Impact of the family communication environment on burden and clinical communication in blood cancer caregiving

Abstract

Objective: We examined the effects of the family communication environment (conversation orientation) on adult child caregivers' burden and clinical interactions and if the effects are mediated by openness to communicate about cancer, avoidant cancer communication, and social support (SS).Method: Caregivers of a parent diagnosed with a blood cancer (N = 121) completed an online survey of validated measures of conversation orientation (i.e., the extent to which families openly communicate), SS, cancer openness, avoidance, caregiver burden, clinical communication skills, and quality of clinical interactions (QCI).Results: Conversation orientation had significant indirect effects on caregiver burden, mediated by SS (β = −0.11, p < 0.001), as well as cancer openness and avoidance (β = −0.07, p < 0.001). Conversation orientation also had significant indirect effects on caregivers' communication skills with a parent's clinician, mediated by avoidance (β = 0.08, p < 0.01) and SS (β = 0.06, p < 0.001). Finally, conversation orientation had significant indirect effects on caregivers' QCI mediated by avoidance (β = 0.71, p < 0.05). Conclusions: Adult child caregivers whose families communicate more openly exhibit less caregiver burden and report better clinical interaction skills and perceived quality of the clinical interaction. Avoidance emerged as a key mediating factor. Caregivers from less open communication environments may benefit from interventions that help them navigate challenging but critical caregiving conversations.

Understanding the Impact of COVID-19 on Chronic Lymphocytic Leukemia (CLL) Caregiving and Related Resource Needs

“…Ongoing care burden and distress can inhibit caregivers’ sense of control and ability to cope or engage in caregiving [ 33 ] and is also associated with less openness between caregivers and their diagnosed loved one [ 34 ]—effects that are all detrimental to disease management. CLL caregivers in the survey study indicated they need ongoing, reliable information from experts on COVID-19 risk that is specifically targeted to CLL patients.…”

Improving Clinical and Family Communication for Adult Child Caregivers of a Parent With a Blood Cancer: Single-Arm Pre-Post Pilot Intervention

“…Other interventions focus primarily on concepts and tasks such as mindfulness [ 38 , 39 ]; stress management [ 40 ]; patient symptom management [ 40 ]; and topics such as goal setting, planning, accessing family support services, and building problem-solving skills [ 41 ]. Our previous research has shown that adult child caregivers’ families who communicate more openly report less caregiver burden, better clinical interaction skills, and better perceived quality of the clinical interaction [ 17 ]. Interventions that help family caregivers hone their communication skills are a critical component to supporting caregivers as they navigate the difficulties of caring for a loved one with a blood cancer.…”

“…The Healthy Communication Practice is a self-paced, web-based program developed for adult children who care for a parent, parent-in-law, or stepparent currently living with a blood cancer (eg, leukemia, lymphoma, myeloma). Grounded in communication and education theories [ 18 - 25 ] and based on our extensive preliminary work (in-depth interviews and surveys) with cancer caregivers [ 14 - 17 ], this program teaches caregivers essential communication skills in eHealth literacy, clinical encounters, and family relationships. We teach concepts and skills to help caregivers navigate web-based cancer information, communicate with their parent’s doctors, find meaning in their caregiver role, and use open and supportive communication to strengthen relationships and facilitate communication within their family.…”

“…In our previous work [ 14 - 16 ], we identified communication challenges that adult children face when caring for a parent with a blood cancer that are uniquely complex, given their role and the relational shift that occurs when they take care of a parent who used to care for them [ 16 ]. Furthermore, our previous work demonstrates that these adult child caregivers commonly report caregiving communication skills deficits in navigating cancer information in web-based and clinical settings and in facilitating open and supportive communication within the family [ 14 , 16 , 17 ].…”

Young Adult Caregiving Daughters and Diagnosed Mothers Navigating Breast Cancer Together: Open and Avoidant Communication and Psychosocial Outcomes

“…The benefits of open communication in parent-child bonds after a cancer diagnosis may even extend to better clinical communication. For instance, when midlife adult child caregivers report more open communication with their parent diagnosed with a blood cancer, they also report better clinical communication experiences with their parent's clinicians [60]. While open communication may promote better biopsychosocial outcomes and disease adjustment both at home and in the clinic, studies informing the Family Communication Patterns Theory (FCP) have demonstrated that family relationships develop patterns or norms of communicating over their relational history that are characterized, in part, by how openly (or not) they communicate [61].…”