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Simple Summary: Adult children in midlife often become their aging parent's caregiver after a blood cancer diagnosis. Navigating this role reversal during midlife is an additional challenge. Adult children juggle multiple roles (as spouse, parent, and professional). Blood cancer caregiving also involves unpredictable challenges. These challenges can make communicating even more complex. We explored what adult-child caregivers do to enhance their family's communication and what they struggle with when talking to diagnosed parents. A total of 124 adult-child caregivers participated in an online survey. Results showed that caregivers perceive that family communication is enhanced when they communicate openly and frequently. They use technology to maintain contact, facilitate connectedness, share information, and encourage involvement. Diagnosed parents and their adult children struggle with being open. Yet, when they communicate more openly about cancer with family, they have more support. Interventions could help caregivers take the lead in facilitating openness and support after their parent's blood cancer diagnosis. Adult-child caregivers of an aging parent living with a blood cancer describe struggling to communicate with one another and within the family system. They may avoid critical care conversations, which may impede care and their ability to receive social support. We examined what approaches adult-child caregivers of a parent diagnosed with a blood cancer use to enhance their family communication, the topics they find most challenging to discuss, and the roles of openness and support. We used qualitative and quantitative approaches to analyze data from a larger online survey study. In partnership with the Leukemia & Lymphoma Society, we recruited 121 adult-child caregivers. Responses to one open-ended item were analyzed to capture strategies used to enhance communication with their parent and family. They reported utilizing digital communication modalities, prioritizing frequent communication, engaging in openness, establishing boundaries, kinkeeping, and enacting support. Within the quantitative data, we further explored two of these themes (openness and support) and their relationships to other variables using t-tests and regression analysis. Adult-child caregivers and diagnosed parents avoid talking about mortality and negative feelings. Openness in the family about cancer was linked to caregivers' perceptions of receiving social support. Findings demonstrate that cultivating openness between midlife adult children and diagnosed parents may enhance opportunities to receive support. [ABSTRACT FROM AUTHOR] more...

Chronic lymphocytic leukemia (CLL) caregivers play a central role in disease management—a role that has been heightened during the COVID-19 pandemic given the healthcare system's reliance on frontline family caregivers and CLL patients' increased risk of infection and mortality. Using a mixed-method design, we investigated the impact of the pandemic on CLL caregivers (Aim 1) and their perceived resource needs (Aim 2): 575 CLL caregivers responded to an online survey; 12 spousal CLL caregivers were interviewed. Two open-ended survey items were thematically analyzed and compared with interview findings. Aim 1 results showed that two years into the pandemic, CLL caregivers continue to struggle with coping with distress, living in isolation, and losing in-person care opportunities. Caregivers described experiencing increasing caregiving burden, realizing the vaccine may not work or didn't work for their loved one with CLL, feeling cautiously hopeful about EVUSHELD, and dealing with unsupportive/skeptical individuals. Aim 2 results indicate that CLL caregivers needed reliable, ongoing information about COVID-19 risk, information about and access to vaccination, safety/precautionary measures, and monoclonal infusions. Findings illustrate ongoing challenges facing CLL caregivers and provide an agenda to better support the caregivers of this vulnerable population during the COVID-19 pandemic. [ABSTRACT FROM AUTHOR] more...

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. [ABSTRACT FROM AUTHOR] more...

Purpose: Pediatric blood cancer diagnosis is a stressful experience for families as it can involve urgent treatment that can be life-threatening and require extended hospital stays. Little is known about the experiences of parent caregivers of children with a blood cancer during the diagnosis period and how families' needs may differ in light of the patient's developmental phase in the life span. Methods: We conducted semistructured in-depth interviews with 20 parent caregivers (aged 30–65) of children diagnosed with a blood cancer, recruited through The Leukemia & Lymphoma Society's (LLS) constituency. Interview transcripts were thematically analyzed using the constant comparative method. To elucidate similarities and differences in caregiving experiences, findings were compared across parents with children diagnosed in three developmental periods: infancy-early childhood, age 0–6 (n = 9); pre-early adolescence, aged 9–14 (n = 5); and late adolescence-emerging adulthood, aged 16–27 (n = 6). Results: Across all developmental periods, parents described three similar caregiving experiences during the diagnosis period: being persistent to obtain a diagnosis, attending to the child's quality of life challenges, and attending to their other children's well-being. Among caregivers of younger children, persistence was motivated by parental intuition and challenges included coping with traumatic physical and psychological impacts of treatment procedures. For caregivers of late adolescents-early adults, persistence was motivated by the child's self-assessment and fertility-related concerns emerged. Conclusion: Results illustrate core issues for parent blood cancer caregivers and highlight ways to tailor supportive resources that facilitate good communication practices and shared decision-making to children's distinct developmental needs. [ABSTRACT FROM AUTHOR] more...

Introduction: An older parent's blood cancer diagnosis impacts the entire family system, including adult siblings, an often overlooked subsystem of the family. Yet, adult siblings are typically involved in their parents' care needs. We explored sibling-related experiences adult child caregivers identify while caring for a parent diagnosed with a blood cancer to capture information useful for caregiving intervention development. Method: Fifteen adult child caregivers with at least 1 sibling participated in an in-depth, semistructured interview. Participants were 87% white and 80% daughters. A majority of caregivers were in midlife (M age = 44), with parents diagnosed between age 56 and 90. A thematic analysis was conducted on transcripts using the constant comparative method. Results: Caregivers described 3 types of sibling-related experiences that centered on (a) caregiving responsibilities (e.g., sharing/not sharing tasks; challenging feelings about lack of involvement); (b) expectations about the caregiver role (e.g., gender, family status, and birth order expectations); and (c) coping together and apart (e.g., receiving information together, enhanced relationships, divergent maladaptive coping). Discussion: Findings illustrate how a parent's blood cancer diagnosis can enhance the sibling bond and family system as well as contribute to tension, particularly regarding the experiences of not sharing caregiving tasks or having divergent approaches to coping. Findings also provide insight into areas in which supportive interventions or resources are needed (e.g., helping siblings talk about caregiving involvement) to promote healthy family functioning after a blood cancer diagnosis. Public Significance Statement: Findings from this study highlight how the sibling subsystem is affected when a parent has been diagnosed with a blood cancer. Siblings can face challenges they must negotiate (e.g., sharing caregiving responsibilities) while also encountering enhanced closeness as they cope together. Societal expectations or norms (i.e., gendered roles) inform siblings' caregiving experiences and reflections on their own and their siblings' involvement (or lack thereof) in their parent's caregiving. [ABSTRACT FROM AUTHOR] more...