Abstract

Background

Carers are profoundly affected by their care giving role yet little attention has been given to identifying and meeting their needs. In particular, the experiences of carers of young people with cancer are not described. We aimed to identify carers’ unmet information and support needs. Further, we sought to examine any differences associated with the extent of exposure to specialist care.

Method

BRIGHTLIGHT participants nominated their main carer to complete a Carer Questionnaire addressing information needs, healthcare service experience, emotional and psychological well-being and support needed/received. Questionnaires were completed six months after diagnosis. Comparisons were made according to where young people’s care was delivered: all in a Principal Treatment Centre (PTC), some in a PTC, or no care in a PTC.

Results

Four hundred and seventy-six questionnaires were returned (57% response rate). Mean age was 45.9 (+/-10.5) years, 381 (80%) were female and 401 (85%) were parents. Sixty-six percent reported often/always feeling tired and 58% often/always felt sad. Approximately 20% never received support when they felt depressed or anxious or never received support to find time to themselves.

Sixty-six percent worried about cancer returning and about young people’s emotional/psychological wellbeing. Fewer than 50% could manage balancing their job/domestic responsibilities with caring and 25% received no support to facilitate this. Carers who had no exposure to PTC care were less likely to receive information about financial support/benefits, less support to manage social consequences of cancer, less contact with other carers and less access to healthcare professionals.

Conclusion

We have identified unmet support needs of carers of young people with cancer. This includes lack of support for tiredness, sadness, depression and anxiety. Carers with no access to PTC care had more unmet needs. These data support the value of specialist services for young people with cancer.