Chapter 8 Now what?

Co-production; prisons; criminal justice; youth detentio

Developing Effective Cancer Pain Education Programs

Pain is prevalent, burdensome, and undertreated in individuals with cancer across the disease trajectory. Providing patients and family caregivers psychosocial support and education to manage cancer pain is a core component of quality care that can result in significant clinical benefit. In this review, we (1) outline an approach for developing and assessing the effectiveness of education programs for adults with cancer pain; (2) discuss considerations for tailoring programs to the needs of diverse populations and those with limited health literacy skills; (3) describe the resource needs and costs of developing a program; and (4) highlight innovative approaches to cancer pain education. We conclude with recommendations for future research and the next generation of educational interventions

The relationship between acceptance of cancer and distress: A meta-analytic review

Acceptance of cancer has long been recognized as playing a critical role in psychological adjustment to the illness, but its associations with distress outcomes have not been quantitatively reviewed. Informed by coping theory and third wave conceptualizations of acceptance, we first propose an integrated model of acceptance of cancer. Then we examine the strength of the relationships between acceptance of cancer and general and cancer-specific distress in cancer patients and potential moderators of these relationships. CINAHL, Embase, MEDLINE, PsycINFO, PsycARTICLES, and Web of Science databases were searched. Random-effects meta-analyses were conducted on 78 records (N = 15,448). Small-to-moderate, negative, and significant relationships were found between acceptance of cancer and general distress (r = −0.31; 95% CI: −0.36 to −0.26, k = 75); cancer-specific distress (r = −0.18; 95% CI: −0.21 to −0.14, k = 13); depressive symptoms (r = −0.25; 95% CI: −0.31 to −0.19, k = 41); and anxiety symptoms (r = −0.22; 95% CI: −0.30 to −0.15, k = 29). Age, marital status, and stage of cancer were identified as significant moderators. Findings suggest that acceptance of cancer may be important to target in interventions to reduce general and cancer-specific distress in cancer patients. Future research should focus on developing multifaceted measures of acceptance and identifying theory-based psychological and social processes that lead to greater acceptance

Acceptability and Feasibility of a Meaning-Based Intervention for Patients With Advanced Cancer and Their Spouses A Pilot Study

Background: Constructing meaning in cancer leads to improved psychosocial outcomes for patients and survivors. Aim: We tested the feasibility and preliminary efficacy of a meaning-based intervention for couples. Design: The single-arm pilot study tested a 4-session, tailored, activities-based couple’s intervention. Setting/Participants: Twelve adults with incurable cancer and their partners participated either in a university office or at the couple’s home. Results: The study showed good feasibility. One of the two patients depressed at baseline was no longer depressed at postintervention. Patients’ threat appraisals decreased and transcendence increased. In partners, depression, anxiety, and challenge appraisal decreased; threat and secondary appraisals and peace with illness increased. Conclusions: Our findings suggest feasibility and efficacy, and further research and continued evaluation of this intervention are warranted

Relationship of Self-reported Attentional Fatigue to Perceived Work Ability in Breast Cancer Survivors

Background: Breast cancer survivors (BCSs) have identified attentional fatigue, a decrease in the ability to focus, as a persistent daily challenge; however, little is known regarding its impact on work ability. Objective: The purpose of this study was to examine the relationship between attentional fatigue and perceived work ability in BCSs controlling for the known covariates of age, education, household income, and time posttreatment. Methods: A cross-sectional, descriptive design was used. Breast cancer survivors who were currently employed and at least 1 year post-adjuvant treatment participated. Breast cancer survivors completed the Attentional Function Index and Work Ability Index questionnaires. Descriptive statistics, linear regression, and Fisher exact test were used for analysis. Results: Sixty-eight female BCSs, ranging from 29 to 68 years of age (mean, 52.1 [SD, 8.6]) and on average 4.97 (SD, 3.36) years posttreatment, participated. More than one-fourth of BCSs (26.5%) reported poor to moderate perceived work ability, indicating substantial concerns regarding work performance. Attentional fatigue was found to significantly predict perceived work ability (P < .001), explaining 40% of the variance of perceived work ability. Conclusions: Attentional fatigue is a prevalent symptom posttreatment that is negatively related to perceived work ability in BCSs. Implications for Practice: Nurses are in a prime position to assess and intervene to alleviate attentional fatigue to improve work ability. Findings suggest a need for individual, comprehensive survivorship care plans to effectively address symptoms that impact work ability and, ultimately, the quality of life of cancer survivors

Randomized controlled pilot study of mindfulness-based stress reduction for persistently fatigued cancer survivors

OBJECTIVE: Cancer-related fatigue (CRF) is one of the most common, persistent, and disabling symptoms associated with cancer and its treatment. Evidence-based treatments that are acceptable to patients are critically needed. This study examined the efficacy of mindfulness-based stress reduction (MBSR) for CRF and related symptoms. METHOD: A sample of 35 cancer survivors with clinically significant CRF was randomly assigned to a 7-week MBSR-based intervention or wait-list control group. The intervention group received training in mindfulness meditation, yoga, and self-regulatory responses to stress. Fatigue interference (primary outcome) and a variety of secondary outcomes (e.g., fatigue severity, vitality, disability, depression, anxiety, and sleep disturbance) were assessed at baseline, post-intervention, and 1-month follow-up. Bonferroni correction was employed to account for multiple comparisons. Controls received the intervention after the 1-month follow-up. Participants in both groups were followed for 6 months after completing their respective MBSR courses to assess maintenance of effects. RESULTS: Compared to controls, the MBSR group reported large post-intervention reductions as assessed by effect sizes (d) in the primary outcome, fatigue interference (d = -1.43, p < 0.001), along with fatigue severity (d = -1.55, p < 0.001), vitality (d = 1.29, p < 0.001), depression (d = -1.30, p < 0.001), and sleep disturbance (d = -0.74, p = 0.001). Results were maintained or strengthened at 1-month follow-up, the point at which significant improvements in disability (d = -1.22, p < 0.002) and anxiety (d = -0.98, p = 0.002) occurred. Improvements in all outcomes were maintained 6 months after completing the course. MBSR adherence was high, with 90% attendance across groups and high rates of participant-reported home practice of mindfulness. CONCLUSIONS: Mindfulness-based stress reduction is a promising treatment for CRF and associated symptoms

Acceptance and commitment therapy for symptom interference in metastatic breast cancer patients: a pilot randomized trial

PURPOSE: Breast cancer is the leading cause of cancer mortality in women worldwide. With medical advances, metastatic breast cancer (MBC) patients often live for years with many symptoms that interfere with activities. However, there is a paucity of efficacious interventions to address symptom-related suffering and functional interference. Thus, this study examined the feasibility and preliminary efficacy of telephone-based acceptance and commitment therapy (ACT) for symptom interference with functioning in MBC patients. METHODS: Symptomatic MBC patients (N = 47) were randomly assigned to six telephone sessions of ACT or six telephone sessions of education/support. Patients completed measures of symptom interference and measures assessing the severity of pain, fatigue, sleep disturbance, depressive symptoms, and anxiety. RESULTS: The eligibility screening rate (64%) and high retention (83% at 8 weeks post-baseline) demonstrated feasibility. When examining within-group change, ACT participants showed decreases in symptom interference (i.e., fatigue interference and sleep-related impairment; Cohen's d range = - 0.23 to - 0.31) at 8 and 12 weeks post-baseline, whereas education/support participants showed minimal change in these outcomes (d range = - 0.03 to 0.07). Additionally, at 12 weeks post-baseline, ACT participants showed moderate decreases in fatigue and sleep disturbance (both ds = - 0.43), whereas education/support participants showed small decreases in these outcomes (ds = - 0.24 and - 0.18 for fatigue and sleep disturbance, respectively). Both the ACT and education/support groups showed reductions in depressive symptoms (ds = - 0.27 and - 0.28) at 12 weeks post-baseline. Group differences in all outcomes were not statistically significant. CONCLUSIONS: ACT shows feasibility and promise in improving fatigue and sleep-related outcomes in MBC patients and warrants further investigation

Spiritual Experiences of Adults with Advanced Cancer in Outpatient Clinical Settings

Context Adults who have advanced cancer experience distress, and many use religion and spirituality to cope. Research on the spiritual experiences of advanced cancer patients will help guide the provision of high-quality spiritual care. Objectives To qualitatively describe advanced cancer patients’ spiritual experiences of illness. Methods We conducted semi-structured qualitative interviews at a single cancer center with 21 patients with stage IV solid malignancies who had a prognosis of less than 12 months, as estimated by each patient’s medical oncologist. Five investigators conducted a thematic analysis of the transcribed interviews. Results We found 31 patients who were eligible for enrollment, and 21 (67.7%) participated in interviews to thematic saturation. Using a thematic-analysis approach, five major themes emerged. Relationships with family and friends was the most important theme among all 21 patients irrespective of their religious or spiritual identity. Relationship with God and faith community was frequently identified by those who considered themselves spiritually religious. Cancer often led to reflection about the meaning of life and the nature of existential suffering Patients addressed the extent to which identity was changed or maintained through the cancer experience, and some expressed acceptance as a way of coping with illness. Conclusions Spiritual care for dying cancer patients should always include the exploration of relationships with family and friends, as well as God and faith community for some patients. Relationships with family, friends, and God can be a source of strength for many. Making meaning, addressing identity concerns, supporting acceptance as a resource for coping with illness, and acknowledging existential suffering will often arise for these patients

Predicting fear of breast cancer recurrence and self-efficacy in survivors by age at diagnosis

PURPOSE/OBJECTIVES: To determine the effect that age at diagnosis has on fear of breast cancer recurrence and to identify the predictors of fear of recurrence using self-efficacy as a mediator. DESIGN: Cross-sectional survey. SETTING: Two university cancer centers and one cooperative group in the midwestern United States. SAMPLE: 1,128 long-term survivors. METHODS: Survivors were eligible if they were aged 18-45 years (younger group) or 55-70 years (older group) at cancer diagnosis, had received chemotherapy, and were three to eight years postdiagnosis. Fear of recurrence was compared between younger and older groups. Multiple regression analyses were used to test variables' prediction of fear of recurrence and breast cancer survivor self-efficacy, as well as breast cancer survivor self-efficacy mediation effects. MAIN RESEARCH VARIABLES: Fear of recurrence, breast cancer survivor self-efficacy, and age at diagnosis. FINDINGS: Survivors diagnosed at a younger age had significantly higher fear of recurrence, as well as health, role, womanhood, death, and parenting worries. Perceived risk of recurrence, trait anxiety, and breast cancer reminders explained significant variance in fear of recurrence and breast cancer survivor self-efficacy. Breast cancer survivor self-efficacy partially mediated the effects of variables on fear of recurrence. CONCLUSIONS: The findings suggest that breast cancer survivor self-efficacy may have a protective effect for survivors who are younger at diagnosis and have higher perceived risk of recurrence, higher trait anxiety, and more breast cancer reminders. Oncology nurses already use the skills required to support self-efficacy. Additional research is needed to define and test breast cancer survivor self-efficacy interventions. IMPLICATIONS FOR NURSING: Oncology nurses are in a key role to assess fear of recurrence and provide self-efficacy interventions to reduce it in breast cancer survivors. Strategies to efficiently address fear of recurrence to reduce psychological distress in survivorship follow-up care are warranted

Quality of Life in Partners of Young and Old Breast Cancer Survivors

Background: Partners of breast cancer survivors experience the effects of a spouse's cancer years after treatment. Partners of younger survivors (YP) may experience greater problems than partners of older survivors (OP), just as younger survivors experience greater problems than their older counterparts. Objectives: To 1) compare quality of life (QoL) in YP and OP, and 2) determine contributing factors to each group's QoL. Methods: Cross-sectional data were collected from YP (n=227) and OP (n=281) through self-report. MANOVA was used to determine differences between YP and OP on QoL while controlling for covariates. Multiple regression analyses were conducted to determine what contributes to each group's QoL. Results: YP reported better physical function (effect size (ES)= -0.57), lower marital satisfaction (ES=0.39), and lower overall QoL (ES=0.43) than partners of older survivors. Predictors of QoL also differed between partner groups. For YP, overall QoL was predicted by greater physical functioning, fewer depressive symptoms, higher marital satisfaction, higher parenting satisfaction, and more personal resources. R2= .47; F(5, 195)= 35.05; p<.001. For OP, overall QoL was predicted by fewer depressive symptoms, higher parenting satisfaction, higher spirituality, and greater social support from the breast cancer survivor spouse. R2= .33; F(4, 244)= 29.80; p<.001. Conclusions: OP reported greater QoL than YP. Common factors contributing to QoL between YP and OP were fewer depressive symptoms and higher parenting satisfaction. Implications for Practice: Partners of breast cancer survivors may need support coping with their spouse’s/partner’s cancer. Partners of younger survivors may require more support than partners of older survivors.This study was coordinated by the ECOG-ACRIN Cancer Research Group (Robert L. Comis, MD and Mitchell D. Schnall, MD, PhD, Group Co-Chairs) and supported in part by Public Health Service Grants CA189828, CA180795, CA37403, CA35199, CA17145 and CA49883, and from the National Cancer Institute, National Institutes of Health and the Department of Health and Human Services. Its content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute. Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under Award Numbers K05CA175048, T32CA117865-11, and R25CA117865. Its content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health, including the National Cancer Institute or the National Institute of Nursing Research