Families’ social security and benefit needs when a child is diagnosed with cancer

Abstract

Abstract When a child is diagnosed with cancer, the need for health and social services and benefits increases significantly within the family. Illness changes everyday life due to medical treatments, worry and financial challenges due to parents’ absence from work. Previous research shows that higher socioeconomic status correlates with better survival for cancer patients in Finland and abroad. The purpose of the study is to reveal the factors behind the disparate cancer outcomes among children from different backgrounds. Our aim is to build a comprehensive understanding of how families utilize services and mobilize their own social capital. The research approach is qualitative. Parents, whose child was diagnosed with cancer within 4 years, were interviewed. The interviews were analyzed with a narrative approach. The interview data was utilised in conjubction with participants’ data from the benefit register of the Social Insurance Institution of Finland (KELA). Thus, both subjective experiences and register data provide a holistic picture of families’ needs and benefit use. All families utilized more than one social benefit provided by KELA. In addition, families utilized social services and benefits provided by the municipality and patient organizations. Parents reported advice received from hospital social workers and rehabilitation counsellors very important. Social benefits and services cover only part of the families’ needs. In addition, parents reported need for concrete support such as help in household duties. The results allow for comparison among families and their social capital, e.g. the support they received from their relatives and friends. The study shows that families have a wide array of service and benefit needs when a child is diagnosed with cancer. The study helps benefit and service providers understand how families differ in their service and benefit needs and in their ability to mobilize support from their own network. Key messages • Families have a wide array of service and benefit needs when a child gets cancer. • Families differ in how they mobilize support from relatives and friends during child's illness.