3 July 2020

Last year we put out a request for siblings of people with CF to participate in a research survey.

This research was led by Katie Armstrong of Massey University and focused on the unmet needs of siblings of children with cancer and serious chronic health conditions (including CF) in New Zealand.

Katie has published her findings which found siblings have very high levels of unmet needs.

The summary of findings also includes:

• Almost all survey respondents endorsed at least one unmet need (98%), 86.3% of respondents endorsed 10 or more unmet needs and 50% of respondents endorsed 32 or more unmet needs (out of a possible 45).
• A difference was found between the average number of unmet needs reported by males and females, with females reporting a higher average percentage than males.
• A comparison of the average percentage of unmet needs between older siblings (>12 years) and younger siblings (≤12 years) at the time of their brother or sister’s diagnosis, showed the older age group had a higher average percentage of unmet needs than the younger age group.
• Following a child’s diagnosis with a serious chronic health condition, siblings can feel strong negative emotions including fear, anxiety, sadness, resentment and distress. Parental focus on the unwell child can lead siblings to feel ‘invisible’ and ‘forgotten’ due to reduced parental attention. These feelings can lead to jealousy of their affected sibling, then guilt for feeling jealous.
• When a sibling’s emotional, informational and relational needs are met in this phase, siblings are likely to adjust to their brother or sister’s diagnosis and cope well in the long-term with their changed circumstances. 

The recommendations from the research point to the need for effective, targeted support for siblings with a focus on:

• age-appropriate information about their sibling’s health condition
• guidance on how to support their sibling practically and emotionally
• professional support offered to them close to the time of diagnosis
• support and understanding from peers, family and teachers
• time with parents to feel included and valued
• a safe space where they feel validated and can speak freely
• recreation and ‘time out’ with other siblings who understand them.

Katie is now doing further research that buildings on these findings.

Read Katie’s full summary

Thanks to everyone from our CF community who participated in this important research.