Healthcare professionals in paediatric care are expected to provide high-quality acute care, prevention, health promotion, and support for young people with a wide variety of long-term illnesses, including type 1 diabetes. The standard of care and self-care for type 1 diabetes implies good metabolic control, including knowledge of the goals for blood glucose, self-care regarding administrating insulin by insulin pumps or multiple daily insulin injections, continual glucose monitoring, and knowledge of how to handle an emergency with hyperglycemia or hypoglycemia (American Association of Diabetes Educators, 2018).
In Sweden, approximately 700–800 young people (aged 0–18 years) develop type 1 diabetes each year (Swedish National Diabetes Register, 2019), and each person needs individual adjustments and self care support. Most young people in Sweden stay at a hospital for 1–2 weeks at the onset of type 1 diabetes for stabilisation and to initiate insulin therapy. During this period, every young person follows a self-care education programme that involves the whole family (Mullier, 2012). Good metabolic control is the main goal for education and for all diabetes care, specifically preventing and decreasing long-term complications associated with type 1 diabetes (American Association of Diabetes Educators, 2018).
The development of new diabetes devices has improved diabetes care and self-care (Pihoker et al, 2018), but despite new technical possibilities, young people still struggle to achieve good metabolic control and manage self care in their daily lives, school and other educational settings. To achieve good metabolic control, it is vital that young people be supported in the management of diabetes (Rising Holmström et al, 2017).
Edwards et al (2014) conducted a systematic review of interventions, barriers and facilitators to achieve optimal self care for young people with type 1 diabetes. The authors found that young people, parents and school personnel struggle with many common structural, organisational, educational and attitudinal school barriers (Edwards et al, 2014). Self care in school is sometimes challenging, and earlier research has shown that a lack of continuous diabetes education and lack of clarity on responsibility created feelings of uncertainty and insecurity for young people, parents and school personnel (Rising Holmström et al, 2017; Holmström et al, 2018a; b). In addition, healthcare professionals have reported that school personnel are afraid of the responsibility of supporting self care for young people with type 1 diabetes (Boden et al, 2011). Young people with type 1 diabetes are dependent upon competent and accessible healthcare to manage their self care, immediate health and wellbeing in daily life, in addition to managing their learning and academic performance in school (Marks et al, 2013; Hill et al, 2007).
‘Young people with type 1 diabetes are dependent upon competent and accessible healthcare to manage their self care, immediate health and wellbeing in daily life, in addition to managing their learning and academic performance in school’
A narrative review by Hinton and Kirk (2015) showed that communication between families, school and healthcare services sometimes appeared to be sub-optimal, and collaboration was frequently hard to establish. A Swedish study focusing on young people's experiences of living with type 1 diabetes in relation to school showed that young people strived for normality and independence, as well as accepting, needing and receiving support from others such as healthcare professionals (Rising Holmström et al, 2017).
Research in Australia showed that diabetes educators (healthcare professionals) found the technology used in the care of patients with type 1 diabetes to be burdensome. They felt it was demanding to keep up with common diabetes-related advances, including access to new technology and available support (James et al, 2016).
‘…healthcare professionals are key authorities for young people with chronic illness, and their experiences of supporting young people with type 1 diabetes needs to be addressed to understand and improve diabetes care.’
Healthcare professionals in a hospital setting oft en meet young people at the onset of type 1 diabetes and continue to support them recurrently with checkups every third month throughout childhood (Swedish National Diabetes Register, 2019). In this regard, healthcare professionals are key authorities for young people with chronic illness, and their experiences of supporting young people with type 1 diabetes needs to be addressed to understand and improve diabetes care.
The aim of this study was to describe healthcare professionals' experiences of supporting young people with type 1 diabetes in order to improve care.
Methods
A phenomenological qualitative approach was chosen for the present study. This is a method that emphasises rich, contextualised descriptions based on experience and turns to the phenomenon itself, without incorporating existing prejudices (Polit and Beck, 2016). In line with this, data were collected from individual interviews (Bates, 2004) and subjected to inductive thematic qualitative content analysis. The analysis was at both the manifest and latent level and was conducted without preconditions (Woods and Catanzaro, 1988; Graneheim and Lundman, 2004).
Participants and procedure
A purposive sample of seven healthcare professionals (two nurses, a physician, a counsellor, a psychologist, a dietitian and a teacher at the hospital school), who were part of a paediatric specialist diabetes care team with experience supporting and caring for young people 0–18 years old with type 1 diabetes in a Swedish hospital participated in the study.
The inclusion criteria were at least two years' experience working with young people with type 1 diabetes in a paediatric healthcare specialist clinic and fluency in Swedish. All participants worked in a paediatric healthcare specialist clinic located at a hospital in a county in the north of Sweden. The professionals' experience ranged from 2 to 45 years (median: 22 years).
Characteristic variation was attempted by selecting participants from different professions who varied in terms of experience. The researcher administered letters to all healthcare professionals working with young people with type 1 diabetes. The letters contained information regarding the study, a request to participate, and a response envelope. Upon receiving the response letters, the first author contacted the healthcare professionals to arrange a time for an interview.
Ethical considerations
The study was conducted in full accordance with ethical principles outlined by the World Medical Association (2018) Declaration of Helsinki and undertaken with the understanding and written consent of each subject. This study is a part of a larger study, which aims to obtain more knowledge about young people with type 1 diabetes, reviewed and approved by the Northern Ethical Committee.
In this specific study, the participants were healthcare professionals and no vulnerable young people or relatives were included in the interviews. Before starting data collection, participants were informed about the nature of the study, gave their informed consent, and were told that they could voluntarily withdraw from the study at any time. They were guaranteed confidentiality; findings are presented anonymously with no disclosed individual characteristics.
Data collection
Qualitative and narrative personal interviews were conducted with healthcare professionals in a ‘natural’ environment (for example in the staff room or clinical office). The interviews were conducted between January and June 2018 by two of the authors. Participants were encouraged to speak freely without interruption about their experiences, and an interview guide was used to provide consistency and dependability during interviews. The interview guide consisted of four open questions:
- Please tell us how you experience the work of caring and supporting young people with type 1 diabetes
- Please tell us how you support young peoples' self care in everyday life
- Please describe your cooperation with young people, parents, colleagues and school personnel
- Have you encountered any difficulties or opportunities in your work with supporting and caring for young people with type 1 diabetes?
Interviews were audio recorded and lasted between 38 and 71 minutes (median duration: 57 minutes) and later transcribed verbatim by the first author. This design was chosen to obtain data that would be as rich, detailed, and complete as possible and to give participants the opportunity to speak specifically about their experiences. In total, the interviews included 88 pages of text. Data were saved in accordance with current regulations, which means that these records will be archived for at least 10 years (Polit and Beck, 2016).
Analysis
The interview texts were analysed using qualitative thematic content analysis, which is a process of identifying, coding and categorising the content of interview texts (Downe-Wamboldt, 1992). According to Woods and Cantanzaro (1988), the purpose of content analysis is to offer knowledge and understanding of the experiences under study both at a manifest and latent level. Based on this, the analysis was divided into four steps (Table 1) (Woods and Catanzaro, 1988):
- The interviews were read several times by the authors to get a sense of the content
- The text was divided into meaning units (ie a word, sentences or a paragraph with the same content) guided by the aim of the study and condensed
- The condensed meaning units were compared and sorted into categories based on similarities and differences in content
- The categories were related to each other and subsumed into four themes.
Table 1. Examples of the data analysis process
| Meaning units | Condensed meaning units | Categories | Themes |
|---|---|---|---|
| ‘Today when I meet youth at the onset of diabetes, I have a broader perspective. It is important to support and motivate them to have wellbeing and a good life.’ (Participant 4) | Broader perspective to support youth's wellbeing and motivation for a good life | Support motivation for wellbeing and a good life | Strengthen young people's motivation |
| ‘You may need advice or want to share experiences on how to interact with a child, both pros and cons. The team raises mutual questions and develops routines.’ (Participant 1) | Healthcare professionals' experiences giving and getting better support through teamwork | Support from interdisciplinary teamwork | Sharing knowledge for better support |
| ‘An important success factor for diabetes care is that we succeed in passing the responsibility on to the families.’ (Participant 3) | Passing on responsibility for diabetes care to families is a success factor for diabetes care | Transition of responsibility is positive for young people's diabetes care | Transition of responsibility to young person and family |
| ‘There are a few areas where the patient group is increasing dramatically. Resources, on the other hand, have been at the same level for the last 25 years.’ (Participant 5) | Healthcare professionals experience patient group dramatically increasing but resources remain the same | Healthcare professionals experience imbalance between patient needs and available resources | Imbalance between resources and needs |
A theme can be described as threads of meaning that appear in a category (Baxter, 1994). Throughout the analysis, there were ongoing discussions among the authors to critically reflect on and review interpretations of the findings throughout the analysis. Finally, all authors met and discussed the analysis thoroughly until consensus was achieved (Graneheim and Lundman, 2004).
Results
The analysis resulted in the following four themes that described healthcare professionals' experiences of supporting young people with type 1 diabetes:
- Strengthening young people's motivation
- Sharing knowledge for better support
- The transition of responsibility to young people and their family
- The imbalance between resources and needs.
Strengthening young people's motivation
Healthcare professionals reported that new diabetes devices, such as continuous blood glucose meters and insulin pumps with new digital possibilities, have changed the education and management of self care and also changed the needs of young people in terms of support for living with type 1 diabetes. Structured education is delivered at the onset of the illness during the hospital stay as a base for young people and the family's diabetes competence. The healthcare professionals reported that the hospital stay used to last 2–3 weeks. Diabetes-related advances such as new diabetes devices enable more efficient management and control of diabetes by young people and their families. As a result, the hospital stay has been reduced and is now approximately 5–7 days and the duration of the education course has been shortened in duration, but not content, accordingly. After the acute phase of the onset of type 1 diabetes, medical concerns, such as checking blood glucose and administrating insulin, were reported to be less overwhelming for young people. Instead, new support needs were identified, which were often related to the diabetes device and the young person's motivation to maintain metabolic control.
‘…new diabetes devices, such as continuous blood glucose meters and insulin pumps with new digital possibilities, have changed the education and management of self care.’
Healthcare professionals experienced young people and parents, in general, to be very well educated regarding diabetes, but the challenge was to support young people to stay motivated and to manage their diabetes as they age. The participants reported that it was a challenge to support and motivate young people to maintain good metabolic control every day and make them understand that keeping good metabolic control is fundamental in diabetes care.
‘Today when I meet young people at the onset of diabetes, I have a broader perspective. It is important to support and motivate them to have wellbeing and a good life.’
(Participant 4)
The counsellor and the psychologist at the clinic emphasised that support for young people focused on how to learn to live with their illness and to realise that it is possible to have a good life with type 1 diabetes even though every day may not turn out perfectly. This was partly to help them to understand why metabolic control was important, and partly to coach and guide them towards healthy habits and support them in accepting the illness.
The participants stated that diabetes care was structured and well organised at the clinic, with young people being invited to four visits a year. Young people with type 1 diabetes were often patients at the clinic for several years and were well known by the healthcare professionals on the specialist team. The visits focused on medical issues and tests, but nurses and physicians also reported that they tried to find time to sit down and talk about everyday things, such as holidays, weather, school or the hockey team. This part of the meeting was described as important and a way of getting to know the patient and see the person behind the illness.
During visits in which metabolic control was seen to be decreasing, the participants noted that it was important to be aware of how to interact with young people and never question or accuse them of failing to maintain good metabolic control. Instead, they ask the patient to describe the last couple of months and what has happened in school and everyday life. Based on their answers, they ask about the type of support or help the person needed and how healthcare professionals could provide this care.
Sharing knowledge for better support
The diabetes specialist care team had close communication and consulted with each other. They had a joint approach towards the young people attending the clinic and their families, and they shared knowledge and learned from each other in an interdisciplinary way, all with the goal to give high-quality support. They expressed that this way of working was important for individual development and progress of diabetes care. The nurses, physicians and the dietitian had by far the most meetings with young people.
‘You may need advice or want to share experiences on how to interact with a child, both pros and cons. The team raises mutual questions and develops routines.’
(Participant 1)
The hospital school was important for collaboration with a young person's school and also for a smooth return to everyday life. The teachers at the hospital school had knowledge of the structure and organisation of schools and the entire education system, and this collaboration was useful in adapting support for young people with type 1 diabetes.
‘I can contribute with my knowledge of schools and ask those school questions. For example, “How do we plan for sports days or field trips to the museum?”’
(Participant 7)
Healthcare professionals tried to meet once a week, but it was often difficult because of their workload. They reported that they often met over lunch for a quick talk instead. Once every semester, the clinic arranged a half day meeting for healthcare professionals. This was described as positive for the development of teamwork and diabetes care, and provided improved conditions for delivering support.
‘At times, the transition and collaboration did not work in the school, which was attributed to issues with communication between families (young people and parents), the school, and healthcare professionals.’
‘We meet once every semester and you don't want to miss those meetings because you get important feedback on your work. We discuss new devices and changes in care.’
(Participant 6)
Transition of responsibility to young people and their family
Healthcare professionals reported that diabetes care had been transformed regarding the responsibility for everyday care. This contributed to increased quality of diabetes care over the past year according to the participants. The transition of responsibility was reported to begin very early, starting during the hospital stay at the onset of illness. The participants reported that they transferred responsibility to the parents and the young person (depending on their age) and guided and explained to the family that they will be responsible for changing insulin doses and controlling and following up on blood glucose, as a result of new guidance on diabetes management. Healthcare professionals remain a support for the families to consult with and discuss problems. This process of taking charge of diabetes care was described as an important success factor for the families.
‘An important success factor for diabetes care is that we have succeeded in passing the responsibility on to the families.’
(Participant 3)
The participants described a further transition of responsibility from the parent to the young person and to school professionals. At times, the transition and collaboration did not work in the school, which was attributed to issues with communication between families (young people and parents), the school, and healthcare professionals. The participants felt that school personnel did not fully realise the seriousness and implications of type 1 diabetes, and that it could lead to a shorter life span. This was reported to be frustrating and burdensome for the participants because it could sometimes lead to dysfunctional settings for their patients, as the school setting oculd be unpredictable, with sudden changes to the curriculum that affected young people with type 1 diabetes.
On the other hand, there were experiences where communication and collaboration were effective, and this created a positive atmosphere in school for young people with type 1 diabetes. The participants described a strategy that they used to encourage positive transitions through collaboration with schools, with recurrent meetings where school personnel were invited to the clinic and where healthcare professionals provided continuous education and support in diabetes care to school personnel. The headteachers, who are responsible for collaboration and resources in school, seldom participated, and this was viewed as a weakness in the collaboration between healthcare and schools. However, school nurses and teachers often attended these meetings.
The imbalance between resources and needs
The participants expressed frustration at the burden of a heavy workload coupled with a lack of resources. Participants stated that more resources were needed in child and adolescent diabetes care. They stated that resources (regarding hours for physicians and nurses) were at the same level as they were 25 years ago, though the number of patients had increased substantially.
The structured education given at the onset of illness is used as a basis for competence of young people and families. Despite this, new questions and issues were identified when young people returned home and to school. Participants were often asked to visit schools to give information about diabetes or to provide continuous diabetes education for young people, their family and school personnel. Unfortunately, there are insufficient resources available for this purpose. Instead, participants invited school personnel to the clinic for the requested education. School nurses were important in this collaboration.
Problems with diabetes devices, such as continuous blood glucose meters and insulin pumps, occurred consistently and young people need a fast response from healthcare professionals at these times. Participants reported it was difficult to fulfil these needs because of the lack of resources for support, in terms of available nurses and physicians, and lack of flexibility in the structure of healthcare, and this resulted in an imbalance where healthcare professionals struggled to meet the needs of young people with type 1 diabetes.
‘There are a few areas where the patient group is increasing dramatically. Resources, on the other hand, have been at the same level for the last 25 years.’
(Participant 5)
The participants described diabetes as a life-long serious chronic illness that required care every day and night. They reported it as frustrating and burdensome to know that they could not fully meet the needs of young people and families and that the lack of support might affect the metabolic control negatively and, in the long run, affect future life.
‘It is frustrating to know that we cannot fully meet the young patients' needs.’
(Participant 2)
Discussion
The findings of this study highlight the importance of healthcare professionals' experiences when establishing how to support young people with type 1 diabetes. The participants in this study described how they worked to strengthen young people's motivation towards lifelong health and wellness. This work was associated with a new generation of diabetes devices that provide possibilities for self care for young people and their parents to manage and control type 1 diabetes. However, new needs have emerged that require a more health-promoting, person-centred approach, which means focusing on health and daily life for these young people who have been diagnosed with a lifelong illness. This approach considers the needs, values and uniqueness of each person within the care context (sympathetic presence) to create person-centred outcomes (Ekman et al, 2011).
The participants described the development of a long and lasting relationship (often several years) with young people with type 1 diabetes attending the clinic. This led to healthcare professionals forming a relationship with their patients, where they mutually shared their lives and experiences. Sometimes the visit included idle chat, and by doing so, the participants established a trustful relationship with mutual respect. The participants used supportive, patient-oriented communication skills with an approach that aimed to ensure that young people had a positive experience and received the care and support they needed (Skär and Söderberg, 2018).
This approach was important at times when young people described struggling to manage self care, which sometimes resulted in decreased metabolic control with high blood glucose levels. The participants work in a paediatric specialist team, which shared knowledge between different healthcare professionals to provide better support for young people and allowed the healthcare professionals the opportunity to work together with colleagues from various professions. They all felt strengthened and were made aware of each other's skills and resources. The collaboration between professions with different perspectives enhanced the overall understanding of the complexity and needs of young people with type 1 diabetes. Ongoing knowledge sharing with the team improved the possibility of providing support. This is in line with research suggesting that multi-professional approaches could improve quality of care in people with long-term conditions such as diabetes (Sørensen el al, 2020).
The participants reported that diabetes care had been transformed regarding the responsibility for everyday care and the new diabetes devices, such as digital insulin pumps and continual glucose monitoring, had accelerated this change. Young people and their families were encouraged and supported to participate in diabetes care by learning to manage diabetes devices and to believe in their own abilities. This was made possible by the way that healthcare professionals approached young people and the families during the hospital stay at the onset of the illness when structured diabetes education took place.
The transfer of responsibility to families was further strengthened throughout the four annual visits that patients are invited to at the clinic. It was described as a transition of responsibility that took place during a trustful process with education as a base at the onset of illness. This process was vital and a key for success in allowing young people, their family and their school to take charge of the situation and integrate diabetes care into everyday life (Rising Holmström et al, 2017; Holmström at al, 2018a; b). Furthermore, continuous education and support for young people in school and mutual collaboration between families, healthcare and school professionals were identified as important. The findings of the presen study indicate the need for more flexible collaboration to succeed in this task. This concurs with earlier research, which shows a need for continuous education for school personnel in order to support young people with diabetes (Holmström et al, 2018b). School nurses were identified as key professionals for collaboration between healthcare professionals and school personnel (Thornton, 2009; Holmström et al, 2018b).
One vital finding of this study was the imbalance between resources and support needs experienced by the healthcare professionals. The participants reported frustration at being able to recognise these needs of young people with type 1 diabetes, but not being able to meet them, as the available resources had remained the same for over two decades.
‘The collaboration between professions with different perspectives enhanced the overall understanding of the complexity and needs of young people with type 1 diabetes.’
Strengths and limitations
This study had a number of strengths, based on its design. To achieve trustworthiness, a purposive sample was chosen based on the selection criteria to add a richer variation of the study phenomena, by selecting participants from different professions who varied in terms of experience. The research process presented verbatim quotes contributing to the trustworthiness of the findings and enabling the reader to individually assess the validity (Polit and Beck, 2016). To achieve credibility, quotations were selected from the interview texts and are presented in the results. Furthermore, the researchers worked closely during the entire analysis to achieve credibility (Graneheim and Lundman, 2004).
Seven healthcare professionals were recruited using purposive sampling, and this number was considered sufficient to maintain depth in the analysis. It offered an opportunity to study the experiences of a multi-professional team focusing on diabetes care. The sample size in qualitative research should be sufficiently large to achieve variations in experiences, yet small enough to permit a deep analysis of the data (Sandelowski, 1995; Malterud et al, 2016). A further strength of this study was the rich data collected using questions that followed a semi-structured interview guide (Polit and Beck, 2016). The shortest interview lasted 38 minutes but was assessed as substantial, because it contributed and complemented the other interviews with important data.
The study did have limitations. Only one paediatric specialist care team was included, and it is possible that adding another paediatric specialist care team might have influenced the results. On the other hand, the participants had a lot of experience in supporting and caring for young people with type 1 diabetes (median: 22 years). Furthermore, the findings of this study cannot be generalised, and this was not the authors' intention. However, the findings might be transferable to similar contexts (Graneheim and Lundman, 2004).
Conclusions
The results of the present study indicate that the participants used a person-centred approach to support and strengthen young people's motivation to manage self care and metabolic control, starting with diabetes education at the onset of illness. They described supporting young people with a focus not merely on the disease, but also on the person behind the illness and everyday life. The participants reported that they provided better support when they shared knowledge and worked together in a paediatric specialist care team, which is a positive reflection on the recommendations given by the American Diabetes Association (2016). However, the ability to give support to young people with type 1 diabetes is also dependent on the number of nurses and physicians working in diabetes care. According to the participants in the present study, there are areas where the number of patients has increased dramatically, but the number of staff has remained at the same level for the last 25 years. The participants reported a large imbalance between support needs and available resources, and that they were frustrated that they were aware that the needs among young people with type 1 diabetes were increasing while the resources remained the same. Furthermore, diabetes care has changed as a result of new diabetes devices and digital developments. These developments support management of self care, but also result in new support needs, such as continuous education. This change in diabetes care has resulted in a transition of responsibility from healthcare professionals to young people and their families, who now manage everyday care at home and in school.
The authors recommend that to combat the imbalance between the number of nurses and physicians in diabetes care and the increasing number of patients as well as the changes in the support needs of young people with type 1 diabetes, greater recruitment of nurses and physicians into diabetes care should be a priority. Additionally, continuous diabetes management education should be offered to young people with type 1 diabetes, as well as to parents and school personnel, to improve diabetes care. Healthcare professionals are the most competent and appropriate professional group to be responsible for this education.
KEY POINTS
- Teamwork between healthcare professionals strengthened competence and developed diabetes care.
- A transition of responsibility to youth and families was important for glycemic control.
- To support youth's motivation to manage metabolic control was important yet challenging for healthcare professionals.
- There was an imbalance between resources and needs in diabetes care, in terms of the numbers of nurses and physicians working in diabetes care.
REFLECTIVE QUESTIONS
- How does teamwork strengthen diabetes care?
- Why is the transition of responsibility important for glycemic control?
- Why is a young person's motivation important in diabetes care?