invitation letters (86/112, 76.8%), sent by a researcher (84/112, 75.0%) with additional study information provided on the Web via text (81/112, 72.3%) and video (66/112, 58.9%). Overall, parents responded that trials utilizing a waiting list control, active alternative treatment control, or a patient-preference design were acceptable.ConclusionsParents of children treated for cancer appear willing to participate in trials examining internet-administered psychological support. Findings of this study will inform the design of a feasibility trial examining internet-administered psychological support for the population.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey

Woodford¹,

Wikman²,

Einhorn³

et al. 2018

JMIR Ment Health

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“…The primary feasibility outcome was 60% D100 FC completion among enrolled parents. This threshold was specified a priori 49,50 and is consistent with other feasibility studies among parents of children with cancer, 51 adults with cancer, 52 and adults with dementia, 53 each of which targeted a minimum of 50% to 60% engagement with intervention components. Our target sample size was N = 30 parents, which attains a 2‐sided exact binomial 95% CI width of 37% when the observed feasibility proportion is 60% (95% CI, 41%‐77%).…”

Section: Methodsmentioning

confidence: 99%

“…Secondary ( process ) feasibility outcomes included 70% enrollment and training of eligible fellows and NPs ( frontline oncology providers) based on an estimated eligible pool of 14 (attaining a 95% CI width of 50%). The primary acceptability outcome was a threshold of 70% of parents who “agree/strongly agree” that “D100 was helpful,” as measured by the follow‐up survey 51 . Assuming that 18 of 30 parents completed the D100 FC, the 95% CI width is 45% for an observed agreement proportion of 70% (95% CI%, 44‐89%).…”

Section: Methodsmentioning

confidence: 99%

Feasibility and acceptability of the “Day 100 Talk”: An interdisciplinary communication intervention during the first six months of childhood cancer treatment

Feraco

McCarthy

Revette

et al. 2020

Cancer

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Background Communication gaps arise early in the childhood cancer trajectory and may persist. The authors conducted a pilot study of the feasibility and acceptability of a communication intervention, the Day 100 Talk (D100). D100 involves an interprofessional family conference during initial months of treatment between oncologists, psychosocial clinicians, and parents, facilitated by a 3‐part conversation tool. Methods The authors enrolled English‐speaking parents of children with nonrelapsed, nonprogressive cancer who were receiving continuity care from enrolled pediatric oncologists and psychosocial clinicians at a single site. The a priori feasibility threshold was 60% parent completion of the D100 intervention. Surveys from parents and professionals and debrief interviews with professionals assessed D100 acceptability. Results Thirty‐seven parents (77%) and 38 oncology professionals (67%) enrolled. Twenty of 33 evaluable parents (61%) participated in a D100 family conference. Most commonly, parents did not complete the D100 intervention because of scheduling difficulties related to clinical team constraints. All 17 parents who completed a post‐D100 survey agreed or strongly agreed that D100 participation was helpful. In debrief interviews, professionals identified D100 benefits, namely, stepping back to the big picture and getting on the same page, and barriers related to logistical challenges and professionals' anticipatory dread. Conclusions The D100 intervention pilot demonstrates high acceptability among parents of children with cancer. Despite meeting the prespecified feasibility threshold, findings highlight important barriers to D100 dissemination, namely, perceived burdens on professionals. Potential strategies to reduce burden may include using virtual visit platforms, incorporating D100 elements across multiple visits, or prioritizing intervention delivery to parents with the greatest need for enhanced communication.

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“…Moreover, an Australian study has shown promising results in terms of feasibility and acceptability for an online group-based psychological intervention for parents of survivors of childhood cancer [25]. We have furthermore developed an internet-administered guided, CBT-based selfhelp intervention for parents whose children have ended successful treatment, which is currently tested in terms of feasibility [26,27]. Should the intervention be demonstrated to be clinically and cost-effective (or at least cost-neutral), the same intervention development process will be used for the development of an intervention for bereaved parents.…”

Section: Psychologistsmentioning

confidence: 99%

Parents’ needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study

et al. 2019

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Introduction: Parents' needs of support following the loss of a child to cancer and whether these needs are met are not fully known. This study aimed to describe parents' needs, opportunity, and benefit of support from healthcare professionals and significant others from shortly after, up to five years after bereavement. Material and methods: Data were collected at nine months (T5, n ¼ 20), eighteen months (T6, n ¼ 37), and five years after the child's death (T7, n ¼ 38). Parents answered questions via telephone about need, opportunity, and benefit of talking to psychologists, social workers, partners, and friends. Needs were examined in relation to parent and child characteristics, including sex, age, and parent posttraumatic stress symptoms (PTSS). Results: The proportion reporting a need of support from psychologists varied from 56% and 46% at T5 to 20% and 6% at T7 (mothers and fathers, respectively). All mothers and 90% of fathers reported a need of support from social workers at T5. At T7, the corresponding percentages were 30% and 6%. More mothers than fathers reported a need of support from friends at T7 (p ¼ .001). The proportion reporting a need of support from psychologists, social workers, and friends decreased over time (all p .050). Parents reporting a higher level of PTSS were more likely to report a need of support from social workers at T6 (p ¼ .040) and from psychologists (p ¼ .011) and social workers (p ¼ .012) at T7. Opportunities for support from healthcare professionals varied, most reported need of and opportunity for support from significant others. Almost all reported benefit from received support. Conclusion: Bereaved parents need and benefit of support from healthcare professionals and significant others. Results show a need for improved access to psychosocial services, even at five years post bereavement. Large-scale studies are needed to better understand the associations between parent and child characteristics and support needs.

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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

Cited by 26 publications

References 50 publications

Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey

Attitudes and Preferences Toward a Hypothetical Trial of an Internet-Administered Psychological Intervention for Parents of Children Treated for Cancer: Web-Based Survey

Feasibility and acceptability of the “Day 100 Talk”: An interdisciplinary communication intervention during the first six months of childhood cancer treatment

Parents’ needs of support following the loss of a child to cancer: a Swedish, prospective, longitudinal, multi-centre study

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