Family centred cancer care: Plan, develop and feasibility test an interactive, self-guided digital intervention to support families to communicate with, and involve dependent children when impacted by parental cancer

Background

​One-in-five people living with cancer are parenting children under eighteen (Weaver et al., 2010). Parents are often unsure how to communicate with, and involve the children in the parental cancer experience (Inhesten et al., 2021; Semple and McCance, 2010); necessitating a need for instructive support and guidance. Digital health is impacting the care experience, with over half of cancer patients exploring apps and websites for information about their illness (Hanai et al., 2020). With the growing emergence of communication technologies, there is a need to develop a digital intervention for parents to access as a self-guided resource, accessible at the point of need, and on demand.

​Aim

​Design and feasibility test an interactive, self-guided digital intervention to support families impacted by parental cancer.

​Objectives:

1. ​To identify the challenges and needs of parents and children when a parent has a cancer diagnosis within the literature.

1. ​To co-design an interactive, self-guided digital intervention for families impacted by parental cancer, to promote open family-centred communication and help navigate family life.

1. ​To investigate the acceptability and feasibility of the interactive, self-guided digital intervention, through an iterative process of testing and refinement.

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​Methods

​The digital intervention will be informed by the ‘Person-based Approach’ (Yardley et al., 2015), involving service-users, researchers and clinicians, as outlined by the eight-step process below.

​(1) establish co-design team, to include parents living with cancer who have dependent children and experts from relevant disciplines; (2) systematic review of literature on challenges and needs of parents and children impacted by parental cancer; (3) review of existing parental resources; (4) establish a theoretical framework and develop logic model; (5) design and develop a self-guided prototype; (6) conduct interviews with adults and children as part of user-testing; (7) refinement of digital intervention; (8) develop final intervention and pilot test.