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

Abstract

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.

Opt-out rates and reasons for non-participation in a single-arm feasibility trial (ENGAGE) of a guided internet-administered CBT-based intervention for parents of children treated for cancer: a nested cross-sectional survey

“…The intervention is an internet-administered, guided, LICBT-based intervention (the EJDeR intervention (intErnetbaserad sJälvhjälp för förälDrar till barn som avslutat en behandling mot canceR)) 10. Following phase I of the Medical Research Council’s complex interventions framework,35 development of EJDeR was informed by a systematic review,36 qualitative interview studies,37 38 a single-arm trial,39 participatory action research40 and a cross-sectional online survey 41. A PRP group of two mothers and two fathers of a child treated for cancer informed further refinements 10.…”

Evaluating the experiences of parents of children with cancer engaging in a mobile device-based resilience training programme: a qualitative study

“…Although research on mobile health among children with cancer and their caregivers has recently gained momentum, the development of applications to promote psychological well-being in parents of children with cancer is poorly understood [ 8 ]. One survey on the attitudes and preferences surrounding mobile health found that approximately a quarter of parents of children with cancer were not in favour of online psychological interventions, if offered [ 12 ]. The enablers and barriers to attending online psychological interventions in these parents are unclear.…”

Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer: Intervention Development and Description Study

“…Mixed methods, including a systematic review [ 6 ], interview studies [ 5 , 49 ], a single-arm trial [ 50 ], participatory action research [ 51 ], and a cross-sectional web-based survey [ 52 ] informed the initial development of EJDeR ( Figure 1 ). Subsequently, public [ 53 ] and professional involvement was adopted to improve the quality, relevance, and acceptability of the intervention.…”

“…Content has been closely developed alongside PRPs and has been informed by research identifying the experiences, distress, needs, and preferences for support of parents of children treated for cancer [5,6,[49][50][51][52]. Examples of tailoring for the population include (1) the use of case vignettes of parents using the intervention, which were informed by our previous research to enhance realism and relevancy [5,51]; (2) professional illustrations depicting parents throughout the intervention; (3) the inclusion of psychoeducation in the context of the situation of being a parent of a child treated for cancer (eg, fear of cancer reoccurrence); (4) the choice between attending the initial assessment session via telephone or videoconference [51]; and (5) the inclusion of a midintervention booster session [51].…”