Imagine receiving an appointment letter for general surgery (an internal operation requiring general anaesthetic). How would you prepare yourself? What if you had to prepare a child instead? We wanted to understand more about parents’ experiences during their child’s surgical journey, so keep reading to see what we found.
Preparation and Support
Regardless of whether you are a parent or not, we can all appreciate the challenging role parents have to take when supporting their children, especially through experiences like surgery.
Children’s surgery is not a walk in the park… it’s a marathon that requires preparation and support. Various strategies have been designed by researchers to help prepare and support families throughout a child’s surgical journey:
- educational surgery information 📖
- hospital tours 🏥
- games for distraction 🧩
- relaxation exercises 💆
So, mission accomplished? Not yet. Not all hospitals have the resources to provide such strategies. Thus, many families do not receive any preparation or support until the day of their surgery. So, what can we do?
Health apps
The development of health apps (e.g. the NHS app) have revolutionised the ways in which families can be supported. Health apps can support families in a way that is more accessible (e.g. support anytime and anywhere), is cost-effective, and reduces the demands on healthcare workers.
Introducing Little Journey
Little Journey (LJ) is a cost-effective, safe and regulated health app, co-designed with families, to prepare and support families throughout their surgical journey. Parents can download the app for free and use a range of age-appropriate scientifically supported strategies for their child and themselves:
- parent information about surgery
- virtual hospital tours
- hospital-related games for distraction
- relaxation exercises
Watch this video to learn more about what LJ does.
The LJ app is already used in over 50 UK NHS organisations. But how can we know if LJ is helping families? We can ask them! This simple action of asking, helps us to understand families’ needs and how to support them. This practice lies at the heart of the NHS person-centred healthcare that aims to meet the personalised needs of each patient.
With 469 app reviews rating LJ at 4.7/5 stars – do we need to talk to more parents? While short written responses, like app reviews, have been used in previous research, they do not provide detailed insights throughout children’s surgical journeys. So to gain a deeper understanding… YES we still need to talk to parents about their experiences to understand what challenges families face and how the LJ app can help families navigate them.
What did we do?
I spoke with eight mothers in one-to-one interviews to hear about their experiences. Within an hour-long interview, mothers walked me through their children’s surgical journey, including the challenges they faced, the choices they made and the lessons they learnt. These interviews were analysed using thematic analysis. As the name suggests, this analysis identifies themes (common patterns) across the experiences of different individuals. This helps researchers to gain a deeper understanding of certain experiences.
What did we find?
I identified three themes relating to the challenges parents face, each with two subthemes relating to how parents navigated that challenge (see below).
Although each theme represents an important challenge, I will be focusing on the theme Negotiating Suitable Support, which highlights the importance of person-centred healthcare.
Negotiating suitable support
There was a wide variety of support given to each family: “websites to look at” (Participant 1), “a leaflet… explaining what the procedure was” (Participant 4), “a tour of the hospital” (Participant 7). However, many mothers felt unsupported.
We can see from these mother’s experiences that there was a real challenge of negotiating with hospitals to receive suitable support.
Sources of information
Many mothers explained that healthcare workers, as a source of information, are “not very accessible” (Participant 3) and expressed that “trying to get hold of the secretary to ask some questions is nonexistent” (Participant 6). So, to manage this, mothers established alternative, reliable sources of information.
Importantly, mothers recognised LJ as a reliable source of information. This meant families were able to use LJ to obtain the same trusted information that hospitals or healthcare workers would provide, but in a more accessible way through the app.
Can you answer this question?
If you can’t, what source can?
Comment your answer and your source of information.
Importance of personalisation
Mothers emphasised that “every child is different” (Participant 7). Such sentiments revealed that, when supporting families, we cannot use a one-size-fits-all approach. Families require personalised support that can address their families’ needs. Interestingly, mothers accredited LJ for its ability to provide personalised support in a variety of ways.
Mothers expressed that LJ can meet the needs of children and parents, ensuring that both are recognised and accounted for within a child’s surgical experience.
Two mothers with autistic children described how using apps like LJ can be beneficial for the specialised needs of certain children.
Ultimately, mothers highlighted LJ’s ability to be used flexibly in order to meet their families’ personalised needs – no family used the LJ app in the same way. This is in line with person-centred healthcare, which gives patients flexibility and choice in their care.
Conclusion
Our findings show that a Little (Journey) can go a long way in helping families navigate surgical challenges. However, is LJ perfect? No. Should we expect it to be? Also no. Health apps, like healthcare in general, require continual development. Collection and use of patient feedback to identify areas of improvement is crucial in person-centred healthcare. LJ has already been co-designed with families, and most importantly, LJ does not intend to stop. LJ’s efforts to continually involve families to help improve their app is highly commendable.
Take home messages
- Many safe and regulated health apps have been developed like LJ. Why not take a look and see if there are any that could benefit you?
- Providing feedback to healthcare services and sharing experiences with researchers is always helpful. Let’s help improve healthcare services for everyone!
Word count: 998
References
All character illustrations are credit to Little Journey: https://www.littlejourney.health/
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Brown, T. M. H., & Bewick, M. (2022). Digital health education: The need for a digitally ready workforce. Archives of Disease in Childhood – Education and Practice. https://doi.org/10.1136/archdischild-2021-322022
Grocott, M. P. W., Plumb, J. O. M., Edwards, M., Fecher-Jones, I., & Levett, D. Z. H. (2017). Re-designing the pathway to surgery: Better care and added value. Perioperative Medicine, 6(1), 9. https://doi.org/10.1186/s13741-017-0065-4
Kain, Z. N., Caldwell-Andrews, A. A., Mayes, L. C., Weinberg, M. E., Wang, S.-M., MacLaren, J. E., & Blount, R. L. (2007). Family-centered Preparation for Surgery Improves Perioperative Outcomes in Children: A Randomized Controlled Trial. Anesthesiology, 106(1), 65–74. https://doi.org/10.1097/00000542-200701000-00013
Kennedy, M., & Howlin, F. (2022). Preparation of children for elective surgery and hospitalisation: A parental perspective. Journal of Child Health Care, 26(4), 568–580. https://doi.org/10.1177/13674935211032804
Rantala, A., Jansson, M. M., Helve, O., Lahdenne, P., Pikkarainen, M., & Pölkki, T. (2020). Parental Experiences of the Pediatric Day Surgery Pathway and the Needs for a Digital Gaming Solution: Qualitative Study. JMIR Medical Informatics, 8(11), e23626. https://doi.org/10.2196/23626
Robillard, J. M., Bourne, S. C., Tam, M. T., Page, P. M., Lamb, E. A., Gogal, C., Skarsgard, E. D., & Afshar, K. (2020). Improving the paediatric surgery patient experience: An 8-year analysis of narrative quality data. BMJ Open Quality, 9(2), e000924. https://doi.org/10.1136/bmjoq-2020-000924
6 hours – NHS website (not sure if this is for adults or children)
Really interesting piece of research and a very informative and well-written blog! Well done Phoebe!