Abstract
This exploratory survey study used quantitative and qualitative analyses to (a) identify challenges communicating with siblings that adult child caregivers of a parent with a blood cancer encounter and (b) examine how these challenges are related to caregivers’ burden, social support, family openness, and clinical communication quality. A total of 95 caregivers with siblings participated in an online survey. We conducted a qualitative content analysis on an open-ended response to understand their challenges and statistical analyses on responses to validated scales to examine associations between the challenges and psychosocial/communication outcomes. Caregivers encountered nine challenges communicating with siblings (lack of agreement and competing obligations). Caregivers’ family openness, social support, and caregiver burden differed based on several challenges. The number of siblings was linked to poorer outcomes (burden). Adult child caregivers face sibling-related challenges, which may inhibit their communication and well-being.
Introduction
More than 40 million individuals, typically family members, care for a loved one aged 50 or older, with more than half of these caregivers providing care during their midlife years (AARP & National Alliance for Caregiving [NAC], 2020). Many of these midlife family caregivers are caring for loved ones diagnosed with a blood cancer. In 2021, about 200,000 people were diagnosed with a blood cancer in the United States (Leukemia & Lymphoma Society, 2021, p. 2) . Of these, almost half were diagnosed with a form of lymphoma and about a third were diagnosed with a type of leukemia (Leukemia & Lymphoma Society, 2021, p. 2). While some blood cancers are acute, requiring immediate treatment and hospitalization, other blood cancers are chronic and slow in progression, meaning individuals manage the disease for years and for the rest of their lives (Mayo Clinic, 2023).
Family caregivers are often the primary source of support to individuals living with cancer (Fenton et al., 2022; García-Carmona et al., 2021; Lund et al., 2014). The demands of caregiving are complex and can be debilitating and challenging. Caregiving duties typically involve activities of daily living (ADLs; e.g., assistance with meals or mobility), and care strain varies depending on the cancer type or disease characteristics, how quickly treatment is needed, and how complex the medical care needs are (Kim & Schulz, 2008; NAC, 2016; Sherwood et al., 2008). More than half of caregivers report a high level of burden (AARP & NAC, 2020; Fenton et al., 2022; Kim & Schulz, 2008), which can inhibit their ability to maintain self-care, including socializing and engaging in activities they enjoy (Applebaum, 2019). Caregivers also describe numerous unmet psychosocial, medical, and financial needs, which can negatively impact their quality of life and mental health (Kim et al., 2010; Wang et al., 2018). Some studies further demonstrate that caregiver burden can result in negative physical effects like higher blood pressure (Sherwood et al., 2008).
How caregivers are faring and managing their caregiving demands is also, in part, related to how they communicate in their family relationships. As Sherwood et al. (2008) argued, “relationships within family members may serve to either increase or decrease the stress response” (p. 992). While family-related challenges play a role in caregivers’ burden, studies have focused primarily on spousal cancer caregiving (Ahn et al., 2020; Harris et al., 2009) or caregivers’ individual needs and/or experiences as adult children (Kent et al., 2016; Teixeira & Pereira, 2014). A family systems theoretical lens suggests that cancer care impacts the broader family system, warranting an exploration of other family bonds, like adult sibling relationships (Bagautdinova et al., 2022; Cheung et al., 2020; Fingerman & Bermann, 2000). Still, the impact of family functioning on cancer caregivers has typically focused on diagnosed children and their siblings (Ahn et al., 2020; Cheung et al., 2020; Harris et al., 2009; Kent et al., 2016). Little is known about how adult child caregivers’ adult sibling relationships may impact their caregiving experiences and role (Connidis & Campbell, 1995; Dionne-Odom et al., 2019).
Siblings, Social Support, and Caregiving
The sibling bond is one of the longest and most connected family relationships one experiences, which can also function as a critical source of support for adults as they age across the lifespan (Cicirelli et al., 1992; Gilligan et al., 2020). Sibling-related caregiving scholarship is quite limited, with cancer caregiving studies largely overlooking sibling dynamics, exclusive of when the adult caregiver is providing care to a sibling (Gibbons et al., 2019) or sibling dynamics during youth when a child is diagnosed with pediatric cancer (e.g., Katz et al., 2018). Of the limited research that exists on caregiving and siblings, findings capture challenging family dynamics and tensions. For instance, cancer caregivers have described encountering relational tension about their role with other siblings that is related to both the caregiver’s role strain and siblings’ conflicting perspectives on their parent’s care (Benson et al., 2023; Stone et al., 2012). In addition, caregivers of parents with dementia also report tension with siblings related to their perception of whether they had any choice in fulfilling the caregiver role (Tatangelo et al., 2018). Furthermore, even when cancer caregivers feel it is their filial obligation to provide care to their ailing parent, they describe resentment toward siblings (Juarez et al., 2014). Caregiving daughters of aging parents also describe their siblings sometimes functioning as a key source of support as secondary helpers, but not without tension or challenges (Briggs, 2014).
Only one study has been conducted on blood cancer caregiving and adult sibling experiences and found that adult child caregivers of diagnosed parents described three sibling-related experiences that include benefits but also challenges when navigating caregiving conversations (Bagautdinova et al., 2022). For instance, they shared how their parent’s diagnosis resulted in opportunities for the siblings to cope together, which enhanced their relationship. At the same time, they described challenges tied to feeling over-burdened by their sibling’s lack of involvement in care responsibilities but also offered explanations or expressed understanding of why their sibling was not involved (e.g., they lived geographically distant). They encountered tension related to their role strain and expectations, noting that birth-order (first born) and gendered role expectations (daughter) informed why they, and not their sibling, became the primary caregiver.
While the sibling bond impacts blood cancer caregivers’ experiences, no studies to date have investigated the challenges that arise when communicating with their siblings or the impact of such challenges on caregivers’ psychosocial outcomes, like care burden (Gérain & Zech, 2019) and perceptions of social support (Guan et al., 2021). Furthermore, caregivers’ challenges when communicating with siblings may also be tied to how they communicate in the family and with their parent’s clinicians. For instance, when families communicate more openly about cancer, they also report feeling more supported and that they have better communication with their diagnosed loved one’s clinicians (Shin et al., 2015; Wittenberg-Lyles, Buller, et al., 2017).
Supporting Adult Child Cancer Caregivers
The Association of Oncology Social Work (AOSW) and the American Psychosocial Oncology Society (APOS) have jointly advocated for family caregiver-targeted resources that promote their ability to engage in their care role and reduce their burden and psychological distress, which may also promote better patient health outcomes (Deshields et al., 2021). Although communication skills trainings or interventions have been argued for clinicians (Deshields et al.), while scarce, family caregivers’ can also benefit from communication skills resources that promote their ability to navigate challenging conversations (Bylund et al., 2022; Wittenberg-Lyles, Ferrell, et al., 2017).
Caregivers’ communication and relationship with siblings warrants careful consideration in developing such resources to attend to sibling-related challenges and promote their ability to communicate effectively to obtain support. To inform the development of targeted resources, further exploration of adult child caregivers’ sibling-related experiences is needed. With this long-term goal for resource development in mind, we explored the following research questions:
Methods
To conduct this exploratory study, we utilized a survey method design and conducted both qualitative and quantitative analyses of data. Participants (i.e., adult child caregivers) completed an online survey about their experiences caring for a parent diagnosis with a blood cancer, which involved responding to both validated scales and open-ended items.
Participants and Recruitment
To be included in the study, participants had to (a) be 18 years old and self-identify as a caregiver of a living parent, stepparent, or parent-in-law with a blood cancer; (b) have a parent diagnosed at least 3 months prior who was either in treatment or had completed treatment within the last 12 months; and (c) have at least one sibling. Upon receiving Institutional Review Board (IRB) approval, caregivers were recruited via email through The Leukemia & Lymphoma Society’s (LLS) constituent database and online community site for patients and caregivers as well as via social media advertising.
Procedures
A recruitment email was disseminated to caregivers in LLS’s database. Interested caregivers were directed to an online Qualtrics survey for eligibility screening. If eligible, they gave consent before completing an online survey between March 30 and June 2, 2020. Participants were compensated $25.
Survey Measures
The survey included demographics, open-ended items, and several validated measures. Descriptive statistics and Cronbach’s alpha reliabilities are reported for all quantitative measures below.
Caregiver Burden
Burden was measured using the 12-item Zarit Burden Questionnaire Short Form (Bédard et al., 2001). Items were rated on a 5-point scale of (1) “Never” to (5) “Nearly Always,” with higher scores indicating increased caregiver burden. These items formed a reliable scale (α = 0.91; M =2.65; SD = 0.89).
Openness
Openness about cancer between caregivers and their diagnosed parent was measured using the 4-item Openness to Communicate about Cancer in the Nuclear Family scale (Mesters et al., 1997), in which higher scores indicate more openness. These items formed a reliable scale (α = 0.75; M = 3.12; SD = 0.92).
Social Support
The 8-item Functional Social Support Questionnaire was used to assess the amount of social support caregivers received while caring for a parent with a blood cancer (Broadhead et al., 1988). Items were rated on a 5-point scale of 1 = “Much less than I would like” to 5 = “As much as I would like,” with higher scores indicating receiving more social support. These items formed a reliable scale (α = 0.91; M = 3.68; SD = 1.03).
Clinical Communication
Caregivers who reported they attended their parent’s clinical visits responded to the 12-item Questionnaire on the Quality of the Physician-Patient Interaction (Bieber et al., 2010). Items were modified to make it cancer and caregiver specific and rated on a 5-point scale of 1 = “Strongly disagree” to 5 = “Strongly agree,” with higher scores indicating high-quality physician–caregiver interaction. These items formed a reliable scale (α = 0.95; M = 3.99; SD = 0.79).
Sibling-Related Communication Challenges
Caregivers responded to one open-ended item: “What challenges have you encountered communicating with your siblings/stepsiblings about your parent’s care since your parent’s diagnosis?”
Data Analysis
To answer RQ1, we conducted a qualitative content analysis on responses to the open-ended item. One author (CNH) reviewed all data to develop a preliminary analysis that identified broad categories, which was overseen by a caregiving communication expert (CLB). Responses were constantly compared to revise and collapse codes into categories. Once a preliminary codebook was developed, the senior author, an expert in qualitative analysis and caregiving communication (CLF), then conducted an inductive and deductive analysis of all open-ended responses to develop and refine a final set of themes, while calculating frequencies to ensure saturation. To enhance rigor and validate the analysis, an additional author (DB) used the finalized codebook to deductively analyze 50% of the dataset, meeting with the senior author to compare and collapse any discrepancies in coding. To answer RQs 2 to 4, SPSS version 26 was used to analyze scale data using independent samples t-test and regression.
Results
This exploratory, survey method study drew upon a larger online survey that included 121 participants that was aimed at understanding adult blood cancer caregivers’ experiences (Campbell-Salome et al., 2022; Fisher et al., 2021). As noted, only caregivers with siblings were included in the current analysis (N = 95).
Demographics
Caregivers ranged in age from 20 to 66 years old (M = 44.87; SD = 11.37) and reported caring for parents with a blood cancer ranging in age from 48 to 95 years old (M = 72.0; SD = 11.37). Participants reported caring for a parent with an acute form of blood cancer (e.g., acute myeloid leukemia) (40.0%), a chronic form of blood cancer (e.g., chronic lymphocytic leukemia) (14.7%) and myeloma (2.1%). Participants self-identified as white (72.6%), Black or African American (7.4%), Asian (8.4%), American Indian or Alaska Native (3.2%), and Native Hawaiian or Pacific Islander (2.1%). Participants identified their ethnicity as Hispanic (15.8%) or Not Hispanic (75.8%). Participants indicated their highest level of educational attainment as high school graduate or received a General Educational Development (GED) (7.4%), some college (9.5%), 2-year degree (7.4%), 4-year degree (34.6%), master’s degree (27.4%), professional degree (2.1%), or doctorate (5.3%). Participants reported being employed full-time (58.9%), employed part-time (8.4%), self-employed (4.2%), not employed (11.6%), or retired (8.4%).
Participants indicated their relationship to the parent with blood cancer as son/stepson/son-in-law (16.8%), daughter/stepdaughter/daughter-in-law (73.7%), and other (1.1%). Participants also reported having 0 to 6 children (M = 1.08, SD = 1.27) and, specifically, having 0 to 4 children under the age of 18 (M = 0.90; SD = 0.98). Participants reported being single or never married (23.2%), married or with a domestic partner (50.5%), widowed (3.2%), divorced (11.6%), and separated (3.2%). For sibling or stepsibling relationships, participants reported having 0 to 7 siblings/stepsiblings (M = 2.29; SD = 1.47). In terms of their frequency of accompanying their parent to clinical visits, participants reported “always” (37.9%), “most of the time” (24.2%), “about half the time” (11.6%), “sometimes” (17.9%), and “never” (4.2%).
Qualitative Findings: Communication Challenges With Siblings
A total of 94 caregivers responded to the open-ended item capturing their communication challenges with siblings (RQ1). Caregivers’ responses ranged from 1 to 224 words (M = 39.02 words). Caregivers described nine categories of communication challenges with siblings: (a) managing multiple siblings; (b) limited (or lack of) involvement; (c) openness dilemmas and tensions; (d) lack of understanding; (e) relational tensions; (f) lack of agreement; (g) geographic distance; (h) competing obligations; and (i) financial issues. See Table 1 for an extended display of data illustrating findings (Cloutier & Ravasi, 2021).
Adult Child Caregivers’ Communication Challenges Encountered With Their Siblings After a Parent’s Blood Cancer Diagnosis.
Managing Multiple Siblings
Caregivers’ resp-onses reflected the complexities of having to communicate with multiple siblings on a variety of caregiving-related issues (n = 32). This included talking about care decisions, finances, and dividing responsibilities. This caregiver response illustrated this: Since I am often the one that communicates with the doctor, it’s hard to always provide an update to them on the status of her care and treatment. I can convey what took place, but they often have additional questions which may not be relevant but then express frustration that I don’t have all the responses. (P46)
Limited (or Lack of) Involvement
Caregivers shared struggles when siblings did not help (n = 22). These adult children responded that at least one sibling was completely “unwilling to help care for [the parent],” only provided limited support, or not as much help as the caregiver needed. This caregiver wrote, “My sisters occasionally have my mother come to visit but provide no additional support. When I asked for help, . . . they thought I was trying to take advantage of them” (P33).
Openness Dilemmas and Tensions
Caregivers also described struggles with communicating openly (n = 18). This included dilemmas of whether to share information with their sibling as well as challenges related to their sibling(s)’ inability to communicate openly about cancer (e.g., “he shuts down and won’t discuss it”). Caregivers shared that they wanted to share information but also wanted to buffer siblings from distress: “I find it challenging to always keep my siblings appraised of her clinical status. Sometimes I do not want them to worry about her, especially if I am concerned about their ability to cope with the information” (P6).
Lack of Understanding
Caregivers shared challenges when siblings did not understand their parent’s experience (n = 16). This included the sibling not understanding medical issues (e.g., “[explain] 3-4 times in layman’s terms”) or not understanding the reality of their parent’s diagnosis and needs (e.g., sibling is “in denial; [not] wearing protective mask covering when visiting [parent] with compromised immunity due to her CLL”). They also shared how siblings did not understand the caregiver’s situation in relation to their diagnosed parent’s needs: “My brothers don’t realize how much assistance she needs. She doesn’t like to complain and tries to hide her struggles” (P15).
Relational Tensions
Caregivers encountered relational tensions related to sibling bonds (n = 12). This included tension or conflict between siblings themselves and between the diagnosed parent and their other children. Caregivers wrote about “resentment among siblings,” past relational issues, as well as how their care burden contributed to conflict: “Sometimes the stress of long hospitalizations makes my sister and I argue with each other” (P18). Caregivers also shared struggles due to their parent’s tensions with siblings: At the time of my father’s diagnosis, my sister was living at home with my parents. She believed herself to be an asset and my parents saw her as a distraction. She was making living in their own home more difficult. As a result, my sister now lives with me and my partner to give my parents some space, but I’m not sure that the real reason has ever been communicated to her. (P12)
Lack of Agreement
Caregivers wrote about struggles when siblings did not agree about care-related matters (n = 9). This included disagreement on “decisions . . . about [parent’s] treatment plan,” “the best care for [the parent],” and “[parent’s] needs.” As this caregiver wrote, a lack of consensus among siblings posed challenges: “It’s been tough to accept decisions that are being made about my dad’s treatment plan, especially if myself or my siblings don’t agree on it” (P4).
Geographic Distance
Caregivers noted challenges given geographic distance in terms of where they, their diagnosed parent, and their siblings lived (n = 8). Some caregivers responded they encountered sibling-related challenges because a sibling resided in a different area. This challenge also informed present and future care dilemmas, as this caregiver wrote: “Who will be the one responsible for taking care of the [parent] and his needs during treatment and moving forward as we all live out of state and have families” (P82).
Competing Obligations
Caregivers wrote about challenges tied to their siblings’ and their own competing obligations (n = 6). They characterized this challenge as being “too busy,” “hav[ing] their own lives,” “[having] a family,” or being in school. When siblings had other obligations, caregivers described managing care alone: “She has too many other things going on, which often leaves it on me alone to deal with my mother” (P7).
Financial Issues
Caregivers reported financial challenges that involved siblings (n = 4). This included expenses for their parent’s care and having to become a caregiver without an income (e.g., giving up a job). They shared the challenges of discussing such financial issues with siblings, as this caregiver wrote: Mostly the challenge can be communicating the need for financial assistance among the siblings (I have 6). I now take sole responsibility to help Dad make decisions and financially support his wishes. I apply for grants without discussion among siblings and simply report to others what actions were taken. (P16)
Quantitative Findings: Linking Caregivers’ Sibling Challenges With Communication and Psychosocial Outcomes
RQ2 explored which sibling challenges identified in RQ1 were associated with caregivers’ communication outcomes in two contexts: caregivers’ perceptions of communicating openly (or not) with their parent about cancer and their perceived communication quality with clinicians. An independent samples t-test indicated that caregivers who encountered a lack of understanding with their siblings had significantly lower family communication about cancer openness scores (M = 2.30; SD = .76) than caregivers with siblings who showed understanding with siblings about the caregiving situation (M = 2.97; SD = .91), t = 2.808, p = .006. In addition, an independent samples t-test found that caregivers who indicated that they experienced the challenge of managing multiple sibling relationships had significantly lower family communication about cancer openness scores (M = 2.59; SD = .86) than caregivers who did not have to manage multiple sibling bonds (M = 2.98; SD = .92), t = −2.097, p = .03. Moreover, an independent samples t-test found that caregivers who indicated that they experienced challenges with financial issues (M = 1.75; SD = .95) had significantly lower family openness scores than caregivers who did not encounter challenging financial issues (M = 2.92; SD = .89), t = −2.149, p = .01. There were no significant differences in terms of clinical communication scores for caregivers who experienced sibling challenges versus those that did not.
RQ3 investigated the association between sibling-related challenges identified in RQ1 and caregivers’ psychosocial outcomes of feeling supported and caregiving burden. An independent samples t-test indicated that caregivers who perceived their siblings lacked involvement in their parent’s care had significantly lower perceived social support scores (M = 3.25; SD = 1.16) than caregivers who did not indicate challenges related to siblings’ lack of involvement (M = 3.78; SD = .97) t = −2.206, p = .02. Furthermore, an independent samples t-test indicated that caregivers who described relational tensions with siblings had significantly lower perceived social support scores (M = 3.08; SD = 1.14) than caregivers who did not report relational tensions involving siblings (M = 3.75; SD = .99), t = −2.206, p = .03. Finally, an independent samples t-test revealed that caregivers who reported sibling-related relational tensions had significantly higher caregiver burden scores (M = 3.24; SD = .91) than caregivers who had not experienced sibling-related relational tensions (M = 2.58; SD = .87), t = −2.490, p = .014.
RQ4 asked whether the caregiver’s number of siblings was predictive of caregiver burden, social support, openness, and quality of clinical communication. A regression analysis revealed that a higher number of siblings (M = 2.29; SD = 1.47) was a significant predictor of lower quality of clinical communication (M = 3.99; SD = 0.79), β = −.256, t = −2.731, p < .05. However, the number of caregivers’ siblings was not a significant predictor of any other outcome.
Discussion
This study aimed to identify challenges adult child blood cancer caregivers encounter when communicating with siblings. Given the prevalence of cancer in the United States, lack of caregiver resources, and the paucity of research addressing sibling communication in caregiving, our findings illuminate the reality that in addition to care demands, adult child caregivers face challenging sibling dynamics that impact their caregiving experiences. As such, adult child caregivers must learn how to manage multiple, complex sibling-related issues when performing their caregiving role.
Our findings illustrate that sibling-related challenges inform the quality of caregivers’ family communication and interactions with clinicians, as well as caregivers’ psychosocial outcomes. Collectively, findings provide an agenda for targeted educational resources that could help adult child caregivers manage challenges they encounter communicating with siblings. Our findings also indicate that promoting more functional relational dynamics between adult child caregivers and their siblings is critical to promote caregivers’ opportunities for support and in alleviating their burden. This education may be especially needed for caregivers in families that are not communicating openly about cancer and/or who have multiple siblings.
Supporting Caregivers’ Communication Skill Need to Navigate Sibling-Related Challenges, Promote Support, and Reduce Burden
Adult child caregivers illustrated that the sibling relationship ultimately informs how they are communicating as a family. For instance, caregivers reported less openness about cancer with their parent when they had also encountered two sibling-related challenges: talking about financial issues and siblings’ lack of understanding. This may be even further complicated in families with multiple siblings as caregivers’ openness scores were lower when they were challenged with multiple siblings. It is important for adult child caregivers to learn how to discuss sibling-related challenges (like finances) so that they can facilitate open communication about cancer in the family, which may ultimately promote siblings’ understanding of their diagnosed parent’s care needs.
Talking about these challenges may also better ensure caregivers can obtain the social support they need to fulfill their caregiving role and reduce their burden. It is noteworthy that caregivers who reported challenges when siblings had limited or no involvement in their parent’s care, also reported less-perceived social support. Moreover, caregivers who reported more relational tension with their siblings not only reported less support but they also reported more caregiving burden.
Although caregivers’ support comes from many sources, for adult child caregivers of parents, siblings may be a more likely and vital source of support (Lin & Wolf, 2019). Siblings are often secondary caregivers and, thus, could potentially alleviate some care burden if they share the caregiving duties of their parent (Briggs, 2014; Lin & Wolf, 2019). When siblings do not share the care load, it may even contribute to relational tension, given our findings. Previous studies have also indicated that an unequal distribution of caregiving responsibilities among siblings can contribute to more sibling conflict and caregiver stress (Lin & Wolf, 2019).
Openness and support go hand in hand. Previous research has shown that when adult child caregivers communicate more openly in their family about cancer, they also report feeling more supported with less burden (Campbell-Salome et al., 2022; Fenton et al., 2022). Openness is also tied to better psychosocial outcomes for adult child caregivers, including less psychological distress and better relational well-being with their diagnosed parent (Fisher et al., 2017; Wright et al., 2023). Helping adult child caregivers communicate with their sibling and navigate the challenges identified in this study can be a valuable area of intervention that could ultimately enhance caregiver’s ability to provide care, receive secondary support from their siblings, and improve caregivers’ overall well-being.
Implications for Practice
Collectively, this knowledge may be helpful not only for families but also for clinicians and outside support systems working with adult child caregivers. The deterioration of caregiver well-being can impact the health of care recipients (Bevans & Sternberg, 2012; Rodríguez-González et al., 2021). Targeted education that increases both families and clinicians’ awareness of caregivers’ sibling-related challenges is imperative (Fennell, 2007). Interventions could help caregivers learn how to address and manage these sibling-related challenges and, at the same time, increase their opportunities for support and potentially alleviate their burden.
For instance, as was done in the Healthy Communication Practice intervention for adult child caregivers, an educational video could model how caregivers can talk to siblings about a challenge (e.g., sharing care responsibilities) (Bylund et al., 2022). Relatedly, caregivers described dilemmas with openness (e.g., how much information to share with siblings). Adult child caregivers may need help sharing their parent’s clinical information, especially as the number of siblings increases, given our findings indicate that caregivers with more siblings also had poorer clinical communication experiences. Research on companions accompanying patients to appointments shows they rarely have more than one companion present (Eggly et al., 2006). Thus, this finding may indicate that the caregiver feels more burden as a spokesperson to siblings about appointments. Education on how to share patient information with siblings (e.g., technology to facilitate information-sharing) may help alleviate burden.
Limitations
Limitations include small sample size and manifest level (surface level) descriptions with open-ended responses. Caregivers were also offered an incentive to increase recruitment feasibility and compensate them for their time, which may have motivated their participation. Future studies could further explore findings with interviews to deepen our interpretation of how and why these sibling challenges are encountered. The sample may reflect bias due to partnering with a cancer nonprofit organization, as it reflects a population that has engaged with supportive, education programs. Finally, the potential impact of the COVID-19 pandemic on caregivers and richness of responses is worth noting, as the survey was launched in late March 2020.
Footnotes
Disposition editor:
Cristina Mogro-Wilson
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this project is from The Leukemia & Lymphoma Society and The Carolan Research Institute.
