When a child falls ill – The need for family benefits and services and experiences of service processes
The purpose of the study is to find out from the perspective of families how the health and social services system fulfils the promise of the welfare state, i.e. provides a safety net in a situation where a child falls seriously ill. The study takes into account the different components of a challenging life situation, such as the worry and stress caused by the illness, the changes in everyday life caused by the treatment, and the financial challenges faced by the family.
The considered sample of the study consists of families whose children have been diagnosed with cancer, but the results based on the experiences of the families are also applicable to the situations of families facing other illnesses or disabilities. The research material consists of interviews with consenting parents. In addition, both the interviewed parents and the child with cancer will be asked for their consent to extract their register data from Kela's customer and benefit information register. The mixed methods approach, which combines different datasets, aims to gain a more comprehensive understanding of families' service needs and the use of benefits. At the same time, the aim is to demonstrate the extent to which customer experiences and system-based register data correspond with each other.
The project produces information on the support needs of families when a child has cancer. In addition, it produces information on Kela's customer experiences and the use of benefits and services.
Researchers
- Antti Teittinen, Leading Researcher
- Ella Näsi
Project Implementation Period
1.1.2022–31.10.2024. The project has ended.
Project Results
This study was conducted to determine how well the health and social services system fulfils the promise of the welfare state, i.e. provides a safety net in a situation where a child falls seriously ill, from the perspective of families. The study took into account the different components of a challenging life situation, such as worry caused by the child’s illness, the changes in daily life caused by treatment, and the financial challenges faced by the family.
The considered sample of the study consisted of families with a child who had received a cancer diagnosis. In interviews conducted in 2023, the parents were asked how well, in their experience, social and health security could help them with the various challenges brought on by their child’s illness. Participants were also asked for consent to extract their register data from Kela’s customer and benefit data register. The mixed methods approach combining various data sources that was adopted for the study provided a comprehensive understanding of that kinds of services the families needed and how they used benefits.
The study improves understanding of what kinds of needs families may have when their daily lives are disrupted by a child’s serious illness. The financial assistance received by the families consisted of components such as special care allowance, disability allowance for persons under 16 years of age, informal care allowance and Kela reimbursements. Families encountered various challenges when applying for benefits and accessing services, such as delays and uncertainties. The families also needed psychosocial support and help with managing their daily lives. The families had different safety nets. Third-sector services and benefits supplemented the support offered by the public service system and the families’ own networks.
Publications
- Näsi, Ella, Karjalainen, Antti, Teittinen, Antti, (2024.) Kun lapsi sairastuu syöpään, koko perhe tarvitsee pitkäkestoista tukea. Sylva tutkimus 3/2024.
