Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li‐Fraumeni Syndrome

Abstract

This study presents findings of a mixed-method descriptive exploration of the role of friends and spirituality/religiosity in easing the burden of families with the rare inherited disorder, Li-Fraumeni Syndrome (LFS). LFS is caused by germline mutations in the TP53 gene and is associated with very high lifetime risk of developing one or more malignancies. During the first clinical visit we assessed several types of social support among a subset of study participants (N = 66) using an established interactive research tool called the Colored Eco-Genetic Relationship Map (CEGRM). We performed both quantitative and qualitative analyses of social relationships with LFS family members and close non-kin. Distress scores (N = 59) were mostly low normal, with some outliers. We found that reported friendships varied widely, that the friendships were often deep and enduring, and were important sources of informational, tangible, emotional and spiritual support. Confidantes tended to be best friends and/or spouses. Organized religion was important in selected families, typically from mainstream traditions. However, a number of people identified themselves as "spiritual" and reported spiritual and humanist explorations. Our results shed preliminary light on how some people in families with LFS cope in the face of tremendous medical, social and emotional challenges.

Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature

“…In one study, parents of children with cancer gave higher value ratings to the involvement and availability of a spiritual mentor ( P = 0.03) in their family's care than clinician ratings of the role of a spiritual mentor for a family . In another study, some families received relational support through their spiritual or religious community . Spiritually supportive conversations were viewed as helpful or supportive by family members of children with cancer in individual studies.…”

“…3,[38][39][40][41][42][43] Spirituality was defined as religion or religious coping and religious beliefs in five studies 35,[44][45][46][47] and as seeking a higher power or the divine in three studies. 46,48,49 In three studies, posttraumatic were depicted as part of the spiritual process during pediatric cancer treatment. 39,50,51 Wellness and personal reflection practices, such as yoga and mindfulness, were common forms of integrating one's spirituality into daily life.…”

“…41,42,46,51,52 Only one study specifically investigated the psychosocial/spiritual needs of families of culturally diverse backgrounds. 42 Study tools included depression and anxiety scales 38,43,45,65 ; burnout 59 or burden scales 54 ; trauma, posttraumatic stress or resiliency, or grief scales 36,51,54 ; relational scales 49,54 ; benefit or coping scales 54 ; symptom inventory, illness impact, or functional assessments 49,54,55,58 ; hope scales 32,61 ; and quality-of-life metrics. 32…”

The psychosocial effects of the Li-Fraumeni Education and Early Detection (LEAD) program on individuals with Li-Fraumeni syndrome

“…Further research should investigate screening’s impact on the family, since familial support is important to many cancer patients. 12, 23 Relatedly, many participants have children that are enrolled in the pediatric LEAD program. It would be beneficial to interview these children to learn about the psychosocial impact of screening on children.…”

“…11 It has also been reported that individuals with LFS feel that their diagnosis is always on their mind and their anxiety and distress can increase dramatically during a personal or family medical crisis. 12 …”