Caring for the Caregivers: An Investigation of FactorsRelated to Well-Being Among Parents Caring for a Childwith Smith-Magenis Syndrome

摘要

Abstract Smith-Magenis syndrome (SMS) is a complexdisorder characterized by numerous challenges, includingintellectual disability, speech delay, decreased pain sensi-tivity, sleep disturbances, hyperactivity, mood instability,and self-injury. Caregivers must readily adapt to the ever-changing needs of the child. Due to these demands,caregivers may encounter difficulties maintaining theirown level of well-being. Thus, a total of 112 primarycaregivers (i.e., parents) of individuals diagnosed with SMSresponded to online questionnaires to assess demographicand psychosocial factors, such as perceptions of childhealth vulnerability, benefit finding, sleep behaviors,anxiety and depression symptomatology, and caregiversatisfaction and self-efficacy, which may be related tocaregiver well-being. Results show that, among mothers,caregiver well-being was directly related to perceived childhealth vulnerability, caregiver satisfaction, and benefitfinding, and a significant moderating effect was observedfor depression/anxiety counseling after beginning thecaregiver role on the relationship between anxiety symp-tomatology and caregiver well-being. Results further suggest that maternal caregivers who report high levels ofanxiety but do not seek counseling fair the worst in terms ofwell-being. Among fathers, lower depression symptomsand greater benefit finding were related to higher levels ofcaregiver well-being. These data show that many factorsplay roles in influencing coping and well-being amongSMS caregivers. Investigating these variables and relation-ships may reveal additional resources and interventions toassist primary caregivers.