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Objectives: This study investigated the challenges and support needs of adults aged 75 and older during and after treatment for a blood cancer to aid targeted supportive resource development. Methods: Adults aged 75 and older with a blood cancer participated in in-depth, semi-structured interviews about challenges and unmet support needs. Participants recruited through The Leukemia & Lymphoma Society were (1) in treatment or previously in treatment for a blood cancer at age 75 or older and (2) living in the United States or its territories. A thematic analysis was conducted with findings compared between 2 groups: (1) chronic -living with a chronic blood cancer; (2) acute -living with an acute blood cancer or both an acute and chronic blood cancer. Results: Participants (n  = 50) ranged from 75 to 91 years old. Both groups described similar experiences and identified 5 challenges and support needs: (1) socioemotional impact, (2) activities of daily living and instrumental activities of daily living (ADLs/iADLs), (3) uncertainty management, (4) treatment-related stressors, and (5) COVID-19-related strain. Properties for these themes illustrate challenges and support needs, with some differences between groups. For instance, those living with a chronic blood cancer highlighted financial strain with treatment-related stressors, while those with an acute blood cancer focused more on iADLs. Significance of results: Findings inform an agenda for targeted resource development for older adults with a blood cancer nearing the end of the life span. Results demonstrate the need for supportive services and family communication interventions to help patients manage iADLs and navigate socioemotional needs and challenges. [ABSTRACT FROM AUTHOR]

Background: Clinical trial participation in the United States remains low, hampering development of and access to novel therapies. To assist patients and their oncologists with identifying relevant and available blood cancer clinical trials and reducing enrollment barriers, The Leukemia & Lymphoma Society created its Clinical Trial Support Center (CTSC), a free, telephone-based service led by nurse navigators. Objectives: To understand patient-and caregiver-reported perceptions and experiences with this navigation service. Methods: Eligible participants were English-speaking, adult blood cancer patients or caregivers who resided in the United States or Canada and had a telephone interaction with the CTSC between May 2018 and April 2019. A 53-item survey assessed demographics, clinical characteristics, experiences, satisfaction, and enrollment outcomes. Interviews were conducted with a subset of survey respondents to capture individual narratives. Results: Of 474 eligible patients/caregivers, 131 completed the survey (28% response rate). Most patients/caregivers reported contacting the CTSC to identify a trial they might be eligible for (81.7%), for general information about clinical trials (78.6%), about a trial recommended by a healthcare provider (21.4%), or one found through another source (19.1%). In addition to seeking help with identifying trials and learning about trials, patients/ caregivers reported discussing with the nurse navigator insurance/coverage issues (25%) and how to talk with their healthcare provider about trial participation (24%). More than 93% of respondents reported that the nurse navigator gave them the information and support needed to make an informed decision about trial participation. After speaking to a nurse navigator, nearly 29.6% reported enrolling in a trial; the most common reasons for nonenrollment were that their doctor did not recommend it (33.7%), not eligible for any existing trial (30.3%), no trial available at a convenient location (24.7%), and chose a different type or plan of treatment than offered by trial(s) (23.6%). Interview respondents (n=10) described how the navigation enhanced their sense of control over the treatment decision-making process. Conclusion: Amid an overwhelming treatment landscape and continued low clinical trial enrollment rates, this clinical trial navigation service effectively provides blood cancer patients and caregivers support with identifying relevant trial options and facilitating enrollment if the patient so chooses in collaboration with their healthcare team. Further inquiry is needed to understand how to integrate independent navigation programs such as this directly into clinical workflows so that more patients and oncologists can be assisted, especially among patients from groups underrepresented in clinical trials. [ABSTRACT FROM AUTHOR]

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]

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]

Objectives: The study examined the diagnosis experience of midlife family caregivers of a patient with a blood cancer, exploring similarities and differences between parent caregivers and adult-child caregivers.Methods: Participants were between 30 and 65 years old and were family caregivers of a living patient with acute myeloid leukemia, acute lymphoblastic leukemia, or lymphoma. We conducted semi-structured interviews with parent caregivers (n = 20) and adult-child caregivers (n = 19) and a thematic analysis of the interview data.Results: Both types of caregivers report the patient experiencing (1) mis- and missed diagnosis (facing delayed diagnosis or treatment and having symptoms dismissed or overlooked) and (2) emotional distress (being in shock and survival mode, struggling with uncertainty, and confronting mortality). Adult-child caregivers also experienced relational shifts in assuming control of their parent's care, sometimes despite geographic distance, and struggled to distribute the care burden among family members.Significance Of Results: Differences between the caregivers' experiences emerged based on the relational role and the patient's place in the lifespan. Findings can be used to inform the development of support resources to address the needs of each group. [ABSTRACT FROM AUTHOR]

Background: The Leukemia & Lymphoma Society's (LLS) Information Resource Center's (IRC) free services are delivered by information specialists--highly trained oncology social workers and nurses who connect patients and caregivers with financial, emotional, and social support resources, and provide comprehensive disease- and treatment- related information. Objective: To assess the IRC model of education and support for blood cancer patients and their caregivers in terms of their experiences with the IRC: specifically, how well IRC services met patient/caregiver needs; the services' impact on psychosocial outcomes and health-related actions and decisions; and whether experiences varied between Spanish-speaking and English-speaking participants. Methods: A web-based survey was sent to 1711 English-speaking and 70 Spanish-speaking patients and caregivers, 18 years or older, who live in the United States and communicated with an information specialist via phone, email, or chat from September through November 2022; surveys were sent within 2 weeks of contact. All nonresponders received a follow-up email 3 days after the initial survey invitation and a final email reminder 1 week after the initial survey invitation. Spanish-speaking nonresponders also received a phone call reminder. Participants received a $20 incentive in the form of either a check or an Amazon e-gift card. A total of 614 patients and caregivers completed the evaluation survey, which represented a 34.5% overall response rate. Spanish-speaking participants had a response rate of 31.4%, were generally younger (P<.001), and were more likely to call the IRC on the phone (P<.001) compared to English-speaking participants. Results: Participants most often reported contacting the IRC because they were looking for information about how LLS could help them postdiagnosis (58.6%), with financial assistance (43.3%), and to understand the blood cancer diagnosis and treatment options (41.9%). After talking with an information specialist, respondents felt more confident managing their or their loved one's care (86.6%), more hopeful (89.2%), and less anxious (82.9%); in addition, respondents felt more knowledgeable about the blood cancer diagnosis (52.0%), financial assistance available to them (83.1%), and nutrition services (88.6%). Respondents believed the information specialists were very clear and helpful (93.9% and 93.4%, respectively), and that specialists' ability to answer questions was excellent or good (93.4%). In general, Spanish-speaking participants reported very positive experiences with the IRC information specialists, similar to English-speaking participants. A slightly higher percentage of Spanish-speaking participants said that the materials provided by LLS were only a little helpful (P=.004). Conclusion: Managing blood cancer is complex, with potentially significant financial and quality-of-life implications. The IRC provides an effective model for blood cancer patient and caregiver education, support, and assistance. This independent evaluation found that blood cancer patients and caregivers who utilize IRC services had overwhelmingly positive experiences and found the materials helpful. Respondents felt more hopeful and more confident, and they knew more about treatment options, clinical trials, and resources they could utilize. The IRC provides patients and caregivers with the resources needed to advocate for their care and supports their engagement in care delivery and decision-making. [ABSTRACT FROM AUTHOR]

Objectives: Only 5–8% of adults with cancer participate in cancer clinical trials (CCTs), with even lower rates among underrepresented groups. Improving oncologists' communication skills may enhance the frequency and quality of their discussions with patients about CCTs, consequently increasing participation. However, little is known about interest in or presence of CCT-related communication training during Hematology-Oncology (Hem-Onc) fellowships. This study aimed to describe, from the perspective of Hem-Onc fellowship program directors (PDs): (1) the current landscape of CCT education for Hem-Onc fellows; (2) the acceptability and feasibility of implementing a CCT communication skills workshop for Hem-Onc fellows. Methods: We used an explanatory sequential mixed-methods approach. PDs were surveyed and interviewed about their graduate medical education (GME) programs' current CCT curriculum, training challenges, fellows' CCT knowledge and CCT communication skills, and preferences for a CCT communication workshop. Results: PDs were surveyed (n = 40) and interviewed (n = 12). PDs reported that their institutions prioritize CCT accrual (M = 4.58, SD =.78; 1-5 scale, 5 = "Strongly Agree") and clinical research training (M = 4.20, SD =.85). CCT skills that programs least often addressed were how to (1) discuss CCTs with newly diagnosed patients, (2) talk to patients about CCTs when none are available, and (3) help patients find CCTs at other institutions. PDs were interested in a CCT communication workshop for fellows ("yes" = 67.5%, "maybe" = 32.5%) and said training would be feasible (M = 4.28, SD =.78) and useful (M = 4.47, SD =.78). Qualitative results described programs' current approaches to CCT education and insights about developing and implementing CCT communication training. Conclusions: There is a clear need to improve CCT communication skills training in Hem-Onc fellowship programs and to implement and scale such training to increase CCT participation, especially among diverse patient populations. Furthermore, Hem-Onc GME PDs view such training as feasible and useful. [ABSTRACT FROM AUTHOR]

Caregivers often become "surrogate information seekers" when caring for an individual with cancer, educating themselves about cancer diagnoses and treatment options. Caregivers often accompany patients to clinical appointments and may be a main information source for them. Furthermore, they are often involved in treatment decision-making. Thus, understanding the experiences of these caregivers is important to help them best support the patient. An online survey was conducted of caregivers of a living parent with a blood cancer who was in treatment or had finished treatment within the past year (n= 121). Survey questions examined caregivers' experiences speaking with cancer clinicians about online information. Open-ended survey responses were coded using pre-developed coding systems. Intercoder reliability for the coding schemes was acceptable (Krippendorf's Alpha=.80,.73). 34% of respondents did not speak with a clinician about online cancer information during their most recent clinical visit. The most common reasons were that they had no need (n= 14, 35.90%), they had no appointment (n=6, 15.38%), or needed to save face (n= 6, 15.38%). Among those respondents that spoke with a clinician, 20% (n= 18), were advised not to look on the internet for information regarding cancer, 23% (n= 21) received a cautionary response to searching for information online, and 57% (n= 52) received an engaged, positive reaction from their clinician. Nearly 30% of participants reported a clinician advised them at some point not to look online for information, but of these 77% still proceeded to look for online cancer information pertinent to the patient's care. Despite their clinician cautioning or advising against it, many caregivers proceeded to seek online information about cancer. Educational interventions and medical education programs for clinicians and trainees could enhance skills in identifying trusted online sources and initiating conversations with caregivers about information acquired online. [ABSTRACT FROM AUTHOR]

The transition from treatment into survivorship care is a critical juncture for cancer patients and more research is needed to understand this period of adjustment for family caregivers fully. Furthermore, there has been very little focus on sequential transitions that occur in some cancers, like blood cancers, as patients and caregivers move first from primary treatment to maintenance treatment and then from maintenance treatment to survivorship care. This study aimed to understand caregivers' experiences as their family member with blood cancer transitions between treatments and into survivorship care. We conducted in-depth, semi-structured interviews with 39 family caregivers of an individual living with a blood cancer. Interview transcripts were thematically analyzed using a constant comparative approach to better characterize transitional experiences of care, with a focus on understanding supportive needs during transitions. Data were segmented based on caregivers' experience with two distinct treatment transitions: 1) primary sequential treatment and/or maintenance therapy (n = 25) and 2) end of treatment/survivorship care (n = 14). Caregivers in both groups experienced a "new normal" that included personal, relational, and environmental adjustments. Caregivers in the sequential/maintenance group also described uncertainty challenges (e.g., "waiting for the other shoe to drop") and disrupted expectations (e.g., feeling little or no relief), whereas those in the end-of-treatment group described relief coupled with worry (often persistent). Caregivers' experiences differed based on the type of care transition (i.e., transitioning from sequential to maintenance treatments versus starting survivorship care). Although some experiences and support needs (e.g., managing uncertainty) persisted across types of care, these Findings: highlight the need for tailored care based on the type of care transition. Clinicians should use these transitions to initiate conversations with caregivers about their evolving support needs. [ABSTRACT FROM AUTHOR]