Living with Fanconi anemia, or caring for someone with FA, brings ongoing uncertainty, complex medical experiences and emotional strain. These experiences affect more than physical health. They can also shape mental health, relationships, daily routines and a person’s sense of safety and connection.

The Fanconi Cancer Foundation is pleased to introduce the Mental Health and Wellbeing Toolkit, a new resource offering practical tools and trusted guidance for people living with FA and those who care for them.

Why this resource matters

Research is helping us better understand the mental health experiences of adults with FA. Nearly half of adults who participated in one recent study screened positive for symptoms of post-traumatic stress. Many also reported symptoms of anxiety and depression, along with fatigue, sleep disturbance, chronic pain and unmet mental health needs.

Caregivers and care partners may also carry significant emotional strain as they navigate complex care, repeated medical stress and uncertainty about the future.

These experiences can feel isolating, but no one should have to navigate them alone. Mental health support is an important part of caring for the whole person and the people who support them.

Practical tools for real-life needs

Developed in partnership with Give an Hour, the toolkit brings together research-informed guidance, community perspectives and exercises that can be used during everyday stress as well as more difficult moments.

The toolkit includes resources to help individuals and caregivers:

• Recognize signs of emotional distress
• Practice self-compassion and manageable forms of self-care
• Navigate isolation, grief and uncertainty
• Identify and strengthen support systems
• Talk with children about mental health
• Prepare for emotional or medical crises
• Find a mental health professional who understands trauma and medical complexity
• Explain FA-related experiences and care needs to a provider

The toolkit also includes worksheets that can be completed, printed or shared, including an emotions tracker, support system map, crisis response plan and mental health storyboards for individuals with FA and caregivers.

For moments when everything feels overwhelming, the toolkit begins with a simple PACE exercise: pause, act on one simple step, connect, engage in self-care and engage in extra support.

Use the toolkit in the way that works for you

You don’t need to read the toolkit from beginning to end. You might begin with one exercise, return to a section during a challenging time or share a provider resource with a counselor or member of your care team.

The toolkit is grounded in choice, pacing and safety. Some topics may bring up strong emotions, and it’s OK to pause, skip a section or reach out for support.

FCF advocates Erica Williams and Faith Barbe provided feedback to help ensure the resource reflects the experiences and needs of the FA community. Clinical and research experts also reviewed and contributed information. Finally, we thank partners Give An Hour for providing much of the resources we could adapt to the FA community.

We hope this toolkit helps you feel more prepared, more supported and less alone in whatever you’re carrying.

You can also visit FCF’s mental health webpage to learn about counseling, one-on-one coaching, research and other resources available to the FA community.

This toolkit is an educational and supportive resource. It isn’t a diagnostic tool or a substitute for individualized medical or mental health care. If you’re in the United States and experiencing emotional distress or need immediate support, call or text 988. If you’re outside the U.S., visit FindAHelpline.com.

The post New Mental Health and Wellbeing Toolkit Offers Practical Support for the FA Community appeared first on Fanconi Cancer Foundation.

Read the complete publications from this study:

FA Mental Health & Wellbeing Considerations: A Lay Summary

Mental health in the first generation of adults with Fanconi anemia 

‘‘I would love to talk to someone that actually understands’’: Psychosocial experiences of adults with Fanconi anemia

Overview of Psychosocial Experiences in Adults with Fanconi Anemia

The Psychosocial Experiences of Adults with Fanconi Anemia: A Participatory Mixed-Methods Research Study offers valuable insights into the mental health of adults with FA. The study, led by Drs. Megan Voss and Kathleen Bogart with an advisory council of FA adults, was funded by FCF in 2022. The study highlights that adults with FA report significantly poorer health-related quality of life compared to the general population. This includes higher rates of anxiety, depression, fatigue, sleep disturbance, and pain, as well as challenges related to cognitive function, physical function, and social participation.

One of the study’s key findings is that half of the participants screened positive for symptoms of post-traumatic stress disorder, with 33% screening positive for anxiety and 25% for depression. Additionally, 44% reported a known mental health disorder at some point in their lives, and half of those were currently experiencing active symptoms. Finally, 15% believed they were experiencing symptoms of a mental health disorder but had not been diagnosed with one. These findings highlight the high prevalence of mental health concerns within our community and the critical need for increased mental health support and screening by licensed professionals.

Understanding the Experiences of Family Caregivers

While this study focused on adults with FA, it is essential to acknowledge the experiences of family caregivers as well. Research on cancer caregivers shows that their mental health is closely linked to the health of the person they care for. When their loved ones receive mental health care, caregivers are three times more likely to access mental health support themselves (Litzelman, et al., 2021). Caregiving is an immense responsibility.

The burden of caregiving can lead to significant mental health challenges, with caregivers reporting higher rates of anxiety and depression than non-caregivers (Cleveland Clinic, 2022). Although we lack specific data on FA caregivers, we can infer from our community that they face similar challenges and need mental health support just as much as those they care for. Additional research focused specifically on caregivers is needed.

Summary of Evidence-Based Interventions to Support Mental Health & Well-Being

While there is much more to learn about the mental health challenges faced by the FA community, there are strategies that can be helpful. By addressing psychosocial factors, managing physical symptoms, and utilizing mental health interventions, the hope is to reduce the risk of individuals with FA developing mental health diagnoses.

Taking a whole-person approach to caring for individuals with FA and their caregivers is the most effective way to both modify risk and enhance overall well-being. This approach is best understood in the context of a broad definition of well-being, such as the one depicted in the model from the University of Minnesota. Well-being includes being happy and healthy in the broadest sense—not just physically, but also mentally, emotionally, and spiritually. It is possible for a person to experience significant physical health challenges yet still maintain high levels of well-being. Well-being is a state of being in balance or alignment, encompassing feelings of contentment, peace, purpose, harmony, and safety (University of Minnesota, 2024).

This model of well-being identifies six domains that impact mental health: health, purpose, relationships, community, security, and environment. The strategies recommended in this study can help enhance well-being by focusing on these domains.

At FCF, we are committed to prioritizing mental health as we continue to foster a supportive and resilient community.

We encourage you to explore the published studies at the top of this page, where you can find detailed evidence-based recommendations and insights to support mental health and well-being within the FA community. The report breaks down strategies into three practical levels, including those that can be done at the individual level, with the support of the local community, and with the support of one’s healthcare team. Individuals with FA and their family caregivers can advocate for themselves by providing their local providers with this information.

Furthermore, five key themes emerged from the research, which provide deeper insights into the mental health experiences of adults with FA:

1. Living with FA is a full-time job: Managing FA is a constant, all-encompassing task that requires ongoing attention and effort.
2. Struggling to find and access mental health care: Many adults with FA experience difficulties in finding mental health professionals who understand their unique needs, let alone their chronic illness.
3. Facing stigma and isolation: Stigma and trauma take a toll on mental health. Discrimination, body image issues, gender norm violations, isolation, and healthcare trauma can lead to mental health symptoms.
4. Grief, loss, and community connections: Connecting with the FA community has many benefits, but it can also involve grief when friends encounter serious medical problems.
5. Finding ways to cope and stay optimistic: Despite the challenges, many individuals with FA use various strategies to cope, such as staying occupied, cultivating optimism, and embracing their uniqueness.

These findings emphasize the need for tailored mental health care and the importance of trauma-informed support. Because individuals with FA often live far from FA Centers of Excellence, these findings also underscore the need for collaboration with local primary care providers, oncology teams, and mental health professionals.

The post Mental Health and Wellbeing for Individuals with FA and Caregivers: Key Insights and Recommendations from Research appeared first on Fanconi Cancer Foundation.