Psychosocial experiences of cancer survivors and their caregivers in sub-Saharan Africa: A synthesis of qualitative studies.

OBJECTIVE: To synthesize and examine current literature on survivorship experiences and psychosocial oncologic care programs of individuals affected by cancer in sub-Saharan Africa (SSA). METHODS: This was a systematic review guided by the PRISMA 2020 guidelines. We searched 6 databases for articles published from inception to 21 October 2021. Articles were appraised using the Johanna Briggs Institute's Checklist for Qualitative Research. For data synthesis, we used the World Health Organization (WHO) quality of life framework [WHOQOL] to organize experiences into 6 domains/themes. RESULTS: Twenty-five qualitative studies were included in the synthesis. Studies focused on psychosocial care of adults (>18 years) affected by cancer in SSA. The common WHOQOL domains were social relations, spirituality/religion/personal beliefs, and psychological. CONCLUSION: Findings echo need for individuals with cancer and their caregivers. Healthcare professionals are an essential resource for information and support services that can be tailored to individuals need. This synthesis highlighted caregiver stress and stressors from the community that could impact care of individuals with cancer. A holistic approach is needed that incorporates professional and social aspects of care.

Testing the efficacy of a couple-focused, tailored eHealth intervention for symptom self-management among men with prostate cancer and their partners: the study protocol.

BACKGROUND: Men with localized prostate cancer often experience urinary, sexual, bowel, and hormonal symptoms; general distress; pain; fatigue; and sleep disturbance. For men in an intimate relationship, these symptoms disrupt couples' relationships and intimacy. The symptoms also reduce quality of life for both men and their partners, who are often their primary caregivers. Management of the negative effects of cancer and its treatment is a significantly under-addressed supportive care need for these men and their intimate partners. To address these unmet supportive care needs, our interdisciplinary team developed and pilot tested the usability and feasibility of an evidence-based, couple-focused, tailored eHealth intervention, "Prostate Cancer Education & Resources for Couples" (PERC). Based on the adapted stress and coping theoretical framework and developed with stakeholder involvement, PERC aims to improve quality of life for both men and their partners by enhancing their positive appraisals, self-efficacy, social support, and healthy behaviors for symptom management. METHODS: We will test the efficacy of PERC using a population-based, geographically and demographically diverse cohort in a randomized controlled trial. Primary aim: Assess if patients and partners receiving PERC will report greater improvement in their cancer-related quality of life scores than those in the control group (usual care plus the National Cancer Institute prostate cancer website) at 4, 8, and 12 months post-baseline. Secondary aim: Test if patients and partners in PERC will report significantly more positive appraisals and higher levels of coping resources at follow-ups than those in the control group. Exploratory aim: Determine if patient race and ethnicity, education, type of treatment, or couples' relationship quality moderate the effects of PERC on patient and partner QOL at follow-ups. DISCUSSION: This study will provide a novel model for self-managing chronic illness symptoms that impact couples' relationships, intimacy, and quality of life. It addresses the National Institute of Nursing Research's goal to develop and test new strategies for symptom self-management to help patients and caregivers better manage their illness and improve quality of life. It also responds to calls for programs from the Institute of Medicine and American Cancer Society to address treatment-related effects and improve survivors' QOL. TRIAL REGISTRATION: CT.gov NCT03489057.

Quality of life among patients with cancer and their family caregivers in the Sub-Saharan region: A systematic review of quantitative studies.

Guided by the World Health Organization quality of life (WHOQOL) framework, this systematic review aimed to examine evidence about the prevalence and severity of QOL-related health problems and their influencing factors in Sub-Saharan Africa (SSA). We identified eligible publications in English language from PubMed, Cumulative Index of Nursing and Allied Health Literature Plus with Full Text, Embase, APA PsycInfo, Scopus, and African Index Medicus databases. We included quantitative descriptive studies that measured overall and subdomains of QOL as the outcome in adult patients/survivors with cancer in SSA. Twenty-six descriptive cross-sectional studies (27 papers) that were conducted since 1988 in different SSA countries among patients with various types of cancer met our inclusion criteria. We found inconsistencies in how the prevalence and severity of QOL-related health problems have been researched and reported across studies, which complicated comparing findings and drawing conclusions. The most common factors that influenced the overall and subdomains of QOL included coping; internal and external locus of control; symptoms and symptom management; and religious beliefs and religious care. Demographics (e.g., age and marital status), cancer-related factors (cancer stage and type of treatment), and social determinants of health (e.g., education, access to information and resources, financial distress, and urban vs rural residency) also impacted QOL and its subdomains. Our findings indicate the significant need for recognizing and managing QOL-related problems for cancer patients and caregivers in SSA. Research needs to use culturally adapted, standardized assessment tools and analysis approaches to better understand the QOL challenges this population faces. Comprehensive supportive care is needed to address the complex QOL issues in resource-limited SSA.

The Challenges of Enrollment and Retention: A Systematic Review of Psychosocial Behavioral Interventions for Patients With Cancer and Their Family Caregivers.

CONTEXT: Psychosocial behavioral interventions (PBIs) that target patients with cancer and their caregivers face challenges in participant enrollment and retention. OBJECTIVES: 1) Describe characteristics of the patient-caregiver PBI studies; 2) examine participant enrollment and retention rates; 3) identify factors influencing participant enrollment and retention rates; and 4) explore the strategies to promote enrollment and retention rates. METHODS: We identified randomized controlled trials that tested PBIs among adult patients with cancer and caregivers in five electronic databases. We conducted narrative and quantitative analyses to synthesize our findings. RESULTS: Among 55 qualified studies reviewed, most tested the efficacy of PBIs (n = 42) and used two study arms (n = 48). In-person meeting was the most common PBI delivery mode. The primary outcomes included quality of life, physical health, and symptoms. The average of enrollment rates of patient-caregiver dyads was 33% across studies (range 8%-100%; median = 23%). The average retention rate at the end of follow-ups was 69% (range 16%-100%; median = 70%). The number of study arms, recruitment method, type of patient-caregiver relationship, and intervention duration influenced enrollment rates. Study design (efficacy vs. pilot), follow-up duration, mode of delivery, type of relationship, and intervention duration influenced retention rates. Sixteen studies reported retention strategies, including providing money/gift cards upon study completion and/or after follow-up survey, and excluding patients with advanced cancer. CONCLUSION: Researchers need to incorporate effective strategies to optimize enrollment and retention in patient-caregiver PBI trials. Researchers need to report detailed study processes and PBI information to improve research transparency and increase consistency.

Development of a Personalized mHealth Program for Cancer Symptom and Complication Management.

Based on care need assessment of colorectal and bladder cancer (CBC) patients with newly created ostomies (stomas) and caregivers, and with the input of the Wound, Ostomy, and Continence Nurses (WOCNs), we have developed an mHealth complication and symptom monitoring and self-management program, titled PRISMS.