Scoping the assessment needs of child carers of adults with long term conditions

The numbers of people living with a long term condition are increasing and people with long term conditions appear in a variety of health settings. Many of these may have young families and be reliant on them for help. A key problem is that young carers’ contributions to caring for an adult often go unnoticed and therefore their needs are, similarly, overlooked (Easton, 2010; Barry, 2011). This is especially the case within adult nursing where assessments are focused on the adult and may not take account of young carers needs. The aim of this project was to bridge the gap between adult and child services by developing an assessment tool for adult nurses to use when working with a family where a young person is involved in the care of an adult with a long term condition. This was a pilot study to address the question: “How can young carers needs be included in the assessment of an adult with a long term condition?” The themes arising from the first focus group included:

• Carer - role and relationship
• What carers do – Formal/informal
• Carers perceptions of the patient’s condition
• Carer’s maturity to understand the patient’s condition
• Carer strain – definitions
• Risk assessment
• Carer vulnerability
• Cultural context
• Mapping support
• Assessment and review of outcomes of planned actions

These were incorporated into the draft assessment tool and disseminated to the participants for comment. The draft assessment tool was also shared with young carers through a local support group following further ethical approval, and the assessment tool was modified further in response to this feedback.