Exploring spiritual/religious coping strategies among mothers of children with severe or profound intellectual disability during genetic counseling in Brazil

• Published in: Journal of genetic counseling 2024-08, Vol.33 (4), p.745-756
• Main Authors: Rodrigues, Stephania de Araújo, Carvalho, Ellen Zapparoli Nunes, Campos, Crispim Antonio, Fontanella, Bruno José Barcellos, Melo, Débora Gusmão
• Format: Article
• Language: English
• Subjects: Adult; Brazil; Child; Children; Children with disabilities; Content analysis; Coping Skills; Coping strategies; Cultural competence; Disability; Fate; Female; Genetic counseling; Genetic Counseling - psychology; God; Humans; Intellectual disabilities; intellectual disability; Intellectual Disability - genetics; Intellectual Disability - psychology; Intervention; Male; Medical genetics; Mothers; Mothers - psychology; Religion; Religiosity; Religious behavior; Resilience; Spirituality; Stressful events; Surrender
• ISSN: 1059-7700; 1573-3599; 1573-3599
• DOI: 10.1002/jgc4.1783

Parents use several coping strategies to deal with the challenges of caring for children with disabilities. This qualitative study explored the spiritual/religious coping strategies adopted by Brazilian mothers of children with severe or profound intellectual disabilities who were attending the medical genetics clinic for genetic counseling. Individual semi‐structured interviews were conducted with 15 participants, selected by convenience. Thematic content analysis was used to investigate the data. Five major themes were recognized: (1) spirituality/religion as a source of resilience; (2) surrender to God's plan; (3) a feeling of predestination; (4) children with a disability perceived/conceived as a blessing; and (5) pleading for divine intervention. Participants highlighted the ability to recover and adapt to bad circumstances and stressful events with God's support using spiritual/religious resources and practices. They attributed the cause and control of events in their lives to an external and transcendental source, showing themselves to be resigned to the condition of their child with a disability and his/her demands. The feeling of predestination appeared as a form of divine intervention as well as a way of attributing meaning to the situation. Their child with a disability was compared constantly to an “angel,” a celestial being created by God to be a messenger and fulfill divine purposes. From the participants' perspective, these coping mechanisms appeared to have helped them adjust to the situation. Spirituality and religiousness have become crucial in cultures such as Brazil, where religious practices, often highly syncretic, are common. A more detailed and comprehensive understanding of how spiritual/religious coping strategies are mobilized during the genetic counseling process can improve the cultural competence of genetic counselors and help guide proposals for more effective clinical interventions.