Table 1:
Study Characteristics
| Author | Purpose/Caregiver Characteristics | Study Type/Participants | Theory/Concept | Caregiver of Individual at End-of-Life or with Advanced Cancer |
|---|---|---|---|---|
| Bachner & Carmel, 2009 | Examine open communication about end-of-life and caregiver/situational variables related to open communication; participants from south and Central Israel, mean age 55, 77% female, 48% child and 45% spouse/partner | Cross-sectional; Descriptive, correlational Caregivers | Concept: Family communication | Yes, individuals with terminal cancer |
| Bachner, Yosef-Sela, & Carmel, 2014 | Compare level of open communication between Ashkenazi and Sephardi Jews and examine caregiver/situational variables affecting open communication; Ashkenazi (36) and Sephardi (41); mean age 70.35; 62.3% female | Cross-sectional; Descriptive, correlational Caregivers | Concept: Caregiver-patient communication | Yes, individuals with terminal cancer |
| Badger et al., 2020 | Test two 2-month psychosocial interventions for Latinas with breast cancer and informal caregivers; caregivers of Latina breast cancer survivors, mean age (44), spouses (30%), child (30%) | RCT Dyads | Concept: Quality of life | No, individual in active treatment or completed treatment within 1 year |
| Badr, Smith, Goldstein, Gomez, & Redd, 2015 | Examine feasibility, acceptability, and preliminary efficacy of psychosocial intervention in lung cancer dyads; Mostly female (69%); mean age 51, 51% spouse/partner | Randomized Pilot Trial Dyads | Theory: Self-Determination Theory | Yes, individuals with advanced cancer |
| Barber, 2013 | Explore relationships between social support, self-efficacy for physical activity, physical activity behavior, and quality of life in survivors and caregivers; Mean age 65, mostly female (74%), mostly white (83%) | Quasiexperimental, mixed methods Cancer survivors and caregivers | Concept: Social Support | Mixed, individuals with cancer stage I-IV |
| Barber, 2012 | Explore differences and relationships between survivor and caregiver social support, self-efficacy for physical activity, physical activity, and quality of life; Mean age 62, 74% female, 77% white, 54% spouse | Quasiexperimental, mixed methods (Dissertation) Cancer survivors and caregivers | Theory: Social Cognitive Theory | Mixed, individuals with cancer stage I-IV |
| Bevans et al., 2014 | Determine effect of problem-solving education on self-efficacy and distress; 72% female, 78% white, mean age of 53, 47% spouse, 44% family member nonspouse | Quasiexperimental: Longitudinal, repeated measures design Care recipient and caregiver teams | Concept: Problem-solving | Unclear, individuals receiving stem-cell transplant, but prognosis not specified |
| Cameron, Shin, Williams, & Stewart, 2004 | Evaluate a brief problem-solving intervention for family caregivers; 68% female, mean age 54, 74% spouse | Quasiexperimental: one-sample pretest/post-test Dyads | Theory: Stress Appraisal and Coping theory | Yes, individuals with advanced cancer |
| Campbell et al., 2004 | Examine relationship between patient and partner ratings of self-efficacy, symptom control and quality of life; mean age 58, all spouse/partner, all partners to African American with prostate cancer, but no caregiver race included | Cross-sectional, comparison study Dyads | Concept: Self-efficacy | Unclear, individuals with prostate cancer who have completed treatment |
| Collinge, Kahn, Yarnold, Bauer-Wu, & McCorkle, 2007 | Examine feasibility of brief massage instruction and touch therapy for caregivers; mean age 53, 66% male, 86% white, all spouse/partner | Quasiexperimental: feasibility, longitudinal within-subjects, repeated measures, control and intervention phases Dyads | Concept: Distress | Unclear, individuals receiving or had received conventional cancer treatment |
| DeSanto-Madeya et al., 2009 | To examine how EOL treatment factors and psychosocial factors differ based on acculturation; 74% female, 47% white and Hispanic 43%, mean age 50, 51% spouse | Cross-sectional Caregivers | Concept: Culture and End-of-Life Decision-Making | Yes, individuals at end-of-life |
| Dionne-Odom et al., 2017 | To explore differences in caregivers’ self-care practices associated with varying level of well-being, preparedness, and decision-making self-efficacy; average age 66 years, 73% female, 91% white, 60% spouse | Cross-sectional survey Caregivers | Theory: Pender’s Health Promotion Model and Riegel’s Middle-Range Theory of Self-Care of Chronic Illness | Yes, individuals with stage IV cancer |
| Dockham et al., 2016 | Examine effectiveness of FOCUS program on cancer survivor and caregiver outcomes; mean age 53, 65% male, 86% white, 92% spouse | Preintervention, postintervention feasibility study Dyads | Theory: Stress Coping Theory | Mixed, individuals with any stage of cancer |
| Duggleby et al., 2013 | Examine effects of Living with Hope on self-efficacy, loss and grief, hope, and quality of life in rural female caregivers; mean age 59 and 86% were spouses, 92% white | Mixed methods, time series design Caregivers | Concept: Hope | Yes, individuals with advanced cancer |
| Duggleby et al., 2014 | To determine factors influencing hope of rural female caregivers; mean age 59, 66% spouses, 83% white, all female | Cross-sectional correlational design Caregivers | Concept: Hope | Yes, individuals with advanced cancer |
| Duggleby et al., 2017 | To explore the transition experience of family caregivers, triggers for transitions, and develop a conceptual framework; mean age 59, 71% female, and 49% spouses | Metasynthesis Caregivers | Concept: Transitions | Yes, individuals with advanced cancer |
| Duggleby et al., 2015 | To describe types of transitions of male caregivers of women with breast cancer and examine factors related to their quality of life; 85% white, all male, all spouses, mean age 61 | Cross-sectional, mixed methods Dyads | Concept: Transitions | No, individuals with cancer stage I-III |
| Duggleby, Doell, Cooper, Thomas, & Ghosh, 2014 | To examine the relationship of quality of life of male spouses of partners with breast cancer; mean age 59, 84% white, all male, all spouse/partner | Cross-sectional correlational design Caregiver | Concept: Quality of life | No, individuals with breast cancer stages I-III |
| Duggleby et al., 2017 | To evaluate feasibility of a web-based psychosocial support intervention; all male, all spouse/partner, mean age 55, 90% male | RCT, mixed methods, concurrent feasibility Dyads | Theory: Transitions Theory | No, individuals with breast cancer stages I-III |
| Ellis et al., 2017 | Examine influence of patient and caregiver symptom distress on threat appraisals and self-efficacy; mean age 57, 57% female, 80% white, and 70% spouse | Secondary analysis of baseline data from RCT Dyads | Concepts: Threat appraisals and self-efficacy | Yes, individuals with advanced cancer |
| Havyer et al., 2017 | Examine relationship between training during routine cancer care and self-efficacy among caregivers of colorectal cancer patients; 90% female, 68% spouse/partner, mean age 61, 77% white | Cross-sectional Caregivers | Concept: Self-efficacy | Unclear, individuals diagnosed with colorectal cancer |
| Hendrix et al., 2016 | Examine effects of enhanced informal caregiver training in cancer symptom and caregiver stress management on caregivers; mean age 55, 77% white, 83% female, 67% spouse | 2-armed RCT Dyads | Concept: Self-efficacy | Unclear, individuals admitted to oncology unit for treatment or cancer-related complications |
| Hendrix, Abernethy, Sloane, Misuraca, & Moore, 2009 | Investigate if an individualized and experiential training can promote family caregiver self-efficacy in home care and symptom management; mean age of 62, 85% female, 85% white, and 65% spouse | Pilot study, quasi-experimental, one group repeated measures Caregivers | Concept: Self-efficacy | Unclear, no cancer stage indicated, individuals actively dying were excluded |
| Hendrix, Landerman, & Abernethy, 2013 | Investigate effects of individualized caregiver training program on self-efficacy in home care and symptom management; 50% female, mostly 46-54 years of age (41.7%-53.3%), mostly white (81.7%-86.7%), mostly spouses (70%-83%) | RCT Dyads | Concept: Self-efficacy | Unclear, individuals with hematological malignancy and admitted to hospital for cancer-related treatment or complications |
| Hu, Peng, Su, & Huang, 2018 | Investigate caregiver burden and factors relating to burden in Chinese caregivers of individuals with lung cancer; 58% female, less than or equal to 50 years of age (39%), Chinese caregivers, 60% spouse | Cross-sectional Dyads | Concept: Caregiver burden | Unclear, no cancer stage indicated for individuals |
| Hudson, Hayman-White, Aranda, & Kristjanson, 2006 | Determine if it is possible to predict psychosocial functioning of family caregivers; 66% female, mean age 60, 62% spouse | Secondary analysis of baseline data from RCT Caregivers | Concept: Caregiver psychosocial functioning | Yes, individuals with advanced cancer |
| Hudson, Aranda, & Hayman-White, 2005 | Evaluate psychoeducational program for family caregivers of patients dying at home; 65% female, mean age of 61, 74% Australian born | RCT Caregivers | Concept: Stress and Coping Framework | Yes, individuals with advanced cancer |
| Ito & Tadaka, 2017 | Identify factors associated with quality of life among family caregivers of patients with terminal cancer at home; mean age 64, 80% female, 54% spouse, Japanese | Epidemiological cross-sectional study Caregivers | Concept: Quality of life | Yes, individuals with terminal cancer |
| Johansen, Cvancarova, & Ruland, 2018 | Examine effect of cancer patients’ and caregiver symptoms and demographic characteristics on caregiver burden at initiation of patient radiation treatment; mean age 56, 81% spouse, 53% female | Cross-sectional Dyads | Concept: Caregiver burden | Unclear, individuals with recent diagnosis or new recurrence |
| Kazanowski, 2005 | Understand process of medication management in terminal patients from the perspective of caregivers; all female, mean age of 54, 70% spouse | Qualitative, grounded theory Caregivers | Concept: Symptom management | Yes, individuals at end-of-life |
| Keefe et al., 2003 | Examine self-efficacy of family caregivers in managing cancer patients’ pain at the end of life; 90% spouse/partner, mean age 58, 81% white, 67% female | Secondary analysis of baseline data from RCT Dyads | Concept: Self-efficacy | Yes, individuals who are hospice eligible |
| Keefe et al., 2005 | Test efficacy of partner-guided cancer pain management protocol for patients at the end of life; mean age 59, 62% female, 79% white and 20% African American, 76% spouses | RCT Dyads | Concept: Caregiver training | Yes, individuals at end-of-life |
| Kershaw et al., 2008 | Examine stress-coping model to assess whether baseline variables predict subsequent appraisal and how appraisal predicts coping and quality of life for prostate cancer patients and their spouses; all spouses, 86% white and 13% African American, mean age 59 | Secondary analysis from larger RCT Dyads | Theory: Stress-Coping Model | Mixed, individuals with all stages of prostate cancer |
| Kershaw et al., 2015 | Use SCT to investigate individual and interpersonal influences on patients’ and family caregivers’ mental health, physical health, and self-efficacy; mean age 57, 57% female, 83% white and 14% African American, 74% spouse | Longitudinal secondary analysis from RCT Dyads | Theory: Social-Cognitive Theory | Yes, individuals with advanced cancer |
| Kim, Duberstein, Sorensen, & Larson, 2005 | Identify personality correlates of depressive symptoms in spouses of people with lung cancer; 66% female, all spouses, mean age 63, 97% white | Cross-sectional Caregivers | Concepts: Personality, Social Support, and Burden | Unclear, individuals diagnosed with cancer in the past 5 years |
| Kizza & Maritz, 2019 | Assess caregivers’ knowledge and self-efficacy levels for pain management for advanced cancer patients while at home; mean age 36, 73% female, 20% spouse, 39% child, participants from Uganda | Descriptive, cross-sectional Dyads | Concept: Pain management | Unclear, no cancer stage indicated for individuals |
| Kizza & Muliira, 2018 | Evaluate the influence of a home education intervention on caregivers’ knowledge and self-efficacy for pain management in advanced cancer patients; 43% aged 18-30, 65% female, 39% child and 20% spouse, participants from Uganda | Quasiexperimental, single group pre/post-test design Dyads | Concept: Pain management | Unclear, no cancer stage indicated for individuals |
| Kizza & Muliira, 2019 | Explore the determinants of quality of life among caregivers of advanced cancer patients in Uganda; mean age 36, participants from Uganda, 73% female, 80% non-spouse | Cross-sectional Dyads | Concept: Auality of life | Unclear, no cancer stage indicated for individuals |
| Knoll, Scholz, Burkert, Roigas, & Gralla, 2009 | Investigate patient mobilized and received support as predictors of their own and spouses’ self-efficacy beliefs 1 year after prostatectomy; mean age 58, all spouse | Longitudinal Dyads | Concepts: Social support and self-efficacy | Unclear, no cancer stage indicated for individuals |
| Latter et al., 2016 | To identify and review studies of interventions to help carers manage medicines for pain in advanced cancer | Systematic Review Mixed | Concept: Pain management | Yes, individuals with advanced cancer |
| Lee et al., 2013 | Explore the prevalence of anxiety and depression in family caregivers of patients newly diagnosed with advanced lung cancer and identify factors related to caregiver anxiety and depression; 42% spouse, 67% female, mean age 47, participants from Taiwan | Cross-sectional Dyads | Concept: Psychological distress | Yes, individuals advanced cancer |
| Lee, Yiin, & Chao, 2016 | Test ability of an integrative intervention for caregivers of advanced cancer patients to lower caregiving burden at end-of-life; mean age 51 and 50, 64% and 62% female, 61% and 55% spouse, participants from Taiwan | Quasiexperimental, 2 group comparative repeated measures design Dyads | Concept: Caregiver burden | Yes, individuals with advanced cancer |
| Lee et al., 2018 | Identify changes of 5 domains of family caregiver burden, overall burden, and subtrajectories when caring for newly diagnosed advanced lung cancer patients and identify caregiver and patient-related factors associated with burden; mean age 48, 70% female, 50% spouse, participants from Taiwan | Longitudinal Dyads | Concept: Caregiver burden | Yes, individuals with advanced cancer |
| Leow, Chan, & Moon Fai, 2015 | Evaluate effectiveness of a psychoeducational intervention, Caring for the Caregiver; participants from Singapore; mean age 47, 68% female, 85% Chinese, 58% child, 25% spouse | Pilot RCT, two group pretest and repeated post-test Caregiver | Concept: Quality of life | Yes, individuals with advanced cancer |
| Lewis et al., 2019 | Test short-term efficacy of a brief marital communication and interpersonal support intervention for couples facing a recent diagnosis of breast cancer; 89% white, mean age of 55, all male, all spouse | RCT Dyads | Concept: Distress | No, individuals with stage 0-III breast cancer |
| Li et al., 2018 | Examine benefit finding relationship between cancer patients and family caregivers and investigate factors that modify these relationships; mean age 48, 53% female, 61% spouse, Chinese participants | Secondary analysis of large cross-sectional study Dyads | Concept: Benefit finding | Unclear, no cancer stage indicated for individuals |
| Li, Xu, Zhou, & Loke, 2015 | Examine acceptability, feasibility and preliminary effect of a Caring for Couples Coping with Cancer program; all Chinese, all spouse, mean age 57, 67% female | Quasiexperimental pre and post-intervention design Dyads | Concept: Live with Love Conceptual Framework | Unclear, no cancer stage indicated for individuals |
| Li & Loke, 2013 | Summarize and appraise positive aspects of spousal caregiving and identify directions for future research | Critical Review Mixed | Concept: Positive Aspects of Caregiving Framework (includes caregiver self-efficacy) | Unclear, no cancer stage indicated for individuals |
| Marshall et al., 2013 | Explore effectiveness of Un Abrazo Para La Familia in increasing cancer knowledge and self-efficacy in caregivers; 97% female, all Hispanic, median age 38, 18% child | Pre- and post-intervention quasiexperimental pilot study Caregivers | Concept: Self-efficacy | Unclear, no cancer stage indicated for individuals |
| Mazanec, Sattar, Delaney, & Daly, 2016 | Describe activation in patients with colorectal cancer and family caregivers and examine the relationship between patient and caregiver action, and determine factors related to activation; mean age 55, 71% spouse, 88% white, 79% female | Longitudinal, correlational design Dyads | Concept: Activation | No, individuals with Stage I-III cancer |
| Mazanec et al., 2019 | Evaluate feasibility, acceptability, safety and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using simulations; mean age 58, 67% female, 83% white, 78% spouse | Pilot RCT Caregivers | Concepts: Communication skills and caregiver distress | Mixed, individuals with Stages II-IV cancer |
| Mori et al., 2013 | Examine whether in-advance end-of-life discussions and DNR status would affect quality of inpatient end-of-life care; 52% spouse, 76% female, no age listed | Post-mortality survey Dyads | Concept: End-of-life discussion | Yes, individuals with advanced cancer |
| Morse, 2013 | Investigate group support topics endorsed by people living with cancer and caregivers and whether satisfaction with groups can be predicted by cancer status and demographics; mean age 54, 77% females, 91% white | Cross-sectional (Dissertation) Caregivers and People Living with Cancer | Theory: Self-Efficacy Theory | Unclear, no cancer stage indicated for individuals |
| Mosher et al., 2018 | Examine whether a peer helping component to a coping sills intervention leads to improved meaning in life and peace for advanced gastrointestinal cancer patients and their caregivers; 68% and 64% female, mean age 52 and 55, 88% white for both, and 68% and 84 % spouse | RCT Dyads | Concept: Meaning in life | Yes, individuals with Stage IV cancer |
| Mosher et al., 2016 | Examine the preliminary efficacy of telephone-based symptom management for symptomatic lung cancer patients and their family caregivers; 73% female, mean age 56 and 57, 86% and 93% white, 63% and 62% spouse/partner | Randomized pilot trial Dyads | Theory: Social Cognitive Theory | Unclear, no cancer stage indicated for individuals |
| Mystakidou et al., 2013 | Examine relationship between caregivers’ anxiety supporting a patient with advanced cancer and self-efficacy and sociodemographic characteristics; 49% child and 29% spouse, 64% female, mean age 48, Greek study participants | Cross-sectional Caregiver and care recipient | Concept: Self-efficacy | Unclear, no cancer stage indicated for individuals but 65% with metastases |
| Northouse et al., 2002 | Assess patient and family member quality of life within month after cancer recurrence and effects of multiple factors on quality of life; mean age 52, 59% spouse, 73% white and 23% African American | Secondary analysis of baseline data from larger prospective intervention study Dyads | Theory: Stress-Appraisal Model | Unclear, individuals with recurrent breast cancer |
| Northouse et al., 2010 | Analyze types of interventions offered to family caregivers of cancer patients and determine effect on caregiver outcomes; 64% female, 84% white, mean age of 55, 84% spouse | Meta-analysis Mixed | Concept: Well-being | Unclear, no cancer stage indicated for individuals |
| Northouse et al., 2014 | Examine feasibility of translating the FOCUS program for patients and caregivers to a tailored, dyadic web-based intervention; mean age 51, 61% female, 92% white, 68% spouse | Phase 2 feasibility study Dyads | Theory: Stress-Coping Theory | Mixed, individuals with early or advanced |
| Oh, 2017 | Investigate relationship between communication with health professionals and psychological distress in family caregivers and the mediating effects of self-efficacy in this model; mean age 52, 63% female, 70% white, | Secondary analysis of a large national study Caregivers | Theory: Stress-Coping Theory | Unclear, no cancer stage indicated for individuals |
| Pearce, Singer, & Prigerson, 2006 | Investigate the association between religious coping, mental health and the caring experience, and potential explanatory mechanisms in caregivers of terminally ill cancer patients; mean age 51, 74% white, 61% spouse, 73% female | Secondary analysis of a larger, longitudinal study Dyads | Theory: Stress-Coping Theory | Yes, individuals with advanced cancer |
| Perz, Ussher, Butow, & Wain, 2011 | Examine mediating roles of burden, unmet needs, self-silencing, self-efficacy and optimism and moderating influence of social support, cancer stage, patient gender, time spent caring and other responsibilities on gender differences in caregiver distress; 67% female, mean age 54 for women and 57 for men, 81% white for women and 83% white for men, 65% spouse for women and 91% spouse for men | Secondary analysis from larger mixed-methods study Caregivers | Concept: Distress | Mixed, individuals with different stages of cancer |
| Porter et al., 2012 | Examine attachment styles in patients with lung cancer and their spouses and associations between attachment styles and patient/spouse adjustment; all spouse, 62% female, mean age 63 | Secondary analysis from larger treatment outcome study Dyads | Concept: Attachment | No, individuals with early stage cancer |
| Porter et al., 2011 | Test efficacy of caregiver-assisted coping skills training protocol in patients with lung cancer; mean age 59, 92% white, 76% spouse, 69% female | RCT Lung cancer patients and caregivers (caregivers secondary participant) | Concept: Coping skills training | No, individuals diagnosed with early stage cancer |
| Porter, Keefe, Garst, McBride, & Baucom, 2008 | Examine self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their caregivers and associations between self-efficacy and patient and caregiver adjustment; Mean age 60, 66% female, 86% white, 76% spouse | Cross-sectional Dyads | Concept: Self-efficacy | No, individuals diagnosed with early stage cancer |
| Posluszny, Bovbjerg, Syrjala, Agha, & Dew, 2019 | Identify clinical, psychosocial, and sociodemographic factors related to pre-transplant distress; Mean age 53, 71% female, 95% European American, 77% spouse | Cross-sectional Dyads | Concepts: Anxiety and depression | Unclear, individuals involved in curative treatment for hematological malignancy |
| Tate, 2018 | Examine role of self-efficacy and coping skills in caregiver strain; mostly 45-54 years of age (31%), 40% spouse, 88% female, 88% white | Cross-sectional (Dissertation) Caregivers | Theory: Stress-Coping Theory and Pearlin Caregiving Model, Self-Efficacy Theory | Unclear, no cancer stage indicated for individuals |
| Titler et al., 2017 | Examine effectiveness, feasibility, and satisfaction with FOCUS program; mean age 56, 78% white, 56% female | Pre- and post-intervention design Dyads | Concepts: Distress and quality of life | Mixed, individuals with different stages of cancer |
| Ugalde, Krishnasamy, & Schofield, 2013 | To develop a new self-efficacy measure in caregivers of people with advanced cancer; 70% female, mean age 55, 75% spouse/partner | Measure development—pilot and field testing Caregivers | Concept: Self-efficacy | Yes, individuals with advanced cancer |
| Ugalde, Krishnasamy, & Schofield, 2014 | Describe prevalence of anxiety and distress in caregivers and explore relationships with self-efficacy; mean age of 55, 70% female; 75% spouse/partner | Cross-sectional study Caregivers | Concepts: Self-efficacy and distress | Yes, individuals with advanced cancer |
| Yildiz, Karakaş, Güngörmüş, & Cengiz, 2017 | Determine levels of self-efficacy and caregiver burden for cancer caregivers; Turkish caregivers, 38% between ages 24-34, 70% female, 52% parent (caregiver is the child) | Descriptive Study Caregivers | Concepts: Self-efficacy and burden | Unclear, No cancer stage indicated for individuals |