Loneliness, Spirituality, and Health-Related Quality of Life in Hispanic English-Speaking Cancer Caregivers: A Qualitative Approach.

Hispanic caregivers experiencing higher caregiving burden than their non-Hispanic cohorts, due in part to contextual factors, such as barriers to accessing health care, challenging employment environments, low education and income, immigration issues, and minority stress. Spirituality may serve as a coping strategy for Hispanic caregivers that influences health-related quality of life (HRQoL), possibly by modifying loneliness associated with caregiving. We explored these concepts using semi-structured interviews (N = 10 Hispanic caregivers). Participants shared perceptions of loneliness, spirituality, and how these factors related to HRQoL. Five themes emerged: caregiver experience, coping strategies, loneliness, religion and spirituality to gain strength. Findings suggested that spirituality and religion improved HRQoL partially by reducing loneliness. Future programs to improve HRQoL in Hispanic English-speaking cancer caregivers should address spirituality.

Family caregivers of those with cancer: quality of life outcomes from a sequential multiple assignment randomized trial.

PURPOSE: To conduct a secondary analysis focused on health-related quality of life (HRQOL) among caregivers engaged in a 12-week complementary therapy sequential multiple assignment randomized trial (SMART) of reflexology and/or meditative practices (MP), to manage cancer patients' symptoms. METHODS: In this SMART, patient-caregiver dyads were initially randomized to 4 weeks of caregiver-delivered reflexology for the patient (N = 150), MP with the patient (N = 150), or control (N = 47). After 4 weeks, dyads with patients not improving on fatigue (non-responders, n = 69 to reflexology and n = 57 to MP) were re-randomized to continue the same therapy or add the other therapy for an additional 4 weeks. Week-12 caregiver HRQOL was measured using the Patient Reported Outcomes Measurement Information System (PROMIS) Profile-29 and the Caregiver Reaction Assessment Tool (CRAT) for caregiver burden; scores were analyzed using general linear models. RESULTS: In the comparison of 4 adaptive intervention sequences: reflexology for 8 weeks, reflexology for 4 weeks followed by MP for 4 weeks if no response to reflexology, MP for 8 weeks, and MP for 4 weeks followed by reflexology for 4 weeks if no response to MP, there were no differences in PROMIS-29 scores. However, CRAT domains of impact on schedule, family support, and finances worsened when adding reflexology after the first 4 weeks of MP. The CRAT domain of health worsened by adding either intervention compared to continuing the same one. CONCLUSIONS: Clinicians should be aware that caregiver engagement in more than one complementary therapy may increase caregiver burden in some domains but not affect other HRQOL domains. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT02759146.

Exploring the relationship between loneliness, spirituality, and health-related quality of life in Hispanic cancer caregivers.

Caregivers of cancer patients find it challenging to perform their roles and to meet the demands of caregiving. Spirituality has been investigated as a potential coping strategy employed by caregivers, yet spirituality and related practices vary among cultural groups. In this study, we investigated the relationship between spirituality and health-related quality of life (HRQOL) and evaluated mediation effects of loneliness on this relationship. The sample was 234 lower socioeconomic status (SES) Hispanic caregivers of breast cancer survivors using existing data from the Support for Latinas with Breast Cancer and Their Intimate and Family Partners study, funded by the American Cancer Society (Badger, PI). A cross-sectional analysis was conducted at baseline, using self-reported spirituality, loneliness, and HRQOL data collected from 2012 to 2017. The exposures and outcomes were assessed using the Spiritual Well-Being Scale, the Social Isolation-Short Form 8a PROMIS Item Bank v2.0 scale, and the Global Health Scale PROMIS v.1.0/1.1 scale. Descriptive and mediation analyses using the Preacher and Hayes' approach were conducted to estimate the direct effect of spirituality on HRQOL and the indirect effect of spirituality through mediation of loneliness in relation to HRQOL. A positive association between spirituality and HRQOL was found, whereas loneliness was inversely associated with HRQOL (b = - .18, SE = .03, p < .0001). Age did not function as a moderator of the spirituality-HRQOL association in any of the models tested, but in the model testing mediation, loneliness was shown to mediate the association between spirituality and HRQOL (b = - .17, p < .0001). These results suggest that spirituality may be beneficial to HRQOL in caregivers of Hispanic breast cancer survivors, due in part to reduced loneliness among more spiritual caregivers.

Reflexology and meditative practices for symptom management among people with cancer: Results from a sequential multiple assignment randomized trial.

Optimal sequencing of complementary therapies can help improve symptom management through nonpharmacological approaches. A 12-week sequential multiple assignment randomized trial comparing home-based reflexology and meditative practices on severity of fatigue and other symptoms was conducted among patients with cancer and their informal caregivers. Dyads were initially randomized to reflexology (N = 150), meditative practices (N = 150), or control (N = 47). If patient's fatigue did not improve (nonresponse) after 4 weeks of reflexology or meditative practices, the dyad was rerandomized to either add the other therapy or continue with the original therapy for weeks 5-8. Four decision rules (DRs) were compared: (1) Initiating reflexology, and if nonresponse on fatigue after 4 weeks, continue with reflexology for another 4 weeks, thus providing a higher dose; (2) Initiating reflexology, and if nonresponse on fatigue after 4 weeks, add meditative practices for the next 4 weeks; (3) Initiating meditative practices, and if nonresponse on fatigue after 4 weeks, continue meditative practices for another 4 weeks, thus providing a higher dose; and (4) Initiating meditative practices, and if nonresponse on fatigue after 4 weeks, add reflexology for the next 4 weeks. Symptoms were evaluated weekly using the M.D. Anderson Symptom Inventory (MDASI). Clinically, nurses can recommend either therapy since no differences were found among the 4 DRs, with the exception of lower severity for summed MDASI symptoms at week 8 for the use of reflexology only (DR-1) versus DR-2 (sequencing reflexology to meditative practices). Adding the other therapy for nonresponders after 4 weeks may not be warranted.

Implementation of Un Abrazo Para La FamiliaTM in southern Arizona with extension to survivors and assessment of effects on distress.

Introduction: Un Abrazo Para La FamiliaTM [Embracing the Family] (Abrazo) is a 3-hr psychoeducational intervention designed for low-income informal caregivers who are cosurvivors of cancer. A rehabilitation-informed preventive intervention, Abrazo reflects the importance of family, culture, and socioeconomic background. A pilot study was conducted to inform a larger geographic implementation of Abrazo. The aims were to determine if previous outcomes of increased cancer knowledge and self-efficacy could be replicated and to investigate intervention effects on distress. Method: A pretest-posttest design was used to assess changes in cancer knowledge, self-efficacy, and distress for Abrazo participants. Distress was measured with the American Medical Association's Caregiver Assessment (Epstein-Lubow et al., 2010) and the National Comprehensive Cancer Network Distress Thermometer (Donovan et al., 2014; Forsythe et al., 2013; Fulcher & Gosselin-Acomb, 2007). The Patient Health Questionnaire-4 (PHQ-4) (Kroenke et al., 2009) measured symptoms of anxiety and depression. Results: Both survivors (n = 37) and cosurvivors (n = 103) increased in cancer knowledge and self-efficacy after completing Abrazo. Mean levels of distress and symptoms decreased for cosurvivors, but not for survivors. At study entry, 19% of cosurvivors and 12% of survivors scored ≥6/12 on the PHQ-4, the standard cutoff for clinically significant symptoms. Only 13% of cosurvivors, but 30% of survivors exceeded this threshold at three-month follow-up. Elevated symptoms persisted in 12% of survivors from baseline to follow-up; in 18% of survivors, symptoms rose between baseline and follow-up. Discussion: Increased cancer knowledge and self-efficacy in participants replicates evidence of Abrazo's effectiveness. The result of decreased distress in cosurvivors extends our understanding of Abrazo's effectiveness with this population. The increase in distress in cancer survivors warrants further attention to their intervention needs. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Cognitively-Based Compassion Training versus cancer health education to improve health-related quality of life in survivors of solid tumor cancers and their informal caregivers: study protocol for a randomized controlled pilot trial.

BACKGROUND: Cancer survivors and their informal caregivers (family members, close friends) often experience significant impairments in health-related quality of life (HRQOL), including disruptions in psychological, physical, social, and spiritual well-being both during and after primary cancer treatment. The purpose of this in-progress pilot trial is to determine acceptability and preliminary efficacy (as reflected by effect sizes) of CBCT® (Cognitively-Based Compassion Training) compared with a cancer health education (CHE) attention control to improve the primary outcome of depressive symptoms and secondary outcomes of other HRQOL domains (e.g., anxiety, fatigue), biomarkers of inflammation and diurnal cortisol rhythm, and healthcare utilization-related outcomes in both cancer survivors and informal caregivers. METHODS: Forty dyads consisting of solid tumor survivors who have completed primary treatments (chemotherapy, radiation, surgery) and their informal caregivers, with at least one dyad member with ≥ mild depressive symptoms or anxiety, will be recruited from Tucson, Arizona, USA. Survivor-caregiver dyads will be randomized together to complete either CBCT or CHE. CBCT is a manualized, 8-week, group meditation-based intervention that starts with attention and mindfulness and builds to contemplative practices aimed at cultivating compassion to the self and others. The goal of CBCT is to challenge unexamined assumptions about feelings and behaviors, with a focus on generating spontaneous self-compassion and increased empathic responsiveness and compassion for others. CHE is an 8-week, manualized group intervention that provides cancer-specific education on various topics (e.g., cancer advocacy, survivorship wellness). Patient-reported HRQOL outcomes will be assessed before, immediately after (week 9), and 1 month after CBCT or CHE (week 13). At the same time points, stress-related biomarkers of inflammation (e.g., plasma interleukin-6) and saliva cortisol relevant for survivor and informal caregiver wellness and healthcare utilization will be measured. DISCUSSION: If CBCT shows acceptability, a larger trial will be warranted and appropriately powered to formally test the efficacy of this dyadic intervention. Interventions such as CBCT directed toward both survivors and caregivers may eventually fill a gap in supportive oncology care programs to improve HRQOL and healthcare utilization in both dyad members. TRIAL REGISTRATION: Clinicaltrials.gov, NCT03459781 . Prospectively registered on 9 March 2018.

Well-being, Self-transcendence, and Resilience of Parental Caregivers of Children in Active Cancer Treatment: Where Do We Go From Here?

BACKGROUND: Childhood cancer profoundly impacts the well-being of many parental caregivers in the United States yearly. Empirical evidence is extensive for negative well-being and scarce for positive well-being in this population. OBJECTIVE: Study aims were to (1) describe resilience, self-transcendence, and positive (general well-being) and negative well-being (depression and anxiety); (2) examine if caregiver-related personal factors (resilience and/or demographic characteristics) and/or child-related contextual factors (child's cancer and/or demographic characteristics) are associated with well-being; and (3) test if self-transcendence mediates the relationship between resilience and well-being. METHODS: A cross-sectional study whereby 80 caregivers of children diagnosed with childhood cancer for at least 2 months completed study questionnaires. Descriptive statistics explored sample demographics, well-being, self-transcendence, and resilience levels. Bivariate correlations examined factors associated with well-being. One-way analysis of variance and independent-samples t tests explored differences in well-being across levels of independent variables. Baron and Kenny's mediation analysis tested if self-transcendence mediated the relationship between resilience and well-being. RESULTS: Positive well-being and negative well-being coexist in parental caregivers. No child-related contextual factors related to caregivers' well-being. Parental caregivers' resilience and self-transcendence positively related to their general well-being and negatively related to their depression and anxiety. Satisfaction with current financial status positively related to general well-being and negatively related to depression. Self-transcendence mediated the relationship between resilience and well-being. CONCLUSIONS: Findings confirm the importance of focusing on both positive and negative well-being, their associated factors, and mediators. IMPLICATIONS FOR PRACTICE: The authors discuss practice implications to enhance self-transcendence such as journaling, mindfulness techniques, activities to connect with nature, and others.

PROMIS and legacy measures compared in a supportive care intervention for breast cancer patients and caregivers: Experience from a randomized trial.

OBJECTIVE: Accurate and efficient measurement of patient-reported outcomes is key in cancer symptom management trials. The newer Patient Reported Outcomes Measurement Information System (PROMIS) and previously developed measures of similar conceptual content (legacy) are available to measure symptoms and functioning. This report compares the performance of two sets of measures, PROMIS and legacy, in a recently completed trial of a supportive care intervention that enrolled breast cancer patients and their friend or family caregivers. METHODS: Patient-caregiver dyads (N = 256) were randomized to either reflexology delivered by caregivers or usual care control. Post-intervention, PROMIS and legacy measures of symptoms and functioning were analyzed in relation to trial arm, while adjusting for baseline values. Responsiveness of the two sets of measures was assessed using effect sizes and P-values for the effect of trial arm on patients' and caregivers' symptom and functioning outcomes. RESULTS: Similar conclusions about intervention effects were found using PROMIS and legacy measures for pain, fatigue, sleep, anxiety, physical, and social functioning. Different conclusions were obtained for patient and caregiver depression: legacy measures indicated the efficacy of reflexology, while PROMIS depression measure did not. CONCLUSION: Evidence of similar responsiveness supports the use of either set of measures for symptoms and functioning in clinical and general populations. Differences between PROMIS and legacy measures of depression need to be considered when choosing instruments for use in trials of supportive care interventions and in clinical practice.

Using SMART design to improve symptom management among cancer patients: A study protocol.

In this in-progress sequential multiple assignment randomized trial (SMART), dyads of solid tumor cancer patients and their caregivers are initially randomized to 4 weeks of reflexology or meditative (mindfulness) practices provided by/with their caregiver in the patient's home or to a control group. After 4 weeks, intervention group dyads in which patients do not show improvement in fatigue (non-responders) are re-randomized to either receive additional time with the same therapy during weeks 5-8 or to add the other therapy. The aims are (1) to compare reflexology and meditative practices groups during weeks 1-4 on patients' fatigue severity, summed symptom inventory score, depressive symptoms, and anxiety, so as to determine the relative effectiveness of these therapies and the characteristics of responders and non-responders to each therapy. (2) Among reflexology non-responders based on fatigue score at week 4, to determine patient symptom outcomes when meditative practices are added during weeks 5-8, versus continuing with reflexology alone. (3) Among meditative practices non-responders based on fatigue score at week 4, to determine patient symptom outcomes when reflexology is added during weeks 5-8, versus continuing with meditative practices alone. (4) To compare improvements in patient symptom outcomes among the three groups created by the first randomization. (5) To explore which dyadic characteristics are associated with optimal patient symptom outcomes, to determine tailoring variables for decision rules of future interventions. The trial has a target of 331 dyads post-attrition and has 150 dyads enrolled. We are overcoming challenges with dyadic recruitment and retention while maintaining fidelity.

Putting evidence into practice: interventions for depression.

Depression and depressive symptoms are prevalent in people with cancer, yet interventions for depression are a low priority for most oncology care providers. Barriers to diagnosis and treatment include beliefs by patients and providers that depression is an expected correlate of cancer diagnosis, the reluctance of patients to share psychological concerns, and the reticence of some professionals to assess patients with cancer for depressive symptoms in the midst of busy oncology settings. Intervening to diminish depressive symptoms in people with cancer is important because depression has been associated with poorer quality of life, recovery, and possibly survival. This article reviews and summarizes the evidence for pharmacologic and nonpharmacologic interventions for people with cancer and depression and identifies opportunities for future research and practice change.