Short summary

Having a child diagnosed with cancer, negatively affects the everyday life of the whole family. The parents are at risk of developing mentally and emotionally "burn out" due to several years of treatment and care of an acutely and critically ill child. Research shows that cognitive behavioral therapy for parents of sick children improves parents' mental health. The purpose of the project is to develop (technological) tools/interventions, based on the parents' needs, to prevent mental "burn out"

Rationale

The incidence of children and adolescents (referred to as children) suffering from cancer has increased since the 1940s. In the period 1943 to 1977 and 1978 to 2014, the incidence of Danish children diagnosed with cancer were 13 per 100,000 person-years and 17.7 per 100,000 person-years, respectively.

In contrast, the mortality rate in Denmark was decreasing. The 5-year survival rate for all cases was 81%, which is similar to other Nordic countries.

The treatment of childhood cancer is highly specialized and held by the university hospitals in Denmark. Childhood cancer is categorized as:

1) Central nervous system (CNS) tumors,

2) Solid tumors and 3) Malignant hematology. Leukemia is the most common course of cancer in Danish children, especially among the younger ones (2-4 years old), followed by CNS tumors.

Having a child diagnosed with cancer, negatively affects the everyday life of the whole family. Typically, the sick child and a parent are admitted to the hospital and experience a lot of restrictions related to their daily and social life. They describe their everyday life with feelings as lonely and isolated. At the same time, they express the need of being able to live together as a family. There is evidence that children suffering from cancer as well as their relatives experience reduced quality of life.

The parents are at risk of developing mentally and emotionally "burn out" due to several years of treatment and care of an acutely and critically ill child. Research shows that cognitive behavioral therapy for parents of sick children improves parents' mental health. Mindfulness has been used extensively in recent years, while compassion-related interventions are uncommon.

The purpose of the project is to develop (technological) tools/interventions, based on the parents' needs, to prevent mental "burn out"

Description of the cohort

The project includes Danish or English speaking parents of children (0-17 years old) diagnosed with cancer, who recieves treatment at Odense University Hospital, Aarhus University Hospital or Aalborg University Hospital. Parents of children with terminal cancer are excluded.

Data and biological material

The project is conducted in both qualitative and quantitative research methods with an open approach to data generation, analysis and interpretation. Through open-ended interviews first-hand and in-depth descriptions of how it is experienced to be a parent caring for a child suffering from cancer and what challenges they are facing in everyday life are conducted. Data collected through questionnaires focusing on compassion, "burn out" and secondary traumatic stress contribute to supporting the parental experiences.

The key element of the project is user-involvement - in line with the design used; Participatory Design (PD). PD is characterized by letting the users actively participate in research, because the ones in need of change are actively taking part in the change process, and results that are closer to the stage of implementation are generated. A complete involvement of all stakeholders also includes the health professionals. Therefore, consultations with families and clinicians are observed and noted. Furthermore, focus group interviews with clinicians are conducted.

In this project, PD contributes to investigate and describe first-hand perspectives. These perspectives provide greater understanding of challenges and needs, and they are key elements in the issues raised, the solution proposals made and the technology developed, tested in user-driven workshops and implemented in practice.

Collaborating researchers and departments

Department of Children and Youth, Aarhus University Hospital and Department of Children and Youth, Aalborg University Hospital