Development of a Self-Help Web-Based Intervention Targeting Young Cancer Patients With Sexual Problems and Fertility Distress in Collaboration With Patient Research Partners

Abstract

BackgroundThe Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial.ObjectiveThe study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs).MethodsTen former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs’ impact on the content, system, and service quality of the planned intervention.ResultsThe collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention’s content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the number of exercises and pointed out texts and pictures needing revision (eg, experienced as normative or stereotypical) to increase the persuasiveness of the program. The system quality was improved by PRPs’ feedback on design, technical malfunctions, and navigation on the website. Based on feedback about availability of professional support (technical problems and program content), the organization for support was clarified, which increased service quality. The PRPs also influenced the research project on an overall level by suggesting modifications of inclusion criteria for the RCT and by questioning the implementation plan.ConclusionsWith suggestions and continuous feedback from PRPs, it was possible to develop a Web-based intervention with persuasive design, believed to be relevant and attractive for young persons with cancer who have sexual problems or fertility distress. In the next step, the intervention will be tested in a feasibility study, followed by an RCT to test the intervention’s effectiveness in reducing sex...

Sexual and romantic challenges among young Danes diagnosed with cancer: Results from a cross‐sectional nationwide questionnaire study

“…Youth clinicians have delivered useful recommendations concerning the “2‐way taboo” that seems to surround sexual issues in the health sector . Some have even presented suggestions for intervention programmes to provide psychosexual support for AYA cancer patients and thereby prevent knowledge gaps, social, and emotional alienation and risky behaviour . Such interventions can be based upon a psychoeducational approach towards the patient and his/her eventual partner, or they can employ peer groups of AYAs.…”

Sexuality and cancer: The experience of adolescents and young adults

“…In the past 10 years, interventions to guide and educate patients on sexual health have moved from face to face counseling and workbooks to web‐based programs, though it remains unclear how these interventions become embedded in practice. There appears to be no evidence of development in education, decision‐making tools, or guidance responsive to AYA‐preferred information and communication methods.…”

Supporting the Process of Help-Seeking by Caregivers of Functionally Dependent Seniors Through eHealth: Protocol for a Multicentric Codesign (Preprint)

“…Generally, codesign include the creation of a group comprised of 8 to 12 people, who jointly develop an eHealth instrument over three to five codesign meetings, lasting between 90 minutes and a day [31][32][33][34][35][36]. Nonetheless, in the context of the present project, it is, on one hand, unrealistic to develop a tool supporting the process of help seeking behavior in merely five working sessions.…”

“…The data were obtained from: 1) notes taken by the team [38]; 2) artifacts produced by each group; and 3) notes taken after the working sessions via a meeting with the research team to share their impressions [36]. The codesign sessions and those of the advisory committee will be filmed, if necessary, to further develop certain aspects of other methods of data collection.…”