Easing the Burden: Describing the Role of Social, Emotional and Spiritual Support in Research Families with Li-Fraumeni Syndrome
| Autor: | Shannon Givens, Phuong L. Mai, Renee C. Bremer, Regina Kenen, Sharon A. Savage, June A. Peters |
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| Rok vydání: | 2015 |
| Předmět: |
Adult
Male 0301 basic medicine Organized religion Adolescent media_common.quotation_subject Genetic counseling Li-Fraumeni Syndrome Religiosity Young Adult 03 medical and health sciences Social support 0302 clinical medicine Humans Family Germ-Line Mutation Genetics (clinical) media_common Social Support Middle Aged Genes p53 humanities Distress 030104 developmental biology 030220 oncology & carcinogenesis Female Psychological resilience Psychology Psychosocial Stress Psychological Clinical psychology Qualitative research |
| Zdroj: | Journal of Genetic Counseling. 25:529-542 |
| ISSN: | 1573-3599 1059-7700 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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