“Be Prepared if I Bring It Up:” Patients’ Perceptions of the Utility of Religious and Spiritual Discussion During Genetic Counseling

Abstract

As debates continue about the relevance of religion to health care, research is needed to guide decisions about whether genetic counselors (GCs) should routinely address religious and/or spiritual (R/S) issues with their patients. We conducted an online survey to gauge patient perspectives on this issue. Among the 70 respondents, frequencies of closed-ended responses and thematic analyses of open-ended responses revealed multiple patient concerns related to R/S discussions with GCs. Although 60 respondents reported being R/S, only a small minority would want to discuss R/S issues if it meant less time discussing medical information. Most respondents also expressed opinions that: 1) genetic counseling should be about science; 2) GCs are not qualified to discuss R/S issues; 3) other outlets are available to meet the needs of patients who want R/S counseling; and/or 4) R/S discussions are more likely to be acceptable if patients broach the topic or in specific circumstances (e.g., when patients are facing end-of life issues). Overall, responses suggest routine or comprehensive R/S assessments or discussions are not necessary and that GCs would be best equipped to help all their patients if they were prepared to listen, be supportive, and make referrals when R/S issues arise in clinic.

Telehealth genetic services during the COVID‐19 Pandemic: Implementation and patient experiences across multiple specialties in Nebraska

“…Thus, this difference may reflect limited genetic provider training when it comes to assessing spiritual needs rather than a limitation of telehealth genetic services (Murray et al, 2020). Additional literature suggests that patients primarily use religious or spiritual language to assist in decision-making and coping, which may not be a key element in telehealth genetic appointment across all specialties (Sagaser et al, 2016;Thompson et al, 2016). Furthermore, half our participants now prefer to receive genetic services via telehealth.…”

The Relationship Among Spirituality, Self-Efficacy, COVID-19 Anxiety, and Hopelessness During the COVID-19 Process in Turkey: A Path Analysis

“…The COVID-19 pandemic has led to increased interest in investigating the role of religion and spiritual resources for responding to and coping with the pandemic in various societies (Achour et al, 2021 ). Research before the pandemic showed belief in a higher power, prayer, and meditation to have positive effects in times of crisis (Thompson et al, 2016 ; Koenig, 2012 ; Sagaser et al, 2016 ). Myers et al ( 2000 , p. 252) defined spirituality as “an awareness of a being or force that transcends the material aspects of life and gives a deep sense of wholeness or connectedness to the universe.” They also stated spirituality to include elements such as hope, meaning/purpose of life, meditation and prayer/worship, compassion, altruism, values, belief in the existence of a supreme power, and transcendence.…”

Genetic counseling graduate training to address religion and spirituality in clinical practice: A qualitative exploration of programs in North America

“…Bartenbaker surveyed 70 patients who had genetic counseling in various specialties and found that 40 (57%) of the patients indicated that genetic counselors (GCs) should be trained to discuss R/S topics. Twenty-five (42%) of the 60 patients who identified as R/S indicated that they would have liked to discuss with their GC how their R/S beliefs related to the reason for referral (Bartenbaker Thompson et al, 2016). This study concluded that GCs should be prepared to have R/S conversations with their patients (Bartenbaker Thompson et al, 2016).…”

“…As patients navigate the complexities of genetic disease, a variety of coping techniques may be called upon. In times of crisis, it is common for people to look to their religious and/or spiritual (R/S) beliefs for support (Bartenbaker Thompson et al, 2016;.…”

“…Considering that 76% of the GCs in the Reis et al (2007) study indicated that the R/S conversations they had in clinic were initiated by the patient, GCs should be prepared to engage meaningfully in these conversations when they arise. GCs also need sufficient insight into R/S matters to refer patients to pastoral care resources, as necessary (Bartenbaker Thompson et al, 2016;McCarthy Veach et al, 2018;.…”