Caring for a child, particularly one with a rare disease, presents a challenging set of stressors that can impact entire family networks. Given this shared impact, caregivers can engage in communal coping to address the caregiving process, defined as the perception of caregiving as shared and collaborative behaviors to address it. In this study, we examined one common measure of communal coping—first person plural pronouns or “we-talk”—in caregivers of either (a) children with rare or undiagnosed diseases or (b) typically developing children. We sought to examine how we-talk is linked to (a) caregiver health and well-being and (b) social network involvement in caregiving. Caregivers (n = 311) participated in (a) survey questionnaires (b) a network enumeration interview and (c) a semistructured interview of caregiving. Results indicated we-talk was unrelated to stress or self-rated health, but was linked to more benefit-finding; greater individual-focused language (I-talk) was also linked to worse self-rated health. Additionally, we-talk was unrelated to malfeasant behavior (e.g., overly critical), but was linked to less nonfeasant behavior (e.g., underinvolvement), more uplift behavior (e.g., helping with caregiving), and more health-related communication with network members. Further, these findings did not differ across caregiving context. This work highlights the role of communal coping for caregivers managing general parenting stress as well as the stress associated with caring for a child with complex medical needs. Future research should continue to examine how interpersonal coping processes operate within social networks to impact health and well-being for all involved.
With the expansion of newborn screening conditions globally and the increased use of genomic technologies for early detection, there is a need for ethically nuanced policies to guide the future integration of ever-more comprehensive genomics into population-based newborn screening programs. In the current paper, we consider the lived experiences of 169 family caregivers caring for 77 children with NBS-related conditions to identify lessons learned that can inform policy and practice related to population-based newborn screening using genomic technologies. Based on caregiver narratives obtained through in-depth interviews, we identify themes characterizing these families’ diagnostic odyssey continuum, which fall within two domains: (1) medical management implications of a child diagnosed with an NBS-related condition and (2) psychological implications of a child diagnosed with an NBS-related condition. For Domain 1, family caregivers’ experiences point to the need for educational resources for both health care professionals that serve children with NBS-related conditions and their families; empowerment programs for family caregivers; training for providers in patient-centered communication; and access to multi-disciplinary specialists. For Domain 2, caregivers’ experiences suggest a need for access to continuous, long-term counseling resources; patient navigator resources; and peer support programs. These lessons learned can inform policy recommendations for the benefit of the child, the family, the healthcare system, and society.
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