Experiences of parents of children with newly diagnosed diabetes
Research type
Research Study
Full title
Experiences of and support for parents of children with newly diagnosed type 1 diabetes
IRAS ID
332191
Contact name
John Connolly
Contact email
Sponsor organisation
Bangor University
Duration of Study in the UK
0 years, 10 months, 1 days
Research summary
In paediatrics, one of the most common long-term health conditions is diabetes (Royal College of Paediatrics and Child Health, 2020). Diabetes has long-term management implications and children with diabetes are at a higher risk of experiencing mental health difficulties than their peers (Zenlea et al., 2014; Bernstein et al., 2013). Parents of children with diabetes have also been found to have lower wellbeing than their parental counterparts (Whittemore et al., 2012; Yaqoob et al., 2018). Research has found that distress for children and parents at the point of diagnosis and initial adjustment is particularly common (Simms & Monahan 2016). There is very little research that has focused on experiences and support for parents at the point of diagnosis. This study seeks to build on existing research by systematically and collaboratively exploring parent and clinician views on the process of diagnosis of type-1 diabetes in children.
This study will recruit parents of children who have had young children (up to 11 years old) diagnosed with diabetes within the last three years in one hospital in North Wales. It will also recruit the local clinicians involved in the diagnosis process. A participatory action research framework will be used to inform a programme of focus groups, including, separate initial focus groups with a group of 4-8 parents and 4-8 clinicians to explore the diagnosis process from both perspectives; an optional joint second focus group to review key themes; and a third optional joint focus group to discuss an action plan. Thematic analysis will be used to support the identification of key themes in the focus group data. Initial themes will be reviewed with the participants and then used to inform a proposed action plan to support improvements in the local diagnosis process.
Lay summary of study results: Context
This study was completed as partial fulfilment of the first author’s doctorate in clinical psychology. The topic was identified whilst the first author was on placement with the local child health psychology and diabetes team through conversations and experiences.Background
Type 1 diabetes (T1D) is one of the most common long-term conditions diagnosed in childhood. In England and Wales, there are approximately 32,276 children and young people with T1D (Royal College of Paediatrics & Child Health, 2024). The incidence of new diagnoses has been steadily increasing year-on-year, with 4,390 children diagnosed in 2022 (National Health Service [NHS] data; NHS, 2023). Once diagnosed, T1D requires the use of daily intensive insulin therapy, self-administered via injections or insulin pump. For families to undertake this task, there is guidance via an extensive education programme, which begins at diagnosis.
Generally, research has considered parents’ experiences of T1D diagnosis within the wider context of adapting to life with T1D. This research has found that distress for children and parents at the point of T1D diagnosis and during initial adjustment is common (Heilporn et al., 2019; Jonsson et al. 2015; Simms & Monaghan, 2016; Simpson et al., 2021; Sousa et al., 2022). Most parents report little prior knowledge of T1D, and the unexpectedness of the diagnosis adds to feelings of overwhelm (Holstrom Rising & Soderberg, 2023; Lowes et al., 2004; Rankin et al., 2014). One study, specifically exploring parent support needs at diagnosis, found that parents wanted more emotional reassurance from professionals before being expected to absorb complex information (Rankin et al., 2014). The psychological impact of T1D on parents should be of central consideration in paediatric diabetes teams at diagnosis and beyond. Longer-term parental distress has been connected to lower child wellbeing, lower child quality of life, and poorer management of the condition (Whittemore, 2012). Theoretically, the systems around a child have an important influence on child development and wellbeing (Bronfenbrenner, 1979).
Sharing a new diagnosis has often been considered within the frame of ‘breaking bad news‘ or ‘sharing life-altering information’ (Berger & Miller, 2022; Buckman, 1984; Wolfe et al., 2014). Several general communication models have been developed to support doctors sharing difficult diagnoses (Baile et al., 2000; Narayanan et al., 2010; Rabow & McPhee, 1999). Some research has adapted these for paediatric settings (Wolfe et al., 2014). There have also been more recent models of best practice that have placed patient/professional relationship at the heart of effective patient/professional communication (Davies et al., 2017; Tranberg & Brodin, 2023). There is evidence to support that an increased focus on addressing emotions through ‘affective’ communication, as opposed to technical communication, can increase patient recall of information (van Osch et al., 2014). To date, there has been no research exploring clinician experiences of sharing paediatric T1D diagnoses, which is a significant gap in the literature. The complex task in paediatric T1D diagnosis of sharing/processing life-altering news and transferring/learning extensive medical information creates challenges for both parents and clinicians. The additional requirement for longer-term patient/professional care relationships makes this an area of research important to improving practice.Aims
The study aimed to systemically and collaboratively explore the experiences of local parents and clinicians of type-1 diabetes diagnosis and create an action plan that could improve the process. These perspectives were selected to represent the key systems influencing child wellbeing and initial adjustment during T1D diagnosisMethod
Design: Participatory action research involves collaboration between researcher and participants to improve understanding of a situation and inform action (Koch & Kralik, 2006; Raynor, 2019). This is a research approach that strongly aligns with NHS values and healthcare principles of person-centred/family-centred care (Shen et al., 2017). The process encourages understanding and action that is historically, culturally, and contextually situated (Baum et al., 2006), improving the relevance of research to practice (Shen et al., 2017).Participants: Participants were parents of children (up to 12 years old) who had been diagnosed at the local hospital within the previous three years (parents, n = 9). Parents of younger children were chosen due to this being the first ‘peak’ in diagnosis of childhood T1D, the higher responsibility for management placed on parents of younger children, and the time period being associated with greater parental distress at diagnosis (Jonsson et al., 2015; Patton et al., 2022).
Clinicians were those that were involved in diabetes diagnosis (clinicians, n = 5). This included a consultant paediatrician, two specialist diabetes nurses, one dietician, and a clinical psychologist. Two further professionals initially expressed interest in participating and would have represented staff involved with diabetes diagnosis on the paediatric ward. Unfortunately, they were unable to attend the focus group on the day due to clinical demands.Data collection: Semi-structured focus groups with parents and clinicians were utilised for data collection. Focus groups were utilised (as opposed to individual interviews) to support the collaborative approach. The focus group schedule was shared with potential participants at the design stage and feedback was gained. Data were collected in two focus groups, one with parents and one with clinicians.
Data analysis: Data was analysed using the process for reflexive thematic analysis (Braun & Clarke, 2006). This approach was chosen due to its flexibility and accessibility for collaboration with non-academic participants. Analysis was completed by the first author and refined in collaboration with all co-researchers, including co-authors and participants. Two optional reflective groups with participants supported the data analysis and creation of the proposed action plan.
Findings
Analysis resulted in six themes, two independent and four shared. Independent themes were those generated from primarily one group alone (i.e. parents or clinicians) and shared themes were those generated from both groups. All themes were highlighted and supported within discussions with participants in the first reflective groups around most important messages. The themes are listed below with a short description and illustrative quote.1. The limits and pressures on clinicians and the system - This included competing demands, wider ward staff changes and hospital pressures. "Sometimes, there’s a pressure on us, like we have to go and give them this information but actually, if you think of yourself and someone giving you information… I probably would have switched off after a few minutes. So you have to not think of what you need to deliver but actually what they can absorb in that time" (Clinician 5)
2. Parents’ emotional lens at diagnosis - The emotional experience was prevalent throughout all discussions and there was an emotional journey during diagnosis. "In the beginning, though, you think it's the end of the world and to really miles ahead thinking, ‘he's not going to be able to do this, and this, and that’" (Parent 9)
3. The power of knowledge - The majority of parents had low pre-existing knowledge of T1D and this impacted their experience of diagnosis. This was also a factor that clinicians were mindful of. Varied ward staff knowledge and the impact of this was discussed by both groups. "You don't really know what you're looking for. I mean you know the word diabetes exist and you know that people can get it"(Parent 1); [Impact of high ward staff T1D knowledge and weekend of ward staff and parents doing injections and carbohydrate counting together] "We came on Monday and it was just like, you know, you feel like it's a walk in the park… they were just at a better place really….That was really positive" (Clinician 3)
4. Difficulties with communication and transparency - For parents, pre-diagnosis information varied and communication at the hospital was not always clear. Clinicians reflected on some of the systemic difficulties with communication in a busy hospital setting. Both groups thought that increased communication and transparency about the initial treatment, including length of stay and items required on discharge, would be helpful. "Yeah, being transparent about what they're looking at… what's the possibility… They don't share everything with you. I guess there’s limitations, but you know… " (Parent 3); "You know, it's difficult here in that…a nurse does your obs [observations], and then an SHO [senior house officer] and they'll often clock first and then a reg [registrar] will come round after and then they'll speak. And so you’re seen by quite a few people, it takes quite a long time. …And then maybe me [consultant], if I come to them next and they've got all this information to untangle, have they been given the right information? …but how much have parents been told already? It's not always clear from the notes" (Clinician 2)
5. Conditions for learning, adjusting and forming relationships This related to the conditions in the hospital and included conversations around the length of the hospital stay, the suitability of the food, the availability of equipment to support learning (e.g. weighing scales), and it not being reflective of their day-to-day lives. "One thing that was an issue was that the weighing of the food, there was only one weighing scale… ‘Ohh, no, it’s not that you can't eat that because of diabetes, it’s because we can't get into the kitchen’ [parent mimicking explaining delay to child]" (Parent 2); "And it’s hard working out their insulin requirements, if they're not active, lying down all the time" (Clinician 4)
6. Sharing experiences and gaining support - Both parents and clinicians spoke about needing more space to share with others who had shared experiences as way of gaining support. Parents expressed barriers to accessing support for themselves and clinicians reflected on needing to remind themselves of their role in facilitating this support. "Yeah, because you as a parent feel… your emotion and everything… but… it's not me, it's my child and you think, ‘I can't be selfish. It’s not me that’s going through it’. But you need someone there as well" (Parent 4); "That we never get an opportunity to sit around and talk about things like this and hear from our colleagues, other professionals. And wouldn’t it be nice if sometimes our staff could sometimes fit in, and just have some directive topics and how do you feel about that? That would be really useful" (Clinician 1)
Action plan
The identification of the above themes allowed the creation of a collaborative action plan with participants. Some potential actions had already been identified during the focus groups and these were further refined and discussed in the second reflective group. The actions are organised here around the four shared themes:
1. The power of knowledge
• Facilitate a reflective space for general doctors and ward staff to gain their perspective on difficulties with diabetes diagnosis and T1D knowledge
• Review options for funding to create a local bilingual introductory information video with parents that could be shared with new families, reviewed by staff when new diagnosis on the ward and with wider family members and school staff
• Parents to review information materials shared with parents when first diagnosed2. Difficulties with communication & transparency
• Share the research with GPs to raise awareness of communication difficulties at initial stage
• Create a communication sheet for the diabetes team to keep track of what has been shared with parents and how they are getting on (e.g. how they are adjusting/coping, areas of understanding/education that are strong or they are struggling with)
• Create a ‘practical necessities’ list to add to information provided to parents at diagnosis
• Increase communication about the early process; timeline of initial hospital stay, who they will meet, roles of diabetes team versus ward staff, and what information is required to be transferred
• Consider a conversation with parents to identify a ‘learning plan’ to support early education (i.e. identify parts of information/learning they are more concerned about (e.g. injections versus calculations))3. Conditions for learning, adjusting & forming relationships
• Consider a more active offering of ‘leave’ from the ward to allow families a break/more stimulation and ‘test’ learning in real-life activities
• Highlight weighing scales on the list of necessities and parents encouraged to bring them in from home to facilitate early learning and ease difficulties at mealtimes
• Team to review options for funding to purchase weighing scales to share with newly diagnosed families on the wards for them to use
• Consider repetition of early education in early clinic appointments4. Sharing experiences & gaining support
• Continue collaboration between the team and parents, through:
o Confirming agreement from all parent participants that they are happy to be contacted by the team for the proposed actions
o Provision of regular protected space within quarterly team away days to have interested parents join, connect, and reflect together (purpose to review actions here but potential for wider)
o Further space to reflect and develop wider engagement with parents. Proposal for use of surveys as part of continual review of diagnosis experiences
• Maintain newly established under 5s newly diagnosed group (this has been widely engaged with). Clinicians reported historic difficulties with engagement with parent support groups due to geography of area. Based on the response to under 5s group and parents highlighting peer support, review whether more specific parent support groups are more relevant than generic
• Consider providing more information and structure to psychology support, including:
o Repetition of role of psychology with newly diagnosed families in early clinics
o Maintaining role of psychology, where possible, in annual reviews
o Potential provision of annual newly diagnosed group session to provide space to reflect on the early adjustment phase and connect with other parents at a similar time-point
• Raise and maintain clinician awareness of importance of connecting and reflecting with each other, as much as is possible
• Consider providing more spaces for clinicians to facilitate post-diagnosis learning and debriefing, for example:
o Informally checking-in after a diagnosis
o A formal post-diagnosis team meeting to think about each individual diagnosis and to consider a plan for the individual needs of that familyConclusions
This study provides a unique contribution to our understanding of T1D diabetes diagnosis from the perspective of both parents and clinicians. This understanding has been created in collaboration with the participants, resulting in an action plan to support improvements within the local system. The study identified themes that reflected a somewhat chronological, interactional process that is entered into by those involved, with their own unique perspective and influences. These perspectives could be conceptualised as the ‘lenses’ through which diagnosis is viewed. The independent themes of the limits and pressures on clinicians and the system and parents’ emotional lens reflect that the people involved in diagnosis are both impacted by stress in various ways. The pressure and emotions from the different perspectives then interacted and influenced the shared themes of the power of knowledge, difficulties with communication and transparency, the conditions for learning, adjustment and forming relationships, and sharing experiences and gaining support. There was a strong connection between systemic difficulties and parental distress. Therefore, focusing on improving the system and processes around diagnosis could have a positive impact on initial parental experiences and early adjustment. Parents and clinicians were able to identify many potential actions that could support this in the local hospital.Bringing these two perspectives together has highlighted difficulties inherent in sharing/processing life-altering information and facilitating the learning required to support effective T1D self-management. Arguably, T1D is unique in there being limited choice or flexibility in relation to the volume of information that must be shared in the emotionally sensitive phase after diagnosis. The challenges that have been highlighted within the findings reflect the complexity of the task and concurrent processes that exist within this window of time. Increased mindfulness and awareness of these concurrent processes could further support the experiences at T1D diagnosis.
In line with a PAR approach, the results and the action plan are most relevant and applicable to the context from which they have been drawn. However, the PAR framework utilised supported working collaboratively and bringing patients and health professionals together, which could beneficially be replicated across other paediatric diabetes services or long-term health conditions. Parents of children with long-term health conditions, like T1D, often experience a perceived lack of control as a continued struggle; therefore, empowerment through engagement with participatory research may be particularly valuable (Shen et al., 2017). Further perspectives that may be helpful to explore as part of ongoing collaboration following up from this study include children and young people with T1D, the ward staff, and extended family supports.
Next steps and dissemination plan
• As a participatory action research approach, the research findings were collaboratively created and shared with participants regularly as part of the process
• The local team, in which this research took place, has the findings and action plan contained in this report in order to begin implementing. There is currently an application in for funding to potentially co-produce a informational video for local newly diagnosed families, their support network, and professionals
• Parent participants have also seen the findings and action plan as written here and have the option to continue to engage with the team in implementing the plan
• Opportunities to share the research findings with relevant stakeholders are being identified including, for example, regional child health psychology meetings and a national children and young people’s diabetes network
• There is a plan to submit the full article for peer review to the journal Health & PsychologyReferences
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Wolfe, A. D., Frierdich, S. A., Wish, J., Kilgore-Carlin, J., Plotkin, J. A., & Hoover-Regan, M. (2014). Sharing life-altering information: development of pediatric hospital guidelines and team training. Journal of Palliative Medicine, 17(9), 1011–1018. https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fclick.pstmrk.it%2F3ts%2Fdoi.org%252F10.1089%252Fjpm.2013.0620%2FNBTI%2FYkK4AQ%2FAQ%2F33b09506-cd26-4d3c-9046-98eb0b1e421d%2F22%2FID7D9phq03&data=05%7C02%7Ctyneandwearsouth.rec%40hra.nhs.uk%7Cdfdfdeb5cc1d4c284cd008dcdd7fd017%7C8e1f0acad87d4f20939e36243d574267%7C0%7C0%7C638628788224798655%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C0%7C%7C%7C&sdata=cf62mOmAHjTRj33dCmt0rollhkNRfpQGWtYha7BIMnM%3D&reserved=0REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
23/NE/0204
Date of REC Opinion
13 Nov 2023
REC opinion
Further Information Favourable Opinion