Short summary

This PhD study investigate the effect of home visits to vulnerable families who have a child /adolescent with T1D. The literature is sparse, and lacks perspectives from both parties (Families and healthcare professionals). Knowledge from the project can be used to design well-planned efforts aimed at reducing early-onset comorbidities, expenses for hospitalization and treatment, as well as strengthening this group's own ability to act and take responsibility in life with chronic illness.

Rationale

There are 3,200 children and adolescents under the age of 20 with T1D in Denmark. Some of these children and adolescents live in vulnerable families in various ways. These children/ adolescents and their families have more difficulties in coping with diabetes in everyday life, and the existing services at the hospitals outpatient clinics are not always adequate in these vulnerable families. Hence, to get T1D does not only affect the child /adolescent, but it has an impact on the whole family.

For the child /adolescent, managing diabetes will be a lifelong task, as it changes over time in relation to the psychological development, age, physiology and maturity. The disease requires great attention around the clock in the form of measurements, medication, counting of carbohydrate intake and adjustment on pump. Therefore, many parents feel that it is a big task to have a child /adolescent with T1D.

For the child/adolescent, TD1 can have an influence on identity development and mental health. Unregulated diabetes can lead to severe complications e.g., retinopathy and micro and macro vascular diseases.

In Denmark, there is limited knowledge about the effect of home visits to children/adolescent with TD1 and their families. However, several hospitals in Denmark provide home visit to vulnerable families with children/adolescents with newly diagnosed T1D, despite this, we do not know the significance or effect of the service.

International studies (USA, Turkey, and GB) have shown an effect of home visits on diabetes related outcomes, as well as Quality of Life, but not the content nor the experience of the home visits.

Thus, there is sparse literature on the importance of home visits and healthcare professionals' experience of providing these visits to vulnerable families with diabetes.

Previous studies have examined health professionals' experience of home visits to vulnerable families within other areas e.g. new mothers in order to prevent early mental problems among their children. These studies have shown that the relationship between the healthcare professional and mother is crucial for success. One study indicated that the service required flexibility in term of time and dates of the visits and that the content of the visit had to correspond to the mother's specific needs if their commitment had to be maintained. Zeanah et al. found that nurses who completed an intensive home visit courses for low-income first-time mothers, often had to replace their medical approach with a more psychosocial approach, to meet the needs of the mothers.

Despite a long tradition within research and diabetes, we do not, to our knowledge have studies on home visits to vulnerable families and their child /adolescent with diabetes.

Thus, we lack knowledge on the importance of home visits both from the child's /adolescent's, the family's and the health professionals' perspective.

The aim of this PhD study is to investigate the importance of home visits to vulnerable families who have a child or adolescent with T1D, both from the child's/ adolescent's, the family's and the health professionals' perspective. In addition, to investigate how a future healthcare service of home visits can be re-designed through user involvement.

Description of the cohort

The study is linked to an effort initiated by Steno Diabetes Centre Odense (SDCO), where home visits will replace outpatient consultations at the hospital to vulnerable families, for a period of 2 1⁄2 years.

The aim is to improve diabetes care and management in the child / adolescents. The target group for this effort includes families who do not benefit from existing healthcare services, and where the child/adolescent has unregulated diabetes, which increase the risk for co-morbidity.

The included children / adolescents and their families have various risk factors that make them vulnerable, including social conditions, lack of understanding of illness, reduced self-care, dissatisfaction at school, non-attendances etc. 10 families included in the initiative "Home visits for vulnerable families", will be recruited consecutively in step with inclusion in this. The recruitment will take place in close collaboration with health professionals at Hans Christian Andersen's Children's Hospital (HCAB &U) and Kolding Hospital's Childrens Department (KH).

Data and biological material

Substudy 1: A qualitative study including both field observations and interviews in order to gain in-depth insight into the lives of families and the child /adolescent with diabetes. Field observations will be carried out in families home both before, under and after the home visits. In addition, individual interviews will be conducted with 10 children /adolescents and their families, e.g., interviews with mother, father and siblings. The interviews will be facilitated by an interview guide informed by existing literature, as well as experiences from clinical practice. In order to investigate the children's / adolescent's perspectives visual art methods such as collages and drawings will be used. Data will be the analysis inspired by Paul Ricoeur's phenomenological-hermeneutic approach.

Substudy 2: Data will be collected through individual interviews with doctors, nurses and psychologists who have carried out home visits to the included families (sub-study 1) after the 1st year with home visits. Participants will be strategically selected (purposive sampling) (n = 10 to 12). However, it is expected that 2-4 doctors, 4-6 nurses and 1-2 psychologists will be involved in this sub-study. Furthermore, field observations will be carried out at all qualifying course days (5 days) and at the preplanned professional back-and-forth sessions (monthly and semi-annually). This, in order to gain knowledge about the health professionals' concrete experiences, challenges and successes in the collaboration with the families. Data will be the analysis inspired by Paul Ricoeur's phenomenological-hermeneutic approach.

Substudy 3: Participants will be recruited alongside sub-study 1 (n=10-20 children/adolescents participating in the effort "Home visits for vulnerable families"), and data on BMI, HbA1c, Time-in-range, diabetes related contacts and admissions to the hospital and data on participatory markers in the effort, will be collected continuously during 2½ year. Data will be collected from the patient record, as well as registration during the project. Due to the small study-population, data will be presented with descriptive statistics (incl. Proportions, mean values, spread and interquartile), as well as change over time calculated by Delta values. STATA 16 software will be used.

Sub study 4: A total of 4-5 families and 4-5 health professionals will be invited to participate in two workshops (equivalent to mid- and final evaluation). Here, the families, the health professionals and the researchers will discuss the findings from sub-study 1-3, and through user activities and co-creating generate new ideas and re-design the concept of home visits. The sub-study is inspired by Participatory Design. All workshops will be recorded, transcribed, and analyzed. Materials such as video recordings, notes and photos will also be included.

Collaborating researchers and departments

HCAB & U: Hans Christian Andersen's Children's Hospital

SDCO: Steno Diabetes Centre Odense

Kolding Hospital

Deakin University, Australia

• Prof. Bodil Rasmussen