Ann Schafenacker

Randomized clinical trial of a family intervention for prostate cancer patients and their spouses

Few intervention studies have been conducted to help couples manage the effects of prostate cancer and maintain their quality of life. The objective of this study was to determine whether a family‐based intervention could improve appraisal variables (appraisal of illness or caregiving, uncertainty, hopelessness), coping resources (coping strategies, self‐efficacy, communication), symptom distress, and quality of life in men with prostate cancer and their spouses.

Coping strategies and quality of life in women with advanced breast cancer and their family caregivers

Coping with advanced breast cancer is a challenge for both women and their family caregivers. The primary purposes of this study were to compare coping strategies used by patients with advanced breast cancer and their family caregivers and to examine how those strategies related to patient and caregiver quality of life. The sample consisted of 189 patient-family member dyads with advanced breast cancer. Profile analysis showed that patients reported greater use of emotional support, religion, positive reframing, distraction, venting, and humor coping while family members reported greater use of alcohol/drug coping. Regression analyses showed that among both patients and family caregivers, active coping was associated with higher quality of life and avoidant coping was associated with lower quality of life. In addition, the patient’s level of symptom distress moderated the relationship between coping and quality of life. The negative relationship between family caregivers’ avoidant coping strategies and family caregivers’ mental quality of life was strongest when patients had low levels of symptom distress and weakest when patients had high levels of symptom distress.

The Impact of Caregiving on the Psychological Well-Being of Family Caregivers and Cancer Patients

OBJECTIVES To provide an overview of patient and caregiver emotional distress; examine the sources of their distress, review evidence-based interventions that can reduce distress, and provide guidelines for assessment and intervention. DATA SOURCES Peer-reviewed publications. CONCLUSION There is a significant, reciprocal relationship between patient and caregiver emotional distress. Sources of distress vary by phase of illness. Evidence-based interventions can reduce distress and anxiety, but often are not implemented in practice. IMPLICATIONS FOR NURSING PRACTICE Nurses need to assess patients and family caregivers for distress and intervene to reduce distress by fostering patient-caregiver teamwork, communication, and self-care; providing information; and referring to resources as needed.

A family-based program of care for women with recurrent breast cancer and their family members.

PURPOSE/OBJECTIVES To evaluate the FOCUS Program (family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management), a family-based program of care for women with recurrent breast cancer and their family caregivers. DATA SOURCES Randomized clinical trial. SETTING Midwest region of the United States. DATA SYNTHESIS The family-based program of care consisted of five components: family involvement, optimistic attitude, coping effectiveness, uncertainty reduction, and symptom management. The program was delivered in three home visits and two follow-up phone calls over a five-month period of time. CONCLUSIONS Patients with recurrent breast cancer and their family members reported high satisfaction with the FOCUS Program. Although the FOCUS Program had a number of strengths, limitations of the program also were identified that need to be addressed in future family-based interventions. IMPLICATIONS FOR NURSING A need exists for family-based programs of care that enable both patients and their family members to manage the multiple demands associated with recurrent breast cancer.

A tailored web-based psychoeducational intervention for cancer patients and their family caregivers

Background: Most programs addressing psychosocial concerns of cancer survivors are in-person programs that are expensive to deliver, have limited availability, and seldom deal with caregivers’ concerns. Objective: This study examined the feasibility of translating an efficacious nurse-delivered program (FOCUS Program) for patients and their caregivers to a tailored, dyadic Web-based format. Specific aims were to (1) test the preliminary effects of the Web-based intervention on patient and caregiver outcomes, (2) examine participants’ program satisfaction, and (3) determine the feasibility of using a Web-based delivery format. Methods: A phase 2 feasibility study was conducted with cancer patients (lung, breast, colorectal, prostate) and their family caregivers (N = 38 dyads). The Web-based intervention provided information and support tailored to the unique characteristics of each patient, caregiver, and their dyadic relationship. Primary outcomes were emotional distress and quality of life. Secondary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included descriptive statistics and repeated-measures analysis of variance. Results: Dyads had a significant decrease in emotional distress, increase in quality of life, and perceived more benefits of illness/caregiving. Caregivers also had significant improvement in self-efficacy. There were no changes in communication. Participants were satisfied with program usability, but recommended additional content. Conclusions: It was possible to translate a clinician-delivered program to a Web-based format that was easy to use and had positive effects on dyadic outcomes. Implications for Practice: The Web-based program is a promising way to provide psychosocial care to more patients and caregivers using fewer personnel. It needs further testing in a larger randomized clinical trial.

Adapting an in-person patient–caregiver communication intervention to a tailored web-based format

Background: Interventions that target cancer patients and their caregivers have been shown to improve patient‐caregiver communication, support, and emotional well‐being.

A randomized controlled trial of a self-management psychosocial intervention for men with prostate cancer and their partners: a study protocol

BACKGROUND Little is known about interventions to help men and their partners cope with the after effects of prostate cancer treatment. The lack of in-depth descriptions of the intervention content is hindering the identification of which intervention (or component of an intervention) works. AIM To describe the development and evaluation of the content of a self-management psychosocial intervention for men with prostate cancer and their partners. DESIGN A feasibility randomized controlled trial including structure, process, and outcome analysis. METHODS This 9-week intervention commences on completion of treatment and consists of three group and two telephone sessions. The intervention focuses on symptom management, sexual dysfunction, uncertainty management, positive thinking and couple communication. Forty-eight couples will be assigned to either the intervention or a control group receiving usual care. Participants will be assessed at baseline, immediately postintervention and at 1 and 6 months postintervention. Outcome measures for patients and caregivers include self-efficacy, quality of life, symptom distress, uncertainty, benefits of illness, health behaviour, and measures of couple communication and support. An additional caregiver assessment will be completed by the partner. DISCUSSION The main purpose of this feasibility study is to investigate the acceptability of the CONNECT programme to men with prostate cancer and their partners and to gain feedback from the participants and facilitators to make changes to and enhance the programme. Reasons why men do not want to participate will be collated to enhance recruitment in the future. We will also test recruitment strategies, randomization procedures, and the acceptability of the questionnaires. Ethical approval granted December 2010.

Implementation of a Psychoeducational Program for Cancer Survivors and Family Caregivers at a Cancer Support Community Affiliate: A Pilot Effectiveness Study.

Background: Psychoeducational interventions, tested for efficacy in randomized clinical trials, are seldom implemented in clinical practice where cancer survivors and their family caregivers can benefit from them. Objective: This study examined the effectiveness of the FOCUS Program on cancer survivors’ and their family caregivers’ outcomes when implemented at a Cancer Support Community (CSC) affiliate by agency social workers. Study aims were to (1) test effects of the program on survivor and caregiver outcomes as a unit and (2) determine program feasibility in terms of enrollment, retention, intervention fidelity, and satisfaction. Methods: A preintervention and postintervention pilot effectiveness study was conducted with 34 cancer survivor-caregiver dyads (ie, pairs). The FOCUS Program, originally delivered by nurses in dyads’ homes, was modified to a small-group format and delivered by CSC social workers. The primary outcome was quality of life (QOL). Intermediary outcomes were benefits of illness/caregiving, communication, support, and self-efficacy. Analyses included repeated-measures analysis of variance. Results: Dyads had significant improvements in total QOL; physical, emotional, and functional QOL; benefits of illness; and self-efficacy. Effect sizes were similar to prior randomized clinical trial findings. Although dyads were difficult to recruit (enrollment, 60%), both retention (92%) and intervention fidelity (94%) were high. Conclusions: It was possible to implement the FOCUS Program at a CSC affiliate by agency staff, obtain positive intervention effects, and maintain intervention fidelity. Implications for Practice: Researchers and clinicians need to collaborate to implement more evidence-based interventions in practice settings for cancer survivors and their family caregivers.

Multilingual Self-Management Resources for Prostate Cancer Survivors and Their Partners: Results of a Long-Term Academic-State Health Department Partnership to Promote Survivorship Care

OBJECTIVE To provide innovative, evidence-based self management information and supportive care for prostate cancer survivors and their partners. We describe how an academic-public partnership facilitated the broad dissemination of evidence-based, multilingual survivorship educational materials via a state-managed prostate cancer website. METHODS We outline the steps of an academic-public partnership leading to dissemination of online, survivorship materials as a resource for prostate cancer survivors and their partners. We examined the 5-year utilization of the materials from January 2011 to December 2015 according to 14 content areas (e.g., urinary, bowel, and sexual problems, fatigue, communication, cancer stress) and across 3 languages (English, Spanish, Arabic). RESULTS The total number of prostate cancer survivorship materials downloaded from January 2011 to December 2015 was 89,348. The number of downloaded materials increased over time from 6,421 in 2011 to 17,496 in 2015. The most commonly downloaded content area was urine problems (27.5%), followed by bowel problems (23.4%) and sexual side effects (16.2%). The majority of downloaded materials was in English (86.3%), followed by Spanish (9.8%) and Arabic (3.9%). CONCLUSION The academic-public partnership facilitated broad dissemination of evidence-based informational materials for prostate cancer survivors and their partners through a state-managed website from 2011 to 2015. Given the increasing role of academic-public partnerships in funding and development of robust, sustainable prostate cancer survivorship resources, this work serves as an introduction to these evidence-based materials and highlights a successful model of engagement between practitioners, research scientists, and public health administration.

Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study

Background Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. Objective The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. Methods We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. Results The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master’s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. Conclusions Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. Trial Registration ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv)