Families with complex needs: an inside perspective from young people, their carers, and healthcare providers

Complex health needs are demanding and often require additional medical, psychological and social support. All those involved (e.g., patients, carers, professionals) face a unique set of challenges and needs, especially in families where the patient is a child or a young person with a lifelong condition. The aim of the study was to explore carers’ and young people’s needs when living with long term conditions, as well as the views of the healthcare professionals supporting them. Semi-structured interviews with 30 participants (11 professionals, 10 parents, and 9 young people) were conducted. Interviews focused on 3 main areas—(1) medical needs, (2) psychological needs, and (3) communication needs—and were analyzed using thematic analysis. Four main themes emerged: (1) Acceptance takes time refers to the often long and challenging process of adapting to the diagnosis and living with the condition; (2) Close guidance captures the importance of specialised and long term guidance in accessing and managing the complexities of the medical system; (3) Open communication shows the families’ need to be collaboratively connected to healthcare providers and other families facing similar difficulties; and (4) Long-term support underlines the importance of long term formal and informal support strategies. The participants’ experiences and views have provided us with insight and guidance for developing and implementing personalized and integrated services. This inside perspective is key for future research aimed at better understanding the impact of complex conditions and meaningful ways to support families throughout their journeys. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s12687-022-00586-z.