NIPANC Family Survey Interim findings
- NIPANC
- 25 minutes ago
- 2 min read
but we need your help…
Researchers at Queen’s University Belfast, in partnership with NIPANC, are conducting a survey to understand the needs of those supporting a loved one with pancreatic cancer and the emotional impact of a diagnosis.
Led by Tara Anderson, one of four PhD students funded by NIPANC, this research aims to enhance support services for families affected by pancreatic cancer. This study has received ethical approval from the Faculty of Medicine, Health, and Life Sciences, QUB (Ref: MHLS 24_137)
From the responses received so far we have identified a number of areas of unmet need for those supporting a loved one with pancreatic cancer. Unmet needs were identified across all areas of need including; psychological & emotional needs, informational needs, healthcare service needs, and work & social needs.
More detail on areas of unmet need:
- 50% of respondents felt they needed more support with at least 35 out of a possible 45 needs
- The highest levels of unmet need were seen in the following items in which 85% of respondents felt they needed more support with:
o ‘Working through your feelings about death and dying’
o ‘Balancing the needs of the person with cancer and your own needs’,
o ‘The impact that caring for the person with cancer has had on your working life, or usual activities’
- These were closely followed by a number of other items which 80% of respondents felt they needed more support with:
o ‘Getting emotional support for your loved ones’
o ‘Understanding the experience of the person with cancer’
o ‘Dealing with others not acknowledging the impact on your life of caring for a person with cancer’
o ‘Getting emotional support for yourself’
o ‘Accessing information on what the person with cancer’s physical needs are likely to be’
o ‘Reducing stress in the person with cancer’s life’
o ‘Making decisions about your life in the context of uncertainty’
Additionally, psychological wellbeing was substantially impacted with the majority of respondents showing moderate to high levels of psychological distress. For example, 45% of respondents were found to show a severe level of anxiety symptoms as shown in the pie chart below. Respondents also showed substantially lower average wellbeing compared to the population average for Northern Ireland.
To help us find out more, please consider completing this survey to make sure your experiences are reflected.
The survey is open to everyone, aged 18+, who has a family member currently living with a pancreatic cancer diagnosis.
If you would like to participate please click HERE
The closing date for responses is midnight on April 17th, 2025.
For further information, or any questions, please contact Tara: tanderson11@qub.ac.uk
For anyone who might be able to signpost people to this survey, Tara can provide paper copies of the survey with envelopes and stamps for individuals to post them back, as well as flyers with some info on the survey and a link & QR code which people can use to complete it online.
Additionally, this is open to all those supporting someone with a pancreatic diagnosis which might include the patient's partner, adult children, siblings, and close friends (not just the primary caregiver).