Cancer Family Caregivers Research Articles

Effectiveness of palliative care consultation service on caregiver burden over time between terminally ill cancer and non-cancer family caregivers.

The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time. A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC. The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7days and 14days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14days after PCCS (β = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (β = 1.14, p = 0.013). This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.

Elaborating Cancer Opinion Leaders’ Communication Behaviors Within Online Health Communities: Network and Content Analyses

This study integrates social network and content analyses to examine the communication behaviors of opinion leaders—such as creating threads and engaging in continuous conversations—in two large cancer-focused online health communities. Guided by the diffusion of innovation theory and the social support literature, we analyzed 951 threads and 10,179 posts and found that a group of opinion leaders (including cancer patients, family caregivers, and cancer survivors) centralized the communities from 2017 to 2018. Opinion leaders’ typical replies to others tended to be a combination of opinion support, emotional support, and network support. Amid their self-created threads, we further identified four themes: cancer history and treatment, health or life condition update, advocacy, and emotional ventilation. Implications for network and content analytics of online cancer communication are discussed.

HSR20-078: Cancer Patients and Family Caregivers as a Unit of Care

HSR20-078: Cancer Patients and Family Caregivers as a Unit of Care

The Interaction Between Hematological Cancer Patients and Family Caregivers and Their Life Changes: A Qualitative Dyadic Approach.

Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers. We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format. As a result of a content analysis, 3 themes emerged: hidden emotions, companionship, and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyad members described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process. Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver-based interventions. It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships.

The mutual impact and moderating factors of quality of life between advanced cancer patients and their family caregivers.

Cancer and its treatment can affect quality of life (QOL) in cancer patient and family caregiver dyads. However, the factors influencing dyad QOL remain inconclusive. Our study was designed to (i) assess dyads' QOL, and examine the relationship between the QOL of cancer patients and that of their family caregivers, and (ii) investigate factors that may modify this relationship. Participants comprised 641 cancer patient-family caregiver dyads. Four types of variables were collected as potential influencing factors, including cancer patient-related variables, family caregiver-related variables, family-related variables, and symptom distress-related variables. Generally, family caregivers reported better QOL than cancer patients did. The effect sizes of the correlation (r) between cancer patients' QOL and those of their family caregivers ranged from 0.08 to 0.27. Various variables influencing the QOL correlations between cancer patients and family caregivers were identified, including cancer patient-related variables (e.g., age, gender, marital status, understanding of the disease, cancer type and treatment); family caregiver-related variables (e.g., being the spouse or offspring of a patient, duration in their role as a family caregiver, understanding of the disease, and amount of time spent on caregiving each day); family-related variables (e.g., cancer patient enjoyed a good relationship with family pre-cancer diagnosis, family was experiencing serious or mild financial burden due to cancer treatment); and symptom stress-related variables (anxiety and depression). Study findings draw attention to QOL and its related factors in cancer patient-family caregiver dyads. This will benefit the development of interventions to improve dyad QOL.

Does Being A Cancer Patient or Family Caregiver of A Cancer Patient Affect Stem Cell Donation Awareness?

Objective:One of the most difficult challenges regarding hematopoietic stem cell transplantation in Turkey is finding donors for allogeneic transplantation candidates who do not have related donors. This study aims to determine whether there is any difference in the awareness of stem cell donation and transplantation between cancer and noncancer patients and their family caregivers. In addition, this study aims to determine the awareness of stem cell donation and transplantation in the entire study population.Methods:This descriptive study was conducted in Turkey using a data collection form comprising questions about demographics, stem cell transplantations, donations, and medical history. On analyzing the research data, variables were expressed as mean ± standard deviation and as numbers (n) and percentages (%). The Chi-square and Fisher's exact tests were performed to evaluate differences among cancer and noncancer diagnosed patients and their family members.Results:A total of 192 patients and 169 family caregivers participated in the study. In comparison with noncancer patients, cancer patients showed more awareness on what stem cell transplantation is, how lifesaving it is, and how to donate stem cells. Similarly, the family caregivers of cancer patients were more aware of what stem cell transplantation is and how to donate stem cells.Conclusions:The results of this study showed that cancer patients and their families were more aware of stem cell donation and transplantation; however, most of the patients and families did not know enough about the national registry program and how to donate stem cells.

Leveraging Smart Health Technology to Empower Patients and Family Caregivers in Managing Cancer Pain: Protocol for a Feasibility Study.

BackgroundAn estimated 60%-90% of patients with cancer experience moderate to severe pain. Poorly managed cancer pain negatively affects the quality of life for both patients and their family caregivers and can be a particularly challenging symptom to manage at home. Mobile and wireless technology (“Smart Health”) has significant potential to support patients with cancer and their family caregivers and empower them to safely and effectively manage cancer pain.ObjectiveThis study will deploy a package of sensing technologies, known as Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C), and evaluate its feasibility and acceptability among patients with cancer-family caregiver dyads. Our primary aims are to explore the ability of BESI-C to reliably measure and describe variables relevant to cancer pain in the home setting and to better understand the dyadic effect of pain between patients and family caregivers. A secondary objective is to explore how to best share collected data among key stakeholders (patients, caregivers, and health care providers).MethodsThis descriptive two-year pilot study will include dyads of patients with advanced cancer and their primary family caregivers recruited from an academic medical center outpatient palliative care clinic. Physiological (eg, heart rate, activity) and room-level environmental variables (ambient temperature, humidity, barometric pressure, light, and noise) will be continuously monitored and collected. Behavioral and experiential variables will be actively collected when the caregiver or patient interacts with the custom BESI-C app on their respective smart watch to mark and describe pain events and answer brief, daily ecological momentary assessment surveys. Preliminary analysis will explore the ability of the sensing modalities to infer and detect pain events. Feasibility will be assessed by logistic barriers related to in-home deployment, technical failures related to data capture and fidelity, smart watch wearability issues, and patient recruitment and attrition rates. Acceptability will be measured by dyad perceptions and receptivity to BESI-C through a brief, structured interview and surveys conducted at deployment completion. We will also review summaries of dyad data with participants and health care providers to seek their input regarding data display and content.ResultsRecruitment began in July 2019 and is in progress. We anticipate the preliminary results to be available by summer 2021.ConclusionsBESI-C has significant potential to monitor and predict pain while concurrently enhancing communication, self-efficacy, safety, and quality of life for patients and family caregivers coping with serious illness such as cancer. This exploratory research offers a novel approach to deliver personalized symptom management strategies, improve patient and caregiver outcomes, and reduce disparities in access to pain management and palliative care services.International Registered Report Identifier (IRRID)DERR1-10.2196/16178

The Project ENABLE Cornerstone Randomized Pilot Trial: Protocol for Lay Navigator-Led Early Palliative Care for African-American and Rural Advanced Cancer Family Caregivers

BackgroundPatients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study DesignSingle-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. ConclusionOnce acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.

Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation.

Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers. The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed. Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics. Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.

1761P - Preparedness for caregiving in caregivers of cancer patients

BackgroundCaregiving a cancer patient is a complex role that involves new responsibilities for which caregivers don’t feel ready to provide care. Caregivers who feel unprepared for giving care have physical, psychological and social problems. It is necessary to determine all the needs of caregivers. MethodsThis is cross-sectional descriptive study was carried out with 203 Turkish cancer family caregivers at the oncology wards of six hospital from January-March 2019. We defined a caregiver as one of the family members who give most assistance. Data were collected with “Preparedness Scale of the Family Care Inventory”. The scale consists of eight items, total score range is 0-32. Higher scores indicate that the caregiver feels more prepared for their role. Data were evaluated by independent groups t test, one-way analysis of variance test. ResultsThe mean age of the caregivers was 46.8±13.8; most of them were female (64.5%); 68% of them felt constantly tired during the caregiving period; 55% had a decrease in social relations. Seventy one percent of the caregivers expressed that they wanted to know about the practices to protect their patients from infection; 64% of them wanted to know about what to do in case of emergency. Caregivers’ mean score from the scale was 27.0±6.0. Preparedness scores of those with high socioeconomic status are higher than those with low socioeconomic status (F=4.047; p=0.001). Less than one-year caregivers are more ready to provide care than caregivers for between one-five years; and between six-ten years caregivers are more ready to provide care than between one-five years (F=6.464; p=0.002). ConclusionsMeeting caregiving needs is associated with high socioeconomic status. It is expected result that high socioeconomic status is related to preparedness for caregiving. Less than one-year caregivers encounter less problems. Nurses need to recognize that ’new’ cancer caregivers may be feeling difficulty when the problem is encountered. Caregivers with more experience duration develop the ability to solve care problems as the time to care for cancer patients increases. Nurses need to recognize that caregivers often are ’experienced’ caregivers may be feeling burnout and ignore their own health-related problems. Legal entity responsible for the studyThe authors. FundingHas not received any funding. DisclosureAll authors have declared no conflicts of interest.

Enhancing the cancer caregiving experience: Building resilience through role adjustment and mutuality.

The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers. For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC). Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10). New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship.

Unmet needs of family cancer caregivers predict quality of life in long-term cancer survivorship.

To identify demographic and caregiving characteristics associated with caregivers' unmet needs and to examine associations of caregivers' unmet needs with their quality of life at 2 years and 5 years since their patients' initial diagnosis. Family cancer caregivers completed prospective longitudinal surveys at 2 years (T1) and 5 years (T2) post diagnosis. Demographic and caregiving characteristics were measured at T1. Unmet needs and quality of life were measured at T1 and T2. Younger and spousal caregivers reported greater unmet needs (B > 2.03, p < .05). Independent of demographic characteristics, caregivers' perception that providing care to their relative with cancer was overwhelming was consistently associated with unfulfillment of their needs in various domains, concurrently and prospectively (B > 2.50, p < .05), across the long-term survivorship phases. Findings highlight the contribution of earlier subjective caregiving stress to family caregivers' needs not being met both currently and years later, which, in turn, related to poorer quality of life across different family caregivership trajectories. Findings suggest identifying at-risk subgroups of family caregivers based on demographics and assessing caregiving stress as a priority in psycho-oncology research and clinical practices. Family caregivers' quality of life is affected by cancer survivors' illness trajectory many years after the initial cancer diagnosis, so are the caregivers' needs. Cancer survivorship care plan should take careful consideration of the nuanced long-term contributions of caregivers' unmet needs to their specific aspects of quality of life.

Perioperative Ostomy Self-Management Telehealth for Cancer Patients and Family Caregivers

Perioperative Ostomy Self-Management Telehealth for Cancer Patients and Family Caregivers

Influence of time lapse after cancer diagnosis on the association between unmet needs and quality of life in family caregivers of Korean cancer patients.

This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. Self-administered comprehensive needs assessment tool and EuroQol-5-dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis (≤12, 13-36, 37-60,>60months). We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers' comorbid conditions. Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of ≤12months as well as >60months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in ≤12months and >60months respectively. The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.

Pilot Optimization Trial of Decision Partnering Intervention for Advanced Cancer Family Caregivers

Pilot Optimization Trial of Decision Partnering Intervention for Advanced Cancer Family Caregivers

Savouring and psychological well-being in family dyads coping with cancer: An actor-partner interdependence model.

Previous studies have investigated interdependence of the associations between predictors and negative psychological outcomes in dyads of cancer patients and family caregivers. This study examined the dyadic effects of perceived capability of savouring the moment on psychological well-being. A total of 152 dyads of cancer patients and caregivers reported their perceived capability of savouring the moment (Savoring Beliefs Inventory), state positive affect (Chinese Affect Scale) and life satisfaction (Satisfaction With Life Scale) within 6months following diagnosis. Actor-Partner Interdependence Model (APIM) demonstrated that patients' and caregivers' savouring the moment was positively associated with their own positive affect and life satisfaction (actor effects: βs=0.309-0.603, 95% CIs=0.171-0.502, 0.446-0.703, ps<0.001). Patients' savouring the moment was positively associated with caregivers' positive affect (β=0.158, 95% CI=0.018, 0.299, p=0.028), whereas caregivers' savouring the moment was positively associated with patients' life satisfaction (β=0.158, 95% CI=0.026, 0.289, p=0.020). Partner effects between caregivers' savouring the moment and patients' positive affect and between patients' savouring the moment and caregivers' life satisfaction were not significant. The findings suggest the role of savouring in psychological well-being within patient-caregiver dyads, highlighting the importance of investigating positive psychological pathways in their joint adaptation.

Family Cancer Caregivers Receiving a Specific Supportive Care Intervention Pre- and Postloss

Family Cancer Caregivers Receiving a Specific Supportive Care Intervention Pre- and Postloss

How Family Caregivers Assist with Upstream Healthcare Decision-Making by Community-Dwelling Persons with Advanced Cancer: A Qualitative Study (S821)

1.Describe the roles of family caregivers in patients' healthcare decision-making in the context of advanced cancer.2.Describe two implications for outpatient and community-based early oncology palliative care concerning enhancing decision support for family caregivers. In the palliative care context, the family caregiver role in patients’ healthcare decision-making has focused on being a surrogate decision-maker at end-of-life. Less is known about family caregiver’s role in supporting upstream patient decision-making in advanced cancer. Describe how family members assist community-dwelling relatives with advanced cancer with current and prospective healthcare decisions. Qualitative descriptive study consisting of one-on-one, semi-structured interviews with persons with metastatic cancer and their family caregivers. We elicited family members’ perspectives on how they assist their relatives with any current and prospective healthcare decisions. Transcribed interviews were analyzed using a thematic analysis approach. Co-investigators reviewed and refined themes. Caregivers (n=20) averaged 56 years of age and were mostly female (95%), White (85%), and the patient’s partner/spouse (70%). Patients (n=18) averaged 58 years of age and were mostly male (67%) in “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ decision-making were: 1) seeking information about the cancer, its trajectory, and different treatments options; 2) identifying treatment and disease decision points, including decisions about seeking emergent care; 3) ensuring family members have a common understanding of the patient’s plan of care; 4) initiating and facilitating conversations with patients about coping, values, beliefs, and “what if” scenarios about current and potential future health states and treatments; 5) implementing choices (e.g., providing transportation) and addressing “spillover” decisions (e.g., work arrangements) resulting from medical treatment choices; and 6) making upstream healthcare decisions on behalf of patients who preferred to have decisions made by their family caregivers. These data highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making.

How family caregivers assist with upstream health care decision making by community-dwelling persons with advanced cancer: A qualitative study.

13 Background: In the palliative care context, the family caregiver role in patients’ healthcare decision-making has focused on being a surrogate decision-maker at end of life. Less is known about family caregiver’s role in supporting upstream patient decision-making in advanced cancer. Methods: Qualitative descriptive study consisting of one-on-one, semi-structured interviews with persons with metastatic cancer and their family caregivers. We elicited family members’ perspectives on how they assist their relatives with any current and prospective healthcare decisions. Transcribed interviews were analyzed using a thematic analysis approach. Co-investigators reviewed and refined themes. Results: Caregivers (n = 20) averaged 56 years of age and were mostly female (95%), White (85%), and the patient’s partner/spouse (70%). Patients (n = 18) averaged 58 years of age and were mostly male (67%) in “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ decision-making were: 1) seeking information about the cancer, its trajectory, and different treatments options; 2) identifying treatment and disease decision points, including decisions about seeking emergent care; 3) ensuring family members have a common understanding of the patient’s plan of care; 4) initiating and facilitating conversations with patients about coping, values, beliefs, and “what if” scenarios about current and potential future health states and treatments; 5) implementing choices (e.g., providing transportation) and addressing “spillover” decisions (e.g., work arrangements) resulting from medical treatment choices; and 6) making upstream healthcare decisions on behalf of patients who preferred to have decisions made by their family caregivers. Conclusions: These data highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early palliative care decision support interventions for family caregivers.

Improving Cancer Family Caregivers' Knowledge of Care Options and Goals of Care Communication: Results From a Pilot RCT

Improving Cancer Family Caregivers' Knowledge of Care Options and Goals of Care Communication: Results From a Pilot RCT