Introduction
A cancer diagnosis affects far more than the individual receiving it. It also impacts the family members, friends and caregivers who provide support, comfort, practical help and advocacy throughout the cancer journey.
For people supporting someone living with neuroendocrine cancer, the experience can be both rewarding and challenging. Many family members, friends and caregivers take on significant emotional, practical and sometimes physical responsibilities, often while managing the impact on their own health, wellbeing, relationships, employment and finances. These experiences may begin long before a diagnosis is reached and can continue throughout treatment, recovery, recurrence, advanced disease or bereavement.
At Neuroendocrine Cancer UK, we recognise that family members, friends and caregivers play a vital role in the lives of people affected by neuroendocrine cancer. Yet their own experiences, needs and challenges are not always well understood or adequately supported.
This survey has been developed to better understand the experiences of those who have supported someone living with neuroendocrine cancer and to identify what more can be done to support them.
This survey aims to understand:
- Your experience of supporting a person living with neuroendocrine cancer
- The emotional, practical, social, financial and physical impact this has had on your life and wellbeing
- Whether your needs were recognised, acknowledged and supported by healthcare services and other organisations
- What information, resources and support would have been helpful during different stages of the cancer journey
- What healthcare providers and support services could do differently to better support families, friends and caregivers
- Any unmet needs or challenges you experienced while providing support
Your responses are anonymous and will help inform future awareness, education, support services, advocacy, research and policy relating to neuroendocrine cancer. By sharing your experience, you can help improve support for future families, friends and caregivers.
Who Is This Survey For?
For the purpose of this survey, a family member, friend or caregiver is anyone who has provided support to a person living with neuroendocrine cancer.
Support can take many forms, including:
- Emotional support, such as listening, encouraging and helping someone cope with their diagnosis
- Practical support, including shopping, transport, household tasks, childcare or managing everyday responsibilities
- Information and advocacy, such as attending appointments, helping interpret information, asking questions or supporting decision-making
- Administrative or financial support
- Personal care, including assistance with washing, dressing, eating, medications or mobility
You do not need to provide hands-on physical care to consider yourself a caregiver.
Many spouses, partners, parents, children, siblings, relatives and friends provide invaluable support and may experience significant impacts on their own lives as a result. Whether your involvement was occasional or extensive, short-term or ongoing, your experience matters.
If you have played any role in supporting someone living with neuroendocrine cancer, we would like to hear from you. Your experience can help us better understand the realities faced by families, friends and caregivers, and identify how support can be improved for others in the future.