Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia

ARTICLE IN PRESS Seminars in Oncology Nursing 000 (2019) 150954

Contents lists available at ScienceDirect

Seminars in Oncology Nursing journal homepage: https://www.journals.elsevier.com/seminars-in-oncology-nursing

Supporting Family Caregivers of Adult and Pediatric Persons with Leukemia J. Nicholas Dionne-Odom, PhD, APRNa,b,*, Erin R. Currie, PhD, RN, CPLCa, Emily E. Johnston, MD, MSc, Abby R. Rosenberg, MD, MS, MAd a

School of Nursing, University of Alabama at Birmingham (UAB), Birmingham, AL Caregiver and Bereavement Support Services, UAB Center for Palliative and Supportive Care, Birmingham, AL c School of Medicine, University of Alabama at Birmingham, Birmingham, AL d Division of Hematology-Oncology and Division of Bioethics and Palliative Care, Department of Pediatrics, School of Medicine, University of Washington, Seattle, WA b

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Article History: Available online xxx Key Words: cancer family caregiver leukemia palliative care pediatric cancer

A B S T R A C T

Objectives: To describe the needs and formal assessment of family caregivers and ways to intervene to alleviate distress and enhance caregiving skills in the setting of adult and pediatric leukemia. Data Sources: Literature review, clinical practice observations and experiences. Conclusion: While rapid treatment advances in leukemia are a welcome development, the reliance on complex care delivered by family members across settings continues to grow and, concomitantly, so does the risk of mental, physical, and economic burden. Implications for Nursing Practice: Oncology nurses and other clinicians should systematically incorporate screening and assessment services so that educational and referral needs are identified and intervened upon. © 2019 Elsevier Inc. All rights reserved.

Introduction For nearly all adults and children with leukemia, successfully navigating the intensive treatment courses, managing the complex medical regimens, and maintaining quality of life in day-to-day living is highly dependent on the volunteer support of family. A diagnosis of leukemia has repercussions well beyond the individual patient, extending to parents, spouses, family, friends, and colleagues. Recognizing this, the Oncology Nursing Society, the American Society of Clinical Oncology, and many national and international organizations have espoused that any holistic approach to the care of adult and pediatric patients affected by leukemia and other cancers should include systematic support of their family caregivers.1 4 Consistent with other organizational definitions, we define “family caregivers”

This manuscript did not receive funding from any specific grant from agencies in the public, commercial, or not-for-profit sectors. Dr Dionne-Odom receives support from the National Institute of Nursing Research (R00NR015903) and the National Cancer Institute (R01CA229197). Dr Currie receives support from the National Palliative Care Research Center (Junior Faculty Career Development Award). Dr Johnston receives support from the Leukemia/Lymphoma Society and Alex’s Lemonade Stand. Dr Rosenberg receives support from that National Cancer Institute (R01CA222486; R01CA225629), the American Cancer Society (RSG-17-194), and Cambia Health Foundation. *Address correspondence to: J. Nicholas Dionne-Odom, PhD, APRN, 1720 Second Avenue South, Nursing Building, 485J, Birmingham, AL 35294-1210. E-mail address: [email protected] (J.N. Dionne-Odom). https://doi.org/10.1016/j.soncn.2019.150954 0749-2081/© 2019 Elsevier Inc. All rights reserved.

as those parents, close relatives, and friends who not only cope with seeing their child or someone close to them struggle with a serious illness, but who also provide daily practical, logistical, informational, socioemotional, psychological, and spiritual support. Mounting evidence suggests that providing this support to individuals with cancer can put the family member’s own health at risk, often surpassing the distress experienced by the patient.5,6 When caregivers’ own health is compromised, their ability to provide high-quality care may also be attenuated, thereby negatively impacting the health and well-being of patients.7 Hence, it is incumbent upon adult and pediatric oncology nurses and other clinicians, as well as oncology and health care system leadership, to systematically incorporate screening and assessment services for family caregivers so that educational, referral, and counseling needs can be identified and addressed. To promote this initiative, the objective of this article is to review and summarize the literature on family caregiving for adults and children diagnosed with leukemia. Admittedly, the literature focused on cancer caregiving in hematologic malignancy is small and even smaller when narrowed to leukemia, particularly in pediatrics. Nonetheless, this overview will describe aspects of caregiving supplemented with what we know from other cancer caregiving contexts (eg, solid tumors, aggregate samples across different cancer types) that we believe are appropriate for this subgroup of leukemia caregivers. We have divided the paper into four main parts: 1) cataloguing

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and describing the wide range of caregiving roles and tasks; 2) reporting what is known about the mental, physical, and economic effects on family caregivers and how to assess for them; 3) describing strategies to help support family caregivers; and 4) concluding with a summary of recommendations and implications for clinical practice. Caregiver Roles and Tasks Over the cancer trajectory, family caregivers deliver the majority of support and medical care and nearly all the medical care in the home setting (see Table 1).1,8 According to a 2016 national survey by the National Alliance for Caregiving,8 cancer caregivers spent an average of 32.6 hours per week performing tasks and nearly one in three caregivers provided 41 or more hours. Over half of cancer caregivers help with instrumental activities of daily living, including providing transportation, caring for the home, grocery shopping and meal preparation, giving medicines (including injections), and managing finances. Four in 10 are performing medical/nursing tasks without any prior preparation. And while the quantity of time caregivers spend performing these tasks for patients is considerable, emerging research suggests it may be that what matters more is the quality and effectiveness of the support delivered (ie, care that matches the care recipient’s needs, is readily accessible, skillfully delivered, and does not negatively impact the care recipient’s self-concept). A study of 230 post-transplant recipients by Rini and colleagues9 found that the quantity of caregiver support was not associated with patient distress; rather the quality of the support delivered and how well it matched what patients actually wanted was correlated with their distress. In general, caregiving roles and tasks change over time as the patient’s condition and level of independence change. As patients become sicker, the caregiving role expands accordingly, particularly when care is delivered in the home and when patients approach end of life. Cancer caregiving tends to be nonlinear, with episodes of high intensity, such as when treatment decisions are made and treatment ensues, with each phase and transition of care having its own learning curve and adjustment period.8 Some transitions in care are more expected than others, with emergency department visits being potentially traumatic and yet common in leukemia.10 Compared with other cancer caregivers, caregivers of leukemia patients are called upon to be present for extended hospital stays and must manage downstream complications of highly toxic treatments over a lengthy duration.11 A prominent role of caregivers in the setting of leukemia is the provision of decision support to patients given the many decisions that have to be made over the treatment and illness trajectory.12 14 Examples of decisions faced include chemotherapy and other Table 1 Common tasks undertaken by cancer caregivers.8 Practical tasks Transportation Medical appoitment coordination Personal care assistance with ADLs/IADLs Home and yard maintenance Meal preparation Managing finances Arranging outside services, care transitions Medical/nursing tasks Symptom monitoring and management Medication monitoring, management, administration Interacting/communicating care recipient health information with providers and other health professionals Breathing treatments Ostomy, wound, dressing care G-tube feedings Catherizations Abbreviations: ADL, activities of daily living; IADL, instrumental activities of daily living.

treatment choices with extreme benefit-side effect tradeoffs, waitand-see decisions, medication intensity, hematopoietic stem cell transplantation (HSCT), and palliative and hospice care,12,13 Patients with leukemia have been reported to be overwhelmed with the amount of information they receive and with dealing with uncertain prognostic information.13,15,16 further highlighting the importance of families who have been reported to be actively involved in nearly three quarters of cancer treatment decisions.17 Complicating the process even further is that oncologists, patients, and caregivers often have discordant perceptions about what happens in treatment decision-making encounters, including whether options were even presented, what roles patients and families wanted in the decisionmaking process, and what the benefits and risks are of treatment and cure.16,18 Clearly, oncology nurses have an opportunity to enhance family members’ roles in these decisions by clearly “signposting” when a choice has to be made, by helping caregivers articulate what decision support role they want to play, and ensuring that families have all the information they want and need to make the best decisions for them.13 The caregiving role can be particularly intense during HSCT.6 Not only are family members often asked to be potential donors for allogeneic HSCT,19 many HSCT centers require a family member to be available 24 hours/day for 1 to 3 months after transplant.20 Despite this, assessment of family support is absent or only briefly mentioned in several published guidelines and consensus statements on transplant evaluation.21 23 Caregivers often struggle to adapt their schedules to the patient’s 2- to 4-week inpatient stays and the intensive homecare that ensues several months afterwards. After transitioning home, caregivers assume many medical tasks, such as administering oral and intravenous medications.6 During the first 100 days after transplantation, a review by Gemmill et al24 reports that caregivers are focused on engraftment, preventing complications, symptom and medication management, and scheduling clinic visits. Moreover, toxic side effects often trigger symptom exacerbations (eg, neutropenic fevers and infections, respiratory distress, anemia) that overwhelm families and their patients, resulting in unplanned emergency department visits and hospital admissions.25 Mental, Physical, and Economic Risks for Cancer Caregivers Caregivers of patients with leukemia and other hematologic malignancies may be at particular risk for negative mental, physical, and economic health effects given the intensity of treatments that can often begin within 24 hours of diagnosis, the toxic side effects of treatment, the high uncertainty of survival, and the long duration of treatment.21,25,26 Several studies have noted that distress tends to be highest at diagnosis, with peaks at intermittent points along the trajectory when there are new treatments or settings of care.11 Depression and anxiety rates among hematologic caregivers have been reported to range from 5% to 67%, and 16% to 58%, respectively.5,27,28 The wide range in estimates is likely due in part to the different points along the cancer and treatment trajectory, in which the rates were ascertained (eg, being especially high prior to HSCT). It has been speculated that anxiety peaks early in the initial diagnosis and treatment phase, when caregivers are new to their role, and depression peaks later in the trajectory, possibly reflecting the chronic nature of the role.27 Several studies and reviews have highlighted the impact of HSCT on family caregivers.5,6,24,29 Predictors of high distress in HSCT caregivers have included: being female and younger, working full time, suppressing expression of unmet needs out of fear of burdening others (ie, protective buffering), and caring for patients with high symptom burden.6,26 This high distress can manifest physically when caregivers report fatigue, cognitive dysfunction, sexual issues, and sleep disturbance; and socially because of social isolation, family tension, financial problems, and coordinating care responsibilities within

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the family network.24 A 2011 review of the literature by Beattie et al found that caregivers particularly struggle in the pre-transplantation phase with uncertainty and fear of the future, juggling life’s responsibilities, and adapting to the role. HSCT has also been found to be a significant stressor on marital and intimate partner relationships, especially for female spouses who report low marriage satisfaction levels up to 5 years after transplant.30,31 Though varying widely between commercial and government (eg, Medicare) insurance, the financial burden of leukemia treatments can be extraordinarily high.25 An evaluation of 6,415 commercially insured patients newly diagnosed with acute myeloid leukemia with mean follow-up between 16 and 18 months had estimated health care utilization costs of $386,077 per year.32 Beyond these medical costs, families must often accommodate significant travel and lodging expenses during long inpatient stays, as well as extended periods of time off work.24 Risks of financial distress can be particularly prevalent among patients and families from rural areas33 and with lower socioeconomic status.34 Effectively Supporting Family Caregivers Cancer caregivers are a heterogeneous population with respect to support needs and thus an effective support model is one that is individually tailored and regularly re-evaluated.1,35 A population-based Australian survey of 1,004 hematologic cancer caregivers found that 82% had at least one unmet need in the past month, 66% had at least one ”moderate, high, or very high” unmet need, and 24% had six or more ”high/very high” unmet needs.33 The most common caregiver unmet needs reported in the survey were dealing with worrying about the future, finding information about financial help, talking about emotions with friends and family, managing stress, problems with sleep, and dealing with fatigue. The priority needs of caregivers of patients receiving HSCT include having patient’s symptoms controlled in the inpatient setting and being able to communicate effectively with the health care team.6 Other reported needs centered more on caregivers themselves, including having time for themselves, reconnecting socially, and feeling underprepared in their personal stress management skills.6,24 Qualitative studies suggest that many caregivers feel obligated to place the patients’ needs above their own, resulting in poor selfcare,-] which has been noted in other non-leukemia populations of cancer caregivers.36 Despite the conceptual work that has been done to identify intervention formats and content,24,30 there have been very few interventions tested for efficacy among caregivers of persons with hematologic malignancy,6,24,30,35 and very few that have focused specifically on caregivers of people with leukemia.37 A systematic review by Bangerter and colleagues35 of psychosocial interventions for caregivers of HSCT patients identified four randomized controlled trials,38 41 five feasibility studies, and three cohort studies. The review concluded that most interventions were acceptable and feasible but that results were mixed on consistent outcomes for depression, anxiety, coping, and quality of life. A randomized controlled trial involving 94 family caregivers by ElJawahri and colleagues39 to assess the effect of inpatient palliative care visits for patients during hospitalization for HSCT found that intervention group caregivers (compared with usual care) had better depression scores at 2 weeks and Laudenslager and colleagues40 tested a social worker-led psychosocial intervention with 267 family caregivers of allogeneic HSCT patients consisting of eight one-on-one stress management sessions over the 100day post-transplant period and found that intervention group caregivers had significantly lower distress, depression, and anxiety compared with usual care at 3 months. Ultimately, however, continued high-quality testing of interventions to support leukemia and hematologic cancer caregivers is needed.

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Special Considerations for Parental Caregivers of Children with Leukemia The challenges of a parent caring for a child with cancer share some similarities and yet many differences to family caregivers of adult individuals. Similar to adult populations, children with hematologic malignancies undergo an extended treatment course over a span of years and their parental caregivers assume many health care tasks and decision-making roles while maintaining hope and managing uncertainty related to their child’s prognosis.42,43 These and other demands strain parental caregivers psychologically, psychosocially, financially, spiritually, and physically, and place them at a higher risk for anxiety, depression, and post-traumatic stress.44 46 Similar to adult family caregivers, parental caregivers are also stressed financially because they are frequently young adults beginning careers without long-term financial stability, making them vulnerable to the financial toxicities of treatment.47,48 The American Academy of Pediatrics and pediatric oncology associations advocate for routine poverty screening, but this has not been widely implemented.49 There are also distinct differences in the experience of parental compared with adult caregivers. Striving to be a good parent is a priority for parents of seriously ill children.50 52 Feudtner et al50 conducted a discrete-choice experiment with parents of seriously ill children and found that parents ranked the highest good-parent attributes as: making sure my child feels loved, focusing on my child’s health, making informed medical care decisions, and advocating for my child with medical staff. Hinds et al52 explored parent perceptions of “trying to be a good parent” in parents of terminally ill cancer patients, and found parents most commonly reported: doing right by my child, making prudent decisions in the best interest of the child, and meeting basic needs as priorities for good parenting. Related to this parental sense of duty to be a good parent is their role as the child’s medical decision-maker.53 The decision-making process is highly influenced by the parents’ desires to be a good parent and to make decisions consistent with their perceptions of good parenting.54,55 Also, many parents are not only caring for their sick child, but also caring for the child’s siblings. Well siblings worry about their ill sibling, have routine disruptions, and have less time with their parents.56 It is unsurprising that many siblings of children with cancer have psychological distress, lower quality of life, and school disruptions.56 58 Young siblings of children who die are particularly vulnerable and are at high risk for ongoing psychosocial issues during bereavement and thereafter.59 61 Therefore, sibling support is now considered standard of care in pediatric oncology.59 61 However, there is limited literature on sibling interventions.59 Sibling support groups and camps are the most frequently cited method of sibling support.59 Interestingly, there is little information about how to support parents as they navigate parenting both the sick child and healthy siblings. Assessment and intervention for parents of children with leukemia Regular assessment of mental health needs of parents with children with cancer is considered standard of care4; however developing and evaluating interventions to address the needs and psychological challenges of parenting a child with cancer is an emerging area. Interventions range from online support groups to structured one-on-one sessions focused on specific skills.4,62 Two of the most well-studied interventions to date include the Surviving Cancer Competently Intervention Program (SSCIP) 63 65 and the Bright Ideas: Problem-Solving Skills Training.66,67 SSCIP used a cognitive behavioral approach where psychology trainee-led sessions focused on anxiety, beliefs about cancer diagnosis and treatment, social support, family communication, and traumatic experiences. Sessions were tailored to the survivorship and new

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diagnosis phases of care. The survivor intervention consisted of one large group intervention each day divided by role (parent, sibling, survivor) with four sessions on different topics. Because of timing concerns, the new diagnosis sessions only had the parental caregivers of one child present and included three separate sessions within a month of diagnosis. The survivor study was not only acceptable to families, but also decreased post-traumatic stress and anxiety for mothers, fathers, survivors, and siblings in a randomized controlled trial of 150 survivors, mothers, fathers, and adolescent siblings at a single site.64,65 Bright Ideas is an intervention for mothers of recently diagnosed children with cancer consisting of eight 1-hour sessions facilitated by a mental health practitioner of specific problems experienced by the mother.66,67 In a randomized controlled trial of 430 English- and Spanish-speaking mothers, intervention group participants had better problem solving skills, less emotional distress, and depression at 6 months, and was most effective in young, single, low socioeconomic status, or minority mothers.67 Further details and materials for implementing SSCIP and Bright Ideas is available through the National Cancer Institute’s Research-Tested Intervention Programs Web site (rtips.cancer.gov/). Finally, the most recent exemplar of a potentially highly scalable intervention with promising benefit to parental caregivers of children and adolescents and young adults (AYAs) affected by leukemia and other hematologic malignancies is the Promoting Resilience in Stress Management intervention for Parents (PRISM-P).68 Based on stress appraisal and coping theory, PRISM-P is an illness-nonspecific intervention focused on enhancing an individual’s practical resilience skills, defined as modifiable personal coping resources to maintain well-being in the face of highly stressful situations. These skills include managing stress and promoting meaning-making, benefitfinding, goal-setting, problem-solving, and positive reframing.69 Aimed at optimizing these resilience skills in parental caregivers and their endorsed needs, PRISM-P is a brief, skills-based psychosocial intervention adapted from the PRISM intervention for AYAs that has demonstrated marked benefit to AYA quality of life and distress.68,70 Tailored to needs identified by parents in prior work,71 four one-onone biweekly sessions are conducted over the phone or in-person by a trained bachelors- or masters-level nonclinical professional covering four main resilience-building topics: stress management/coping, goal setting, cognitive restructuring, and benefit finding. The stressmanagement session includes teaching on breathing, mindfulness, and relaxation techniques and leveraging social support. The goal setting session focuses on setting specific, realistic goals, identifying and overcoming obstacles, and identifying concrete steps to meet goals. The cognitive restructuring session covers material on how to recognize negative self-talk and how to replace negative or unrealistic

thoughts with more realistic ones. The last session on benefit finding discusses with parents how to reframe one’s current experience into a positive one and techniques of self-reflection, identifying gratitude and meaning, and journaling. Sessions are supplemented with informational handouts and worksheets to reinforce content and promote skill-building. Pilot work of PRISM-P that included children with leukemia demonstrated feasibility and acceptability, with 100% of parents recommending the program to other parents.68 PRISM-P was subsequently tested in a three-group randomized controlled trial (usual care, one-on-one delivery, and group delivery) that included 94 parents of children (aged 2 to 24 years) diagnosed with cancer in the past 10 weeks, where over half of the children had leukemia or lymphoma.72 Compared with usual care at 3 months, one-on-one delivery was associated with higher parent-reported resilience and both one-on-one and group delivery were associated with higher benefit finding. Implications for Clinical Practice Based on this review, there are several recommendations for clinical practice. Though recognizing the constraints of busy clinical environments, caregivers may benefit from brief screening for distress and unmet needs. The US-based family caregiver advocacy organization, Family Caregiver Alliance, has published a comprehensive overview of what to include in a comprehensive caregiver assessment as well as an inventory of measurement and needs assessment tools.73,74 Consistent with what has been recommended by others for caregivers of hematologic patients,7 brief screening questionnaires that could be used to screen for distressed caregivers include the National Comprehensive Cancer Network Distress Thermometer,75 the Patient Health Questionnaire (PHQ)-2 item,76 and the Generalized Anxiety Disorder (GAD)-2 item77 (see Table 2). These screening questionnaires are brief and can be administered by a nurse, social worker, navigator, or other clinician to help determine if further assessment and referral are needed. Based on these assessments, oncology clinicians can guide caregivers to already existing, high-quality information and resources (see Table 3 for several resources).78 At minimum, caregivers can be provided education about what to expect over the treatment course, including induction and post-remission therapies, and during care transitions.6,79 Given the intensity of HSCT treatment, transplant caregivers also need special, upfront preparation for this unique course of treatment. Caregivers also need to be encouraged to take care of themselves and to develop enhanced stress management skills.6 A first and easy step clinicians can take toward promoting the caregiver’s health and value is to simply explicitly acknowledge the difficulty of the caregiving

Table 2 Select caregiver distress screening instruments. Instrument

Description

National Comprehensive Cancer Network Distress Thermometer

https://www.nccn.org/about/permissions/thermome Measures distress on scale of 0 to 10, where 0 is no ter.aspx distress and 10 is the worst distress imaginable. A problem list accompanies the 0 to 10 scale that allows individuals to identify concerns in areas including practical, family, emotional, spiritual, and physical problems https://innovations.ahrq.gov/qualitytools/patientA 2-item self-report depression screener that asks health-questionnaire-phq-2 about the frequency of depressed mood and anhedonia over the past 2 weeks. Scores range from 0 to 6, where a score of 3 or above indicates the need for more comprehensive evaluation A 2-item self-report anxiety screener that asks about https://integrationacademy.ahrq.gov/sites/default/ files/GAD-2_0.pdf the frequency of anxious feelings and worry over the past 2 weeks. Scores range from 0 to 6, where a score of 3 or above indicates the need for more comprehensive evaluation

Patient Health Questionnaire (PHQ) 2-item

Generalized Anxiety Disorder (GAD) 2-item

Accessible at:

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Table 3 Select Caregiver Organizations and Resources. Organization/Resource

Description

Leukemia & Lymphoma Society Caregiver Support

Where accessed?

Comprehensive Web resource for family caregivers of adults and children with leukemia and lymphoma. Provides information about leukemia and other blood cancers and treatment options; worksheets to help caregivers stay organized (eg, emergency room plan, daily medication log, communication guides); guidance on communication, including how to talk with children, and relationship changes; financial and legal planning; and links to online leukemia and lymphoma caregiving communities. CML Advocates Network For individuals and their families affected by CML, this patient-led international network provides a worldwide directory of CML patient groups, shared best practices on cancer advocacy, and a repository of easy-tounderstand, downloadable information. BMTinfonet.org Web resource for family caregivers whose relative is undergoing bone marrow or stem cell transplant. Includes treatment information, videos, and what to expect during all phases of the treatment. American Cancer Society Provides educational materials about hematologic cancers; offers online support groups and discussion boards and information about in-person support groups through local chapters; Road to Recovery program offered by some local chapters to assist with transportation; Hope Lodges are temporary housing for patients and families traveling long distances for care. National Cancer Institute Cancer Information Service Provides up-to-date information on cancer in easy-tounderstand language over the phone, e-mail, or online chat. Trained information specialists provide personalized responses about cancer research and clinical trials, cancer treatment centers, cancer prevention, risk factors, symptoms, and diagnosis and treatment. Alex’s Lemonade Stand Foundation Comprehensive resource for parental caregivers of children with cancer. Provides information about cancer and treatments; Travel for Care program offers travel assistance to families seeking care; SuperSibs is a resource for siblings; Childhood Cancer Treatment journal is a free treatment organizer for families to help them keep track of treatments; and School Support is a resource for educational professionals to help patients, their siblings, and classmates cope with a diagnosis or death in their school community. Family Caregiver Alliance Comprehensive resource for family caregivers. Provides information and resources for long-term caregiving, including practical skills, how to hold family meetings, decision-making, assistive equipment, and online support. Their Family Care Navigator is an online search portal that can identify state-specific resources. Courageous Parents Network CPN is a Web-resource created by parents, for parents, to support, guide, and strengthen families as they care for a seriously ill child. There are a range of resources including decisional support, provider-parent communication, navigating the hospital, self-care, and a specific link to support from parents of children diagnosed with leukemia.

www.lls.org/support/caregiver-support

www.cmladvocates.net

www.bmtinfonet.org/transplant-article/role-familycaregiver

www.cancer.org

1-800-4-CANCER www.cancer.gov/contact

www.alexslemonade.org

www.caregiver.org

https://courageousparentsnetwork.org/

Abbreviations: CML, chronic myeloid leukemia; CPN, Courageous Parents Network.

role and their essential role as a member of the health care team: “Mrs. Smith, supporting someone like your husband can be really difficult and we are here to help support both him and you. We appreciate everything you do to support your husband and we want to stress that it’s also important that you do things to take care of yourself so that you can provide the best support possible.” It is important to give caregivers permission to take care of themselves and to reach out for assistance when feeling overwhelmed because many may feel guilty about not focusing all of their time and energy on the patient. Not talking about one’s cancer experience has been associated with increased risk of distress. Hence, helping foster communication between caregivers and patients may also help protect against marital and relationship dissatisfaction and protective buffering.6 An

easily accessible evidence-based communication skills resource for clinicians to refer family caregivers to is the Caregiver Communication about Cancerࣩ guide, developed by Wittenberg and colleagues.80,81 The guide provides communication support to cancer caregivers and is available for hard-copy download at www.communicatecomfort. com/resources or as a smartphone and tablet app. Finally, distressed caregivers may need to be referred for professional counseling. Psychological signs of distressed caregivers include anxiety, depression, loneliness, worry, and marital/social support dissatisfaction.11,82 Physical signs include fatigue, sleep disturbance, weight gain or loss, and worsening self-care.83 Admittedly, formal screening, education, and referral services for family caregivers is challenging given that health care systems are not structured to

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incentivize these practices.1 Future research and policy work is needed to better include family caregivers as part of the health care team and as recipients of patient and family-centered care. References 1. National Academy of Medicine. Families caring for an aging America. Washington, DC: The National Academies Press; 2016. 2. Oncology Nursing Society. Position statement: palliative care for people with cancer. 2016. Available at: https://www.ons.org/make-difference/ons-center-advo cacy-and-health-policy/position-statements/palliative-care-people. Accessed 27 May 2019. 3. Ferrell BR, Temel JS, Temin S, et al. Integration of palliative care into standard oncology care: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2017;35:96–112. 4. Kearney JA, Salley CG, Muriel AC. Standards of psychosocial care for parents of children with cancer. Pediatr Blood Cancer. 2015;62(suppl 5):S632–S683. 5. Posluszny DM, Bovbjerg DH, Syrjala KL, Agha M, Dew MA. Correlates of anxiety and depression symptoms among patients and their family caregivers prior to allogeneic hematopoietic cell transplant for hematological malignancies. Support Care Cancer. 2019;27:591–600. 6. Beattie S, Lebel S. The experience of caregivers of hematological cancer patients undergoing a hematopoietic stem cell transplant: a comprehensive literature review. Psycho-Oncology. 2011;20:1137–1150. 7. Bevans M, Sternberg EM. Caregiving burden, stress, and health effects among family caregivers of adult cancer patients. JAMA. 2012;307:398–403. 8. National Alliance for Caregiving. Cancer caregiving in the U.S.: an intense, episodic, and challenging care experience. 2016. Available at: https://www.caregiving.org/ wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf. Accessed 27 May 2019. 9. Rini C, Redd WH, Austin J, et al. Effectiveness of partner social support predicts enduring psychological distress after hematopoietic stem cell transplantation. 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