Parental empowerment in paediatric rehabilitation: Exploring the role of a digital tool to help parents prepare for consultation with a physician

Abstract

Background: To explore experiences of parents of children with disabilities using the WWW, roadmap, a tool to support them in exploring needs, finding information, and asking questions of professionals and to explore differences between parents who had used the WWW-roadmap to prepare for consultation with their rehabilitation physician and parents who had not. Methods:In a sequential cohort study, we included 128 parents; 54 used the WWW-roadmap prior to consultation and 74 received care-as-usual. Both groups completed questionnaires after consultation, assessing empowerment, self-efficacy, parent and physician satisfaction, family centredness of care, and experiences using the tool. Additionally, 13 parents were interviewed.Results: Parents who used the WWW-roadmap looked up more information on the Internet. No other differences between parents and physicians were found. In the interviews, parents said that the WWW-roadmap was a useful tool for looking up information, exploring and asking questions, and maintaining a comprehensive picture.Conclusion: Using the WWW-roadmap prior to consultation did not improve selfefficacy, satisfaction, or family centredness of care. Findings suggest positive experiences regarding factors determining empowerment, creating conditions for a more equal parent-physician relationship.The WWW-roadmap is useful for parents to explore their needs and find information, but more is needed to support empowerment in consultations.---

Parents and carers’ experiences of seeking health information and support online for long-term physical childhood conditions: a systematic review and thematic synthesis of qualitative research

“…The database searches resulted in 2981 records after excluding duplicates. A total of 23 20–42 studies met all inclusion criteria and were included for thematic synthesis ( figure 1 ).…”

“…Parents’ perceived needs for information and support also appeared to influence whether and how they searched for information and support online. 20–22 25–28 32–42 This involved the present stage and severity of their child’s condition, such as a recent diagnosis or a change in symptoms, and an unsatisfying recent medical consultation. ‘Five minutes after we got the diagnosis… we got on the computer.…”

“…Finally, parents also expressed past positive experiences with the online world, and how these often encouraged continuous use. 20 21 23 26–28 30 34–42 Experiences included the internet’s convenient and accessible nature for obtaining advice any time of the day, through a variety of mediums, for exploring sensitive topics and within the protection of anonymity and general successes of obtaining desired information. ‘You know when you post even though it’s like 5:00 in the morning, you’ve got other people that are also awake and even though it is 5:00 in the morning, they respond as well within a timely manner.’ 28 (Gastro-oesophageal reflux disease, interview and online forum study)…”

“…Parents across nearly all papers emphasised feeling informed through accessing and using information and support obtained online. 20–26 28 29 31 32 35–42 The sense of feeling better informed was reported to derive from parents’ development of condition-related knowledge including information about diagnosis, prognosis, triggers and treatments. Parents often reported that their increase in medical knowledge helped them to feel in more control of managing their children’s condition and to cope with stress and during uncertain times such as changes in symptoms and treatments.…”

“…Some parents reported that prior unsatisfactory experiences of seeking information and support online had discouraged them from using online resources. 20 21 24 26–28 30 31 33–35 37 38 40–42 Previous experiences included not being able to find their desired information and support, being overwhelmed by the volume of content online, feeling that the internet does not replace real people and a lack of digital literacy skills and experience. ‘I choose not to (go online) because there are so many diverse opinions out there.…”