Coproducing a library of videos to support families caring for children with gastrostomies: A mixed‐methods evaluation with family carers and clinicians

Abstract Introduction Many families now perform specialist medical procedures at home. Families need appropriate training and support to do this. The aim of this study was to evaluate a library of videos, coproduced with parents and healthcare professionals, to support and educate families caring for a child with a gastrostomy. Methods A mixed‐methods online survey evaluating the videos was completed by 43 family carers who care for children with gastrostomies and 33 healthcare professionals (community‐based nurses [n = 16], paediatricians [n = 6], dieticians [n = 6], hospital‐based nurses [n = 4], paediatric surgeon [n = 1]) from the United Kingdom. Participants watched a sample of videos, rated statements on the videos and reflected on how the videos could be best used in practice. Results Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the use of videos in practice. All healthcare professionals and 98% (n = 42) of family carers agreed they would recommend the videos to other families. Family carers found the videos empowering and easy to follow and valued the mixture of healthcare professionals and families featured in the videos. Participants gave clear recommendations for how different video topics should fit within the existing patient pathway. Discussion Families and healthcare professionals perceived the videos to be an extremely useful resource for parents, supporting them practically and emotionally. Similar coproduced educational materials are needed to support families who perform other medical procedures at home. Patient or Public Contribution Two parent representatives attended the research meetings from conception of the project and were involved in the design, conduct and dissemination of the surveys. The videos themselves were coproduced with several different families.

has been a dramatic transformation in the type of care undertaken by family caregivers at home. 1,2 In paediatrics, there are increasing numbers of children dependent on medical technologies (e.g., feeding tubes, ventilator equipment to assist breathing) who are predominantly cared for at home by their parents. 3,4 Parents caring for these children have to learn to perform specialist nursing tasks, troubleshoot problems and in some cases, acquire sophisticated monitoring and diagnostic skills. 5 For example, parents caring for children with gastrostomies (a feeding device inserted during surgery for delivering nutrition and medication directly into the stomach) are responsible for administering feeds and medications, cleaning and caring for the stoma site, performing maintenance tasks such as changing the water in a gastrostomy button and managing problems such as sore and leaking stoma sites and blocked tubes. 6 Parents may also learn to change a gastrostomy button, and must be able to recognise and manage safety-critical issues such as a dislodged gastrostomy button. This is highly skilled work.
A key challenge is how to prepare and support parents to provide this specialist care. In an analysis of incident reports for children with feeding tubes, healthcare professionals identified inadequate training for family carers as a significant cause of concern, with some children coming to a harm as a result of inadequate training for families. 7 Our research on gastrostomy care has shown that many parents do not feel adequately prepared to provide the required care when they first go home after their child's surgery and many reported feeling very anxious. In a survey we conducted, parents recommended that videos featuring families and healthcare professionals would be a useful form of training and support, in addition to face-to-face training from nurses. 8 Participants recommended topics to cover in videos and emphasized the need to provide emotional support as well as practical skill development. Understanding the experience and perspectives of parents providing this care is critical to developing appropriate and effective resources. Coproduction needs to be at the heart of developing training materials for families to ensure the resources fully meet their needs, and recognise the lived experiences and expertise of families who provide this care every day.
In this study, we report on the evaluation of a library of videos produced by our multidisciplinary team to support families caring for children with gastrostomies. The videos were developed by and feature a range of different families and healthcare professionals (e.g., hospital-and community-based children's nurses, a paediatrician and a surgeon). Successful implementation of any intervention depends on the acceptability of the intervention to both intervention deliverers (i.e., healthcare professionals who support and train parents) and recipients (parents). 9 The videos were evaluated by family carers from across the United Kingdom and a sample of healthcare professionals from the region where the videos were developed and a second region in the United Kingdom. The primary aim of the study was therefore to evaluate the acceptability of the library of videos with families and healthcare professionals who care for children with gastrostomies, including the perceived impact and benefits of the videos, and satisfaction with the content and presentation of the videos. The second aim was to explore healthcare professionals' and families' views on how to make the best use of the videos in practice.

| Development of the video library
The videos evaluated in this paper were produced by our team of researchers, healthcare professionals and parents. We designed the videos to support families from when their child is referred for a gastrostomy, through the immediate postoperative period and extending to long-term care at home. The content and topic list for the videos was informed by recommendations from a survey with 146 family carers 8 and advice from our stakeholder group, which consisted of parent representatives, children's nurses from the community, specialist nurses, paediatricians, a gastrostomy surgeon and researchers. The stakeholder group met regularly over a 3-year period.
The videos were designed to feature families caring for their children in the home environment, as recommended by our parent representatives. Our stakeholder group agreed that teaching in the videos needed to be delivered by expert parents and a multidisciplinary team of healthcare professionals recognizing the different types of expertise and support they can offer families. The aim was that parents and clinicians would copresent where possible. The videos were purposely designed to teach parents not only how to care for their child's gastrostomy and troubleshoot common problems but also to address emotional challenges and for families to learn from the experiences of other parents as well as clinicians.
Critically the videos are also intended to reassure families and reduce anxiety; the videos address common concerns and recognise that PAGE ET AL. many families are scared at the start of their journey (e.g., anxious about what life will be like when their child has a feeding tube, anxious about being seen as a failure, anxious about the judgements of others). The need to reassure families and reduce anxiety was seen as particularly important by our parent representatives.
Throughout the development process, the videos were informally evaluated by the stakeholder group to ensure the content of the videos was appropriate and consistent with best practice. At the time of evaluation, the video library consisted of 19 videos (see Figure 1): An additional video on differences in practice has since been added. The videos are available here (https://www.oxstar.ox.ac. uk/more/supporting-parents/watch-the-videos) and are searchable on YouTube.

| Development and design of the survey
We designed a mixed-methods survey to evaluate the videos, with two slightly different versions adapted for families and for healthcare professionals. Both versions had a roughly even number of qualitative and quantitative questions. The qualitative data were intended to help support, illustrate and expand the quantitative data. 10 The surveys were drafted, piloted and revised in consultation with our multidisciplinary stakeholder group. The evaluation of the videos was approved as a service evaluation by Oxford University Hospitals NHS Foundation Trust and the University of Oxford.

| Survey content
The surveys consisted of four sections: (i) information about the participants, (ii) watching a sample of videos, (iii) evaluating the content of the videos and (iv) using the videos in practice. Participants were shown the full list of video topics included in the library (see Figure 1) and asked to watch a representative sample of six videos that were preselected by the team to cover a range of different topics. We did not ask participants to watch all 19 videos in the library as this would be too time-consuming. Participants were then asked to rate statements assessing the acceptability of the videos. The questions were designed to capture different components of acceptability 9 : burden (e.g., 'the videos are an appropriate length'), experience (e.g., 'the information in the videos is easy to understand'), perceived effectiveness (e.g., 'the videos will help prepare parents to care for their child's gastrostomy') and intention ('I would recommend these videos to parents'). Participants also answered open-ended questions on what they liked about the videos, what they found most helpful, what could be improved, what they learnt from the videos and any additional topics they wanted to see covered. The final section asked to reflect on how the videos could be best used in practice. The full survey is available in File S1.

| Sampling and recruitment
For the family carer survey, the inclusion criteria were any parent or family carer who provides gastrostomy care to a child or young person at home or has a child on the waiting list for gastrostomy surgery. By family carer, we included any unpaid carer (parent, relative, friend) who actively participated in caring for a child or young person with a gastrostomy. To take part family carers needed to be at least 18 years old. Families who participated in our previous study 8 and agreed to be contacted again were invited to take part in this survey (n = 102). All of these families had at least 1 year's experience caring for their child's gastrostomy. To recruit some families who were new to gastrostomy care, the surgical lead for our region invited some families on the waiting list for gastrostomy surgery or who had recently had surgery in the region where the study took place and where the videos were developed. Our parent representatives also contacted relevant charities and leads for closed Facebook groups to help recruit families who had recently had gastrostomy surgery. Due to the COVID-19 pandemic, far fewer surgeries for gastrostomies have taken place compared to usual. All participants (family carers and professionals) received a £10 voucher for taking part.
F I G U R E 1 List of topics included in the library of videos for families caring for children with gastrostomies. A subset of these videos were watched by participants in the survey For the healthcare professionals' survey, participants needed to be healthcare professionals who support children and young people who have gastrostomies (e.g., community nurses, hospital-based children's nurses, surgical feeding teams, paediatricians, dieticians, respite and school staff, registrars and junior doctors etc.). We recruited a range of different types of healthcare professionals who support families with gastrostomies. The surgical lead for gastrostomies in the region where the resources were developed compiled a list of relevant healthcare professionals from our region (n = 58) who were invited by email to take part and n = 21 completed the survey.
To explore whether the videos would be suitable for use outside of the region in which they were developed, we then contacted a second region to be involved in the evaluation. The lead clinician for this region contacted n = 24 healthcare professionals (those invited were asked to forward the invite if there was somebody else more suitable within their organization). In total n = 12 completed the survey from this second region.

| Analysis
Participants were included if they completed the full survey de-

| Participants
There were 344 responders who viewed the first page of the family carer survey and 69 responders for the healthcare professional version. Forty-three family carers and 33 healthcare professionals completed the full survey. Table 1 provides an overview of the characteristics of the family carers and healthcare professionals who participated.

| Participants' ratings of the training videos
Both family carers and healthcare professionals perceived the video library as a valuable resource for parents and strongly supported the    Table 3 shows which topics were rated as more appropriate to watch when. Each topic consists of 1-4 individual videos (see Figure 1). Note: The table shows the number and percentage of participants who rated a particular topic.
*More than 30% but less than 60% of participants rated this time point as the most appropriate point in the family's journey to watch the videos. **More than 60% of participants rated this time point as the most appropriate point in the family's journey to watch the videos.
commented that the videos could help parents make the decision about whether to consent to gastrostomy surgery for their child: 'The videos would be helpful for parents to get an in depth understanding of the operation and will really help with gaining informed consent' [Community Children's Nurse, Region A].

| Potential dangers and risks
Participants were asked to comment on any potential dangers or risks. The majority of respondents indicated that they did not feel there were any particular dangers or risks: 'I think any positives of new information beforehand to prepare them for their journey will Other studies have recognised the need to provide more training and information to families as a means of reducing the number of avoidable visits to the emergency department for common problems, such as problems with the stoma site or gastrostomy device, 13 and as a means of safely reducing the length of stay in hospital for the surgery, which is not possible without more training and support for families before the hospital admission. 14  The sample of healthcare professionals included some from outside the region in which the videos were developed; data from these participants suggests that the information in the videos is broadly consistent with guidelines in different regions of the country but there are some small differences. Since the evaluation we have added a video to the library to explicitly discuss differences in practice with families to make them aware of some differences that exist and to advise them to discuss any differences or concerns with the professionals supporting them (e.g., whether to use cooled boiled water or sterile water in the gastrostomy balloon).
The team who developed the videos conducted the evaluation, and it was not therefore an independent evaluation. The One limitation is that we did not collect demographic data on the families so cannot tell the socioeconomic, health literacy or ethnicity of families. It is impossible to know how selection bias affected the results: We may have recruited families who are more engaged in their child's care or families who felt unprepared and sought help through Facebook groups and charities. Further research would be needed to assess the extent of families' learning from these videos (e.g., improvements in a test of knowledge), and whether there are any cost savings of the videos for NHS services (e.g., reduction in callouts to community teams for advice and assistance).

| CONCLUSIONS
The library of videos was perceived as acceptable and valuable to both family carers and healthcare professionals. They form a critical part of a training and support package, supporting families at different time points in their learning journey. The videos were intentionally designed to feature families and a range of different healthcare professionals and to provide emotional support to families as well as practical advice. A key advantage of videos over verbal information from healthcare professionals is that videos can be watched as a refresher as needed and serve as a source of support which can be accessed 24-7.
Developing the videos has been a real collaboration between researchers, families and healthcare professionals from the hospital and community. Healthcare organizations need to work with families and clinicians from across different services to codesign familycentred resources to support families who provide other types of care at home (e.g., nasogastric tube feeding, stoma care and tracheostomy care). Children and adults with serious chronic conditions are living longer, and more of the burden of care is placed on families.
The importance of high-quality training and support for families who perform medical procedures for their loved ones will only become more critical as time goes on.