The following resources examine caring for people who have cancer.
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Purpose: Little has been determined regarding the association between patients’ and families’ illness understanding and preferences for medical care. We aimed to evaluate the association of illness understanding with advance care planning (ACP) and preferences for end-of-life care, such as aggressive care, early palliative care (EPC), and hospice care, among advanced cancer patients and their family caregivers. Methods: Patients were recruited for a prospective cohort study at outpatient and inpatient facilities in nine university hospitals in Korea (n = 150), and their primary family caregivers were also asked to participate (n = 101). Data on ACP and end-of-life care preferences were collected only at baseline in the cohort study with optional questions and were used to analyze these study results. Results: Patients with illness understanding were more likely to have documented physician orders for life-sustaining treatment (POLSTs) (adjusted odds ratio [aOR] of 4.94) and to have discussed ACP with their families (aOR 2.15) than those who did not. Being expected to live for several months, they were unlikely to prefer active treatment. Caregivers understanding patients’ illness were more likely to write advance directives (ADs) and to discuss ACP; furthermore, they had already discussed ACP with family members. They did not prefer active treatment or life-sustaining treatments when their family members were expected to die within a few weeks. There was no significant association between illness understanding and preferences for EPC. Conclusion: Accurately recognizing an incurable disease is associated with preferences for more ACP and less aggressive care but not with preferences for EPC or hospice care among both advanced cancer patients and their family caregivers.
Cognitive impairment (CI) is one of symptoms that adults with cancer frequently report. Although there are known factors that contribute to a patient's CI, these factors did not sufficiently explain its variability. Several studies conducted in patients with neurocognitive disorders have reported relationships between patients' cognitive function and caregiver characteristics, which are poorly understood in the context of cancer. This scoping review aims to map the literature on caregiver characteristics associated with CI in adults with cancer. We used the framework proposed by Arksey and O'Malley and PRISMA-Sc. Studies published in English by 2019 were searched through seven electronic databases. All retrieved citations were independently screened and eligibility for inclusion was determined by two independent authors. Ten studies met inclusion for this review with all of them showing significant associations between a patient's cognitive function and caregiver characteristics. Caregiver's mental health was the most commonly associated with a patient's cognitive function followed by family functioning, adaptation to illness, attitude toward disclosure of the illness, burden, coping and resilience, and demographic characteristics. These review findings suggest that enhanced information about CI in relation to caregiver characteristics will eventually provide the foundation for multifocal interventions for patients with impaired cognitive function. This scoping review identified caregiver characteristics that are associated with patients CI. These characteristics should be also assessed when health providers assess and treat CI of adults with cancer.
Background: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. Methods: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. Results: Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. Conclusion: Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress.
Purpose: Perioperative physical activity behavior change in older adults with cancer is complex. Identifying the barriers and facilitators to physical activity before and after surgery can help predict adherence and optimize outcomes. We aimed to determine the barriers and facilitators of adherence to a perioperative physical activity intervention in older adults with lung and gastrointestinal (GI) cancers and their family caregivers (FCGs). Methods: A qualitative analysis of physical therapy/occupational therapy (PT/OT) baseline geriatric/functional assessment and intervention sessions notes were undertaken (N = 34 dyads). Written text documents (N = 6 independent PT/OT notes per dyad) were transcribed into a spreadsheet for coding and thematic analysis. Content analysis qualitative approach was used to identify themes and guide data interpretation. Results: Ten themes for barriers and five themes for facilitators emerged, reflecting barriers to and facilitators of perioperative physical activity adherence. Primary barriers to adherence included comorbid health conditions, physical symptoms, functional limitations, anxiety, other roles and responsibilities, unexpected life events, lack of time and motivation, not accustomed to physical activity, and environment/weather. Facilitators that enabled intervention adherence included physical activity as part of routine, coping strategies, setting goals for motivation, social/family support, and experiencing benefits from walking. Conclusions: Barriers and facilitators to a perioperative physical activity is multidimensional, and focused on social-ecological determinants of health behaviors, including intrapersonal, interpersonal, and environmental factors. Perioperative physical activity interventions for older adults with cancer and their FCGs should integrate strategies to promote self-efficacy, support realistic activity goals, enhance motivation, and optimize social support.
Purpose of review Family caregivers of patients with cancer often spend a great deal of effort on physically and emotionally demanding work while taking care of patients. However, the majority of caregivers are not properly equipped for their role as caregivers, which may lead to increased distress in both caregivers and patients. Herein, we reviewed the recent literature (last 3 years) examining online interventions that seek to support caregiver resilience and decrease distress. Recent findings Our search identified interventions involving three main themes: informational support, positive activities, and social support. These are mostly in the form of web-based tools and mobile apps targeting both usability and quality of life. Social network services are also considered in this review as a new environment for caregivers to connect with other individuals with lived experience in similar circumstances.SummaryExisting studies on online interventions to support caregivers is still at a formative development stage and pilot tests of feasibility, rather than a substantive body of randomized controlled trials to assess the impact in different user populations, or to determine specific factors that impact caregiver distress level or resilience. More research is needed to further assess the long-term effects of online interventions on caregiver stress and resilience. Also, the role of different types of social network services and new forms of interaction, such as conversational agents, has not yet been fully investigated in caregiver populations. Future research should strive to seek new modes of providing services that may present novel opportunities to enhance caregiver resilience and reduce distress.
Objective: Vietnam, like many low/middle income countries, lacks the infrastructure to provide information and psychosocial support to cancer patients and their carers. We undertook a codesign process to develop a web resource to inform and support carers. Methods: Cancer carers and health care professionals' perspectives regarding information and support needs and the content and delivery of web-based supports, were explored via five focus groups (n = 39) and semistructured interviews (n = 4) in Vietnam in 2018. Focus groups and interviews were transcribed verbatim and analyzed using thematic analysis. Resource components were verified at two joint stakeholder workshops attended by 40 participants. Results: The development of a web-based resource was identified as an urgent need. A web-based resource was viewed as a suitable interface to provide support across regions in a sustainable way. The structure of the resource should include peer-led videoed advice, signposting to services and include official endorsement. The potential resource components identified includes (a) cancer causes and consequences; (b) hospital administration, treatment processes, and prices; (c) daily living; (d) emotional and supportive information; (e) skills training; and (f) nutrition and traditional medicine. Conclusion: The development of a web-based resource to deliver information and psychosocial supports to cancer carers and by-proxy patients is an urgent requirement in Vietnam. Next steps will include resource development and testing the resources ability to address the unmet needs of cancer carers and patients. A web-based resource to support cancer carers has the potential for application to other developing countries.
When bereaved cancer caregivers have the opportunity to tell stories about their caregiving and bereavement journey, they are better able to make meaning of these experiences. Creating a space where they can share stories with other bereaved caregivers increases social validation, facilitates the meaning-making process, and reduces distress and risk for complicated grief. This study explored the feasibility and acceptability of an innovative storytelling intervention for bereaved family caregivers of cancer patients. Twenty-one participants engaged in the intervention, and eleven were interviewed about their experience. Results indicated study feasibility and intervention acceptability. Suggestions for future intervention were also provided.
The role of informal caregiver of cancer patients is considered a situation of chronic stress that could have impact on cognitive functioning. Our aim was to evaluate differences in perceived stress, subjective memory complaints, self-esteem, and resilience between caregivers and non-caregivers, as well as the possible mediational role of burden in caregivers. The sample was composed of 60 participants divided into two groups: (1) Primary informal caregivers of a relative with cancer (CCG) (n = 34); and (2) non-caregiver control subjects (Non-CG) (n = 26). All participants were evaluated through a battery of tests: Socio-demographic questionnaire, subjective memory complaints questionnaire (MFE-30), Rosenberg Self-Esteem Scale, resilience (CD-RISC-10), and perceived stress scale (PSS). The CCG group also completed the Zarit burden interview. Results indicated that CCG displayed higher scores than Non-CG in MFE-30 (p = 0.000) and PSS (p = 0.005). In the CCG group, Pearson correlations indicated that PSS showed a negative relationship with resilience (p = 0.000) and self-esteem (p = 0.002) and positive correlation with caregiver’s burden (p = 0.015). In conclusion, CCG displayed higher number of subjective memory complaints and higher perceived stress than Non-CG, whereas no significant differences were obtained on self-esteem and resilience. These results could aid in designing new intervention strategies aimed to diminish stress, burden, or cognitive effects in informal caregivers of cancer patients.
Background: Chemotherapy is one of the treatment modalities for cancer. The side effects of treatment, at times, can affect the emotional well-being of patients and their caregivers, thereby leading to distress. This paper aims at screening and identifying levels of distress among patients undergoing chemotherapy and their caregivers. Subjects and Methods: A cross-sectional study design was used. Patients (n = 102) undergoing chemotherapy in the outpatient daycare unit and their caregivers (n = 101) were screened for distress using the National Comprehensive Cancer Network distress thermometer and the problem checklist. Data were analyzed using descriptive and inferential statistics. Results: Patients (53.4%) and their caregivers (22.2%) reported experiencing moderate-to-severe levels of distress. Patients reported significant distress in the areas of physical (P = 0.000) and emotional problems, whereas caregivers reported distress in the areas of family (P = 0.000) and emotional problems. There was no significant difference in emotional problems (P = 0.05) between the patients and their caregivers. There was a positive correlation between physical and emotional problems (r = 0.760, P = 0.000). Majority of patients (85.2%) and caregivers (80.1%) showed interest to avail psycho-oncology services. Conclusions: Distress is prevalent among patients with cancer undergoing chemotherapy and their caregivers. Clinical implications highlight the need to identify and address caregiver distress during routine distress screening for patients using specific psychosocial interventions. Future research warrants the use of administering specific assessments to identify severe psychological issues, such as depression and anxiety for patients reporting severe levels of distress on the screening tool.
Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal. Participants were assessed on quality of life (QoL), psychological morbidity and social support. Result The Portuguese version maintains 17 of the original 29 items version, maintaining general coherence and a dimensional structure that is clinically interpretable. Reliability findings indicated good internal consistency for the total scale (0.86) and respective subscales (0.75 to 0.88), which is in agreement with the alpha values from the previous CarGOQoL validation study for the corresponding subscales (0.74 to 0.89) and total scale (0.90). Significance of results The CarGOQoL is a reliable and valid tool for clinical trials and intervention programs to assess QoL in caregivers of myeloma patients. Future studies should validate the adapted version in caregivers of other types of cancer patients including other chronic diseases.
Objective Examine the relationship between the positive aspects of care and the personal growth of caregivers of patients with advanced oncological illness. Methods This research was a quantitative study with a transversal design. One hundred (100) informal caregivers filled out self-applied questionnaire on resilience, aspects of care, emotional distress, spirituality, and posttraumatic growth. Descriptive statistics were applied to the data, later correlation, and regression, and comparative analyses were conducted. Results The participants were mainly women (86%) with an average care period of 12 months. The average age was 46.52 years. The highest scores were evidenced in positive aspects of caretaking, spirituality, personal growth, and distress, while the lowest score was seen in questions related to resilience. There was a negative inverse correlation among emotional distress, resilience, spirituality, and posttraumatic growth (p < .05) and a positive correlation among resilience, spirituality, posttraumatic growth, and the positive aspects of caretaking (p < .01). There were significant differences among the items related to emotional distress, resilience, and posttraumatic growth. The linear regression analysis showed that as resilience, spirituality, and the positive aspects of care increased, so did posttraumatic growth. Significant results To promote the perception of benefits among caregivers, resilience and the identification of meaning in the caregiving experience of patients with advanced oncological illness can be considered protective factors favoring adaptation and reducing negative moods.
Background: Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods: A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment. In 52 cases, the patient cared for by the IC was included. Patients did not receive ERT-C. Both the ERT-C and waitlist groups were followed 3 and 6 months post-treatment. Data were analyzed with multilevel models, and P values were two-sided. Results: Compared with ICs in the waitlist condition, ICs in the ERT-C condition experienced medium to large statistically significant reductions in psychological distress (Hedge's g = 0.86, 95% confidence interval [CI] = 0.40 to 1.32, P < .001), worry (g = 0.96, 95% CI = 0.50 to 1.42, P < .001), and caregiver burden (g = 0.53, 95% CI = 0.10 to 1.99, P = .007) post-treatment. No statistically significant effects were found for rumination (g = 0.24, 95% CI = -0.20 to 0.68, P = .220). Results concerning caregiver burden were maintained through 6 months follow-up. Although the effects on psychological distress and worry diminished, their end-point effects remained medium to large. No statistically significant effects on systemic inflammation were detected (C-reactive protein: g = .17, 95% CI = 0.27 to 0.61, P = .570; interleukin-6: g = .35, 95% CI = -0.09 to 0.79, P = .205; tumor necrosis factor-alpha: g = .11, 95% CI = 0.33 to 0.55, P = .686). Patients whose ICs attended ERT-C experienced a large increase in quality of life post-treatment (g = 0.88, 95% CI = 0.18 to 1.58, P = .017). Conclusions: To our knowledge, this is the first randomized controlled trial evaluating the efficacy of ERT-C for ICs. Given the previous disappointing effects of other cognitive behavioral therapies for this population, the present findings are very encouraging. Identifying ICs with elevated psychological distress and providing them with relevant psychotherapy appears an important element of comprehensive cancer care.
Background: Breast cancer is a problem that affects not only the individual's health and quality of life, but also the functionality of the family system. Caregivers experience stress when their patients cannot cope with the symptoms of their disease. The stress experienced by caregivers gives rise to psychological and physical symptoms in them. This study seeks to present a complete set of tools for assessing coping in the spouses or caregivers of women with breast cancer and evaluate the various instruments developed within these lines of inquiry. Methods: A search was carried out in PubMed, Scopus, Web of Science, CINAHL, PsycINFO, Medline, ProQuest, Scopus and Google Scholar and also in the reference lists of the key articles retrieved for any coping assessment instrument targeting family caregivers' needs that had acceptable psychometric properties and was published until September 2019. The instruments used to assess coping in the spouses and caregivers of women with breast cancer were thus identified and their properties were described. Results: Overall, 88 adaptation assessment tools related to family caregivers of patients with breast cancer were identified in 28 related articles. The tools examine different dimensions of adaptation such as satisfaction, stress, burden and needs of spouses and caregivers of patients with breast cancer. Conclusion: Assessing family caregivers' coping is essential for providing them with the appropriate sources of support. Although several instruments have been used to assess coping in the spouses and caregivers of women with breast cancer, the properties of these instruments have to be examined before they can be more widely implemented.
Background: Recent advances in the development of immunotherapy drugs have resulted in durable responses and improved overall survival for a proportion of patients with advanced melanoma; however, toxicities can be potentially life-threatening. The patients' family and friends (carers) are relied upon to support patients at home post treatment; however, we know little about their experiences. Objectives: This study aimed to understand the experiences of patients with advanced melanoma who received immunotherapy and their carers; and to explore the impact of immunotherapy treatment on patients' and carers' quality of life (QoL). Methods: A cross-sectional, exploratory design was employed. Semi-structured interviews were conducted with patients: diagnosed with stage IV melanoma, attending an Australian public cancer hospital, had completed or were receiving treatment with immunotherapies; and the people caring for them at home. Results: Patients (n = 22) described how immunotherapy impacted emotional health, functional ability; and had damaging economic consequences. Fatigue was reported consistently as having a considerable negative influence across all domains of QoL. Carers (n = 9) were anxious about their ability to correctly identify, report and manage side effects at home. Conclusions: Results demonstrate how immunotherapy can impact the QoL of both patients and carers, either directly through toxicities or indirectly through mechanisms such as stress, financial toxicity, or fatigue that limits participation in life activities. Implications for Practice: Supportive care resources and interventions are needed for those receiving immunotherapy to minimise negative impacts on QoL. Carers likewise require better preparation and information to assist in identifying potential treatment toxicities and ensure patient safety.
Background Family caregivers of elderly patients with spinal tumours experience considerable pain and burden during the care process. This study aims to investigate the factors associated with caregiver burden in family caregivers of elderly patients with spinal tumours. Methods A total of 220 elderly patients with spinal tumours (age >= 65 years) hospitalized at the spine centre of our hospital from January 2015 to December 2017 and their family caregivers were recruited for this cross-sectional study. All participants completed a sociodemographic questionnaire. Caregiver burden, social support and self-efficacy were assessed by the Chinese version of the Zarit Burden Interview (ZBI), the Social Support Rating Scale (SSRS) and the General Self-Efficacy Scale (GSE), respectively. The factors related to caregiver burden were analysed by multivariate analysis. P < 0.05 was considered statistically significant. Results The 216 elderly patients with spinal tumours were 71.59 +/- 8.49 years old, and their caregivers were 70.46 +/- 9.13 years old. A total of 170 patients were cared for by their spouses, who accounted for 78.7% of all caregivers. The ZBI score for the family caregivers was 35.5 +/- 7.5, and most caregivers (84.5%) reported a moderate or heavy burden. The factors related to caregiver burden included patient paralysis, the primary cancer site, chemotherapy and/or radiation, cognitive dysfunction, functional status, monthly income, pain score, caregivers' SSRS score, and GSE score. Conclusions Most family caregivers of elderly patients with spinal tumours have a considerable caregiver burden. Interventions based on social support and self-efficacy can help reduce caregiver burden.
Purpose: To examine the level of caregiving burden and sleep quality as well as their interrelationship amongst family caregivers of Chinese male patients with advanced cancer. Method: A cross-sectional study was conducted in Hong Kong. The Caregiver Reaction Assessment (CRA) and the Pittsburgh Sleep Quality Index (PSQI) were used to measure caregiving burden and sleep quality of the family caregivers. Results: A total of 96 family caregivers were recruited. Disrupted schedule (3.8; SD = 0.8) was rated as the most affected consequence of caregiving burden. Around 78.1% of the caregivers suffered from sleep problems. Hierarchical multiple regression revealed that health problems due to caregiving burden was independently associated with poor sleep quality after controlling for socio-demographic characteristics of both patients and caregivers (regression coefficient, B = 2.09, P = 0.012). Conclusions: Caregiving burden amongst family caregivers of male patients with advanced cancer was remarkably high and associated with poor sleep quality. Strategies aiming to alleviate caregiving burden of caregivers may help break this vicious cycle to enhance the sleep quality of caregivers. Results also underscore the need to assess and develop intervention to relieve caregiving burden for family caregivers of cancer patients.
Introduction Significant number of women present with advanced-stage breast cancer in Ghana. These women usually depend on family caregivers for their multi-dimensional needs. Yet, there are gaps in research about what motivates family caregivers to assume the caring role and their experiences with caregiving within the Ghanaian context. Aim To explore and describe the caregiving motivations and experiences among family caregivers of patients living with advanced breast cancer. Methods In-depth, semi-structured qualitative interviews were conducted with 15 family caregivers who were providing unpaid care for women living with advanced breast cancer. Colaizzi's thematic analysis was used to analyze the data. Results Family relationship normally prescribed the caregiving role among family caregivers. Due to the lack of home-based palliative services in Ghana, findings suggest that family caregivers are the main managers of advanced breast cancer-related symptoms in the home. These findings are discussed under three major themes: (i) motivation for assuming the caregiving role; (ii) meeting self-care and psychosocial needs of the patient; and (iii) symptom management and monitoring. Conclusion Socio-cultural values influence the role of family caregivers in Ghana. This presents opportunities for health professionals and relevant stakeholders to develop a culturally-appropriate intervention to support informal caregivers in their home-based care for women living with advanced breast cancer in Ghana.
BACKGROUND: There are increasing numbers of cancer patients with brain metastases, and there is a high potential for caregiving burden. Little work has explored caregiving responsibilities and psychosocial well-being in informal family caregivers (FCGs) of cancer patients with brain metastases. This study aimed to address this gap in the literature. METHODS: Data were drawn from baseline pilot study data. Caregivers completed demographic information and provided a self-report of their caring responsibilities and psychosocial well-being via questionnaire. RESULTS: Participants were 21 FCGs of patients with brain metastases. Many caregivers are devoting extensive time to providing care; there was high variability in the number and types of caregiving activities reported. Although many caregivers report feeling well supported, other aspects of psychosocial well-being were less robust, including anxiety, depression, burden, and coping self-efficacy. CONCLUSION: Although FCGs reported mitigating factors such as social support, they still experience significant distress. Findings support previous work suggesting that neuro-oncology caregiving is burdensome, with adverse effects on health and well-being. Foundational work, such as this, will set the stage to identify areas for future intervention.
Purpose: Many patients with advanced cancer choose palliative chemotherapy. Considering its purpose of palliation and not treatment, it is important to consider the life of family caregivers. Family caregivers who experience bereavement undergo extreme stress, which is particularly high among patients’ spouses. The present study aims to clarify the experiences of the spouses of patients at the hospitals in Japan after the notification of palliative chemotherapy discontinuation until bereavement. Method: We interviewed the spouses of 13 patients who received palliative chemotherapy using a semistructured interview guide. Each spouse was interviewed twice. The interviews were transcribed verbatim, and key concepts were identified using a grounded theory analytic approach. Results: After the hospital's recommendation for palliative chemotherapy discontinuation, the spouses had “bewilderment over having to discontinue palliative chemotherapy” and experienced “difficulty in facing bereavement.” The spouses having “difficulty to give up hope for the patient's survival,” felt “bafflement over caregiving at the terminal stage,” which would be their responsibility in the future. Further, they had “hesitation in being honest to the patient” and were engaged in “knowing how to live with the patient until bereavement.“ Conclusion: Nurses need to encourage the patients and spouses to honestly express how they feel from the early stages of palliative chemotherapy. Furthermore, nurses should help spouses with how they face bereavement. This result may help prevent anticipatory grief, which may lead to excessive stress and emotional distress on the family caregivers.
Social connectedness generally buffers the effects of stressors on quality of life. Is this the case for cancer-related debt among rural cancer survivors? Drawing on a sample of 135 rural cancer survivors, we leverage family/friend informal caregiver network data to determine if informal cancer caregivers buffer or exacerbate the effect of cancer-related debt on mental-health-related quality of life (MHQOL). Using data from the Illinois Rural Cancer Assessment, a survey of cancer survivors in rural Illinois, we estimate the association between cancer-related debt and MHQOL and whether informal caregiver network size and characteristics moderate this association. Over a quarter of survivors (27%) reported cancer-related debt, and those who did reported worse MHQOL. However, this association only held for survivors who had an informal caregiver network. These findings supplement what is already known about the role of social connectedness in cancer survivors’ health outcomes. We offer possible explanations for these findings.
Background: Cancer treatment has been increasingly fulfilled on an outpatient basis by family caregivers. The variety and severity of caregivers' responsibilities expose them to physical and mental risks. Investigating the effect of education and telephone counseling on patient and family outcomes requires performing further studies. Aim: This study aimed to determine the effect of education and telephone counseling on caregiver strain and unmet needs in family caregivers and self-care behaviors in cancer patients. Method: The present randomized controlled trial was conducted on 60 caregivers-cancer patients referred to urban health education clinics in northeastern Iran within 2018-2019. A 20-minute face-to-face training session was held for the caregivers of cancer patients, and seven training pamphlets were given to the caregivers. Moreover, the intervention group received four telephone counseling sessions during three courses of chemotherapy. The strain and unmet needs of caregivers were measured by the Zarit Burden Interview and Supportive Care Needs Survey-Partners and Caregivers questionnaires, respectively. The patient self-care was assessed by the Nail Self-care Diary questionnaire. The data were analyzed by SPSS software (version 16) using an independent t-test and paired t-test. Results: The mean values of caregivers' age were 38.9±12.7 and 37.7±8.6 years in the intervention and control groups, respectively. The results of the independent t-test showed no statistically significant difference between the two groups (P=0.42). The results also revealed that the mean scores of caregiver strain and unmet needs decreased following the intervention, and the mean scores of self-care behaviors increased in the intervention group after the intervention (P=0.001). Implications for Practice: Education and telephone counseling can simultaneously help to follow up problems, improve self-care behaviors in cancer patients, alleviate the caregiver strain, and meet the needs of family caregivers.
Background: Advances in screening and treatment approaches alongside changing population demographics have the potential to influence the experience of living with lung cancer. There is potential for improved outcomes and quality of life for those diagnosed with the disease. Objectives: This exploratory study was undertaken to gain insight regarding the current experiences of individuals diagnosed with lung cancer and their family caregivers given the evolving changes in lung cancer screening and treatment. Method: A qualitative descriptive design was utilized and in-depth interviews conducted with 8 survivor and 4 family caregivers. Interviews were subjected to a conventional content analysis. Results: Participants identified challenges related to being diagnosed in a timely manner, being told the diagnosis with compassion, coping with multiple symptoms during treatment, and regaining a new normal following treatment. Dealing with late effects of treatment (ie, fatigue, shortness of breath, neuropathy) was frustrating when individuals were not aware the effects would emerge or had not had relevant self-management instructions. Conclusions: Lung cancer survivors constitute an emerging cadre of survivors. Attention is needed to their preparation for, and coping with, the survivorship transition.
Purpose: Many patients with advanced cancer receive primary supports from informal caregivers (IC). As patient health deteriorates, IC assume increasing responsibility, often accompanied by distress. We investigated the quality of life (QOL) of IC of patients referred to a palliative radiotherapy (PRT) program. Methods: IC accompanying patients to a dedicated PRT clinic completed a survey based on the validated Caregiver Quality of Life Index-Cancer (CQOLC). Demographics, burden, and engagement in support services were evaluated. Summary statistics were calculated, and parameters were assessed for association with CQOLC scores by a generalized linear model. Results: Two hundred one surveys were analyzed representing 197 unique patients. The mean age was 68.3 years, with predominantly lung (25.0%) and prostate (19.3%) malignancies. 24.4% had been in hospital/long-term care within the previous 7 days. IC were 60.8% female, and 60.6% were the patient’s spouse. 69.5% lived with the patient and 38.3% were additionally employed. IC spent a daily mean of 6.6 h (SD 7) assisting with instrumental (72.5%) and basic (37.5%) activities of daily living. Mean CQOLC score was 82.1/140 (SD 20). 63.8% of IC had previously accessed support service(s), most commonly home care (37.2%) and pharmacy (29.1%). 55.9% indicated interest in services not yet accessed. Multivariate analysis revealed additional employment, cohabitation, poor patient performance status, and interest in accessing more support services significantly correlated with higher IC burden. Conclusions: Employing the CQOLC to screen IC of patients referred to a PRT program permits early identification of vulnerable IC to facilitate linkage with appropriate supports.
Background: Cancer is recognized as a family illness as many head and neck cancer (HNC) patients after treatment require assistance from a family caregiver throughout the rest of their life. The purpose of this study was to explore the lived experience of primary family caregivers of HNC patients dealing with laryngectomy regarding their complex supportive role. Methods: Phenomenological study based on individual interviews of twelve primary caregivers of HNC patients, recruited by purposeful sampling. Interview contents were analyzed in depth, in accordance with Colaizzi’s descriptive analysis framework, to explore and identify significant themes and subthemes. Results: Analysis evidenced three main topics and subthemes embracing various aspects of the caregiver’s lived experiences: (1) experiencing disease and the pathway of care, (2) handling changes to everyday life, and (3) support received by others. Conclusion: Given the essential role the caregiver has in the patient’s post-treatment recovery, future planning of HNC patient care must consider the caregivers’ needs. In order to guarantee an appropriate and effective health professional care, it is important to consider caregivers’ issues and needs as part of HNC patient care planning from the diagnosis to the follow-up.
BACKGROUND: eHealth can enhance the delivery of clinical cancer care by offering unique education opportunities for oncology nurses, patients, and family caregivers throughout the cancer trajectory. OBJECTIVES: This article reviews eHealth technology that can be applied to oncology education, such as mobile health applications, text messaging, web-based education, and audio- and videoconferencing. METHODS: Case studies provide exemplars of eHealth technologies used for delivering oncology education to nurses, patients, and caregivers. FINDINGS: By using eHealth technologies to obtain and provide education, oncology nurses are well positioned to improve the lives of patients and caregivers.
Background Nondisclosure of cancer diagnosis continues to be practiced in India, with many family caregivers concealing it from patients in order to protect them from emotional distress. Objective The aim of this study was to explore Indian primary family caregivers' reasons for, and experiences of, disclosure versus nondisclosure to patients about their cancer diagnosis. Methods Indian disclosing (n = 8) and nondisclosing (n = 7) primary family caregivers participated in semistructured interviews exploring their reasons for disclosure versus nondisclosure of cancer diagnosis to their patient. Qualitative content analysis was used to classify the reasons for and for not disclosing. Illustrative quotes were selected to highlight caregivers' motivations for, and experiences of, each reason. Results The findings revealed 6 main reasons for disclosing (emotional well-being, lack of control, preparing the patient, family reasons, patient's personality, and longevity/curability of the disease) and 6 reasons for not disclosing (emotional well-being, family reasons, patient's personality, longevity/curability of the disease, barriers to communication, and disease severity). Typically, disclosing caregivers considered reasons for as well as against disclosure, whereas nondisclosing caregivers considered reasons against disclosure. Conclusions Most of the reasons given for disclosing and not disclosing were the same, although these reasons operated differently for disclosing and nondisclosing caregivers. In addition, justification for these reasons demonstrated cognitive consistency effects that appeared to reduce any feelings of dissonance regarding caregivers' disclosure, or nondisclosure, decisions. Implications for Practice Cancer nurses should provide additional psychological support to nondisclosing caregivers, especially with regard to how they view and engage in their caregiving role.
Purpose: The Singapore Caregiver Quality of Life Scale (SCQOLS) was recently developed and validated in two languages - English and Chinese. The total and domain scores are scaled to range from 0 to 100. However, the scale is not at the interval-ratio level of measurement. To facilitate interpretation, we established the percentiles of the scale’s total and domain scores among family caregivers of patients with advanced cancers and demonstrate the effect size in terms of differences in relation to caregiver and patient characteristics. Methods: Data were drawn from a cross-sectional survey of family caregivers of patients with stage III or IV solid cancers in Singapore. Quantile regression was used to estimate the percentiles in relation to caregiver and patient characteristics. Results: Participants in adjacent categories of patient’s performance status and caregiver’s having other family members to share caregiving duties differed by 3 to 5 points in median quality of life total score and most domain scores (each Bonferroni-adjusted P, P[B], < 0.05). Ethnicity was associated with the Physical Well-being and Experience & Meaning domain scores (each P[B] < 0.05), with variable direction and magnitude. Education was associated with Mental Well-being and Financial Well-being (each P[B] < 0.05). Equations and examples for calculation of the percentiles are provided. Conclusion: Percentiles and effect size estimates are provided to facilitate interpretation of the SCQOLS.
Objectives: The Singapore Caregiver Quality of Life Scale (SCQOLS) comprises five domains and 51 items in total. This study aimed to develop and evaluate short forms of SCQOLS. Study Design and Setting: Data were collected from 612 family caregivers of patients with advanced cancers in Singapore. Exploratory factor analysis and best subset regression were used to identify candidate items for each domain. The short forms were evaluated for measurement properties. Results: Inclusion of at least two items per domain in the short form gave correlation coefficients of at least 0.8 with the corresponding domain scores in the full-length version. The short forms and full-length version had similar correlation coefficients with Negative Personal Impact and Positive Personal Impact measures. Two of the five domains of the 10-item version had Cronbach's alpha 0.50 and test-retest reliability 0.65. A 15-item version of the scale with two to four items per domain performed satisfactorily in all aspects evaluated. Conclusion: A 15-item short form of the SCQOLS (SCQOLS-15) is valid and reliable for the assessment of the overall and domainspecific quality of life of family caregivers. A 10-item short form (SCQOLS-10) may serve as a quick, valid and reliable assessment of the overall level of quality of life.
Released thyroid cancer patients treated with 131I may cause a radiation risk to their family members. However, no current regulations exist in Taiwan to limit the radiation dose among patients released post-treatment. This study assessed radiation exposure to caregivers of thyroid cancer patients treated with 131I to verify whether their doses exceed the 5-mSv limit per treatment session. The study population comprised 63 patients from four hospitals and their caregivers. Dose rates at a 1-m distance from patients were quantified before their release. Dosimetry data of caregivers were obtained using personalized thermoluminescent dosimetry badges. Upon the release of patients treated with 131I, Dose rates at a 1-m distance from the patients were 3.9–55 μSv/h. The radiation doses to caregivers ranged from 0.21 to 1.7 mSv after the patients released. When the 1-m dose rate of patients upon hospital release was 50 μSv/h, the highest possible radiation dose was assessed of 4.76 mSv for caregivers. In conclusion, as the dose rates at a 1-m distance from patients upon release were <50 μSv/h, the radiation dose received by their caregivers would be in accordance with the 5-mSv limit recommended by the International Atomic Energy Agency series 40, International Commission on Radiological Protection publication 94, and National Council on Radiation Protection and Measurements Report no. 155.
The role of caregivers in homecare settings is relevant to the patient’s wellbeing and quality of life. This phenomenon is well described in the literature for the oncological setting but not specifically for that of hematological malignancies. The aim of this study was to explore the experience of primary caregivers of patients with hematological malignancies within home care. We conducted a phenomenological study based on interviews with 17 primary caregivers of hematological patients. Analysis of the contents led to the identification of five main themes. Perhaps, the innovative aspects of this study can be summarized in three points: This service was demonstrated to fulfil the ethical aspects of providing the patient with a dignified accompaniment to the end of life. Secondly, the efficiency of the service and the benefit are directly dependent on the caregivers’ wellbeing, so knowledge of the dynamics and emotions involved can lead to the development and implementation of programs for hematological malignancies. Lastly, a collaborative caregivers–professionals relationship can improve a sense of accomplishment for all parties involved, lessening the family’s frustration related to not having done their best. Home care brings significant benefits for both the patient and the caregivers and fulfils the ethical obligation of providing the patient dignified end-of-life care.
PURPOSE A needs assessment of family caregivers (CGs) in our gynecologic oncology clinic found that 50% of CGs report nine or more distressing unmet needs, but only 19% of patients had a documented CG. We conducted an ASCO Quality Training Program project with the following aims: (1) to identify and document primary CGs for 85% of patients within two clinic visits of a gynecologic cancer diagnosis, and (2) assess the needs of and provide interventions to 75% of identified family CGs. METHODS Plan-Do-Study-Act (PDSA) methodology and tools endorsed by the ASCO Quality Training Program were used. An interprofessional team reviewed baseline data (ie, any mention of a family CG in the electronic health record visit note; CG distress survey), defined the problem and project aims, created process maps, and identified root causes of poor CG identification and documentation. Eight successive PDSA cycles were implemented between October 2018 and March 2019 to address identified root causes. RESULTS For aim 1, CG identification increased from 19% at baseline to 57% postimplementation, whereas for aim 2, assessment improved from 28% at baseline to 60% postimplementation. Results fell somewhat short of initial goals, but they represent an important initial improvement in care. The core team has begun additional PDSA cycles to improve CG identification rates and extend the momentum of the project. CONCLUSION This project demonstrated that a CG assessment protocol can be implemented in a large, academic, gynecologic oncology clinic. Additional efforts to integrate CG identification, assessment, and intervention more fully within the clinic and electronic health record are under way.
Background: Gliomas are associated with significant healthcare burden, yet reports of costs are scarce. While many costs are unavoidable there may be treatable symptoms contributing to higher costs. We describe healthcare and societal costs in glioma patients at high risk for depression and their family caregivers, and explore relationships between costs and treatable symptoms. Methods: Data from a multicenter randomized trial on effects of internet-based therapy for depressive symptoms were used (NTR3223). Costs of self-reported healthcare utilization, medication use, and productivity loss were calculated for patients and caregivers separately. We used generalized linear regression models to predict costs with depressive symptoms, fatigue, cognitive complaints, tumor grade (low-/high-grade), disease status (stable or active/progression), and intervention (use/non-use) as predictors. Results: Multiple assessments from baseline through 12 months from 91 glioma patients and 46 caregivers were used. Mean overall costs per year were M = €20,587.53 (sd = €30,910.53) for patients and M = €5,581.49 (sd = €13,102.82) for caregivers. In patients, higher healthcare utilization costs were associated with more depressive symptoms; higher medication costs were associated with active/progressive disease. In caregivers, higher overall costs were linked with increased caregiver fatigue, cognitive complaints, and lower patient tumor grade. Higher healthcare utilization costs were related to more cognitive complaints and lower tumor grade. More productivity loss costs were associated with increased fatigue (all P < 0.05). Conclusions: There are substantial healthcare and societal costs for glioma patients and caregivers. Associations between costs and treatable psychological symptoms indicate that possibly, adequate support could decrease costs. Trial registration: Netherlands Trial Register NTR3223.
Background and aim: Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to explore family caregivers’ experiences of providing and receiving support during allo-HSCT. Method: Data were collected through semi-structured interviews with fourteen family caregivers 16 weeks after the recipient's allo-HSCT. Inductive qualitative content analysis was used to analyse the data. Results: The analysis revealed four generic categories that focus on prerequisites for family caregivers' ability to provide support: Individual characteristics influence the ability to be supportive, Social context influences the ability to be supportive, Medical information provides knowledge and a sense of participation and Interaction with the healthcare organization provides a sense of participation. These prerequisites are linked in the fifth generic category: Family caregivers' support is multifaceted and dependent on the recipient's health. Conclusions: Family caregivers’ risk of experiencing a stronger sense of uncertainty and lack of participation is higher in the absence of the above-mentioned prerequisites. Professional support is thus required, which implies that the healthcare organization is responsible for identifying the needs of each family caregiver and delivering individualized support.
Purpose: Patients with pancreatic cancer have extremely high unmet psychological and physical needs. Family carers of these patients have even higher levels of distress than patients. Our purpose was to assess the feasibility and acceptability of a counselling intervention in patients diagnosed with pancreatic cancer and their carers. Methods: We conducted a single-arm feasibility study of the PREPARES (Patients and RElatives affected by PAncreatic cancer: Referral, Education and Support) pilot intervention. Patient and carer participants received up to nine counselling sessions delivered by a trained nurse via telephone and/or telehealth technology. The intervention, informed by self-efficacy theory, involved components to assess and address care needs, and provide feedback to clinicians. Feasibility was measured using participation and retention rates. Participants completed semi-structured interviews at the end of the intervention about acceptability. These were analysed using thematic analysis. Results: Twelve people participated: five patients and seven carers (38% and 50% participation rates respectively). Most participants (eight) completed all nine counselling sessions; two chose to receive fewer sessions and two were discontinued requiring more intensive psychiatric support. The intervention was highly acceptable. Participants unanimously preferred the telephone over video-conferencing and to receive counselling separately from their carer/patient. The main perceived benefits were emotional support, the nurse-counsellors’ knowledge, care coordination and personalised care. Suggested improvements included a welcome pack about their nurse-counsellor and that sessions should continue beyond nine sessions if required. Conclusions: The PREPARES intervention was feasible and highly acceptable. This low-cost intervention provided much-needed support to people affected by this devastating disease.
Objective: The diverse demands of cancer care, which require time, psychological, physical, and material resources, often lead to caregiver burden. Studies with caregivers from ethnic minority groups suggest that they have unique beliefs and may experience different perceptions of role demands and caregiving. The aim of this study was to identify direct and indirect predictors of burden among Bedouin caregivers of family members with terminal cancer in Israel. Methods: A total of 101 Bedouin family caregivers of terminal cancer patients participated in this study. Participants were recruited from the oncology department of the largest medical center in southern Israel. The questionnaire battery included the Arabic version of the Zarit Burden Interview and other reliable measures validated for cancer caregiving. We performed path analyses on data allowing us to identify hypothesized, and un-hypothesized predictors of burden in this understudied population. Results: Most caregivers were adult children, followed by spouses, siblings and other family members. In our model, caregiver burden was directly predicted by depressive symptoms and (absence of) social support. Burden was indirectly predicted by quality of life (via depressive symptoms), optimism (via social support), emotional exhaustion (via quality of life and depressive symptoms) and mortality communication (via emotional exhaustion, quality of life and depressive symptoms). Conclusion: Social support and depression are the most important factors among all studied measures. Culturally-tailored intervention programs are required to foster community care and mitigate burden for Bedouin and other ethnic minority groups in Israel.
Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.
Informal caregivers (ICs) are integral to care provided to patients facing life-threatening or incurable illnesses. This responsibility causes considerable burden, as approximately one half of ICs report clinically significant symptoms of depression and/or anxiety that persist when left untreated. Psychosocial interventions containing efficacious treatment principles (e.g., cognitive behavior therapy [CBT]) show disappointing results in reducing anxiety and depression in ICs. This may reflect failure of these interventions to specifically target crucial mechanisms underlying the central feature of distress caused by the patient's illness-notably, perseverative negative thinking (PNT). Emotion Regulation Therapy (ERT) is an efficacious CBT developed to explicitly target mechanisms underlying PNT and the emotional concomitants that arise in response to stressful situations. This open trial was conducted to evaluate the acceptability and initial efficacy of ERT adapted to the experience of cancer ICs (ERT-C). Thirty-one ICs provided informed consent and completed eight weekly individual sessions of ERT-C. Participants completed self-report measures of depression and anxiety symptoms, PNT, emotion regulation deficits, and caregiver burden before and after treatment. ERT-C was well tolerated as indicated by 22 treatment completers and feedback provided in exit interviews. ICs demonstrated reduced depression and anxiety symptoms, PNT, and emotion regulation deficits with moderate to large effect sizes (Hedge's g range: 0.36-0.92). Notably, caregiver burden was not reduced but ICs expressed more ability to confront caregiving-related challenges. Findings offer promising but preliminary support for ERT-C as a conceptual model and treatment modality for distressed cancer ICs.
Family caregivers provide substantial care for patients with advanced cancer, while suffering from hidden morbidity and unmet needs. The objectives of this review were to examine risk factors associated with caregiving for patients with advanced cancer, evaluate the evidence for pertinent interventions, and provide a practical framework for palliative care of caregivers in oncology settings. We reviewed studies examining the association of factors at the level of the caregiver, patient, caregiver-patient relationship, and caregiving itself, with adverse outcomes. In addition, we reviewed randomized controlled trials of interventions targeting the caregiver, the caregiver-patient dyad, or the patient and their family. Risk factors for adverse mental health outcomes included those related to the patient’s declining status, symptom distress, and poor prognostic understanding; risk factors for adverse bereavement outcomes included unfavorable circumstances of the patient’s death. Among the 16 randomized trials, the most promising results showed improvement of depression resulting from early palliative care interventions; results for quality of life were generally nonsignificant or showed an effect only on some subscales. Caregiving outcomes included burden, appraisal, and competence, among others, and showed mixed findings. Only three trials measured bereavement outcomes, with mostly nonsignificant results. On the basis of existent literature and our clinical experience, we propose the CARES framework to guide care for caregivers in oncology settings: Considering caregivers as part of the unit of care, Assessing the caregiver’s situation and needs, Referring to appropriate services and resources, Educating about practical aspects of caregiving, and Supporting caregivers through bereavement. Additional trials are needed that are powered specifically for caregiver outcomes, use measures validated for advanced cancer caregivers, and test real-world interventions.
Purpose: Gastrointestinal (GI) cancer has emerged as a major health problem. Cancer patients receive informal care from their families beyond formal care. There has been little evidence showing how the health-related quality of life (HRQOL) of the caregivers differs from that of the GI patients in Malaysia. A cross-sectional study was conducted in three referral hospitals in Malaysia. The objectives of this study were to determine the HRQOL of GI cancer patients and their family caregivers, and assess whether there is any significant relationship between the demographic factors, and the physical component summary (PCS) and mental component summary (MCS) scores for patients and caregivers. Methods: A total of 323 dyads of GI cancer patients and their caregivers completed the Medical Outcomes Study 12-item Short Form (MOS SF-12) questionnaire to measure their HRQOL during face-to-face interviews. The analyses were performed using SF-12 scoring software to compute PCS and MCS scores (HRQOL parameters). The independent t test, one-way ANOVA, and the Pearson correlation test were conducted to determine the demographic factors related to the HRQOL of the dyads. Results: The caregivers had higher scores in all domains for the SF-12 than the patients. There were significant differences found in the MCS scores of the patients according to ethnicity, origin of cancer, duration of cancer, and surgery. None of these factors had a significant relationship with the caregivers’ HRQOL. Conclusion: Caregivers had better HRQOL than cancer patients. Early intervention for cancer patients in the form of counselling and personalised pain management may enhance the HRQOL of patients.
Background: Palliative care is in its infancy in most of the developing world. We set out to explore the lived experiences of families and caregivers of recently deceased cancer patients in Trinidad and Tobago and to determine the unmet needs of the patients and what recommendations could be derived to improve the current services. Methods: A phenomenological approach with purposeful sampling was used. Participants were referred by key health professionals. Face-to-face interviews were conducted. Interviews were transcribed verbatim, with analysis and data collection occurring concurrently. Thematic content analysis was used to determine common domains, themes and sub-themes. Results: Interviews were completed with 15 caregivers. All were spouses or children of the deceased. Ages of the deceased ranged from 43 to 93, the average being 65.5 years. The deceased experienced a variety of cancers including lung, colorectal and oesophageal. Unmet needs were identified under 4 domains of institutions, community, the family unit and the wider society. Institutional unmet needs were delayed diagnosis and treatment and poor inter-institution coordination. Medical and nursing care failed in the areas of health care providers' attitudes, pain management and communication. The family unit lacked physical and psychosocial support for the caregiver and financial aid for the family unit. Societal needs were for public education to address myths and cultural beliefs around cancer. Conclusion: There is need for systemic interventions to improve the care of those dying from cancer in Trinidad and Tobago. Stakeholders need to commit to palliative care as a public health priority, implementing education, planning services and mobilizing community resources.
Practice recommendations and policies (e.g., CARE Act) emphasize identifying and training a family caregiver during a patient's hospitalization, but engagement of caregivers is not standard in the USA. To inform caregiver engagement, we highlight (1) the frequency of cancer patient hospitalizations as well as (2) the caregiving characteristics and perceptions of inclusion in care and receipt of training among caregivers for patients who had been hospitalized. To further highlight this group of cancer caregivers, we compare to (1) cancer caregivers for patients who had not been hospitalized; (2) caregivers for patients with a primary condition other than cancer who had been hospitalized; and (3) caregivers for patients with a primary condition other than cancer who had not been hospitalized This secondary analysis is drawn from the National Alliance for Caregiving's (NAC)/AARP Caregiving in the US dataset of unpaid adult (i.e., age 18 and older) caregivers. A higher percentage of the cancer caregivers compared to non-cancer caregivers reported multiple hospitalizations for their care recipient over the previous year. Many cancer caregivers for patients who had been hospitalized reported high objective burden (68%) and that caregiving was highly stressful (49%). A majority of these caregivers (60%) indicated that a healthcare provider had asked them what they needed to assist the patient, while fewer (34%) were asked about their needs to take care of themselves, which, though low, was significantly higher compared to caregivers of patients with a primary condition other than cancer that had been hospitalized. The most frequently endorsed training method for the cancer caregivers of patients who had been hospitalized was "being shown how to do a skill by a qualified person" (67%) followed by "performing a skill while a qualified person watches" (57%). Findings suggest that the oncology context might be more advanced in terms of engaging and supporting caregivers, but that improvement is still needed. Furthermore, these findings identify preferred training methods among those who have been in the hospital context as a caregiver.
Objective: The purpose of this study was to test two 2-month psychosocial interventions (Telephone Interpersonal Counseling [TIPC] and Supportive Health Education [SHE]) to improve quality of life (QOL) outcomes for Latinas with breast cancer and their informal caregivers. Methods: Two hundred and forty-one Latinas with breast cancer and their caregivers were assessed at baseline, immediately after the 2-month intervention, at 4 and 6 months after baseline. QOL outcomes were psychological distress, symptoms and social support. Results: Linear mixed effects models showed that for cancer survivors at 2 months, TIPC produced lower adjusted mean depression scores compared to SHE. At 4 months, SHE had reduced total number of symptoms, global symptom distress, and social isolation compared to TIPC. Only total number of symptoms was lower in SHE than in TIPC at 6 months. Among caregivers at 2 months, total number of symptoms, global symptom distress, and anxiety were lower, and self-efficacy for symptom management was higher in SHE compared to TIPC. Caregiver depression was lower in TIPC compared to SHE at 4 months. Conclusions: These telephone delivered interventions improved different outcomes. TIPC demonstrated superior benefits for depression management and SHE was more successful in anxiety and cancer-related symptom management.
Objective: To evaluate the validity and reliability study of the Supportive Care Needs Survey for partners and caregivers of cancer patients in Turkish society (SCNS-P&C-T).; Methods: This cross-sectional survey followed by a test-retest reliability and psychometric validation study was conducted with 270 participants. The research data were collected using a patient and caregiver demographic survey, the SCNS-P&C-T, the Caregiver Strain Index, and the Hospital Anxiety and Depression Scale.; Results: Ten expert opinions were found to be consistent for content validity of the scale (I-CVI = 0.993, S-CVI = 0.956). The confirmatory factor analysis could not confirm the factor structure of the original scale. Therefore, an exploratory factor analysis was performed and the scale factor structure was determined. These factor structures are (a) psychological and emotional needs, (b) health care and information, (c) work and social needs, (d) communication and family needs.; Conclusion: The SCNS-P&C-T is a valid and reliable tool which can be used to identify unmet needs among caregivers in Turkish populations.
Background: Hospitalization for a cancer diagnosis and treatment may trigger stressful experiences for patients and family caregivers.; Objectives: The purpose of this study was to identify patients' and caregivers' perceptions of stressors during hospitalization and evaluate their education needs.; Methods: A descriptive correlational research design was used to determine whether there is any correlation between the stress perceptions of patients and family caregivers and their need for additional education on health-related issues.; Findings: Patients reported experiencing mild to extreme stress for sleep deprivation, pain, tube and line restrictions, and financial issues. In addition to these stressors, family caregivers also perceived that waiting for test results was a main reason for stress in patients. A positive significant correlation was found between the total sample mean stress scores of patients and their need for additional education on health-related issues.
Purpose: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers’ preferences for social support. Method: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments—including text and images—and a sample of caregivers’ exit interviews. Results: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support. Conclusions: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed.
Background: Emotional distress often causes patients with cancer and their family caregivers (FCGs) to avoid end-of-life discussions and advance care planning (ACP), which may undermine quality of life (QoL). Most ACP interventions fail to address emotional barriers that impede timely ACP.; Aim: We assessed feasibility, acceptability, and preliminary effects of a mindfulness-based intervention to facilitate ACP for adults with advanced-stage cancer and their FCGs.; Design: A single-arm pilot was conducted to assess the impact of a 6-week group mindfulness intervention on ACP behaviors (patients only), QoL, family communication, avoidant coping, distress, and other outcomes from baseline (T1) to post-intervention (T2) and 1 month later (T3).; Participants: Eligible patients had advanced-stage solid malignancies, limited ACP engagement, and an FCG willing to participate. Thirteen dyads (N = 26 participants) enrolled at an academic cancer center in the United States.; Results: Of eligible patients, 59.1% enrolled. Attendance (70.8% across 6 sessions) and retention (84.6% for patients; 92.3% for FCGs) through T3 were acceptable. Over 90% of completers reported high intervention satisfaction. From T1 to T3, patient engagement more than doubled in each of 3 ACP behaviors assessed. Patients reported large significant decreases in distress at T2 and T3. Family caregivers reported large significant improvements in QoL and family communication at T2 and T3. Both patients and FCGs reported notable reductions in sleep disturbance and avoidant coping at T3.; Conclusions: The mindfulness intervention was feasible and acceptable and supported improvements in ACP and associated outcomes for patients and FCGs. A randomized trial of mindfulness training for ACP is warranted. The study is registered at ClinicalTrials.gov with identifier NCT02367508 ( https://clinicaltrials.gov/ct2/show/NCT02367508 ).
Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families. This qualitative study evaluates the concerns and preferences of family members and caregivers of patients with lung cancer in the lung cancer experience and familial cancer risks.; Methods: We held focus groups to discuss the format and timing of addressing these preferences and concerns. Qualitative data generated was analyzed using a grounded theory approach.; Results: Five focus groups totaling 19 participants were conducted. Seven themes were identified: (1) journey to lung cancer diagnosis has core dimensions for patient and family, (2) importance of communication between patients, families, and providers, (3) challenges for caregivers and family, (4) mixed perceptions of lung cancer causation among relatives, (5) discussion of cancer risk with relatives has complex dynamics, (6) impact of diagnosis on family health behaviors and screening, (7) role of genetic counseling.; Conclusions: Family members of patients with lung cancer are interested in discussing risk factors, prevention, and diagnoses and also would like access to other supportive services do learn about and cope with some of the stresses and barriers they experience in the family lung cancer journey. The diagnosis represents a potential teachable moment with the opportunity to reduce the risk of LC development or improve early detection in LC patient's family members.
Objectives: Rising costs in oncology care often impact patients and families directly, making communication about costs and financial impacts of treatment crucial. Cost expenditures could offer opportunities for estimation and prediction, affording personalized conversations about financial impact. We sought to explore providers', patients', and caregivers' preferences towards implementing communication about cost, including when, how, and by whom such information might be provided.; Methods: We conducted semi-structured phone interviews with a diverse population including 12 oncology providers, 12 patients, and 8 patient caregivers (N = 32). The constant comparative method was used to identify mutually agreed upon themes.; Results: Participant groups differed in their concerns surrounding cost communication, namely whether they want to receive this information and how such information might impact provider and patient treatment decisions. All participants agreed that oncology providers should not be leading cost conversations. Patients and caregivers identified social workers or financial advisors as most equipped to communicate about cost. Participants emphasized timely cost conversations, ideally around the time of diagnosis. Participants favored various metrics of financial impact beyond overall costs of care including disability, days lost from work, and out-of-pocket expenses.; Conclusion: Cost transparency should be incorporated into usual care; however, there are several challenges to making cost conversations a part of everyday practice. Patients and family members need resources related to cost to aid in decision-making and those delivering cost information should have competency in oncology, financial advisement, and patient-centered care.
Introduction: Oral cancer is now a major public health problem in India. It does not only affect the patient, but also has a deep psychosocial impact on the family caregivers who are deeply involved with the cancer patient for nursing, timely medication, and consulting the doctor. Studies have found that the caregivers often suffer from depression, anxiety, and fear of losing their near and dear ones. This study aims to capture the psychosocial impact of oral cancer on the family caregivers.; Materials and Methods: This was a cross-sectional study carried out in a tertiary care hospital with the primary caregivers of those oral cancer patients who completed their treatment and came for follow-up after 2-3 months of treatment completion. The study participants were recruited till a sample size of 100 was reached. This was adequate to report proportions with an error of 10%. We have used "The Caregiver Quality of Life Index - Cancer" scale to capture the psychosocial impact of oral cancer on primary caregiver of the patient. The study was initiated after obtaining approval from the Institutional Ethics Committee. Informed written consents were obtained from all the study participants before beginning the interviews.; Results: Caregivers played an important role in the recovery of the patients. However, the strain of caregiving resulted in increased emotional stress among them. We found 56% of the family caregivers were female and 41% were male. Majority of the caregivers who accompanied the patients to hospital were the spouses. For the caregivers, the mean score for burden of the disease was found to be 60.0 (±20.2), that for disruption was 50.4 (±21.7), and for positive adaptation was 61.4 (±20.7).; Conclusion: Caregivers, who are usually invisible to the health-care team, should be recognized and their mental and physical well-being should also be given attention.
Background: Acute leukemia (AL) not only impairs the quality of life (QOL) of patients, but also affects that of their family caregivers (FCs). Studies on QOL of AL patients and their FCs are limited. This study aimed to evaluate the QOL of AL patients and their FCs, and to explore the factors associated with QOL of patients and of FCs. Methods: A multicenter cross-sectional study was conducted. The QOL of 196 patient-FC dyads was assessed. The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu) was used for patients, and the 36-item Short-Form Health Survey (SF-36) was used for FCs. Independent-samples t-tests or one-way analysis of variance were used to compare QOL subscale scores between groups with different sociodemographic/clinical characteristics. Multiple regression analysis was conducted to identify the factors associated with QOL of AL patients and their FCs. Results: The total FACT-Leu score for AL patients was 76.80 ± 16.44, and the physical component summary (PCS) and mental component summary (MCS) scores for FCs were 64.67 ± 15.44 and 52.50 ± 13.49, respectively. All QOL subscales for patients (t = 12.96-34.73, p < 0.001) and FCs (t = 2.55-14.36, p < 0.05), except role emotional (t = - 0.01, p = 0.993), were lower than those reported in previous studies. Sex, employment, and chemotherapy were significantly associated with total FACT-Leu score in AL patients (p < 0.05). Age, sex, marital status, education, employment, and relationship to patients were significantly associated with SF-36 PCS or MCS (p < 0.05). Conclusions: AL patients and their FCs both have lower QOL than the population in previous studies. These findings suggest that not only AL patients' physical and mental health but also overall family QOL should be assessed. Interventions supporting patient-FC dyads should be developed to improve their QOL.
Background: Cancer care is physically and psychologically challenging both for care recipients and caregivers. Caregiving in cancer is an area that needs urgent attention in India. Much of caregiving literature in India is limited to mental illnesses. This study thus examines the perceptions and practices of psychological caregiving among caregivers and care recipients of breast cancer in India.; Methods: Participants were interviewed with the aid of a semi-structured qualitative interview guide. Participants included 39 caregivers and 35 care recipients in different breast cancer stages. Interviews were transcribed, translated to English, coded and themes were derived for further analysis. Informed consent from participants, and ethical clearance and permission from a tertiary hospital was obtained prior to data collection.; Results: Psychological caregiving as perceived by the participants included actions such as encouraging, convincing care recipients, companionship, and maintaining a stress free environment. Caregivers in particular felt that psychological caregiving meant, reacting calmly to sensitive queries of non-family members, providing emotional support to other family members and involvement in religious activities. Taking on such diverse responsibilities gave rise to several unmet psychological needs such as motivation and support in decision-making from other family members.; Conclusion: Irrespective of the status (caregiver or care recipient), participants in this study felt the need for structured counselling services to be incorporated into the standard care protocol. This is an area that needs to be further explored in the context of the breast cancer caregiver and care recipient dyad.
Objective: To develop a communication prompt based on dignity therapy to facilitate effective conversations between patients with haematologic neoplasms and their family caregivers and to improve the programme and preliminarily explore the benefits and challenges of family participatory dignity therapy (FPDT).; Methods: A mixed-methods approach was applied to develop and revise the programme. The FPDT was developed and validated using the Delphi survey, and its further improvement was explored with a simple one-group pre- and post-trial and semi-structured in-depth interviews.; Results: Most of the FPDT items were endorsed by experts and patient-family dyads. The Content Validity Index was 93.6% in the first round of the Delphi survey and 100% in the second round. The "hope level," "spiritual well-being" and "general health" scores of pre- and post-testing increased from 33.60 ± 4.30 to 37.70 ± 5.10 (t = 3.99, p = .003); from 30.30 ± 3.65 to 38.80 ± 7.29(t = 4.13, p = .003); and from 41.67 ± 8.78 to 53.33 ± 8.05 (t = 3.50, p = .007) respectively. The qualitative data also indicated that the project was meaningful and well received.; Conclusions: We showed that FPDT was a valuable and feasible means of improving communication between patients with haematologic neoplasms and their family caregivers in China by raising the hope level and spiritual well-being and promoting general health.
Objective: The aim of this study was to develop learning objectives and identify content for a core communication and health literacy curriculum designed to optimize the role of informal cancer caregivers (family or friends).; Methods: A three-step process was conducted: (a) two-round online Delphi method process with experts (n=9) in cancer caregiving to gain consensus on curriculum learning objectives; (b) online survey of oncology providers (n=32) to generate potential content and rate importance of domains; and (c) focus group of cancer caregivers (n=6) to explore caregiving experiences and curriculum content topics.; Results: Overall, 17 learning objectives and 53 topics were identified for a cancer caregiver communication and health literacy curriculum. Feedback from cancer caregivers did not produce any new topics yet confirmed topics generated by experts and providers. The curriculum identified as essential has been organized under the following headings: finding cancer information; assessing and integrating information; working with healthcare providers; getting help; talking with the care recipient; recognizing the care recipient's needs; and planning for caregiver self-care.; Conclusions: This theoretically-grounded study systematically identified seven curriculum topic areas and content unique to caregivers and included input from key stakeholders. The next step is to develop the program for dissemination and to test its impact on caregiver and patient outcomes.
Aim: Family caregivers have limited abilities that make them vulnerable to the care needs of patients. Therefore, it seems necessary to evaluate their caring ability. The aim of this study was to design an instrument for assessing the caring ability of family caregivers of cancer patients.; Methods: This was a sequential exploratory mixed-method study, carried out in two qualitative and quantitative phases. The concept of caring ability and its dimensions were explained using conventional content analysis in the qualitative phase. The research participants included 41 family caregivers of cancer patients and professional caregivers who were selected using purposeful sampling method until reaching data saturation. The scale items were designed using the results of the qualitative phase of the study, as well as the review of relevant literature. In the quantitative phase, the scale was validated using content and face validity, construct validity, as well as internal consistency and stability.; Results: The primary item pool was prepared in 108 items. Content validity was determined using CVR with a cut-off point (0.62), CVI with a cut-off point (0.8) and kappa coefficient (κ) (>0.75). The validity of 72 items was confirmed. Then, the overlapping items were merged and eventually the 45-item scale entered the face validity stage and five items with an impact factor < 1.5 were omitted. Results of KMO = 0.904 and Bartlett = 6184.012 (p < 0.001) justified the need for factor analysis. Scree plot indicates five factors with eigenvalues above 1 and 67.7% of the total variance, including 'Effective role play, Fatigue and Surrender, Trust, Uncertainty, and Caring ignorance'. Reliability of the 31-item instrument indicated a Cronbach's alpha coefficient of 0.93 and ICC of 0.94.; Conclusions: Caring abilities scale (CAI) of family caregivers of patients with cancer is a valid and reliable instrument that can assess caregivers' caring ability.
Purpose: The study adopted a randomized controlled trial to compare the effect of culturally compatible psychosocial interventions on multiple aspects of quality of life (QoL) for family caregivers of lung cancer patients. Methods: 157 Chinese informal caregivers of lung cancer patients were recruited together with the family members for whom they were providing care, and randomly assigned to either integrative body-mind-spirit intervention (I-BMS) or cognitive behavioral therapy (CBT). Patient-caregiver dyads attended the same arm of intervention in separate groups for 8 weeks. Assessments of generic QoL, anxiety, depression, perceived stress, insomnia, and caregiving burden were measured before intervention (T0), within 1-week (T1), 8-week (T2), and 16-week (T3) post-intervention. Results: Adopting the intention-to-treat analysis, family caregivers in receipt of both I-BMS and CBT exhibited a statistically significant improvement in generic QoL immediately following intervention and at follow-up assessments, with moderate effect size. Improvement of insomnia was found at T1 for both modes, which deteriorated at follow-up; both modes reduced anxiety and perceived stress at follow-up. No intervention effect was observed in depression and domains of caregiving burden. There was no significant interaction effect between intervention type and time. No main or interaction effect between sample background variables and intervention type was found to predict symptomatic changes at T1 and T3. Conclusions: Culturally attuned I-BMS and CBT exhibited equivalent effectiveness in improving psychological distress and generic QoL for family caregivers of lung cancer patients. To improve the evaluation of outcomes, future study could benefit from incorporating a usual care control.
Family caregivers who provide care and support to cancer patients experience distress, burden, and decreased quality of life as a result of caregiving. Caregivers often turn to nurses for support; however, there is little training available for nurses on how to care for the family caregiver. Undergraduate nursing students have a high need to learn about engaging caregivers in care, but little content is presented to fulfill that need. Derived from the COMFORT™ SM communication curriculum, we developed a 1-h online educational module specifically addressing communication with family caregivers of cancer patients. Undergraduate nursing students (n = 128) from two accredited nursing programs completed a survey at the beginning and end of the module, in addition to answering unfolding response opportunities within the module. There was a significant increase in communication knowledge, attitude, and behaviors (p < .000) in post-test responses for students across all years of study. Knowledge based on responses to case study scenarios was more than 75% correct. Student open-ended responses to case-based scenarios featured in the module revealed student mastery and ability to apply module content (range, 40-56% across four scenarios). This online COMFORT™ SM communication training module is an innovative online cancer education tool for teaching about communication with family caregivers. This study finds the module effective for teaching undergraduate nursing students about communication with family and shows promise in interprofessional curricula as well.
Objectives: Forecasting survival in cancer is a particularly challenging facet of oncological work and can involve complex interactions with patients and their families. While there is considerable research on patient experiences of being provided with, or becoming aware of, their prognosis, there has been much less emphasis placed on the experiences of caregivers. The aim of this paper was to examine caregivers' experiences of prognosis.; Design: This study used semistructured interviews; transcripts were analysed thematically using the framework approach. These data are part of a larger research project focused on experiences of cancer survivorship.; Setting: Recruitment was from two metropolitan hospitals in Queensland, Australia.; Participants: 50 caregivers of patients living with cancer and receiving treatment at two metropolitan hospitals (32% male, 68% female) participated in this study.; Results: Four main themes were identified: (1) caregivers' uncertainty around the meaning and implications of prognosis, (2) caregivers' sense of exclusion in prognostic conversations, (3) the practice of situating prognosis within a context of hope and (4) the precarious balance between realism, optimism and strategic 'ignorance'.; Conclusions: Caregivers are in many respects the unseen third party of prognostic communication. Developing a better understanding of caregivers' perceptions of prognosis, including how this may be challenged, accepted or otherwise, is important in engaging caregivers in the process of communicating prognostic information. Facilitating greater participation by caregivers in prognostic conversations could potentially address evident complexities and even improve the experiences of all stakeholders in cancer care settings.
The purpose of the present study was to understand the barriers that a particularly vulnerable sub-population of older adults experience in adhering to cancer treatments in rural eastern North Carolina. Qualitative descriptive interviews were completed with 16 individuals (8 cancer patients and their caregivers) about the challenges they face in adhering to cancer treatments. Three themes emerged based on the analysis which included transportation and financial barriers, and assistance that facilitated patients to adhere to treatment protocols. Transportation barriers were those associated with both the formal and informal systems. Financial barriers were related to costs associated with treatment. Participants also reported on ways in which adherence was facilitated via both formal and informal means. Our findings support those of previous research on treatment adherence and add information on the actions patients take in response to barriers that can negatively impact their disease trajectory. The knowledge gained can inform service providers about the issues in treatment adherence and help identify interventions that could support caregivers and patients to circumvent such challenges.
Purpose: With the aging population, our current understanding of patients with cancer and their family caregivers needs to be expanded to older patients with cancer and their caregivers. By differentiating spousal caregivers and non-spousal caregivers, we aimed to investigate the universalities and particularities of caregiving for older patients with cancer.; Methods: Through 11 cancer centers in South Korea, 358 patient-caregiver pairs were recruited in this cross-sectional study. Patients were of gastric, colorectal, or lung cancers, and caregivers were those who accompanied the patients to the clinic. Along with socio-demographic variables, medical records of the patients, and caregiving-related measurements, the caregiver's quality of life (AC-QOL) was rated both by patients and by caregivers.; Results: Statistically significant attributes of ACQOL included patient's age, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and work conflicts due to caregiving for spousal caregivers (R2 = 0.687). For non-spousal caregivers, caregiving duration, caregiver's concern about financial burden, caregiver's self-evaluation of their own physical health, and family conflicts due to work were found significant (R2 = 0.272). Also patients rated ACQOL in higher accordance with their spousal caregivers than with non-spousal caregivers.; Conclusion: The needs of spousal caregivers and non-spousal caregivers might vary, which should inform the effective and efficient channeling of support for family caregivers. Future research suggestions, along with the study limitations, are discussed.
Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking. Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain. Design: A single-center cross-sectional survey. Measurements: Pain intensity was evaluated using a numerical rating scale. Pain improvement was evaluated against personal goals. Alexithymia was assessed using the Toronto Alexithymia Scale-20 (TAS-20), and anxiety and depression using the Hospital Anxiety and Depression Scale. Setting/Subjects: Of 320 family caregivers visiting the palliative care department, 152 (47.5%) had chronic musculoskeletal pain; all 152 were included in the study. Results: Alexithymia was observed in 36.2% of participants. Participants with higher scores on the TAS-20 tended to have higher pain intensity scores and personal pain goal scores. TAS-20 score had the strongest correlation with personal pain goals, with a correlation coefficient of 0.555 (p < 0.001). Conclusions: Pain intensity in family caregivers with alexithymia tended to be high. These participants set higher personal pain goals (lower goals for symptom improvement) than those without alexithymia. We found no difference in personal pain goal response between family caregivers with and without alexithymia. When we examine pain in family members with alexithymia who are caring for cancer patients, we need to recognize that they may set higher personal pain goals and seek less help.
Purpose: To explore the psychological experiences of the family caregivers of inpatients with gastric cancer or colorectal cancer, and to identify the relationships among insecure attachment, social support, and psychological experiences. Methods: The study design is a cross-sectional quantitative study collecting data through the use of four questionnaires, including the Hospital Anxiety & Depression Scale, the Self-esteem subscale of the Caregiver Reaction Assessment Scale, the Experience in Close Relationship Scale and the Social Support Rating Scale. Hierarchical regression analysis and path analysis were used to analyze the collected data. Results: Data from 207 participants was used. Family caregivers had experienced both depression and high self-esteem. Social support has significant direct effects on both depression and self-esteem. Attachment anxiety had direct effects on depression and social support, attachment avoidance had direct effects on self-esteem and social support. Social support has mediated the relationship between adult attachment and psychological experiences. Conclusions: Caregivers had experienced both negative and positive psychological outcomes. There were differences in the effects of insecure attachment on psychological experiences. Social support plays an important role in the relationships among insecure attachment, depression, and self-esteem. Insecure attachment styles and social support should be considered in tailored interventions for family caregivers to reduce their depression and enhance their self-esteem.
Objective: Previously, four caregiver types have been identified as a result of communication patterns between patient and caregiver, revealing unique caregiver information needs and preferences. The purpose of this study was to explore variation in health literacy among the four family caregiver communication types: manager, partner, carrier, and lone caregivers. Methods: The sample consisted of 115 cancer caregivers. Participants completed the Family Caregiver Communication Tool and the Health Literacy of Caregivers Scale-Cancer. Results: A significant difference in health literacy domains was found between caregiver types for cancer-related communication with the care recipient (P = .038) and understanding of the health care system (P = .003). Of the health literacy domains, mean scores were highest on understanding the health care system for both lone and carrier caregivers. Manager and partner caregivers were highest on the social support domain. The self-care domain was lowest for the carrier, lone, and manager caregivers. Conclusions: There was a variation across health literacy domains among caregiver communication types, further validating the Family Caregiver Communication Typology. Findings showed a need for educational programs for cancer caregivers to strengthen their health literacy skills. As cancer caregivers have a prominent role in the delivery and quality of cancer care, it is pivotal for health care centers to provide caregiver communication training and support.
Context: Family satisfaction with care is an important quality indicator in palliative care.; Objectives: This study aimed to translate and validate the 10-item Family Satisfaction with End-of-Life Care (FAMCARE) tool.; Methods: Family caregivers of patients with advanced cancer were recruited. FAMCARE was translated from English to Chinese using a forward and backward translation process. Chinese-speaking caregivers were interviewed with the preliminary Chinese FAMCARE, and phrasing was edited to ensure clarity of the items. Subsequently, a baseline and follow-up survey in English and the finalized Chinese version were performed to assess psychometric properties. Cronbach's alpha (α) and intraclass correlation coefficient were used for internal consistency and test-retest reliability, respectively. Validity was assessed with Spearman's correlation coefficient (r). The Comprehensive Needs Assessment Tool-Caregiver (CNAT-C) and a one-item assessment by caregivers regarding "good-care" acted as a validity criterion. Pooled analysis of both languages and language-specific analyses were performed.; Results: There were 259 participants; 134 and 125 participants filled in the English and Chinese versions, respectively. Pooled analysis showed that the intraclass correlation coefficient of FAMCARE was 0.95; α was 0.91. There was a moderate positive correlation between the total FAMCARE scores and "good-care" (r = 0.54) and a moderate negative correlation between the total FAMCARE score and the CNAT-C "Healthcare Staff" domain (r = 0.41). There was a weak negative correlation between the total FAMCARE score and the CNAT-C domain of "family and social support" (r = -0.13). Language-specific analyses revealed similar results regarding FAMCARE's psychometric properties.; Conclusion: FAMCARE showed good reliability and validity.
Background: Social support is a key component in maintaining cancer caregiver well-being, and many resources exist to facilitate caregivers' use of social support (eg, cancer support groups). This study sought to determine how informal cancer caregivers use social resources over the course of caregiving.; Methods: The data are from the Comprehensive Health Enhancement Support System study of informal caregivers (n = 202) of patients with recently diagnosed lung cancer. Caregivers self-reported their sociodemographic and caregiving characteristics and social resource use over 6 months. Generalized additive models were used to assess social resource use over time, and generalized estimating equation logistic regression models were used to assess the correlates of social resource use.; Results: Nearly two-thirds of caregivers reported any social resource use. The most prevalent social resources were faith-based groups (38%) and social clubs (30%). Only 1 in 4 caregivers participated in a formal resource such as counseling (11%) or a cancer support group (6%). Social resource use was lowest immediately after the diagnosis and increased over time. Formal resource use exhibited a nonlinear association with time such that formal resource use peaked approximately 9 to 10 months after the cancer diagnosis. Caregivers were more likely to report social resource use if the patient also reported social engagement.; Conclusions: This study has found that many cancer caregivers do not use social resources, although social resource use increases over time after the cancer diagnosis. Because of the association between social engagement and well-being, this information may inform future research and interventions to improve outcomes for cancer caregivers and their families.
PURPOSE: To understand the preferences and attitudes of patients and family caregivers on disclosure of cancer diagnosis and prognosis in an Indian setting. METHODS: Overall, 250 adult patients with cancer and 250 family caregivers attending the outpatients of a tertiary cancer hospital for the first time were recruited purposively. The mean ages of patients and caregivers were 49.9 years (range, 23-80 years) and 37.9 years (range, 19-67 years), respectively. Separately, they completed prevalidated, close-ended preference questions and were interviewed for open-ended attitude questions. RESULTS: A total of 250 adult patients (response rate, 47.17% overall, 73.2% in men, and 26.8% in women) and 250 family caregivers (response rate, 40.65% overall, 84.0% in men, and 16.0% in women) participated. Significant differences were observed in the preference to full disclosure of the name of illness between patients (81.2%) and caregivers (34.0%) and with the expected length of survival between patients (72.8%) and caregivers (8.8%; P <.001). The patients felt that knowing a diagnosis and prognosis may help them be prepared, plan additional treatment, anticipate complications, and plan for future and family. The caregivers felt that patients knowing a diagnosis and prognosis may negatively affect the future course of illness and cause patients to experience stress, depression, loss of hope, and confidence. CONCLUSION: Patients with cancer preferred full disclosure of their diagnoses and prognoses, whereas the family caregivers preferred nondisclosure of the same to their patients. This novel information obtained through a large study with varied participants from different parts of the country will help formulate communication strategies for cancer care.
Background: Studies have shown that initiating early palliative care of patients with end-stage cancer can improve their quality of life and decrease symptoms of depression. The challenge is to find an effective way to care for these patients while minimizing the burden on healthcare resources. Telemedicine can play a vital role in solving this problem.; Methods: A user-friendly telemedical device enabling patients encountering medical problems to send a direct request to a palliative care team was developed. A controlled feasibility study was conducted by assigning 15 patients with advanced cancer and their family caregivers to receive either standard palliative care or telemedically augmented palliative care. Th quality of life (QoL) was assessed using standardized validated questionnaires as well as frequency and duration of hospital admissions and user satisfaction. The primary goal of this study was to increase the QoL of patients and their family caregivers. The secondary goal of this study was to decrease the frequency and duration of hospital admissions.; Results: This study showed a good feasibility despite the low overall willingness to participate in a relatively "technical" trial. The hospital anxiety and depression scale (HADS) was significantly lower in the intervention group, suggesting an improved quality of life. Although a decrease in the number of hospital admissions could not be shown, the user satisfaction was very good.; Conclusion: Telemedicine could be a useful tool to enhance the general well-being of palliative oncology patients. Now that the feasibility of this approach has been confirmed, larger studies are needed to verify its positive impact on the QoL.
Opinion Statement: As cancer care has evolved so has the awareness of the issues cancer patients, their caregivers and families face during and after treatment, giving rise to the cancer survivorship care initiative. The body of research pertaining to quality of life, health-related quality of life, and multidimensional symptom burden of neuro-oncology patients and their caregivers has grown significantly, yielding a wealth of data and information indicating interventions and actions targeting symptoms and needs are both warranted and desired. The provision of survivorship care aiming to deliver care in a patient-centered, whole-person model offers a means by which these interventions and actions can be actualized. The research specific to survivorship care models and survivorship care plans and their delivery remains a large opportunity, one worth the careful consideration and participation of neuro-oncology healthcare providers for the benefit of their highly deserving patients and their caregivers and families.
Family caregivers are increasingly recognized as a vital part of the comprehensive treatment of cancer. Many caregivers, especially those caring for patients with primary malignant brain tumor (PMBT), report feeling overwhelmed by providing care. Social support can be protective for caregiving, but there is little research on the composition of social networks of caregivers. The research describes these social networks. Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center in the United States from May to August 2017. Caregivers listed social network resources that they either have approached or could approach for help in six caregiving areas. Twenty-eight caregivers provided social network data. Most caregivers had at least some support in each category, with the most people in hands on and emotional support. Communication and financial support were less populated and were most likely to have no resources listed. Most resources were unique to one support category, but a smaller number of resources provided multiple types of support. Our data provide information for targeting interventions to address support needs in caregivers of patients with PMBT. These findings also represent the first time the compositions of the social networks of caregivers of patients with PMBT have been presented.
OBJECTIVES: To examine the effect of informal cancer caregiving and repetitive negative thinking (RNT) on depressive symptoms and salivary cortisol levels. SAMPLE & SETTING: The sample was recruited from a hospital bone marrow unit and caregiver support organizations. It included 60 informal cancer caregivers (52% partners) of individuals with cancer who provided care for a median of 27.5 hours per week for 12 months, and 46 noncaregiver participants. METHODS & VARIABLES: In this cross-sectional study, participants completed questionnaires assessing RNT and depressive symptoms and provided saliva samples to measure cortisol levels. RESULTS: Cancer caregiving and RNT, but not the interaction, were associated with more depressive symptoms. RNT, but not cancer caregiving, was associated with salivary cortisol. A disordinal interaction effect suggests that cancer caregiving was associated with lower cortisol levels, and RNT in noncaregivers was associated with higher cortisol levels. IMPLICATIONS FOR NURSING: Given that RNT is related to depressive symptoms and cortisol, connecting cancer caregivers who experience RNT to resources and the development and evaluation of brief nurse-led interventions to reduce RNT in informal cancer caregivers seems warranted.
Previous research showed that family caregiver's perception of burden can influence patient's report on their quality of life (QoL). The present study investigated the relationship between the two variables by considering the role of patient's anxiety and depression. A total of 382 dyads of Chinese breast cancer patients and their family caregivers participated in this study. The results showed that the mediation model fitted the data well (χ = 49.859; df = 16; χ/df = 3.116; RMSEA = 0.05; TLI = 0.928; CFI = 0.959). It indicated that family caregiver's burden influenced patient's QoL negatively, and this relationship was partially mediated by patient's anxiety and depression.
Objective: Caregivers of patients with lung cancer often face physical, emotional, and financial distress, which not only negatively affects the caregivers' mental health and quality of life but may also impact patients' well-being. The purpose of this systematic review is to examine the content, delivery, and efficacy of psychosocial interventions targeting caregivers of lung cancer patients.; Methods: Studies included in this systematic review assessed psychosocial interventions for caregivers of lung cancer patients that were published in English between January 2009 and December 2017. These interventions focused on burden, mental health, quality of life, self-efficacy, and/or coping as outcome measures. CINAHL, PubMed, PsycInfo, Science Direct, and Web of Science databases were searched using the terms (lung cancer OR lung neoplasms OR thoracic cancer) AND (caregiver OR caregiving) AND (intervention OR program) to systematically review the relevant literature on this topic.; Results: From the 22 studies included in this systematic review, interventions were classified into four categories: communication-based interventions, coping skills training interventions, multicomponent interventions, and stress reduction interventions. The majority of the interventions (especially communication-based and multicomponent) led to improvement, albeit not always statistically significant, in one or more outcomes; however, the most frequently reported improvements included, burden, distress, anxiety, depression, overall quality of life, self-efficacy, and coping abilities.; Conclusions: The unmet needs of informal caregivers of lung cancer patients have a significant impact on their mental health and quality of life, but this burden can be alleviated by psychosocial interventions that offer appropriate support, education, and resources.
Background: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care.; Methods: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors.; Results: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels.; Conclusions: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.
Objective: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer.; Methods: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward.; Results: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms.; Conclusion: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.
Background: Cancer not only is a traumatic experience for the patients, but also can affect the family caregivers. Post-traumatic growth (PTG) refers to positive psychological changes experienced by people as a result of a struggle in dealing with traumatic events in life. Both the patients and their caregivers may experience PTG. The present study aimed to assess the extent of PTG in caregivers of patients with gastrointestinal cancer and to examine the relationship between the PTG dimensions and both the social support (SS) and hope.; Methods: The present descriptive correlational study was conducted during May-August 2018 in Shiraz, Iran. The target population included 112 caregivers who visited hospitals affiliated to Shiraz University of Medical Sciences, Shiraz, Iran. Data collection instruments included a demographic information form, post-traumatic growth inventory, social support appraisals scale, and Miller hope scale. The data were analyzed using the SPSS software (version 23.0). P<0.05 was considered statistically significant.; Results: The mean score for PTG, hope, and SS was 75.41±16.49, 190.95±24.20, and 89.10±12.84, respectively. A significant positive correlation was found between PTG and both SS (P<0.001, r=0.59) and hope (P<0.001, r=0.70). The results of the multiple regression analysis showed a significant relationship between PTG, SS, and hope (P<0.001). Hope had a higher effect on PTG (ẞ=0.62) compared to SS (ẞ=0.27).; Conclusion: The results showed a good level of PTG among the caregivers and the experience of stressful situations positively affected their psychological condition. The positive change was associated with the perceived SS and hope.
Purpose: Despite the theoretical and empirical significance of positive aspects of caregiving in caregiver well-being, relatively little is known regarding family-related predictors of caregiver positivity. This study examines whether patient-family communication (p-f communication) mediates the relation between family hardiness and caregiver positivity and whether the mediating effects of p-f communication are moderated by the levels of caregiver depression and anxiety. Design/Sample: This study used secondary data obtained from a large-scale cross-sectional national survey conducted in South Korea. Participants were 544 spousal cancer patient-caregiver dyads recruited from the National Cancer Center and nine government-designated regional cancer centers in South Korea. Methods: To test the hypotheses, a simple mediation model and two moderated mediation tests were conducted using the PROCESS macro for SPSS. Findings: Higher family hardiness was related to higher p-f positive communication and higher caregiver positivity. The effects of family hardiness were partially mediated by p-f communication, controlling for caregiver sex, education, health status, depression and anxiety, time spent caregiving, and patient depression and anxiety, cancer stage, and time since diagnosis. The mediating effects of p-f communication were not significantly moderated by caregiver depression and anxiety. Conclusions/Implications: Health care professionals could consider p-f communication as a reasonable target of intervention to increase caregiver positivity, even for caregivers with heightened depression and anxiety.
Purpose: Caring for cancer patients can be highly stressful for both family caregivers and oncology professionals. These high levels of stress can lead to poorer patient outcomes and increased risk of health problems for the caregivers themselves. Art therapy may help these caregivers as art-making can be a relaxing and enjoyable form of self-expression and art therapists can support individuals in expressing and processing challenging emotions. Research on art-making or art therapy with caregivers of cancer patients has shown some positive results, but its interpretation is limited by the use of multifaceted interventions.; Method: In this mixed-methods study we compared two brief arts-based approaches for both professional and informal caregivers: single sessions of coloring or open-studio art therapy, with a 45-minute session each. Assessments included self-reports of affect, stress, self-efficacy, anxiety, burnout arnd creative agency alongside salivary biomarkers before and after the session. Open-ended questions, field notes and observations formed the qualitative part of the study.; Results: Thirty-four professional (n=25) and informal (n=9) caregivers participated. Participants in both conditions showed increases in positive affect, creative agency, and self-efficacy and decreases in negative affect, anxiety, perceived stress, and burnout. Participants in both conditions expressed enjoyment, relaxation, appreciation of time away from stressors, creative problem solving, a sense of flow, and personal and existential insight. The two approaches also elicited distinct experiences with participants reporting that they found improved focus in coloring and appreciated the support and freedom of expression in open studio art therapy.; Conclusions: These findings suggest that even brief art-making interventions can be beneficial for stressed caregivers of cancer patients. As experience with art-making increased the impact, repeated sessions may be even more useful. We recommend that oncology units have dedicated studio spaces with therapeutic support and different forms of art-making available to meet individual caregiver needs.
Background: Hematopoietic stem cell transplantation (HCT), also referred to as blood and marrow transplantation (BMT), is a high-risk, but potentially curative therapy for a number of cancer and noncancer conditions. BMT Roadmap (Roadmap 1.0) is a mobile health app that was developed as a family caregiver-facing tool to provide informational needs about the health status of patients undergoing inpatient HCT.; Objective: This study explored the views and perceptions of family caregivers of patients undergoing HCT and their input regarding further technology development and expansion of BMT Roadmap into the outpatient setting (referred to as Roadmap 2.0).; Methods: Semistructured qualitative interviews were conducted among 24 family caregivers. Questions were developed from existing literature coupled with prior in-depth observations and interviews in hospital-based settings to explore the study objectives. Participants were recruited during routine outpatient clinic appointments of HCT patients, and all interviews were conducted in the participants' homes, the setting in which Roadmap 2.0 is intended for use. A thematic analysis was performed using a consistent set of codes derived from our prior research. New emerging codes were also included, and the coding structure was refined with iterative cycles of coding and data collection.; Results: Four major themes emerged through our qualitative analysis: (1) stress related to balancing caregiving duties; (2) learning and adapting to new routines (resilience); (3) balancing one's own needs with the patient's needs (insight); and (4) benefits of caregiving. When caregivers were further probed about their views on engagement with positive activity interventions (ie, pleasant activities that promote positive emotions and well-being such as expressing gratitude or engaging in activities that promote positive thoughts, emotions, and behaviors), they preferred a "menu" of positive activities to help support caregiver health and well-being.; Conclusions: This study involved family caregivers as participants in the development of new components for Roadmap 2.0. Our research provided a further understanding of the many priorities that hematopoietic stem cell transplant family caregivers face while maintaining balance in their lives. Their schedules can often be unpredictable, even more so once the patient is discharged from the hospital. Our findings suggest that expanding Roadmap 2.0 into the outpatient setting may provide critical caregiver support and that HCT caregivers are interested in and willing to engage in positive activities that may enhance well-being and attenuate the stress associated with caregiving.; International Registered Report Identifier (irrid): RR2-10.2196/resprot.4918
Purpose: Cancer diagnosis and treatment can generate substantial distress for both survivors and their family caregivers. The primary aim of this investigation is to test a model of dyadic interdependence in distress experienced by cancer survivors and their caregivers to determine if each influences the other.; Methods: To test this prediction, 209 Latinas with breast cancer and their family caregivers (dyads) were followed for 4 waves of assessment over the course of 6 months. Both psychological (depression, anxiety, perceived stress) and physical (number of symptoms, symptom distress) indicators of distress were assessed. Longitudinal analyses of dyadic data were performed in accordance with the actor-partner interdependence model.; Results: Findings indicated that psychological distress was interdependent between cancer survivors and their caregivers over the 6 months of observation. However, there was no such evidence of interdependence on indicators of physical distress.; Conclusions: These findings are consistent with emotional contagion processes and point to the potential importance of caregiver well-being for the welfare of Latina breast cancer survivors.
Background: Cancer is a family disease, affecting the individual patient and the family. For Chinese patients and their families in Canada, adjusting to cancer may be particularly distressing when culture and language are not congruent with the mainstream model of care delivery. Objective: In view of the limited research on the cancer experience of Chinese families, this study aims to examine the interrelatedness of patients and family caregivers' distress among a Chinese-speaking cancer population in Canada. Methods: Semi-structured interviews were conducted with a purposive sample of 10 Chinese-speaking cancer patients and 6 family caregivers. Qualitative analysis of the interview data was conducted to construct cross-cutting themes regarding the experiences of distress after a cancer diagnosis. Results: Four overarching themes emerged from the analysis: (1) misconception about cancer, (2) tensions in disclosure, (3) patient and family caregiver distress, and (4) concealing emotion in patient and family caregiver. Notably, the interrelatedness of patients and family caregivers' distress was highlighted, as patients and family caregivers both sought to regulate their own emotions to protect one another's mental well-being. Conclusion: The study provides insights into the distress of living with cancer and the impact on family relationships. Understanding the patients and family members' cultural and social contexts also provides the foundation for patient- and family-centered care. Implications for Practice: Healthcare professionals can provide culturally appropriate care by recognizing the needs, values, and beliefs of cancer patients and their families. Furthermore, the patient–family-caregiver dyad needs to be considered as the unit of care.
Cancer-related pain is prevalent and has debilitating effects on patients and their family. The effects of cancer pain can be curtailed if the family members caring for the patient receive essential support to enhance their capabilities for cancer pain management. Little has been done to study the available support to family caregivers (FCGs) towards pain management in adult cancer patients (ACPs) living in resource-limited countries where the burden of cancer is on the rise. This study evaluated the influence of an education intervention delivered in the home setting on FCGs' knowledge and self-efficacy (SE) for pain management in ACPs. One-group pre-/post-test design was used in a sample of 54 FCGs who had been caring for ACPs suffering from pain for at least 1 month. Data were collected using the Family Pain Questionnaire and Caregiver Pain Management SE Scale. The FCGs' mean knowledge score post-intervention (26.69 ± 10) was higher than the baseline (45 ± 12.9), and the difference was statistically significant (t = 10.382, p = 0.000, CI = 17.12-25.43). Additionally, the FCGs' mean SE score post-intervention (1003.30 ± 191) was higher than the baseline (648.3 ± 273.4), and the difference was statistically significant (t = - 8.52, p = 0.000, CI = - 438.6-- 271.4). The home-based education intervention significantly and positively influenced the FCGs' knowledge and SE for pain management while at home. Cancer pain management educational interventions delivered at home should be considered as one of the strategies for enhancing cancer care in resource limited settings.
Objective: Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers' quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.; Methods: A systematic literature review in PubMed/Medline examined research on QOL among informal cancer caregivers and related psychosocial health outcomes. Original research articles in English, published between 2007 and 2017 about caregivers (aged >18 years) of adult cancer patients in the United States were included. Abstracted articles were categorized according to caregiving recipient's phase of survivorship (acute, middle to long-term, end of life/bereavement).; Results: Of 920 articles abstracted, 60 met inclusion criteria. Mean caregiver age ranged from 37 to 68 with the majority being female, non-Hispanic white, with at least a high school degree, and middle income. Almost half of the studies focused on caregivers who provided care for survivors from diagnosis through the end of active treatment. Studies examined physical health, spirituality, psychological distress, and social support. Differences in QOL were noted by caregiver age, sex, and employment status.; Significance Of Results: Additional research includes the examination of the needs of diverse cancer caregivers and determines how additional caregiver characteristics (e.g., physical functioning, financial burden, etc.) affect QOL. This includes studies examining caregiver QOL in the phases following the cessation of active treatment and assessments of health systems, support services, and insurance to determine barriers and facilitators needed to meet the immediate and long-term needs of cancer caregivers.
Family caregivers are centrally involved in cancer pain management, especially for patients with advanced disease. This issue is becoming ever more important as care shifts to the outpatient setting and home care and as the aging population creates more patients who have multiple illnesses and family caregivers who often live with serious illnesses. This narrative review evaluated current knowledge and literature regarding family caregivers' involvement in cancer pain management and identified areas for future research and clinical practice. There is a need for additional research in this area and for clinical models of support for family caregivers as they provide pain management for patients with cancer.
Purpose/Objectives: Family caregivers of individuals living with cancer are often highly involved in communication with healthcare teams, yet little is known about their experiences, needs, and preferences in this role. To address this gap in the knowledge base, researchers sought to explore family caregivers' perspectives on communication with oncology care providers. Design and Methods: Researchers conducted a secondary inductive thematic analysis of qualitative interviews originally collected as part of a randomized clinical trial of a supportive intervention for family caregivers of patients with cancer (N = 63). Participants: Participants were family caregivers of adult patients with cancer. Most were patients' spouses/long-term partners (52.3%) or adult children/grandchildren (29.2%). Caregivers of patients with all cancer types and stages of disease progression were eligible for study enrollment. Findings: Caregivers valued communication with healthcare providers who were attentive, genuine, broadly focused on patients and caregivers' experiences, sensitive to unmet information needs, and responsive to the potentially different communication preferences of patients and caregivers. Interpretation: Family caregivers expressed a strong preference for person-centered communication, conceptualized as communication that helps healthcare providers meet the needs of patients and caregivers both as individuals and as an interdependent unit of care, and that acknowledges individuals' experiences beyond their prescribed roles of "cancer patient" and "caregiver." Implications for Psychosocial Oncology Practice: Psychosocial oncology providers' strong orientation to the biopsychosocial and spiritual aspects of cancer care delivery make them uniquely positioned to support family caregivers. Findings suggest that providers should explicitly communicate their commitment to both patient and family care, involve family caregivers in psychosocial assessment activities and subsequent intervention, and strive to honor patients and caregivers' potentially different communication preferences.
Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer. Design: Secondary qualitative data analysis. Sample: 58 family caregivers of hospice patients with advanced cancer. Methods: Template analysis of individual family caregiver interviews. Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging. Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.
Objectives: Latino-advanced cancer patients engage in advance care planning (ACP) at lower rates than non-Latino patients. The goal of the present study was to understand patients' and caregivers' preferred methods of communicating about ACP.; Methods: Patients and caregivers were interviewed about cultural, religious, and familial beliefs that influence engagement in ACP and preferences for ACP communication.; Results: Findings highlighted that Latino patients respect doctors' medical advice, prefer the involvement of family members in ACP discussions with doctors, hold optimistic religious beliefs (e.g., belief in miracles) that hinder ACP discussions, and prefer culturally competent approaches, such as using their native language, for learning how to discuss end-of-life (EoL) care preferences.; Significance Of Results: Key cultural, religious, and familial beliefs and dynamics influence Latino engagement in ACP. Patients prefer a family-centered, physician informed approach to discussing ACP with consideration and incorporation of their religious medical beliefs about EoL care. Promising targets for improving the communication of and engagement in ACP include integrating cultural and religious beliefs in ACP discussions, providing information about ACP from the physician, involving family members in ACP discussions and decision-making, and giving instructions on how to engage in ACP discussions.
Purpose: The number of informal caregivers to cancer survivors is increasing, and limited information is available about caregivers to sexual minority breast cancer survivors. The purpose of this study was to assess dyadic quality of life among sexual minority cancer survivors and their caregivers compared with heterosexual cancer survivors and their caregivers.; Methods: We recruited 167 survivors of non-metastatic breast cancer of different sexual orientations and their caregivers, who were surveyed via telephone after obtaining consent. We used inverse propensity score weighting to account for differences by sexual orientation in age and length of the survivor-caregiver relationship, and simultaneous equation models consistent with the needs for analyzing dyadic data.; Results: About 6-7 years after diagnosis, survivors and caregivers reported quality of life scores consistent with population norms, and there were no differences by survivors' sexual orientation. With few exceptions, caregivers' and survivors' quality of life influenced one another directly, and these effects were stronger among sexual minority dyads than heterosexual dyads.; Conclusions: Because of the strength of sexual minority, survivors' and their caregivers' mutual influence on each other's quality of life, interventions, and clinical care for sexual minority breast cancer survivors should consider their caregivers.
Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers' attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers' inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers' background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers' death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers' attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers' lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers.
Background: Breast Cancer is highly prevalent among women. The supportive care needs of such patients not only affect their quality of life (QoL) but also that of their family caregivers. The present study aimed to assess the correlation between the supportive care needs of women with breast cancer and the QoL of their family caregivers.; Methods: The present cross-sectional study was conducted from September 2017 to June 2018. The target populations were breast cancer patients (N=150) and their primary family caregivers (N=150) who attended the Omid Chemotherapy and Radiotherapy Center affiliated with Hormozgan University of Medical Sciences, Bandar Abbas, Iran. Data collection tools included a demographic information form, the Supportive Care Needs Survey-Short Form 34, and the Caregiver Quality of Life Index-Cancer Scale. The data were analyzed using SPSS software (version 22.0) with descriptive statistics and Pearson's correlation coefficient. P<0.05 was considered statistically significant.; Results: The mean age of the patients was 45.76±10.44 years. Of the family caregivers, 99 (66%) were the patients' spouses. Of the different dimensions of the supportive care needs, the score for the physical needs (40.60±23.50) was the highest. In terms of the QoL of the family caregivers, mental and emotional burden scored the highest (20.19±7.38). There was a significant correlation between the caregivers' mental and emotional burden and the physical needs of the patients (r=0.19, P=0.02).; Conclusion: The result of the present study showed that physical needs were the most common supportive care needs of patients with breast cancer. Such needs also significantly undermined the QoL of the caregivers in terms of emotional burden and financial concerns.
Objective: To analyze the association between the caring ability and the burden, stress and coping of family caregivers of people in cancer treatment. Method: A crosssectional study with 132 family caregivers. The following instruments were applied: a characterization instrument, the Caring Ability Inventory, the Zarit Burden Interview, the Perceived Stress Scale, and the Brief COPE. The Spearman Correlation was used with significance <5%. Results: There were significant and positive correlations between total caring ability and: burden - interpersonal relationship (p=0.03); stress (p=0.02) and maladaptive coping (p=0.00); and inversely proportional correlations with problem-focused coping (p=0.03). The courage had inversely proportional correlation with: self-efficacy (p=0.03), interpersonal relationship (p=0.00), stress (p=0.04) and maladaptive coping (p=0.00). The knowledge had significant and positive correlation with problem-focused coping (p=0.00), adaptive coping (p=0.01), and inverse correlation with stress (p=0.02). Conclusion: The level of caring ability correlates with levels of stress and burden, and with the type of coping strategy used by family caregivers.
PURPOSE: To investigate the needs of caregivers for individuals with cancer and to gain insight into how to provide support for caregivers. PARTICIPANTS & SETTING: 47 caregivers for patients with cancer in an outpatient setting in Denmark. METHODOLOGIC APPROACH: This qualitative study used focus group interviews. Data were analyzed using a hermeneutics framework and Malterud's systematic text condensation. FINDINGS: Results of the nine focus groups showed the experiences of caregiving. Theme 1 was interdependence, which consisted of the subthemes responsibility, a moral obligation and loneliness and talking. The results also revealed a second theme, different needs for support, which contained three subthemes: support through personal time, support through peers, and support through talking to healthcare professionals. IMPLICATIONS FOR NURSING: Caregivers for individuals with cancer do not distinguish their own needs and perspectives of support from those of the patients. Caregivers' need for support includes having support from peers, talking to healthcare professionals, and having personal time. Support of caregivers should allow for focusing on the family as a unit instead of solely addressing the patient.
Purpose: This study aims to investigate the impact of possible predictors of quality of life (QoL) in a group of Italian caregivers assisting a cancer patient in home palliative care.; Methods: Data from 570 adult informal caregivers and their cancer-affected relatives were collected. A multivariate regression analysis was conducted to assess the effect of three groups of variables on Caregivers Quality of Life Index-Cancer (CQOLC) scale: (a) socio-demographic characteristics of caregivers; (b) psychological characteristics of caregivers assessed by Profile Mood of States (POMS), Caregiver Burden Inventory (CBI), and Preparedness for Caregiving Scale (PCS); (c) Socio-demographic characteristics and functional status of the patients assessed by Karnofsky Performance Status (KPS), Activities of Daily Living (ADL), and Instrumental Activities of Daily Living (IADL).; Results: Regression analysis shows that some variables from each of these clusters are significantly associated with CQOLC, in particular: (a) the gender of the caregiver (st.β = .115, t = 2.765, p = .006) and the time spent for caregiving (st.β = - .165, t = - 3.960, p < .001); (b) the scores obtained by the caregivers in POMS,CBI (st.β = - .523, t = - 16.984, p < .001 and st.β = - .373, t = - 12.950, p < .001, respectively) and PCS (st.β = .092, t = 3.672, p < .001); (c) the gender (st.β = - .081, t = - 1.933, p = .045) and the IADL score (st.β = .195, t = 4.643, p < .001) of the patient.; Conclusions: A multidimensional evaluation is a key strategy to identify the most vulnerable caregivers. Apart from the condition of the patient, the gender of the caregivers, the time spent for caregiving and, above all, their psychological condition are strong predictors of caregivers' QoL.
With cancer increasing in prevalence and high priorities placed on concurrent oncological and palliative care to help meet the familial, spiritual, and individual needs of stakeholders in cancer, research is needed that assesses the factors that facilitate coping across stakeholders in cancer care. We were interested in synthesizing our understanding of communication and relationships among patients, caregivers, and providers based on the reasoning that illness is relational, but often conceptualized and researched from the individual perspectives of various stakeholders. The current study examined the experiences of relational and communication opportunities and challenges during cancer for current and former family caregivers, cancer survivors, and palliative and oncology health care practitioners. The thematic analysis of 30 semi-structured interviews revealed an overarching theme on the benefits of orienting toward cancer as communal, which was, in turn, facilitated or impeded by four additional themes/sets of behaviors: support, presence, perspective-taking, and reframing hope. Results of a cross-case data matrix analysis reveal that stakeholders in different roles experience qualitative differences in their experience of cancer as communal, isolated, or ambivalent. Implications for education, palliative care, and interventions are discussed.
Purpose/background: Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers.; Method: The 20-item Needs Assessment of Family Caregivers-Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n = 159) and 8 (n = 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed.; Results: Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t > 2.33, p < .05). The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5- and 8-year marks (t > 1.96, p < .05), beyond the effects of a host of demographic and earlier caregiving characteristics.; Conclusion: Findings support the validity of the Needs Assessment of Family Caregivers-Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re-engagement in daily and social activities will benefit caregivers by mitigating bereavement-related distress years after the loss.
Background: Family caregivers carry heavy end-of-life (EOL) caregiving burdens, with their physical and psychological well-being threatened from caregiving to bereavement. However, caregiving burden has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear-and-tear vs relief models of bereavement. Objective/Methods Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short-Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss. Results: Caregivers' likelihood of severe depressive symptoms and mental health-related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health-related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health-related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively. Conclusion: Severe depressive symptoms and mental health-related QOL improved substantially, whereas physical health-related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at-risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.
Background Little research focuses on the older adult with life-threatening illness and their carer simultaneously, nor the role of the interpersonal and familial context around them. The purpose of this study was to identify factors associated with poor mental health and lack of shared appraisal of symptoms. Methods Multilevel modeling was used to examine cross-sectional data from 135 older adult-spouse carer dyads with life-threatening illness (59 with congestive heart failure and 76 with lung cancer). This was a secondary analysis of quantitative data from two studies. Data were gathered using established measures of symptoms (dyspnoea, fatigue, pain), depression, concealment, relationship quality and family support with in-person interviews conducted separately for older adults and their carers. Diagnosis and stage of disease were gathered from clinical records. Results Older adults with heart failure reported significantly more depressive symptoms than older adults with lung cancer, whereas spouses caring for someone with heart failure reported significantly less depressive symptoms than those caring for someone with lung cancer. Greater levels of spouse depressive symptoms were significantly associated with less shared appraisal of the older adult's fatigue and pain interference, controlling for the quality of the relationship between them. Finally, risk factors for higher depressive symptoms of older adults included higher levels of concealing symptoms and worries from their spouse, advanced stage of disease, reporting low relationship quality and low levels of support from family. Risk factors for higher depressive symptoms of spouse carers included being younger and reporting low support from family. Conclusion Findings highlight the importance of taking a dyadic approach to life-threatening illness in older adults and the role of interpersonal and familial variables on the mental health of both members. Interventions to support and strengthen relationships and communication and address depressive symptoms of both members of the dyad are warranted.
The Carer Support Unit of the Central Coast Local Health District (New South Wales, Australia) is working with the District's inpatient cancer services to improve the identification of caring relationships for cancer inpatients. The first stage of the project was to do a literature review and environmental scan to assess the extent of the issue. We found significant barriers to carer identification, including: carer self-identification issues; definitional issues around the label 'carer'; system and process issues; and health workforce issues. This article outlines the findings of the literature review and environmental scan, supported by quotes from carers and health professionals. It incorporates recommendations for increasing the rate of carer identification for cancer inpatients at Central Coast Local Health District.
Patients followed up with a cancer diagnosis must be well-informed about cancer to be able to cope with it. Besides, informing the relatives of the cancer patients who are also experiencing the same process about the diagnosis and follow-up period of cancer is highly important. In the current study, it was aimed to evaluate the information sources about cancer which are referred to by relatives of cancer patients. Three hundred ninety-one cancer patient relatives were included in medical oncology clinic between May 1 and June 30, 2015. A questionnaire was applied to the participants, comprising 12 questions to elicit demographic information and 11 questions about the information sources to which they referred. The study included 183 female and 208 male participants with amean age of 47.9 +/- 13.6 years. While the oncologists were the primary information sources referred to by 87%, the Internet was the second most preferred information source by 72%. The websites most frequently referred were the official websites (70%), the websites of oncology associations (53%), and social networks and forums (32%). The primary factors affecting the Internet preference were age, education level, income level, and place of residence. The Internet was the second most referred information source about cancer by family caregivers following oncologists. Therefore, it is of crucial importance that physicians inform patients and their relatives comprehensively as well as guiding them to correct and reliable information sources.
Introduction Adults with cancer frequently report symptoms such as decline in cognitive function throughout the trajectory of illness. Patients with cognitive deficits need support and assistance from their informal caregivers and often rely on them to manage their symptoms based on their degree of deficits. Patients spend a significant amount of time with their informal caregivers and become interdependent with each other. In spite of their interdependence, it is unclear whether patients' cognitive outcomes (ie, cognitive function) are associated with their informal caregivers. Therefore, the body of literature related to the association between caregiver characteristics and cognitive function of adults with cancer needs to be fully mapped with assessment for knowledge gaps. Methods and analysis Methods for this scoping review was informed by the framework proposed by Arksey and O'Malley. Seven electronic databases will be searched: (1) PubMed (MEDLINE), (2) CINAHL, (3) Embase, (4) PsycINFO, (5) Scopus, (6) Sociological Abstracts and (7) ProQuest dissertation abstracts. In addition, the search for grey literature will include the conference abstracts available through Embase, Scopus and Sociological abstracts as well as dissertations available in ProQuest dissertations. All retrieved citations will be independently screened by two authors and eligibility will be determined based on inclusion and exclusion criteria at title and abstract level. Studies meeting inclusion criteria, will be screened at full text level by two reviewers followed by abstraction of included studies. Eligible studies will be collated, summarised and reported using the data charting form that research team developed. Ethics and dissemination This scoping review does not require ethics approval. Results of this scoping review will be disseminated via conference presentation and/or publication in a scientific journal.
Aim To explore how family caregivers experience involvement in palliative care. Design A qualitative design with a narrative approach was used. Methods Purposive sampling and narrative interviews were conducted. Eleven bereaved family caregivers for patients with cancer receiving palliative care were interviewed in Mid‐Norway between November 2016–May 2017. Results We identified four themes related to family caregivers' experiences of involvement in the early, middle, terminal and bereavement phases of palliative care: (a) limited involvement in the early phase; (b) emphasis on patient‐centred care in the middle phase; (c) lack of preparation for the dying phase; and (d) lack of systematic follow‐up after death. Family caregivers experienced low level of involvement throughout the palliative pathway. Conclusion The involvement of family caregivers in palliative care may not be proportional to their responsibilities. The needs of family caregivers should be addressed in nursing education to give nurses competence to support family caregivers in providing home‐based care.
Background: A diagnosis of cancer, specifically a brain neoplasm, can be daunting and confusing to patients and their family members. It is important to find ways to provide education about diagnosis, symptoms, medications, treatment, and side effects in a usable and retrievable format. Objectives: The aim of this study was to examine the impact of the following three teaching strategies on patients’ knowledge and understanding of their diagnosis: standard of care (SOC), which includes a generic folder of information (strategy 1); tailored paper binder (strategy 2); or SOC plus Technology Enhanced Active Learning (TEAL) (strategy 3). Methods: This was a prospective pre-/post-test pilot study including patients who had been diagnosed with brain neoplasms. Findings: Among 30 patients enrolled during a seven-month period, those who received strategy 3 had higher mean post-test knowledge scores compared to those who received strategy 1 or 2, but the difference was not statistically significant. The results suggest that TEAL-reinforced education is helpful for keeping appointments and may be associated with better knowledge retention regarding disease process and medications. In addition, fewer calls were made to the healthcare team in the strategy 3 group compared to the strategy 1 and 2 groups.
Objective Thiamine deficiency (TD) is recognized in various kinds of disease with associated loss of appetite including cancer; however, TD has not been recognized in the family caregivers of cancer patients to date. Method From a series of cancer patient caregivers, we reported an aged family caregiver who developed TD while caring for the cancer patient. Result The caregiver was a 90-year-old male. He had been accompanying his wife, who was diagnosed with colon cancer 4 years previously, on hospital visits as the primary caregiver, but because of psychological issues, he was recommended to visit the psycho-oncology department's “caregiver's clinic” for a consultation. Detailed examination revealed that his appetite had been only about 50% of usual from about one year before, and he had lost 12 kg in weight in one year. The diagnosis of TD was supported by his abnormally low serum thiamine level. Significance of the results This report demonstrates that there is a possibility that care providers could develop TD from the burdens associated with caregiving. TD should be considered whenever there is a loss of appetite lasting for more than 2 weeks, and medical staff should pay careful attention to the physical condition of care providers to prevent complications resulting from TD.
Pamela Larson reflects on her experience of becoming a carer for her husband.
Purpose: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. Methods: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. Results: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. Conclusion: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.
To the editor,
We read with interest, the recent article titled, “Informal caregiver quality of life in a palliative oncology population” by Duimering et al. , in which the authors concluded that identification of factors relating to lower quality of life (QOL) for informal caregivers, including additional employment, cohabitation with the patient, poor patient performance status, and expressing the wish to provide more assistance, should actuate the healthcare team to identify the vulnerable informal caregivers.
Objective Many family caregivers and hospice patients experience role changes resulting from advancing illness and the need for increased caregiver responsibility. Successful navigation of conflicts that arise because of these role transitions has been linked to higher quality of patient care and improved caregiver bereavement adjustment. Nursing communication with patients and their caregivers plays an important role in facilitating these transitions. Our objective is to describe patient-caregiver-nurse communication during transitions at end of life. Method A secondary, qualitative analysis was conducted on transcripts. Using an iterative process of constant comparison, coders inductively categorized nurse, caregiver, and patient communication behavior into overarching themes. Participants were home hospice nurses and cancer patient/spouse caregiver dyads; participants were >45 years of age, English speaking, and cognitively able to participate. Research took place in the home during nurse visits. Result Nineteen unique home hospice visits were analyzed. Patient-caregiver conflict occurred in two major content themes (1) negotiating transitions in patient independence and (2) navigating caregiver/patient emotions (e.g., frustration, sadness). Nurse responses to transition conflict included problem-solving, mediating, or facilitating discussions about conflicts. Nurse responses to emotional conflict included validation and reassurance. Significance of results Our findings provide insight into the topics and processes involved in patient and caregiver transitions in home hospice and the role hospice nursing communication plays in mediating potential conflict. Nurses are often asked to take on the role of mediator, often with little conflict resolution communication education; results can be used for nursing education.
Background: Patients newly-diagnosed with advanced cancer often rely on family caregivers to provide daily support to manage healthcare needs and maintain quality of life. Early telehealth palliative care has been shown to effectively provide an extra layer of support to family caregivers, however there has been little work with underserved populations, especially African-Americans and rural-dwellers. This is concerning given the lack of palliative care access for these underserved groups. Study design: Single-site, small-scale pilot randomized controlled trial (RCT) of Project ENABLE (Educate, Nurture, Advise, Before Life Ends) Cornerstone, a lay navigator-led, early palliative care coaching intervention for family caregivers of African-American and rural-dwelling patients with newly-diagnosed advanced cancer. Family caregivers are paired with a trained lay navigator overseen by specialist palliative care clinicians and receive a series of brief in-person and telehealth sessions focusing on stress management and coping, caregiving skills and organization, getting help, self-care, and preparing for the future/advance care planning. This pilot trial is assessing acceptability of the intervention, feasibility of recruitment and data collection procedures, and preliminary efficacy compared to usual care on caregiver and patient quality of life and mood over 24 weeks. Conclusion: Once acceptability and feasibility are determined and issues addressed, the ENABLE Cornerstone intervention for underserved family caregivers of persons with advanced cancer will be primed for a fully powered efficacy RCT. Given its use of lay navigators and telehealth delivery, the intervention is potentially highly scalable and capable of overcoming many of the geographic, human resource, and cultural obstacles to accessing early palliative care support.
Purpose: The purpose of this study was to explore the dyadic experience of caring for a family member with cancer. Particular attention was given to examine the relationship between dyadic perceptions of role adjustment and mutuality as facilitators in resilience for posttreatment cancer patients and family caregivers. Method: For this convergent parallel, mixed-methods study using grounded theory methodologies, 12 dyads were recruited from the National Institutes of Health Clinical Center in Bethesda, Maryland, USA. Qualitative data collection focused on social interactions between cancer patients and their family caregivers to better understand and describe how post-treatment patients and caregivers create mutuality in their relationships, how they describe the processes of role-adjustment, and how these processes facilitate dyadic resiliency. Quantitative data collected through electronic survey included the Family Caregiving Inventory (FCI) for Mutuality Scale, Neuro QoL Ability to Participate in Social Roles and Activities, and Satisfaction with Social Roles and Activities-Short Forms, and Mental Health Continuum-Short Form (MHC). Results: Eleven participants were spouses. Twenty-two self-reported as Caucasian. The sample ranged from 35 to 71 years of age (Caregiver M = 53.7, Patient M = 54.3). Most of the caregivers were female (n = 8; 66.7%) and most of the patients were male (n = 9; 75%). Qualitative interview data illuminated two primary psychosocial processes relating to resilience, role adjustment and mutuality, as key facilitators for transformation and growth within dyadic partnerships coping with the challenges of cancer treatment and cancer caregiving. The FCI-mutuality score for patients (M = 3.65 ± 0.47) and caregivers (M = 3.45 ± 0.42) reflected an average level of relationship quality. Relative to participation in, and satisfaction with social roles and activities, patients (M = 50.66 ± 7.70, M = 48.81 ± 6.64, respectively) and caregivers (M = 50.69 ± 8.6, M = 51.9 ± 8.75, respectively) reported scores that were similar to the US General Population (M = 50 ± 10). Conclusions: New patterns of role adjustment and mutuality can assist with making meaning and finding benefit, and these patterns contribute to dyadic resilience when moving through a cancer experience. There are few interventions that target the function of the dyad, yet the emergent model identified in this paper provides a direction for future dyadic research. By developing interventions at a dyadic level, providers have the potential to encourage dyadic resilience and sustain partnerships from cancer treatment into survivorship.
Objective To explore the experiences of cancer caregivers who live in rural Australia and travel to a metropolitan cancer health service to access cancer treatment. Design A qualitative study using semistructured, audio-recorded interviews conducted between December 2017 and July 2018 with caregivers and social workers. Thematic analysis using interpretative descriptive techniques performed on textual interview data within a critical realist paradigm to develop understanding of rural caregivers’ lived experiences. Setting Participants were from rural areas attending a metropolitan cancer centre in Australia and social workers. Participants 21 caregivers (16 female) of people with cancer living in rural Australia within a minimum distance of 100 km from the metropolitan cancer centre where they access treatment, and five social workers employed at a metropolitan cancer service with experience of working with rural patients and caregivers. Results Thematic analysis developed two overarching themes: theme 1: caregiving in the rural setting describes the unique circumstance in which caregiving for a person with cancer takes place in the rural setting at considerable distance from the cancer service where the person receives treatment. This is explored in three categories: ‘Rural community and culture’, ‘Life adjustments’ and ‘Available supports’. Theme 2: accessing metropolitan cancer services captures the multiplicity of tasks and challenges involved in organising and coordinating the journey to access cancer treatment in a metropolitan hospital, which is presented in the following categories: ‘Travel’, ‘Accommodation’ and ‘Health system navigation’. Conclusions Caregivers who live in rural areas face significant challenges when confronting geographic isolation between their rural home environment and the metropolitan setting, where the patient accessed cancer treatment. There is a need for healthcare services to identify this group to develop feasible and sustainable ways to provide interventions that have the best chance of assisting rural caregivers in supporting the patient while maintaining their own health and well-being.
Context: Family caregivers play a vital role in managing the pain of hospice patients with cancer; however, caregivers' knowledge of pain management principles and experiences as pain managers vary widely. Differences in cultural values and access to resources suggest that rural and urban hospice family caregivers may differ with regard to their pain knowledge and experience, but this has not been empirically investigated. Objectives: We sought to determine if rural and urban hospice family caregivers differed in terms of their knowledge of cancer pain management principles and their experiences managing cancer pain. Methods: Our study consisted of a secondary analysis of baseline, cross-sectional data from hospice family caregivers (N = 196) participating in an ongoing cluster randomized crossover pragmatic trial. We performed multivariable regression to model associations between caregivers' demographic characteristics and their scores on the Family Pain Questionnaire (FPQ), which included subscales measuring pain knowledge and experience. Results: When controlling for other demographic variables, rural caregivers' scores on the FPQ knowledge subscale were worse (P = 0.01) than their urban counterparts. FPQ experience subscale scores and FPQ total scores were not statistically significantly different between the two groups. Conclusion: Rural hospice family caregivers report greater pain knowledge deficits than urban hospice family caregivers, although the two groups report comparable pain management experiences. Additional research is needed to better explain observed differences.
Background Gynecologic cancer can create hopelessness and death anxiety and alter the lifestyle of the affected women and their caregivers. Perceived social support may facilitate coping with this illness. Objective The aim of this study was to determine whether hospitalized patients with gynecologic cancer and their caregivers differ in feelings of hopelessness and death anxiety and how those conditions may be related to their social support. Methods Two hundred patients with gynecologic cancer and their 200 caregivers from 1 university hospital were enrolled in this descriptive correlational study. Study measures included a demographic form, the Perceived Social Support Scale, the Beck Hopelessness Scale, and the Thorson-Powell's Death Anxiety Scale. Data were analyzed using Student t test, Pearson correlation test, and linear regression analyses. Results Patients had higher hopelessness and death anxiety compared with caregivers (P < .001). Patients' perceived social support explained 35% of the total variance in hopelessness and 28% of the variance in death anxiety; caregivers' perceived social support explained 40% of the total variance in hopelessness and 12% of the variance in death anxiety. Conclusion Patients felt hopelessness and death anxiety in greater rates than caregivers. Social support had a significant effect on hopelessness and death anxiety of patients and their caregivers. Implications for Practice Nurses, who are the healthcare professionals spending time with patients and families from diagnosis forward, need to evaluate patients and their caregivers for hopelessness and death anxiety and consider their social support systems during this evaluation.
Objectives The Bereavement Risk Assessment Tool (BRAT) seems to be useful in identifying those who are likely to suffer from the more severe consequences of bereavement. To date, however, only a few studies have examined bereavement risk using the BRAT. This study investigated bereavement risk in family caregivers of patients with cancer using the Japanese version of the Bereavement Risk Assessment Tool (BRAT-J). We also investigated the relationship of bereavement risk with psychological distress and resilience among caregivers to determine the validity of the BRAT-J. Methods We conducted family psychoeducation in the palliative care unit of Tohoku University Hospital with participants who were recruited in this study. Among the participants, 50 family caregivers provided their written informed consent and were included in this study. Participants were assessed using the BRAT-J and completed the Japanese version of the Kessler Psychological Distress Scale (K6) and the Tachikawa Resilience Scale (TRS). Results According to the BRAT-J, five individuals (10%) were in the high category of bereavement risk (level 4 or 5). We also found that family caregivers of patients experienced many different pressures, such as facing the unknown; their own work; and insufficient financial, practical, or physical resources. These issues are associated with various mental problems. Additionally, the level of bereavement risk was significantly correlated with K6 scores (ρ = 0.30, p = 0.032), and the TRS score (ρ = –0.44, p = 0.001). These correlations confirmed previous findings and that the BRAT-J can be an efficient screening tool for the bereavement risk of family caregivers of patients with cancer. Significance of results It appears that the BRAT-J is useful in predicting the likelihood of difficulties or complications in bereavement for family caregivers and could help to provide support with these issues when needed.
The purpose of this study was to obtain a deeper understanding of the experiences of family caregivers of terminally ill cancer patients in Shenzhen, Southern China. This study sought to describe how being the main caregiver influences family caregivers’ daily lives. This article reports on the findings from individual interviews with 20 family caregivers of terminally ill cancer patients. The interview transcripts were analyzed using qualitative thematic analysis, which revealed that caring for a cancer patient over the course of his or her illness significantly affected many aspects of family caregivers’ lives. Three major themes were identified in their experiences: (1) challenges, (2) personal growth, and (3) social support. In exploring these themes, this article offers insights into family caregivers’ experiences in Southern China, particularly among family members of terminally ill cancer patients and presents implications for future professional practice, especially oncology social work.
PURPOSE OF REVIEW: Informal cancer caregivers play a vital role in the physical, functional, and emotional well being of cancer patients. However, the majority of informal caregivers are not prepared for their caregiving role. We reviewed and synthesized the recent literature (last 18 months) and focused on research in the following understudied areas: technology-driven interventions for informal caregivers; informal caregivers of older adults with cancer; interrelationship between informal caregiver and dyadic outcomes; and research priorities and guidelines to improve informal caregiver support. RECENT FINDINGS: Studies focused on technology-driven informal caregiver interventions, with evidence of good feasibility and acceptability with benefits for burden and quality of life (QOL). Studies also focused on QOL for caregivers of older adults with cancer. Finally, research priorities and clinical guidelines were established through Delphi survey studies. SUMMARY: Despite the substantial evidence on informal cancer caregiving, more research is needed to further characterize caregivers at high risk for burden, explicate interrelationships between caregiver/patient outcomes, and test innovative and scalable interventions. Studies are also needed to understand the specific needs of informal caregivers in cancer surgery, an understudied treatment population.
Objective This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. Methods Self‐administered comprehensive needs assessment tool and EuroQol‐5‐dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis (≤12, 13–36, 37–60,>60 months). We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers’ comorbid conditions. Results Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of ≤12 months as well as >60 months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in ≤12 months and >60 months respectively. Conclusions The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.
Background: Although a number of studies have examined social support needs among women with breast cancer, little attention has been paid to the burden and needs for social support among their family caregivers, who often report mental and physical problems associated with caregiving. Objective: This study aims to examine the role of social media in providing social support for offspring caregivers of breast cancer patients. Methods: A peer support group, "Having a breast cancer patient in my family," was created on Douban (www.douban.com), one of China's most popular social media sites, to provide social support to family caregivers of women with breast cancer. We analyzed the content of 784 messages in the discussion threads where the latest update fell between January 2017 and July 2017. Results: The results revealed that the majority of messages (n = 690, 88.0%) provided or requested social support, and more than 64.5% of these messages (n = 445) were posted by caregivers who were offspring of the cancer patients. The results also suggested that these caregivers requested and provided informational support more frequently than they did emotional and instrumental support. Conclusions: This study suggests that social media could be a plausible platform for offspring caregivers of breast cancer patients to share caregiving experiences, access informational resources for their care recipients, gain knowledge about breast cancer prevention, and obtain emotional encouragement. Theoretical as well as practical implications are discussed.
Non formal, especially family caregivers are the most vital support for cancer patients in their healing process. However, caregivers are the least known, informed, and researched of all groups of people surrounding cancer patients. Ten family members are individually interviewed on their phenomenal experience in caring for cancer patients. Common themes that emerged from the interviews include financial, social emotions, and physical challenges. Financial problems rooted from unemployment as caregivers have to spent time looking after their sick family members. Social emotional problems included perception from society on their unemployment and family relationship issues. Caregivers also experienced physical strains as they put aside their well being in caring for others. However, caregivers have their own coping skills which included positive outlook and family support. Understanding of caregivers experiences is important for mental health professionals, medical team attending to the patients, and the public at large. Results of this study suggests further assistance and guidance for caregivers in carrying their responsibilities.
OBJECTIVE: To describe the experience of family care to women with breast cancer during treatment from the perspective of caregivers in the Mexican context. METHOD: Qualitative phenomenological study. In-depth interviews were conducted with caregivers of women who survived breast cancer. Participants were selected by intentional, cumulative and sequential sampling. A conventional content analysis was performed. RESULTS: Participation of seven caregivers, who reported their positive and negative experiences when assuming their role as informal caregivers in the family context. On the strength of the reciprocity of care and its reward, prevailed critical moments, negative feelings, and lack of support resources during the experience. This enables the understanding of the informal care bond in order to enhance it with coping strategies and specific guidance from the nursing staff. CONCLUSION: Participants experienced a transformation in their identity as caregivers and by being aware of their experience, they could describe their qualities, which increased their coping strategies with the disease and the care challenges.
Objective: Evaluate the suitability, readability, quality, and usefulness of publicly available online resources for cancer caregivers. Methods: Resources identified through a Google search and environmental scan were evaluated using the Suitability Assessment of Materials (SAM), an online readability text analysis tool, the DISCERN (quality), and caregivers' unmet needs checklist (usefulness). Descriptive analyses and cluster analysis to identify the group of resources with the highest SAM and DISCERN scores were performed. Results: 55 resources were evaluated. The suitability of 48/55 (87%) resources were categorized as adequate (SAM scores 40–69), with no resources ranking in the superior category (SAM scores > 70%). The readability of 51/55 (93%) resources exceeded 9th grade reading level. The mean quality score as a percentage was 49% (SD 11.5). On average resources addressed 9.9/33 unmet needs (SD = 5.8). A high-quality cluster was identified and included 15 (27%) websites. Conclusion: Online resources for cancer caregivers are not optimal in terms of their suitability, readability, quality, and usefulness. The highest ranked resources include, Cancer Council Australia's booklet, Caring for Someone with Cancer, and the American Cancer Society's webpages, Caregivers and Families. Practice implications: Study findings will allow healthcare professionals to better address cancer caregivers’ needs by recommending the most optimal resources.
Purpose: Although family caregivers (FCs) of older adults with cancer (OACs) provide invaluable assistance by fulfilling multiple tasks along the cancer trajectory, evidence suggests that their needs are poorly assessed, and there is a scarcity of supportive interventions that influence their well-being. Viewing these issues as opportunities for improvement, we conducted this qualitative study to understand FCs’ needs and identify promising needs-focused interventions. Methods: This descriptive interpretive qualitative study was conducted in Quebec, Canada, in a French Canadian Oncology Clinic. Participants were FCs who were spouses or adult children (n = 25) of OACs aged 70 years or older. Data were collected via focus groups and were analyzed using an ongoing analytic process following each interview. Results: Three types of needs were of particular importance: information, relationships between FC and others, and care for oneself. The need for information was described in terms of the content, timeliness, and modalities in which information should be verbalized and delivered. The need for relationships specifically targeted health care providers (HCPs), family members, and OACs. The need to care for oneself was recognized as important throughout the cancer trajectory but also represented a challenge. Participants proposed innovative ideas for interventions, resources, and strategies for each type of need. Conclusions: According to our results, HCPs should systematically include FCs into OACs’ care plan through the use of concrete actions such as the “family systems approach” suggested by Duhamel, and integrate a systematic FC’s needs assessment.
Purpose: This study aimed to test the validity and reliability of the five-level EuroQol five-dimensional (EQ-5D-5 L) instrument in family caregivers (FCs) of leukemia patients in Heilongjiang of China. Methods: A cross-sectional survey was conducted on 298 family caregivers (FCs) of leukemia patients from three major cancer centers in the capital city of Heilongjiang province of China. Their dimensional scores of the EQ-5D-5 L were compared with those of the WHOQOL-BREF to test the convergent validity (constructs measuring the same concept) and divergent validity (constructs measuring different concepts) of the EQ-5D-5 L. Repeated surveys were conducted on 271 participants to determine the test-retest reliability of the EQ-5D-5 L. Results: The four physical dimensions (mobility, self-care, usual activities, and pain/discomfort) of the EQ-5D-5 L had moderate or high correlations with the physical health domain of the WHOQOL-BREF, with a correlation coefficient (r) ranging from 0.459 to 0.559. The anxiety/depression dimension of the EQ-5D-5 L had a high correlation (r = 0.667) with the psychological domain of the WHOQOL-BREF. By contrast, lower but still significant physical-to-psychological correlations were found between the two instruments (r ranging from 0.219 to 0.396). In addition, the EQ-5D-5 L dimensional scores showed no or weak correlations with the environment and social domains of the WHOQOL-BREF (r ranging from 0.016 to 0.207). High test-retest reliability (> 0.7) was evident. Conclusion: The Chinese version of the EQ-5D-5 L has satisfactory reliability and validity in FCs of leukemia patients. It can be used to elicit utility of health-related quality of life in FCs of leukemia.
Purpose: Adherence to dietary guidelines and consumption of a high-quality diet are essential to rebuild strength and to decrease tumor recurrence and mortality in patients with colorectal cancer. We examined the associations of the diet quality of patients who have colorectal cancer with the characteristics of the patients and their families, the patient's perceived barriers to following the diet, and the family's attempts to change the diet. Design: A cross-sectional study design was employed. Patients with colorectal cancer were recruited from National University Hospitals in South Korea. Enrolled patients were over 19 years old. Enrolled relatives served as the primary caregivers of the patients. Methods: A total of 216 patients who had colorectal cancer and their family caregivers were enrolled. We assessed patients' diet quality, their perceived barriers to following the dietary plan, and family caregivers' attempts to improve diet quality. Findings: Patients with colorectal cancer were less likely to have healthy eating habits if they perceived barriers to the recommended dietary plan, and more likely to have healthy eating habits if they had family caregivers who attempted to change their own dietary habits. Conclusions: Strategies that target patients' perceived barriers to following a healthy diet and that encourage family members to facilitate the adoption of a healthy diet can be integrated into the treatment plan of patients with colorectal cancer. Clinical Relevance: The results can be used as evidence for promoting the notion that diet interventions for patients with colorectal cancer focus on the patient-family dyad, which support overall quality of care in oncology care hospitals.
Previous studies have investigated interdependence of the associations between predictors and negative psychological outcomes in dyads of cancer patients and family caregivers. This study examined the dyadic effects of perceived capability of savouring the moment on psychological well‐being. A total of 152 dyads of cancer patients and caregivers reported their perceived capability of savouring the moment (Savoring Beliefs Inventory), state positive affect (Chinese Affect Scale) and life satisfaction (Satisfaction With Life Scale) within 6 months following diagnosis. Actor–Partner Interdependence Model (APIM) demonstrated that patients’ and caregivers’ savouring the moment was positively associated with their own positive affect and life satisfaction (actor effects: βs = 0.309–0.603, 95% CIs = 0.171–0.502, 0.446–0.703, ps < 0.001). Patients’ savouring the moment was positively associated with caregivers’ positive affect (β = 0.158, 95% CI = 0.018, 0.299, p = 0.028), whereas caregivers’ savouring the moment was positively associated with patients’ life satisfaction (β = 0.158, 95% CI = 0.026, 0.289, p = 0.020). Partner effects between caregivers’ savouring the moment and patients’ positive affect and between patients’ savouring the moment and caregivers’ life satisfaction were not significant. The findings suggest the role of savouring in psychological well‐being within patient–caregiver dyads, highlighting the importance of investigating positive psychological pathways in their joint adaptation.
Healthcare encompasses multiple discourses to which health professionals, researchers, patients, carers and lay individuals contribute. Networks of patients and non-professionals often act collectively to build capacity, enhance access to resources, develop understanding and improve provision of care. This article explores the concept of health collectives and three notable examples that have had an enduring and profound impact in the Australian context.
A family caregiver is the one who provides care to their near and dear one who is suffering from some debilitating disease like oral cancer. Apart from providing physical care, they also provide emotional and financial support to their close relatives. They can be the patient's spouse, children, and siblings. This study was, hence, designed to understand the psychosocial impact of caregivers of oral cancer patients. Methodology: This was a qualitative study using in-depth interviews of 24 purposively chosen family caregivers irrespective of age, sex, and relationship with patients, who provided deep insight into the psychosocial impact of the disease on themselves during caregiving of their loved ones and how they coped with it. Interviews were taken in Hindi, in the houses of caregivers. Care was taken to maintain utmost privacy while taking the interviews, which were either audio recorded or noted down. Informed written consent was obtained from participants before the start of the study. Themes were evolved from the interviews and content analysis was performed using ATLAS.ti. Results: Six themes emerged after data analysis. Those were the impact on physical health and lifestyle, emotional impact, impact on family and social relationship, impact on financial and work status, improvement of hospital services, spiritual concern, and acceptance of the disease. A concept map was made to provide a vivid explanation of how oral cancer caused these impacts on caregivers and their interrelationship. Conclusion: Caregiving is not an easy job. This study recommends extra care to be taken in preparing them for caregiving to the oral cancer patients with adequate knowledge of the disease process and its consequences along with counseling facilities in the hospital to address the different psychosocial needs of the patients.
Objective The mental health challenges facing people who care for somebody with cancer are well documented. While many support interventions focus on provision of information or cognitive behavioural therapy, the literature suggests that psychosocial interventions could also be of value, especially given the low social support frequently reported by carers. Singing is a psychosocial activity shown to improve social support, increase positive emotions, and reduce fatigue and stress. This study explored whether weekly group singing can reduce anxiety, depression and well-being in cancer carers over a 6-month period. Design A multisite non-randomised longitudinal controlled study. Setting The Royal Marsden National Health Service Trust in Greater London. Participants 62 adults who currently care for a spouse, relative or close friend with cancer who had not recently started any psychological therapy or medication. Interventions On enrolment, participants selected to join a weekly community choir for 12 weeks (n=33) or continue with life as usual (n=29). Outcome measures The primary outcome was mental health using the Hospital Anxiety and Depression Scale. The secondary outcome was well-being using the Warwick Edinburgh Mental Wellbeing Scale. Using linear mixed effects models, we compared the change in mental health and well-being over time between the two groups while adjusting for confounding variables including demographics, health-related variables, musical engagement and length of time caring. Results Participants in the choir group showed a significantly greater decrease in anxiety over time than participants in the control group (B=-0.94, SE=0.38, p=0.013) and a significantly greater increase in well-being (B=1.25, SE=0.49, p=0.011). No changes were found for depression. Sub-group analyses showed carers with anxiety or below-Average well-being were most likely to benefit. Conclusions This study builds on previous research showing the mental health benefits of singing for people with cancer by showing that weekly singing can also support anxiety and well-being in cancer carers.
Informal caregivers are the primary source of support for cancer patients, providing assistance with household tasks, medical care and emotional support. These responsibilities often result in high levels of emotional, physical, social and financial burden for the caregiver. The aim of this study was to perform a scoping review exploring what is known regarding the financial costs experienced by caregivers and identify gaps in the literature. Seven databases were searched for articles published between May 2008 and May 2018 related to direct and indirect costs of informal cancer care. Included articles reported on the costs incurred by cancer caregivers as a dollar value, relied on caregiver‐reported costs and were peer reviewed. A total of 19 studies met the inclusion criteria. These studies reported out of pocket costs‚ opportunity costs of informal care time and caregiver time loss from paid employment. Care time was the largest source of cancer caregiver costs, averaging $4,809 per month when valued using the proxy good method or $2,877 per month when the opportunity cost approach was used. Caregiver costs were highest when the care recipient was in the palliative phase of the disease. There was an absence of literature reporting costs for cancer caregivers in low and middle income countries and none of the included studies considered costs related to the caregivers' medical expenditures. There were many challenges when comparing the costs across studies due to variations in the type of expenses reported and the methods used to value expenses. Quantifying the financial costs associated with being an informal caregiver can facilitate the communication of the financial burden caregivers experience, potentially spurring the development of policies and programs to reduce their financial burden and better support cancer caregivers.
In recent years, the clinical context for cancer has changed, and it is now characterized by extended survival rates and more diverse and complex cancer trajectories and symptomatology. The changes in the landscape of cancer care also include a shift towards the home setting or the outpatient setting with an increased amount of care being delivered at home or transferred to the patients themselves and their family caregivers. These changes have also impacted the type and amount of information required by the patients and their caregivers as well as the type of care needs that are to be addressed by health-care professionals. Finally, the transitions within the health-care setting might also create a caring gap that the patient is left to deal with independently or with minimal support. These changes have led to the emergence of innovative digital/technological solutions for supporting patients during their cancer care continuum.
Carter focuses on sleep deprivation and symptom management at home. Family caregivers provide increasingly complex care at home to family members and friends with cancer. Care that was once provided in the hospital by skilled, highly educated, and often advanced certified oncology nurses is now being provided in the home by family caregivers who are most often not in possession of these skill sets. With the advancement of therapies and delivery methods such as oral therapies and outpatient infusions, cancer care has moved out of the hospital and into the community. A unique contribution of nursing science to the understanding of human experiences is that we holistically evaluate biopsychosocial contributors to those experiences.
BACKGROUND AND PURPOSE: The informal care demands of primary malignant brain tumor (PMBT) patients include unique issues associated with neurological and cognitive symptoms. Existing caregiver needs questionnaires do not include these disease-specific symptoms, which are particularly distressing. Therefore, we have developed the neuro-oncology Caregiver Needs Screen (CNS) and evaluated its psychometric properties. METHODS: The 32-item instrument was developed based on PMBT caregiver interviews (N = 109) and expert review. The CNS was tested along measures of depression, anxiety, burden, and mastery in 122 PMBT caregivers. Principal components analysis was used to examine item properties and internal structure. Internal consistency reliability and construct validity were assessed. RESULTS: Six subscales were identified with internal consistency ranging between alpha = .653 and .857. Convergent validity was verified by moderate/high correlations between measures of caregiver well-being and CNS scale scores. CONCLUSIONS: Findings provide preliminary evidence of reliability and validity for the CNS. This instrument can be useful when assessing caregivers' needs for supportive care.
PURPOSE: To explore caregivers' writings about their experiences caring for adult individuals with cancer on a social media health communication website. PARTICIPANTS & SETTING: Journal entries (N = 392) were analyzed for 37 adult caregivers who were posting on behalf of 20 individuals with cancer. CaringBridge is a website used by patients and informal caregivers to communicate about acute and chronic disease. METHODOLOGIC APPROACH: A retrospective descriptive study using qualitative content analysis of caregivers' journal entries from 2009 to 2015. FINDINGS: Major categories identified in caregivers' online journals included patient health information, cancer awareness/advocacy, social support, caregiver burden, daily living, emotions (positive and negative), and spirituality. IMPLICATIONS FOR NURSING: Nurses often recommend using social media as a communication strategy for patients with cancer and their caregivers. The findings from this study provide potential guidance nurses may wish to offer caregivers. For example, nurses may talk with caregivers about how and what to post regarding treatment decisions. In addition, nurses can provide support for caregivers struggling with when and how often to communicate on social media.
Distance caregivers (DCGs) represent a growing demographic. The emotional burden of caregiving for a family member with cancer is amplified by the logistical challenges of providing support from afar. DCGs feel higher levels of distress, anxiety, and depression compared with local caregivers. Videoconference technology may alleviate both the emotional and practical burdens faced by DCGs. This is an ongoing randomized controlled trial in 32 outpatient ambulatory clinics at a large, urban, comprehensive cancer center. To date, 332 patient‐DCG dyads have been enrolled. DCGs must have internet access and have been identified by the patient as a source of support. The intervention period is 4 months. DCGs are randomized to one of three arms: DCGs in Arm 1 receive four coaching sessions with an advanced practice nurse or social worker and four videoconference appointments during the oncologist‐patient office visit. DCGs in Arm 2 participate in four videoconference appointments with the oncologist and patient, and Arm 3 is the control group, which receives access to information through a website. Primary outcome variables are DCG distress, anxiety, depression, burden, self‐efficacy, and emotional support. These data are collected electronically at baseline, 4 months, and 6 months. Patient distress, anxiety, and depression are also assessed at these same intervals using brief in‐person interviews. The change in each of the DCG outcomes over time will be examined by a repeated measures analysis of covariance.
Objective: Family caregivers are the default caring personnel for terminal cancer patients. The characteristics, demographics, distribution, psychological burden, and socioeconomic standards differ between high- and low-income countries. We aimed to assess those factors and their direct reflection on both the patient and the caregiver. Patients and Methods: This is a comparative cross-sectional study for terminal cancer patients in the palliative care unit between the United Kingdom (UK) as a high-income community and Egypt as a low-income community. We assessed the different characteristics, demographics, living place, the degree of relevance, and the availability of caregivers. Results: We have recruited 216 patients from the UK and 117 patients from Egypt. Informal caregivers were available in 74.5% and 92.3% for these patients with a mean age of 71.5 (standard deviation [SD] 16) years and 50.9 (SD 15.18) years, respectively. There has been a statistically significant difference between the two countries' caregivers in being married, family, and living in the same household (P < 0.0001). Conclusion: Low-income countries are more common to have an informal caregiver who is a family member of different degree of relevance. Caregivers in low-income settings tend to be younger, of the female gender, married, and living in the same household than in high-income ones.
Purpose: This study addressed the experiences of older caregivers of cancer patients in the 2 weeks following a hospital discharge. It sought to understand the challenges they face in providing supportive care to patients at home. Methods: Qualitative descriptive interviews with a narrative approach were conducted with each caregiver at 1 and 2 weeks following the patient’s discharge from the hospital. A thematic analysis approach was used to identify the themes that emerged from the caregiver interviews. Results: Caregivers were primarily Caucasian (77%), were mostly 68 years of age or older (62%), and were primarily caring for a spouse (69%). Three key themes emerged from the qualitative analysis: caregiver and patient wellness are connected, caregivers’ struggle with control issues, and challenges in communication with health professionals. Conclusions: These findings highlight psychosocial changes that caregivers experience over the 2-week time period following hospital discharge. Implications include the need to identify interventions to better prepare caregivers for the post-discharge period.
Background Increasingly, people who are not health professionals provide care for a partner, family member or friend affected by cancer, which can have negative effects on their health and well‐being. Psychosocial interventions that comprise psychological or social support and involve direct interaction between a healthcare professional and caregivers (or caregiver‐patient pairs) may help to address the negative health effects for caregivers. Review question What is the effectiveness of psychosocial interventions compared to usual care for informal caregivers of people living with cancer on a range of outcomes related to health and well‐being? Results We found19 trials that compared psychosocial interventions with usual care, in studies that included almost four thousand participants. Studies included caregivers of people affected by different cancers across all stages of the disease. There were differences in intervention make‐up. Intervention examples include providing information and/or teaching caregivers (or caregiver‐patient pairs) coping, communication or problem‐solving skills to manage symptoms or improve relationships. Interventions were delivered by nurses, psychologists or other professionals on an outpatient basis or at home via telephone. There may be a minimal benefit for caregiver quality‐of‐life immediately after the intervention, but this may not last. Psychosocial interventions may have little to no effect on quality of life for patients six to 12 months post‐intervention, but we are uncertain whether or not interventions improve quality of life for patients immediately post‐intervention. Psychosocial interventions may have little to no effect on caregiver depression, anxiety, distress and physical health and patient anxiety and distress at any time after the intervention, or on patient depression immediately and patient physical health six to 12 months post‐intervention. Psychosocial interventions probably have little to no effect on patient physical health immediately post‐intervention or patient depression three to six months post‐intervention. Three studies reported adverse effects including increased distress and sexual function‐related distress and lower relationship satisfaction levels for carers, increased distress levels for patients, and intervention content that was seen as inappropriate for some participants. No studies looked at cost‐effectiveness or intervention satisfaction for caregivers or patients. Because the quality of evidence was low generally, findings must be treated with caution. Conclusion Psychosocial interventions do not impact to a clinically meaningful degree outcomes for caregivers irrespective of patient cancer stage or type. Perhaps, other outcomes (e.g. relationship quality) or other psychosocial interventions (e.g. meditation) may be more helpful for caregivers. Interventions should be subjected to better conducted trials. Intervention development should involve caregivers and pay particular attention to individual personal needs.
BACKGROUND: Behavioral symptoms among postoperative patients with intracranial tumors and distress among caregivers are common. OBJECTIVES: This article aimed to assess the effectiveness of a brief nurse-led intervention on behavioral symptoms of postoperative patients with intracranial tumors and distress of their caregivers. METHODS: A randomized controlled trial was conducted on 80 patients with intracranial tumors and their family caregivers in a tertiary care institute in India. A brief nurse-led intervention was provided in the form of individual counseling, and a pamphlet was given to patients and caregivers in the experimental group at the time of discharge. Behavioral symptoms of patients and distress of caregivers were assessed. FINDINGS: Patients in the experimental group had significantly fewer behavioral symptoms and less severity of behavioral symptoms as compared to the control group. Caregivers in the experimental group had significantly less severity of distress as compared to the control group.
Caregiving can be experienced as a stressful process, which can cause psychological and physical consequences. The combination of prolonged stress and the physical demands of caregiving may impair the physiological functioning of caregivers and increase the risk of health problems creating considerable stress in the life of caregivers regarding emotional, physical, social and financial areas. This literature review explored studies that used measures of the autonomic nervous system in caregivers of oncology patients such as electrodermal and cardiovascular (re)activity. The results revealed that caregivers had elevated stress levels and a serious autonomic imbalance that may, in the long term, trigger negative health consequences such as infectious diseases, cancer progression, cardiovascular disease and even premature death. The results showed the need to carry out preventive strategies in this population, in order to improve the autonomic profile of caregivers of cancer patients.
Objective: To describe the study protocol of the Multimedia Self-Management (MSM) intervention to prepare patients and family caregivers (FCGs) for lung cancer surgery.; Design: The study is a five-year, single site, randomized controlled trial of 160 lung cancer surgery FCG and patient dyads (320 total participants), comparing intervention and attention control arms.; Setting: One National Cancer-Institute (NCI) designated comprehensive cancer center in Southern California.; Participants: Patients who are scheduled to undergo lung cancer surgery and their FCGs are enrolled as dyads only.; Intervention: Based on the Chronic Care Self-Management Model (CCM), the intervention is a nurse-led, caregiver-based, multimedia care program for lung cancer surgery. Its primary focus is to help FCGs develop self-management skills related to their caregiving role through goal setting, proactive planning, building problem-solving skills, and accessing family support services. The intervention also supports dyads to prepare for surgery and post-operative recovery at home. It includes videos, print, web-based, and post-discharge telephone support.; Main Outcome Measures: FCG and patient psychological distress and QOL; FCG burden and preparedness for caregiving; FCG and patient healthcare resource use (in-home nursing care, urgent care/ER visits, readmissions).; Analysis: Repeated measures ANCOVA statistical design will be used, removing variances prior to examining mean squares for the group by occasion interactions, and co-varying the baseline scores. In addition, structured equation modeling (SEM) will assess whether mediating and moderating factors are associated with outcomes. ClinicalTrials.gov Identifier: NCT03686007.
Objective: The spiritual dimension is important in the process of coping with stress and may be of special relevance for those caring for cancer patients in the various phases of caregivership, although current attention is most prevalent at the end of life. This study explores the associations among spiritual well-being (SWB), caregiver burden, and quality of life (QoL) in family caregivers of patients with cancer during the course of the disease. Method: This is a cross-sectional study. All participants (n = 199) underwent the following self-report questionnaires: the SWB-Index, the Medical Outcomes Study Short Form, and the Caregiver Burden Inventory (CBI). SWB scores were dichotomized at a cutoff corresponding to the 75th percentile. Statistical analyses were made using the Student t or by chi-square test to compare high and low SWB groups. Result The high SWB group reported significantly better Medical Outcomes Study Short Form scores in bodily pain (p = 0.035), vitality (p < 0.001), social activities (p = 0.001), mental health (p < 0.001), and in standardized mental component subscales (p < 0.001) than the low SWB group. No significant differences were detected between the two SWB groups in physical activity, physical role, general health, emotional status, and standardized physical component scale. The high SWB group also had better CBI scores in the physical (p = 0.049) and developmental burden (p = 0.053) subscales. There were no significant differences in the other CBI scores (overall and sections). Significance of results This study points out that high SWB caregivers have a more positive QoL and burden. Knowledge of these associations calls for more attention on the part of healthcare professionals toward spiritual resources among family cancer caregivers from the moment of diagnosis and across the entire cancer trajectory.
Purpose: The present study examined the degree to which loneliness mediated the influence of negative (social constraints) and positive (emotional support) relationship qualities on the global mental health of advanced gastrointestinal (GI) cancer patients and their family caregivers. Methods: Fifty patient-caregiver dyads completed measures assessing social constraints (e.g., avoidance, criticism) from the other dyad members, emotional support from others, loneliness, and global mental health. Structural equation modeling was used to examine individual models, and Actor-Partner Interdependence Mediation Modeling was used to examine dyadic associations. Results: Individual path analyses for patients and caregivers demonstrated that emotional support had a significant indirect effect on mental health through loneliness (Bs = 0.32 and 0.30, respectively), but no associations were found between social constraints and mental health. In dyadic analyses, participants' loneliness and mental health were not significantly related to their partner's emotional support, loneliness, or mental health (Bs = - 0.18 to 0.18). Conclusions: Findings suggest that for advanced GI cancer patients and caregivers, emotional support from others alleviates feelings of loneliness, which may lead to better mental health. However, the benefits of emotional support appear to be primarily intrapersonal rather than interpersonal in nature. Additionally, participants endorsed low levels of social constraints, which might explain their lack of relation to loneliness and mental health. Continued examination of interdependence in social processes between cancer patients and caregivers will inform intervention development.
Background/Aims: Pain is a major concern of patients with advanced cancer and their caregivers. There is strong evidence that pain coping skills training interventions based on cognitive-behavioral principles can reduce pain severity and pain interference. However, few such interventions have been tested for patients with advanced cancer and their family caregivers. This study aims to test the efficacy of a caregiver-guided pain coping skills training protocol on patient and caregiver outcomes. Methods: A total of 214 patients age ≥18 with Stage III–Stage IV cancer and moderate to severe pain, along with their family caregivers, are being identified and randomized with a 1:1 allocation to the caregiver-guided pain coping skills training intervention or enhanced treatment-as-usual. Dyads in both conditions receive educational resources on pain management, and the caregiver-guided pain coping skills training intervention includes three weekly 60-min sessions conducted with the patient–caregiver dyad via videoconference. Measures of caregiver outcomes (self-efficacy for helping the patient manage pain, caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy for pain management, pain intensity and interference, psychological distress) are collected at baseline and post-intervention. Caregiver outcomes are also collected 3 and 6 months following the patient's death. The study is enrolling patients from four tertiary care academic medical centers and one free-standing hospice and palliative care organization. The primary outcome is caregiver self-efficacy for helping the patient manage pain. Results: This article describes challenges in the design and implementation of the CaringPals trial. Key issues for trial design include the identification and recruitment of patients with advanced cancer and pain, and the follow-up and collection of data from caregivers following the patient's death. Conclusion: The CaringPals trial addresses a gap in research in pain coping skills training interventions by addressing the unique needs of patients with advanced cancer and their caregivers. Findings from this study may lead to advances in the clinical care of patients with advanced cancer and pain, as well as a better understanding of the effects of training family caregivers to help patients cope with pain.
Aims: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.; Background: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.; Design: A pre-experimental design with a one-group pre-test/posttests measurements.; Methods: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.; Results: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).; Conclusion: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.; Impact: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care.
Context: Advanced lung cancer patients typically have a poor prognosis and many symptoms that interfere with functioning, contributing to high rates of emotional distress in both patients and family caregivers. There remains a need for evidence-based interventions to improve functional outcomes and distress in this population.; Objectives: This pilot trial examined the feasibility and preliminary efficacy of telephone-based Acceptance and Commitment Therapy (ACT) for symptomatic, advanced lung cancer patients and their distressed family caregivers. Primary outcomes were patient symptom interference with functioning and patient and caregiver distress.; Methods: Symptomatic, advanced lung cancer patients and distressed caregivers (n=50 dyads) were randomly assigned to six sessions of ACT or an education/support condition. Patients completed measures of symptom interference and measures assessing the severity of fatigue, pain, sleep disturbance, and breathlessness. Patients and caregivers completed measures of distress and illness acceptance and struggle.; Results: The eligibility screening rate (51%) and retention rate (76% at 6 weeks post-intervention) demonstrated feasibility. No group differences were found with respect to patient and caregiver outcomes. Both groups showed a small, significant decrease in struggle with the illness over the study period, but did not show meaningful change in other outcomes.; Conclusion: Findings suggest that telephone-based ACT is feasible for many advanced lung cancer patients and caregivers, but may not substantially reduce symptom interference and distress. Low baseline levels of certain symptoms may have contributed to null findings. Next steps include applying ACT to specific, clinically meaningful symptom interference and varying intervention dose and modality.
OBJECTIVES: To evaluate the feasibility, acceptability, safety, and fidelity of a psychoeducational intervention to improve family caregiver technical and communication skills using structured simulations. SAMPLE & SETTING: 18 family caregivers of adult patients receiving radiation therapy for head and neck cancer at University Hospitals Seidman Cancer Center in Cleveland, Ohio. METHODS & VARIABLES: A two-group, randomized pilot trial design was used. The intervention consisted of four one-on-one sessions between the caregiver and nurse interventionist during the patient's first, second, fourth, and sixth week of radiation treatment. Participants completed measures of self-efficacy for caregiving, anxiety, depression, and health-related quality of life at baseline, during the fifth week of radiation therapy, and four weeks after radiation therapy. RESULTS: 4 of the 9 caregiver participants completed the intervention. Improvements in scores for the intervention group were noted for self-efficacy, global mental health, anxiety, and depression. IMPLICATIONS FOR NURSING: Refinement of the intervention is needed to improve feasibility. Although a caregiver intervention that incorporates simulation for skills training is acceptable and safe, flexibility in protocol is needed.
Objective: To explore how caregivers are involved in making treatment decisions for older people living with dementia and a new diagnosis of cancer. Method: A systematic review of PubMed, CINAHL, PsycINFO, Web of Science, and Scopus databases was conducted. Studies recruiting formal or informal caregivers for older people with dementia and a diagnosis of cancer were considered for inclusion. Results: Of 1761 articles screened, 36 full texts were assessed for eligibility, and six were included in the review. This review has identified that health care professionals (HCPs) are often unaware of the coexistence or severity of dementia in cancer patients, and therefore fail to properly address care needs as a result. While caregivers are relied on to help make decisions, they have unmet information needs and feel excluded from decision-making. Conclusion: Treatment decision making in the context of older adults with dementia and a new diagnosis of cancer needs further research. This will help HCPs to understand their needs and improve the experience of decision making for both caregivers and the people that they care for.
Objectives: Research has demonstrated that serving in the caregiver role is often associated with increased symptoms of depression, stress, and anxiety, but some people fare better than others in managing the burden of caregiving. The goal of the present study was to examine the potential moderating role of goal adjustment (the ability to disengage from unattainable goals and reengage in alterative ones) on the relation between caregiver burden and distress in family caregivers of cancer patients. Methods: Caregivers of adult family members diagnosed with cancer in the past 3 years participated (N = 102). Participants were consented and completed online questionnaires on psychological distress, caregiver burden, and goal adjustment. Results: The ability to disengage from unattainable goals was associated with lower anxiety and stress in the face of increasing caregiver burden. By contrast, the ability to reengage in alternative goals was associated with lower depression as burden increased. Conclusions: The present study suggests that goal adjustment may play an important moderating role in the relationship between caregiver burden and distress. Caregivers who are better able to disengage from unattainable goals may experience less stress and anxiety, and caregivers who are better able to reengage in alternative goals experience less depressed mood. This study provides preliminary evidence that learning different ways to approach and adjust goals may reduce depression, anxiety, and stress in family caregivers.
Purpose: The newly developed "Herlev Hospital Empowerment of Relatives through More and Earlier information Supply" (HERMES) intervention systematically identifies cancer caregivers' unmet needs for information from health care professionals (HCPs) and offers them the information they lack. The aim of this study was to investigate the effect of the HERMES intervention on caregivers' perception of information, communication, attention and help from HCPs, fulfillment of care needs, and anxiety and depression.; Methods: A randomized intervention study with immediate intervention in the intervention group and delayed intervention (after follow-up) in the control group among caregivers of cancer patients starting chemotherapy.; Results: Totally 199 caregivers were included (intervention group, n = 101; control group, n = 98). No intervention effect was found on overall satisfaction with information from HCPs (p = 0.1687) measured by a single item from the Cancer Caregiving Tasks, Consequences and Needs Questionnaire (CaTCoN) and chosen as primary outcome. However, positive effects were found on the CaTCoN subscales "Problems with the quality of information from and communication with HCPs" (p = 0.0279), "Lack of information from HCPs (HERMES)" (p = 0.0039), and "Lack of attention on the caregivers' wellbeing from HCPs" (p < 0.0001). No effect was found on the CaTCoN subscale "Need for help from HCPs", the Family Inventory of Needs subscale regarding fulfillment of care needs, or the Hospital Anxiety and Depression scale.; Conclusions: Although no effect was found on overall satisfaction with information, the HERMES intervention had positive effects on the caregivers' experiences of the amount of information and attention given to them and the quality of information and communication.; Trial Registration: ClinicalTrials.gov (Identifier: NCT02380469).
Objective: Cancer and its treatment are highly stressful events that may significantly affect the daily emotional well-being of patients and their informal caregivers. Patient- and caregiver-reported received and provided support may contribute to both dyad members' fluctuation in daily affect, but few studies have examined these associations from a dyadic perspective so far. The current study examined predictions derived from 3 theories on patterns of relations between subjectively assessed dyadic provided and received support and daily affect within dyad members: (a) invisible support theory, (b) the suggestion that providing support may be better than receiving it, and (c) beneficial supportive equity. Method: Actor-partner interdependence models were tested using 28-day diary data from 200 patient-caregiver dyads. Diary assessments started on the first day following patients' discharge from the hospital, that is, about 3 weeks following patients' hematopoietic stem ceil transplantation (HSCT). Results: Daily invisible support was not related to more positive indicators of patients' or caregivers' daily affect. For patients' affect, findings generally supported the hypothesis of psychological benefits of support provision over receipt, in both concurrent and lagged analyses. For caregivers, visible received support from patients and supportive equity (i.e., both provided and received support relatively high), both concurrently and lagged, were related with better emotional state. Conclusions: The findings highlight the costs, benefits, and complexities of daily support transactions in dyads following HSCT, thus indicating the practical implications of the study: the importance of screening for support needs and abilities in both patients and caregivers.
Purpose: In resource-limited settings, family caregivers (FCGs) of adult cancer patients (ACPs) function in a context marred by high patient symptom burden, limited cancer care services and support and high caregiving burden. Despite this predicament, little is known about the quality of life (QoL) of FCGs in these settings. The study aimed to explore the determinants of QoL among FCGs of ACPs in Uganda.; Methods: A cross-sectional design was used to collect data from 284 FCGs of ACPs. The study questionnaire was composed of the Katz Index, Family Pain Questionnaire, modified Chronic Pain Self-efficacy Scale and the Caregiver Quality of Life-Index-Cancer.; Results: The mean age of FCGs was 36 ± 13.8 years. Most ACPs had stage 3 or 4 cancer (56%), severe pain (66.2%), reported moderate pain relief (51.1%) and were on chemotherapy (60.9%). The overall QoL of FCGs (70.2 ± 20.3) was moderate and 46.8% had low QoL. Most FCGs had high positive adaptation or financial concerns (55.3%) and low QoL in terms of burden (50.7%), disruptiveness (53.5%) and support (56.7%). The main determinants of overall QoL were FCGs' knowledge and self-eficacy for cancer pain management. The determinants of burden, disruptiveness, support and positive adaptations and financial concerns are reported.; Conclusion: The key determinants of the QoL of FCGs were knowledge and self-efficacy for cancer pain management. In Uganda and similar settings, interventions to build FCGs capacity in cancer-related pain and other symptom management may help to enhance the QoL of FCGs and the ACPs.
Objectives: To review the family caregivers' unmet needs in the long-term phase of survivorship to identify unique challenges faced by family caregivers.; Data Sources: Research-based articles and published reports.; Conclusion: Family caregivers diverge into three distinct groups in the long-term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories.; Implications For Nursing Practice: Comprehensive understanding of family caregivers' unmet needs is required to develop family caregiver care plans in long-term survivorship.
Background: Cancer is a chronic disease and a major health problem. It affects both patients and their familycaregivers multidimensionally. The family caregivers may be affected by not only the disease process but also hospital policies, economic difficulties, accessibility and communication of health care service and can be in need of help.This process may affect their quality of life. However, there have not been enough studies on quality of life of family caregivers of patients with cancer in Turkish culture. Therefore, this study aimed to evaluate the quality of life of family caregivers of patients with cancer in Turkey. Objectives: The purpose of study was to evaluate the quality of life of family caregivers with cancer patients in Turkey. Methods: Participants consist of the family caregivers whovolunteered to take part in this descriptive study from 11 hospitals (n =378) which has a daily chemotherapy unitsand located within the boundaries of Ankara, Turkey. ‘Sociodemographic Characteristic Form’ and ‘Quality of LifeScale-Family Version were used as data collection tool. The Kruskal-Wallis and Mann-Whitney U, tests were usedfor data analysis. Resultes: It is found that there are statistically significant difference among the factors of gender,employment status, income level, and whether caregivers reside with their patients. Family caregivers’ quality of life is negatively affected during the caregiving process (p < 0.05). Conclusion: The results indicate that family caregivers’quality of life are negatively affected to care process. The results of this research are important as they highlight the need to also consider family caregivers’ quality of life when caring for patients, and study highlight possible areas inwhich support can be provided for family caregivers of cancer patients in Turkey.
Objective: To review characteristics and experiences of informal cancer caregivers.; Data Sources: Recent empirical studies and review papers on informal cancer caregiving.; Conclusion: Increasing cancer prevalence and shifts toward outpatient care place substantial burden on caregivers. Cancer progression, treatment, and individual characteristics influence the caregiving experience. Longitudinal research and the development, testing, and implementation of effective interventions for cancer caregivers are needed.; Implications For Nursing Practice: Nurses play key roles in efforts to support cancer caregivers. Nursing interventions that incorporate caregiver preparation, support, and training in caregiving tasks are warranted.
Men are increasingly participating, and acknowledging their roles, as informal . Yet, there has been comparatively little exploration of their experiences therein, especially within the context of cancer care. Here, drawing on semi-structured qualitative interviews with 16 Australian male carers for a relative with cancer, and using constructivist grounded theory, we explore their experiences of informal caring. Our analysis highlights a series of tensions, including the following: the meanings and practicalities of care provision including notions of reciprocity, duty, autonomy, and interdependence; the discomforts of dependency and vulnerability; and the complicated moralities that inflect "caring well." Given the shifting dynamics around informal care, we argue for increased attention to the affective tensions that arise at the nexus of moralities and masculinities in informal caring relations, especially as they are articulated in the context of illness, affliction, and dependency.
Objective: The present study aimed to identify the most important protective factors predicting caregivers' depressive symptoms among factors of caregivers' dispositional mindfulness, self‐compassion, compassion from others, and patients' dispositional mindfulness and their moderator effects on the relationship between caregiving stress and depressive symptoms. Methods: A total of 72 lung cancer outpatients and their family caregivers participated in this study. Family caregivers completed the Kingston Caregiver Stress Scale, Beck Depression Inventory‐II (BDI‐II), Five Facet Mindfulness Questionnaire (FFMQ), Self‐Compassion Scale, and Compassion from Others Scale. Patients completed the EORTC Quality of Life Questionnaire Core 30 (EORTC QLQ‐C30), BDI‐II, and FFMQ. Results: After controlling for patients' factors (treatment status, symptom distress, and depressive symptoms) and caregivers' health status, caregivers' stress and dispositional mindfulness, the domain of mindful awareness, and self‐compassionate action were significantly associated with their depressive symptoms. Further analysis indicated that mindful awareness or self‐compassionate action could buffer the effect of caregiving stress on depressive symptoms. When the two moderators, mindful awareness and self‐compassionate action, were tested simultaneously, only self‐compassionate action remained as a significant moderating effect. Conclusions: Caregivers' mindful awareness and self‐compassionate action were protective factors, which mitigate the impact of caregiving stress on their depressive symptoms. Therefore, the future supportive program aims at training the competencies of self‐compassionate action with mindful awareness, which may enhance caregivers' coping resources
Objective: The family caregivers of patients receiving palliative care experience high levels of anxiety and depression. The aim of the present study was to investigate the factors associated with family caregivers' anxiety and depression when caring for patients with advanced cancer in Greece.; Methods: The sample consisted of 100 patients undergoing palliative radiotherapy and their respective caregivers. Patients completed the Hospital Anxiety and Depression Scale (HADS) and the MD Anderson Symptom Inventory. Their respective caregivers completed the Oberst Caregiving Burden Scale, the Bakas Caregiving Outcomes Scale, and the HADS. Correlational and multiple regression analyses were conducted to identify potential predictors of anxiety and depression.; Results: The majority of patients were male (63.0%), whereas the majority of their caregivers were female (76.0%). The mean ages of patients and caregivers were 63.9 ± 10.8 and 53.3 ± 12.6 years, respectively. Caregiving anxiety and depression were associated with patients' variables, such as gender (P < 0.0005), primary cancer (P = 0.008), and past surgery (P = 0.002), and caregiver's variables, such as gender (P = 0.001), co-residence (P = 0.05), previous care experience (P = 0.04), and means of transport (P = 0.038). In multiple regression analyses, caregiving anxiety and depression were significantly predicted by caregivers' and patients' characteristics, in a model that accounted for 48% of the anxiety variance (P < 0.0005) and 39% of the depression variance (P < 0.0005).; Conclusion: The caregivers who experienced more anxiety and depression shared the following traits: they were women, cared for men with lung cancer, cared for patients not undergoing surgery, lived together, were younger, went to the hospital by private means of transport, had previous care experience, and perceived an increased degree of general burden. Further investigation of the factors that may affect caregivers' psychological state is required to better identify parameters that may predict it.
Objective: To elicit informal caregiver feedback about an mHealth resource and it's potential as a nurse-delivered intervention for caregiver communication support.; Data Sources: Four focus groups with current oncology caregivers that involved caregiver use of the resource and response to a video demonstrating the resource as a nursing intervention. A brief assessment of the resource was collected for triangulation of data.; Conclusion: Caregivers rated the resource as overwhelmingly positive and reported that use of the resource gave an increased sense of preparedness. Caregivers shared ideas for future expansion of the resource, highlighted the need for user-responsive design, and described the need for a caregiver-centered tool.; Implications For Nursing Practice: Communicating complex terminology relating to treatment, side effects, and symptoms requires resources to meet health literacy needs. A nursing protocol for using the resource is provided based on feedback collected from caregivers.
Objectives: Based on recent shifts in reimbursement for cancer treatment from fee-for-service to bundled and value-based payment, this concluding article summarizes data from these papers and the large body of literature on caregiving to suggest how caregiving research might be redirected to link the formal with the informal systems to achieve higher-quality and lower-cost care. Caregiver dyads, the tasks of care, and strategies for training are presented.; Data Sources: Articles in this issue of Seminars in Oncology Nursing, the larger body of caregiving literature, and the Oncology Care Model driving bundled payments and value-based care.; Conclusion: Research on informal caregiving for cancer patients should begin to reframe the rich body of evidence available toward a focus on caregivers reactions to the tasks of care, the training necessary for caregivers to perform them, and how each contributes to quality care at lower costs and appropriate outcomes given patients' stage of disease and goals of treatment.; Implications For Nursing Practice: Oncology systems must take a more active role in including patients and their families as partners to manage treatments and side effects to achieve the best possible patient outcomes. They must be able to evaluate the patient and the caregiver to determine what tasks they will be able to perform, and then make sure they have the training and resources to carry out those tasks. Training could be done by social media and through communication using patient portals that could be expanded through the electronic medical records to include caregiver portals, enabling caregiver questions and reports of patients' conditions.
Objectives: To describe common areas of threats to patient safety and quality of care when caregivers provide care. Recommendations for caregivers to enable them to provide safe care are included.; Data Sources: Research-based articles and reports.; Conclusion: The literature is limited in discussion on home safety issues for caregivers. Non cancer-specific literature provides some direction for recommendations for nurses to guide caregivers.; Implications For Nursing Practice: The home environment is an unregulated and uncontrolled site, and the safety risks families take are unknown. Professionals should assess the caregiver's knowledge and ability when providing caregiving guidance to ensure the patient is receiving safe and quality care. Nurses need to stress the importance of providing safe quality care and provide education and community resources.
Melanoma is the deadliest form of skin cancer. In Australia, where this study was conducted, there were 1,281 deaths from melanoma in 2016. Treatments for melanoma have changed rapidly in recent years with the introduction of immune and targeted therapies. These have resulted in longer term survival for some, but it is not clear which patients these treatments will work for, and for how long. This study aimed to understand the impact of melanoma treatments, as they relate to diagnosis and prognosis, on the experiences of family carers. Interviews were conducted with twenty carers of patients who were treated at three melanoma centres in Australia and who subsequently died. The study found that diagnosis of advanced melanoma was a time of uncertainty as carers struggled to understand the implications of the diagnosis. Treatment options in the form of relatively new immune and targeted therapies added to uncertainty around prognosis (i.e. the likely outcome, such as chance of survival). Carers reported unclear communication of prognosis by medical specialists. Some carers reported that medical specialists did not want or were not able to give a prognosis. Many carers expected that treatments would have positive outcomes. The study findings indicate that medical specialists should recognise and address carer understanding of and need for information about prognosis as early as possible following diagnosis. Communication of the uncertain benefit of these new therapies can help patients and carers make decisions about treatment preference and care planning
Objective: Develop and validate an instrument to assess family resilience and, more specifically, the family dynamics and resources, estimating the adaptation flexibility to cancer disease. Cohesion, communication, coping style and relational style were considered as critical functional areas in the construction of the instrument.; Design: Two cross-sectional studies. Study 1: identification of factorial structure of the questionnaire in two samples with different cancer sites. Study 2: validation of the questionnaire in patients with cancer in two different phases of their therapeutic pathway.; Participants and Setting: A total of 213 patients with a histologically confirmed non-metastatic breast or prostate cancer and 209 caregivers were recruited for the two studies from an oncological hospital in Italy.; Outcome Measures: The Resilience Scale for Adults and the Family Resilience (FaRE) Questionnaire, developed by the researchers, were administered to all patients and caregivers who gave consent.; Results: In study 1, the 60-item version of the FaRE Questionnaire underwent discriminant and construct validity, internal consistency and factorial analysis. Comparisons between patient and caregiver populations showed that patients perceived higher levels of family resources (p=0.048) and that patients with prostate cancer perceived less social support compared with patients with breast cancer (p=0.002). Factor analysis demonstrated four domains: communication and cohesion, perceived social support, perceived family coping, and religiousness and spirituality. In study 2, the validity and factorial structure of the final scale, composed of 24 items, were confirmed. The Cronbach alpha of all subscales was above 82. Normative values for patients with breast cancer can provide indications of family resilience levels.; Conclusions: Preliminary findings showed acceptable psychometric properties for the FaRE Questionnaire to evaluate family resilience in oncological patients and their caregivers. Further research should test its sensibility to change to assess its use as a psychoemotional monitoring tool and its validity in other medical contexts.
Objectives: To describe the current evidence of studies examining the use of information technology for family caregivers of persons with cancer. We highlight emerging technologies and trends and discuss ethical and practical implications.; Data Sources: Review scientific studies and systematic reviews of technology use to support caregivers of persons with cancer.; Conclusion: The evidence base is growing; however, more studies are needed to test the effectiveness of technology.; Implications For Nursing Practice: Several tools have potential to provide support to family caregivers but the selection of such tools needs to address access, privacy, interoperability, and usability considerations.
Context: After cancer diagnosis, personal value priorities may change in a way that would transform such values and how life is perceived by cancer patients and their caregivers, including happiness and its pursuit.; Objectives: The objective of the study was to analyze and compare what cancer patients, informal caregivers, and healthy population believe that would make them happy.; Methods: A qualitative content analysis was performed on the responses to a single question: "What is missing for you to be happy?" Narratives of cancer patients (n = 242, face-to-face interview), informal caregivers (n = 125, face-to-face interview), and healthy participants (n = 1,671, recruited through social media, online survey) were analyzed. Word clouds were created for each group of participants. Contents were identified and frequencies were compared among participants by means of chi-square and Fisher's exact tests.; Results: Overall, participants were pursuing better health (n = 288, 14.1%), better interpersonal relationships (n = 456, 22.4%), money (n = 412, 20.2%), and work-related aspects (n = 481, 23.6%). Cancer patients and informal caregivers sought better health and cure more often than when compared to healthy people (P < 0.001). Among cancer patients, survivors' profile tended to be similar to that of the healthy population concerning what they need to be happy. Unexpectedly, "cure" (22.7%) was more frequent among participants with incurable cancer.; Conclusion: Regardless of the group they were in, participants sought happiness in what they considered to be important to their lives, but it was something they did not have at the time of the interview. Psychoeducational and cognitive-behavioral strategies focused on how to deal with life expectations among people facing cancer are awaited.
Objective: Advance care planning (ACP) increases quality of life and satisfaction with care for those with cancer and their families, yet these important conversations often do not occur. Barriers include patients' and families' emotional responses to cancer, such as anxiety and sadness, which can lead to avoidance of discussing illness-related topics such as ACP. Interventions that address psychological barriers to ACP are needed. The purpose of this study was to explore the effects of a mindfulness intervention designed to cultivate patient and caregiver emotional and relational capacity to respond to the challenges of cancer with greater ease, potentially decreasing psychological barriers to ACP and enhancing ACP engagement. Method: The Mindfully Optimizing Delivery of End-of-Life (MODEL) Care intervention provided 12 hours of experiential training to two cohorts of six to seven adults with advanced-stage cancer and their family caregivers (n = 13 dyads). Training included mindfulness practices, mindful communication skills development, and information about ACP. Patient and caregiver experiences of the MODEL Care program were assessed using semistructured interviews administered immediately postintervention and open-ended survey questions delivered immediately and at 4 weeks postintervention. Responses were analyzed using qualitative methods.Result Four salient themes were identified. Patients and caregivers reported the intervention (1) enhanced adaptive coping practices, (2) lowered emotional reactivity, (3) strengthened relationships, and (4) improved communication, including communication about their disease. Significance of resultsThe MODEL Care intervention enhanced patient and caregiver capacity to respond to the emotional challenges that often accompany advanced cancer and decreased patient and caregiver psychological barriers to ACP.
Background: The diagnosis and treatment of a brain or spinal cord tumour can have a huge impact on the lives of patients and their families with family caregiving often resulting in considerable burden and distress. Meeting the support needs of family caregivers is critical to maintain their emotional and physical health. Although support for caregivers is becoming more widely available, large-scale implementation is hindered by a lack of high-quality evidence for its effectiveness in the neuro-oncology caregiver population.; Objectives: To assess the effectiveness of supportive interventions at improving the well-being of caregivers of people with a brain or spinal cord tumour. To assess the effects of supportive interventions for caregivers in improving the physical and emotional well-being of people with a brain or spinal cord tumour and to evaluate the health economic benefits of supportive interventions for caregivers.; Search Methods: We searched the Cochrane Central Register of Controlled Trials (CENTRAL; 2018, Issue 7), MEDLINE via Ovid, and Embase via Ovid. We also handsearched relevant published conference abstracts (previous five years), publications in the two main journals in the field (previous year), searched for ongoing trials via ClinicalTrials.gov, and contacted research groups in the field. The initial search was in March 2017 with an update in August 2018 (handsearches completed in January 2019).; Selection Criteria: We included all randomised controlled trials (RCTs) where caregivers of neuro-oncology patients constituted more than 20% of the sample and which evaluated changes in caregiver well-being following any supportive intervention.; Data Collection and Analysis: Two review authors independently selected studies and carried out risk of bias assessments. We aimed to extract data on the outcomes of psychological distress, burden, mastery, quality of patient-caregiver relationship, quality of life, and physical functioning.; Main Results: In total, the search identified 2102 records, of which we reviewed 144 in full text. We included eight studies. Four interventions focused on patient-caregiver dyads and four were aimed specifically at the caregiver. Heterogeneity of populations and methodologies precluded meta-analysis. Risk of bias varied, and all studies included only small numbers of neuro-oncology caregivers (13 to 56 participants). There was some evidence for positive effects of caregiver support on psychological distress, mastery, and quality of life (low to very low certainty of evidence). No studies reported significant effects on caregiver burden or quality of patient-caregiver relationship (low to very low certainty of evidence). None of the studies assessed caregiver physical functioning. For secondary outcomes (patient emotional or physical well-being; health economic effects), we found very little to no evidence for the effectiveness of caregiver support. We identified five ongoing trials.; Authors' Conclusions: The eight small-scale studies included employed different methodologies across different populations, with low certainty of evidence overall. It is not currently possible to draw reliable conclusions regarding the effectiveness of supportive interventions aimed at improving neuro-oncology caregiver well-being. More high-quality research is needed on support for family caregivers of people diagnosed, and living, with a brain or spinal cord tumour.
Objective: The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses. Method: One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods. Result Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity. Significance of results This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.
Objective: The aim of this study is to illustrate an evidence-based and theoretically informed mhealth resource (smartphone app) designed to provide communication support for informal cancer caregivers (friends or family members). Methods: An eight-step process was conducted: (a) review of existing print resources, (b) selection of theoretical framework for content development, (c) integration of stakeholder feedback and literacy assessment into an alpha print model, (d) review of existing mhealth resources, (e) development of prototype, (f) assessment of caregiver acceptability (n = 5), (g) assessment of quality and perceived impact by cancer providers (n = 26), and (h) acceptability testing with caregivers (n = 6). Results: Key stakeholders were integrated throughout development and user testing of this iOS smartphone app. The smartphone app consists of talking tips and resources for caregiver communication with the patient, family, far away family, and health care providers, as well as general information sharing features. Conclusions: This study demonstrates feasibility and development of an evidence-based and theory-driven mhealth resource to support caregiver communication about cancer. This is the first theory-driven mhealth application created to support the communication burden experienced by cancer caregivers. A larger study is needed to establish the efficacy of the app as an intervention for caregivers.
Context: Family caregivers constitute a critical component of the end-of-life care system with considerable cost to themselves. However, the joint association of terminally ill cancer patients' symptom distress and functional impairment with caregivers' subjective caregiving burden, quality of life (QOL), and depressive symptoms remains unknown. Objectives/methods: We used multivariate hierarchical linear modeling to simultaneously evaluate associations between five distinct patterns of conjoint symptom distress and functional impairment (symptom-functional states) and subjective caregiving burden, QOL, and depressive symptoms in a convenience sample of 215 family caregiver-patient dyads. Data were collected every 2 to 4 weeks over patients' last 6 months. Results: Caregivers of patients in the worst symptom-functional states (States 3-5) reported worse subjective caregiving burden and depressive symptoms than those in the best two states, but the three outcomes did not differ between caregivers of patients in State 3 and States 4-5. Caregivers of patients in State 5 endured worse subjective caregiving burden and QOL than those in State 4. Caregivers of patients in State 4 suffered worse subjective caregiving burden and depressive symptoms but comparable QOL to those in State 2. Conclusion: Patients' five distinct, conjoint symptom-functional states were significantly and differentially associated with their caregivers' worse subjective caregiving burden, QOL, and depressive symptoms while caring for patients over their last 6 months.
Purpose: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.; Methods: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.; Results: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.; Conclusions: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
Objective: Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.; Method: Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.Result A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the "color" of death, social and professional support, the moment of death, and grief and loss. Significance of results The analysis showed that caregiving may positively or negatively influence the bereavement process.
Purpose: The caregiver roles and responsibilities scale (CRRS) was developed to facilitate formal assessment of broad life impacts for informal (i.e. unpaid) caregivers to people with cancer. Here we report the development and initial validation.; Methods: The CRRS was developed from the thematic analysis of two interview studies with cancer patients (stage III-IV breast, gynaecological, lung or melanoma) and caregivers. In the evaluation studies, participants completed the CRRS alongside the Caregiver Quality of Life-Cancer, the main criterion measure for concurrent validity, and the WHOQOL-BREF for additional convergent validity data. Questionnaires were completed at baseline, 7-days and 2-months. Demographic data and patient characteristics were collected at baseline.; Results: Two-hundred and forty-five caregivers to people with stage I-IV breast, colorectal, gynaecological, head and neck, lung or renal cancer or melanoma completed the CRRS at least once. The final 41 core items selected comprised five subscales: Support and Impact, Lifestyle, Emotional Health and Wellbeing, Self-care and Financial Wellbeing as well as three standalone items. Missing data rate was low (0.6%); there were no ceiling or floor effects for total scores. Cronbach's alpha was 0.92 for the CRRS-41; 0.75-0.87 for the subscales. CRRS showed good test-retest reliability (ICC = 0.91), sensitivity to change and the predicted pattern of correlation with validation measures r = 0.75-0.89. The standalone 7-item jobs and careers subscale requires further validation.; Conclusions: Initial evaluation shows the CRRS has good validity and reliability and is a promising tool for the assessment of the effects of cancer and cancer treatment on the lives and wellbeing of informal caregivers.
OBJECTIVES: To determine the feasibility and acceptability of a validated electronic distress screening program for cancer caregivers. SAMPLE & SETTING: 17 informal caregivers presenting with a patient with cancer to an ambulatory cancer surgery center. METHODS & VARIABLES: Caregivers completed the CancerSupportSource®--Caregiver screening and a brief semistructured interview concerning the screening. RESULTS: Caregivers described the screening as straightforward and comprehensive. They endorsed concerns about their self-care needs but were most likely to request information or a referral for patient-focused concerns. Referrals generated from the program are likely viably addressed with existing supportive care resources. IMPLICATIONS FOR NURSING: Brief, caregiverfocused distress screening is perceived positively by caregivers. Caregivers indicated that they felt it validated the importance of their role and highlighted the hospital's efforts to continually improve care. This screening program may be particularly beneficial in ambulatory surgical centers to efficiently identify caregivers with concerns and provide a point of entry to remediate these concerns.
Aims and Objectives: To investigate the factors influencing caregiver burden in families of hospitalised lung cancer patients.; Background: Even though cancer symptoms among hospitalised lung cancer patients are serious and negatively affect caregivers, few research regarding to the factors of caregiver burden in hospitalised lung cancer patient has been carried out.; Design: Cross-sectional, descriptive and correlational study.; Methods: A convenience sample of hospitalised lung cancer patients (n = 107) was recruited from K University hospital in South Korea. Family depression, social support and caregiver burden as well as patients' lung cancer symptoms were measured using peer-reviewed and standard measurement tools. Descriptive statistics and parametric tests including stepwise regression were used to analyse the data. The STROBE guideline has been used to report this study.; Results: Caregiver burden among the families of hospitalised lung cancer patients was high; the regression model for caregiver burden among participants' families was significant. Depression among families was found to be the most influential factor for caregiver burden, followed by patients' lung cancer symptoms.; Conclusions: This study revealed that family caregivers' depression and patients' lung cancer symptoms were the most significant factors for families' caregiver burden. Future research should be conducted to identify the causes of depression among families of hospitalised lung cancer patients and develop management programmes to address such causes. It is also necessary to investigate the causes of increased caregiver burden that differentiate families of lung cancer patients from other cancer patients and provide education to help such families understand such causes.; Relevance To Clinical Practice: Findings from this study show that family's depression and lung cancer symptoms were significant factors for caregivers' burden. Hence, it is suggested for the healthcare providers to find for the best solution/strategies to reduce the caregiver's burden.
Objective: The primary aim of this investigation is to provide a novel dyadic test of a model of loneliness and health-related quality of life (HRQoL) in a sample of Latinas with breast cancer and their informal caregivers. Design: At baseline, dyads completed measures of loneliness and HRQoL. At a 3-month follow-up, they returned to complete the HRQoL measure. Associations were tested with the Actor–Partner Interdependence Model. Sample: About 234 Latinas with breast cancer diagnosed within the past year and their informal caregivers participated in the investigation. Findings: Loneliness was concurrently and negatively associated with HRQoL at baseline for both survivors and caregivers. Survivors' baseline loneliness, controlling for their baseline HRQoL, negatively predicted their HRQoL at 3 months. Survivors' HRQoL at baseline also predicted caregivers' HRQoL at 3 months. Conclusion: Loneliness is a risk factor for declines in HRQoL among cancer survivors. Their caregivers are also at risk for degraded HRQoL when the survivor experiences compromised HRQoL. Loneliness complicates the HRQoL of the cancer survivor–caregiver dyad.
Objective: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues. Methods: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR. Results: The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November to May 2018, there were 2789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis-specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient as and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty. Conclusion: The content and design of the PLWR appear acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups.
Objective: To explore family caregivers' emotional experiences while caring for patients with advanced cancer and navigating distressing information, awareness of dying, and difficult decisions. Methods: Qualitative descriptive study of semi-structured interviews with 92 bereaved caregivers of patients with advanced cancer. Interviews explored caregivers' experiences as patients transitioned out of active cancer treatment and neared the end of life. Results: Included in caregivers' characterization of this transition time were three particularly emotionally charged experiences. The first occurred when caregivers felt jolted into awareness that patients were dying.They were startled to realize that patients would die sooner than expected; some expressed frustration that they had not been adequately warned. In the second, caregivers felt conflicted when involved in decisions that pitted patients' preferences against what caregivers felt patients needed, resulting in ambivalence, guilt, and grief. Thirdly, caregivers who felt they did their best for patients expressed fulfillment and gratitude. Conclusion: Caregivers of patients with advanced cancer face unique, emotionally charged experiences that can lead to distress and affect care at the end of life. Practice Implications: Awareness of these situations may help oncology teams to provide sufficient guidance and support, partner with caregivers to clarify patients' needs, and deliver higher quality care.
Purpose/objectives: Young adult cancer patients undergo stress at a time when their primary source of psychosocial support may be changing. Our goal was to provide insight into the expectations young adult patients and their family caregivers for types of psychosocial support.; Research Approach: Semi-structured interviews.; Participants: Fifteen patients, 9 caregivers recruited from an AYA clinic. Methodological Approach: Thematic content analysis using the constant comparison method.; Findings: Two themes were identified. First, families described coordinating support around strengths to determine who would take on caregiving roles/tasks. Second, families described the importance of patient-caregiver relationship status/history in determining trust and expectations.; Interpretation: Family strengths and existing relationships can impact caregiving roles and expectations for families of young adult cancer patients. Implications for Psychosocial Providers: Cancer clinics may need to involve members of the psychosocial provider team to better understand the family dynamics of their patients and how these relate to support.
Background: Family caregivers play a key role in the lives of patients with multiple myeloma. However, very little is known about the impact that the disease (its diagnosis, course and prognosis) has on the main family caregiver.; Aim: To achieve a deeper understanding of the lived experience of individuals who are the primary caregiver of a relative with multiple myeloma and to shed light on their needs.; Design: Interpretative phenomenological study.; Setting and Participants: A total of 12 individuals who were the main family caregivers of a relative with multiple myeloma who was under outpatient follow-up at a cancer unit in Barcelona were recruited via purposive sampling until data saturation was reached. In semi-structured in-depth interviews, participants described their experiences of caring for their relative with multiple myeloma. Interviews were recorded, transcribed and analysed using ATLAS.ti v7.2. The seven steps proposed by Colaizzi were used for data analysis, and the relationships among emerging themes were examined.; Findings: Four main themes emerged: (a) a new life, adapting to the disease, (b) commitment to the patient, (c) the emotional sphere and (d) experiences in relation to the care and support received. The analysis also revealed a core overarching theme: uncertainty.; Conclusion: Primary family caregivers experienced intense uncertainty, and they described a strong need to air their feelings. Specific practical initiatives, targeting both health-related and logistical aspects of care, need to be developed in order to support family caregivers of myeloma patients.
Highlights • Influenza vaccination has limited efficacy in cancer patients. • Caregiver and family vaccination is recommended for high-risk patients. • Distance, age, and limited time decreased vaccine uptake in caregivers and family. • Efforts targeting vaccination for caregivers and family of cancer patients are needed.
Cancer patients are at increased risk for morbidity and mortality from seasonal influenza but are known to respond poorly to influenza vaccination. This single-center survey suggests that approximately one-third of cancer patients and their caregivers and family did not receive the vaccine in the prior season. Patients felt strongly that caregiver vaccination was important, whereas caregivers' decisions did not appear to be affected by the patients' disease.
Purpose: Given the complexities and risks of allogeneic HCT, patients and their family caregivers may experience elevated psychological distress, including symptoms of anxiety and depression, in anticipation of the procedure. Patients and caregivers also bring with them their pre-HCT experiences of diagnosis, prior treatment, and associated burdens, thus potentially compounding their acute distress. Identification of clinical, psychosocial, and sociodemographic factors related to pre-HCT distress would allow targeting of patients and caregivers who may require assistance during the HCT process. Methods: Consecutive patients (n = 111) and their caregivers (n = 110) completed measures of anxiety, depression, cancer distress, perceived threat, perceived control, self-efficacy, relationship quality, and physical quality of life in the week before HCT. Multivariate linear regression analysis was used to identify factors associated with patient and caregiver anxiety or depression, including disease type, donor type, and patient and caregiver sociodemographic, health-related, and psychosocial factors. Results: Family caregivers had higher levels of anxiety and depression symptoms than patients. Thirty percent of caregivers vs. 17% of patients met criteria for clinically significant anxiety and a lesser amount (5% for both) met criteria for clinically significant depression. Patient anxiety was related to younger age (b = - 0.22, p = 0.005) and greater cancer-related distress (b = 0.59, p < 0.001), while caregiver anxiety was related to lower self-efficacy (b = - 0.19, p = 0.011) and greater cancer-related distress (b = 0.58, p < 0.001). Similarly, patient depression was related to lower perceived control (b = - 0.17, p = 0.050), greater cancer-related distress (b = 0.34, p = 0.005), and lower physical functioning (b = - 0.26, p = 0.008), while caregiver depression was related to greater cancer-related distress (b = 0.46, p < 0.001). Conclusions: Family caregivers may be more emotionally vulnerable than patients before HCT and in need of additional assistance. Cancer-related distress was the strongest correlate of anxiety and depression in both patients and caregivers, suggesting that distress related to their cancer experience and its consequences plays a major role in their emotional functioning prior to HCT.
Background: Black men endure a disproportionate burden of morbidity and mortality related to prostate cancer (CaP). Increasingly family members are assuming the role of providing care and support to family members with chronic disease. Understanding the role and influence of the caregiver is a necessary part of developing resources to assist individuals learning to provide care.; Aim: The analysis aimed to explore CaP survivors' perceptions of the role and influence of family caregivers to better understand existing opportunities for improving experiences and outcomes for both the caregiver and the care receiver.; Design: Secondary analysis of qualitative interview transcripts. Data were analyzed to explore new inquiries related to CaP survivors' perceptions of family caregivers' role and influence at each stage of care. Content analysis was used to group data into established categories.; Data Source: Data included qualitative interview transcripts with 32 CaP survivors from the Florida Prostate Cancer Care and Survivorship Project.; Results: The role of the family caregiver is complex. Caregivers in this community seem to have a significant influence on behavior modification and cues to action for Black men with prostate cancer. According to the men in this group, caregivers functioned as normalizing agents, coordinating care and creating a new normal, throughout the various stages of care and survivorship.; Conclusions: Findings inform areas for future research to develop culturally tailored health promotion programs designed to improve outcomes and address the needs of both the family caregiver and the care receiver across the care continuum.
Background: Current international consensus is that 'early' referral to palliative care services improves cancer patient and family carer outcomes; however, in practice, these referrals are not routine. Uncertainty about the 'best time' to refer has been highlighted as contributing to care variation. Previous work has identified clear disease-specific transition points in the cancer illness which heralded subsequent poor prognosis (less than 6 months) and which, we contest, represent times when palliative care should be routinely introduced as a standardised approach, if not already in place, to maximise patient and carer benefit. This protocol details a trial that will test the feasibility of a novel standardised outpatient model of early palliative care [Standardised Early Palliative Care (STEP Care)] for advanced cancer patients and their family carers, with referrals occurring at the defined disease-specific evidence-based transition points.The aims of this study are to (1) determine the feasibility of conducting a definitive phase 3 randomised trial, which evaluates effectiveness of STEP Care (compared to usual best practice cancer care) for patients with advanced breast or prostate cancer or high grade glioma; (2) examine preliminary efficacy of STEP Care on patient/family caregiver outcomes, including quality of life, mood, symptoms, illness understanding and overall survival; (3) document the impact of STEP Care on quality of end-of-life care; and (4) evaluate the timing of palliative care introduction according to patients, families and health care professionals.; Methods: Phase 2, multicenter, open-label, parallel-arm, randomised controlled trial (RCT) of STEP Care plus standard best practice cancer care versus standard best practice cancer care alone.; Discussion: The research will test the feasibility of standardised palliative care introduction based on illness transitions and provide guidance on subsequent development of phase 3 studies of integration. This will directly address the current uncertainty about palliative care timing.; Trial registration: Australian New Zealand Clinical Trials Registry ACTRN12617000534381.
Context/objectives: We sought to characterize patterns of social support types (i.e., emotional, informational, appraisal, and instrumental) within the caregiver/spouse, family, and spiritual/religious contexts for patients diagnosed with cancer.; Methods: Focus groups were conducted with mixed groups of patients with cancer and caregiver/family members at a Midwestern comprehensive cancer center. Participants completed brief demographic questionnaires. Focus groups were moderated using semistructured interviews. The 90-minute discussions were audio-recorded, transcribed, and uploaded into NVivo for analysis using a deductive approach based on four social support types and the constant comparative method.; Results: Four focus groups were conducted (n = 25). The average age was 58.4 years (SD = 15.1, range 26.0-76.0). Patient participants reported different malignancy types, including breast, gynecologic, skin, oral, and Non-Hodgkin's lymphoma. Participants acknowledged changes within their social network across the cancer journey. Overall, the caregiver/spouse fulfilled all types of social support. Spirituality/religion was often discussed as a form of appraisal social support. Fellow survivors were sources of informational support. Across groups, nondirective/emotional support was most frequently mentioned.; Conclusion: Cancer is a unique experience, and understanding the importance of social support, including types of social support needed from different contexts to best meet the needs of the patient, may promote optimal, patient-centered care across the cancer trajectory.
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.
Informal care is a substantial source of support for people with cancer. However, various studies have predicted its disappearance in the near future. The aim of this study is to analyse the catastrophic effect resulting from the substitution of informal care with formal care in patients with blood cancer throughout the different stages of treatment. A total of 139 haematological neoplasm patients who underwent stem cell transplantation in Spain, completed a longitudinal questionnaire according to the three phases of treatment between 2012 and 2013. The economic value of informal care was estimated using proxy good, opportunity cost, and contingent valuation methods. Catastrophic health expenditure measures with thresholds ranging from 5 to 100% were used to value the financial burden derived from substitution. A total of 88.5% of patients reported having received informal care. In 85.37%, 80.49%, and 33.33% of households, more than 40% of their monthly income would have to be devoted to the replacement with formal care, with monthly amounts of €2105.22, €1790.86, and €1221.94 added to the 40% in the short, medium, and long-term, respectively (proxy good method, value = 9 €/h). Informal caregivers are a structural support for patients with blood cancer, assuming significant care time and societal costs. The substitution of informal care with formal care would be financially unaffordable by the families of people with blood cancer.
Aims and objectives: This study aimed to develop knowledge on the experiences of male partners of women with cervical cancer during and after the illness. We explore men's experiences of becoming caregivers as well as how the illness trajectory affects or has affected the relationship. Background: Receiving a cancer diagnosis has a significant impact on the lives of both the cancer patient and their family members. However, studies of male partners' experiences with cancer patients are scarce. Additionally, cervical cancer and its impact on male caregivers are less explored than how other cancer diagnoses impact male caregivers. The theoretical concept of caring masculinities is helpful to interpret men's experiences as caregivers and partners. Design: The study employs a qualitative design with semi‐structured interviews with six men/partners recruited through the gynaecological section at a hospital. COREQ reporting guidelines have been applied. Findings: Based on our analyses, we find that men's experiences of being caregivers and partners of women treated for cervical cancer are multifaceted, comprising emotional and practical aspects. However, three main findings stand out as particularly significant for men in the context of cervical cancer: loneliness, an altered sexual relationship and shared feelings of vulnerability. Conclusions: The men describe an interdependence in the relationship with the women but also how the relationships have been seriously altered, particularly when it comes to sexuality. These findings resonate with hegemonic as well as caring masculinities. Relevance to practice: Complex issues of intimacy and sexuality should be a pivotal element in educating future healthcare professionals. We strongly suggest that issues such as dealing with masculinity and caregiving roles should be on the agenda and reflected upon in teaching and supervising in clinical practice. A broader approach to sexual health and relationships is needed in the patient–clinician relationships, including information about human papillomavirus.
Purpose: The purpose of this study was to describe family caregivers' perspectives of the final month of life of patients with advanced cancer, particularly whether and how chemotherapy was discontinued and the effect of clinical decision-making on family caregivers' perceptions of the patient's experience of care at the end of life (EOL). Methods: Qualitative descriptive design using semi-structured interviews collected from 92 family caregivers of patients with end-stage cancer enrolled in a randomized clinical trial. We used a phased approach to data analysis including open coding, focused coding, and within and across analyses. Results: We identified three patterns of transitions characterizing the shift away from active cancer treatment: (1) "We Pretty Much Knew," characterized by explicit discussions about EOL care, seemingly shared understanding about prognosis and seamless transitions from disease-oriented treatment to comfort-oriented care, (2) "Beating the Odds," characterized by explicit discussions about disease-directed treatment and EOL care options, but no shared understanding about prognosis and often chaotic transitions to EOL care, and (3) "Left to Die," characterized by no recall of EOL discussions with transitions to EOL occurring in crisis. Conclusions: As communication and palliative care interventions continue to develop to improve care for patients with advanced cancer, it is imperative that we take into account the different patterns of transition and their unique patient and caregiver needs near the end of life. Our findings reveal considerable, and potentially unwarranted, variation in transitions from active treatment to death.
Background: Family caregivers (FCGs) of adult cancer patients (ACPs) are typically involved in the entire trajectory of cancer disease, from diagnosis to survivorship or end of life. In developing countries, FCGs are more intensely involved in the process of providing care to the hospitalized ACPs because of lack of adequate cancer care resources. Active performance of tasks to meet the needs of ACPs in the hospital setting is likely to elicit significant caregiver burden.; Objective: The aim of this study was to explore the tasks performed and the caregiver burden experienced by FCGs of hospitalized ACPs in a sub-Saharan country.; Methods: A cross-sectional descriptive design was used to collect data from 168 FCGs of ACPs. The Caregiver Burden Scale was used to measure burden.; Results: The most common cancer diagnosis in male and female ACPs was Kaposi's sarcoma (32.1%) and breast cancer (37.9%), respectively. The tasks regularly performed by most FCGs for the ACPs were providing emotional support (79.8%), feeding (68.5%), transporting to other appointments (62.5%), preparing meals (55%), and giving medications (46.4%). Most FCGs (75%) were experiencing severe or very severe general caregiver burden. The dimensions of caregiver burden that were most severely impacted were general strain (70.6%), disappointment (85.8%), and isolation (72%). Predictors of caregiver burden are reported.; Conclusion: Family caregivers of hospitalized ACPs experience severe caregiver burden. The main forms of burden experienced were general strain, disappointment, and isolation.; Implications For Practice: Cancer care services in developing countries should be strengthened with services that address FCGs' emotional needs and human resources to curtail the strain imposed on FCGs.
BACKGROUND: More than 16 million men in the United States are acting in the role of family caregiver. Men are usually viewed as not being caring simply because they provide care differently than women. However, this is not the case. OBJECTIVES: This article explores male caregiving from the perspective of family and professional roles. METHODS: A review of the literature related to men in the caregiving role was conducted. This review included only men providing care to a family member and was limited to men caring for an adult. FINDINGS: The main traits of male caregivers were defined as masculinization of caregiving behaviors, social support needs, and caregiver role strain/emotional aspects of caring. Men in the caregiving role must be supported. Education related to how men provide care is needed. Hands-on education should also be provided to men in the family caregiving role.
Objective: Thoracic radiotherapy (TRT) may result in toxicities that are associated with performance declines and poor quality of life (QOL) for patients and their family caregivers. The purpose of this randomized controlled trial was to establish feasibility and preliminary efficacy of a dyadic yoga (DY) intervention as a supportive care strategy. Methods: Patients with stage I to III non-small cell lung or esophageal cancer undergoing TRT and their caregivers (N = 26 dyads) were randomized to a 15-session DY or a waitlist control (WLC) group. Prior to TRT and randomization, both groups completed measures of QOL (SF-36) and depressive symptoms (CES-D). Patients also completed the 6-minute walk test (6MWT). Dyads were reassessed on the last day of TRT and 3 months later. Results: A priori feasibility criteria were met regarding consent (68%), adherence (80%), and retention (81%) rates. Controlling for relevant covariates, multilevel modeling analyses revealed significant clinical improvements for patients in the DY group compared with the WLC group for the 6MWT (means: DY = 473 m vs WLC = 397 m, d = 1.19) and SF-36 physical function (means: DY = 38.77 vs WLC = 30.88; d = .66) and social function (means: DY = 45.24 vs WLC = 39.09; d = .44) across the follow-up period. Caregivers in the DY group reported marginally clinically significant improvements in SF-36 vitality (means: DY = 53.05 vs WLC = 48.84; d = .39) and role performance (means: DY = 52.78 vs WLC = 48.59; d = .51) relative to those in the WLC group. Conclusions: This novel supportive care program appears to be feasible and beneficial for patients undergoing TRT and their caregivers. A larger efficacy trial with a more stringent control group is warranted.
Aims: Very little works have been reported on the issues of burden perceived by the caregivers of head-and-neck cancer (HNC) patients. Job of the caregiver is complex, and it limits their social, psychological, and economical well-being. Our study aims at assessing caregivers' strain during radiation therapy (RT) of HNC patients using the Modified Caregivers' Strain Index (MCSI) Scale. Materials and Methods: In this single-institutional cross-sectional study, we interviewed caregivers of HNC patients undergoing curative RT. Along with MCSI, a 13-point questionnaire, which was self-administered in local languages; we collected baseline data of patients and their caregivers. Scores were evaluated. For each question, score varies 0–2. Higher the Median Hazard Score (H Score), more was the level of the strain. Results: We interviewed 24 participants. Response rate was 100%. About 45.8% of patients were in Stage III. The median age of caregivers was 40 years; 58.3% were male, 79.2% were employed, and 58.3% were belonging to the upper-lower class. Nearly 66.6% were spouse of the patients and 70.8% belong to joint family. In MCSI score analysis, H Score was 22 (range 14) with a minimum score of 14 and maximum score of 26. The most common score was 20. About 65.1% of participants responded Score 2 in all aspects of strain indices. Travel time had a significant positive association with total H Scores (Pearson's r = 0.663, P < 0.05). Conclusion: Majority of the caregivers was suffering from severe physical, personal, emotional, and social/financial strain. This issue must be addressed in holistic cancer care.
Objective: To identify, characterise and explain common and specific features of the experience of treatment burden in relation to patients living with lung cancer or chronic obstructive pulmonary disease (COPD) and their informal caregivers.; Design: Systematic review and interpretative synthesis of primary qualitative studies. Papers were analysed using constant comparison and directed qualitative content analysis.; Data Sources: CINAHL, EMBASE, MEDLINE, PsychINFO, Scopus and Web of Science searched from January 2006 to December 2015.; Eligibility Criteria For Selecting Studies: Primary qualitative studies in English where participants were patients with lung cancer or COPD and/or their informal caregivers, aged >18 years that contain descriptions of experiences of interacting with health or social care in Europe, North America and Australia.; Results: We identified 127 articles with 1769 patients and 491 informal caregivers. Patients, informal caregivers and healthcare professionals (HCPs) acknowledged lung cancer's existential threat. Managing treatment workload was a priority in this condition, characterised by a short illness trajectory. Treatment workload was generally well supported by an immediacy of access to healthcare systems and a clear treatment pathway. Conversely, patients, informal caregivers and HCPs typically did not recognise or understand COPD. Treatment workload was balanced with the demands of everyday life throughout a characteristically long illness trajectory. Consequently, treatment workload was complicated by difficulties of access to, and navigation of, healthcare systems, and a fragmented treatment pathway. In both conditions, patients' capacity to manage workload was enhanced by the support of family and friends, peers and HCPs and diminished by illness/smoking-related stigma and social isolation.; Conclusion: This interpretative synthesis has affirmed significant differences in treatment workload between lung cancer and COPD. It has demonstrated the importance of the capacity patients have to manage their workload in both conditions. This suggests a workload which exceeds capacity may be a primary driver of treatment burden.; Prospero Registration Number: CRD42016048191.
Family caregivers face multiple challenges when caring for patients with oral cancer at home. Understanding the difficulties they face may assist health professionals to better organise and provide support for family caregivers of oral cancer patients. The aim of this study was to describe the caregivers' primary tasks and the difficulties they encounter when caring for a family member with oral cancer. This qualitative study included a purposeful sample of 22 primary family caregivers ranging in age from 25 to 71 years old. The researchers used face-to-face, semi-structured and tape-recorded interviews to collect data and employed qualitative content analysis to elicit caregiving-related themes. Six task-related themes and associated challenges were identified. These included managing the patient's nutritional issues, investigating and making decisions about patient care, managing sudden and unpredictable changes in the patient's condition, managing emotional distress, adjusting their attitudes towards patient care, and seeking resources. Family caregivers handle such essential tasks when they care for patients in home settings and they face specific challenges related to them. This study identified several challenges related to each task. From the outset, healthcare providers should actively offer caregiving information and strategies. Health professionals can incorporate strategies for supporting caregivers' ability to carry out these tasks into their treatment model and can help caregivers manage difficulties that can impede them from doing so.
Hematopoietic cell transplant (HCT) can cause significant distress in patients and their informal caregivers. Despite advances in reduced-intensity conditioning and supportive care, few recent studies have reported rates of clinically significant post-traumatic stress disorder (PTSD) symptomatology. Goals of the current study were to examine rates of PTSD and distress in patients and caregivers and to identify sociodemographic and clinical risk factors for PTSD. As part of an annual survivorship survey, 2157 HCT recipients and their caregivers were mailed self-report measures of PTSD and distress. Patients also completed self-report measures of sociodemographic information (eg, age, sex, employment status). Clinical variables (eg, time since transplant, transplant type) were captured in the transplant database. A total of 691 recipients (56% age 60 or above at the time of survey, 47% women, median 10.1 years post-HCT) and 333 caregivers provided PTSD data and were included in the current analyses. More caregivers reported PTSD (6.6%) than patients (3.3%; P =.02). Patients or caregivers who had PTSD reported significantly higher distress related to uncertainty, family strain, medical demands, finances, identity, and health burden (P <.0001) compared with those without PTSD. Patient but not caregiver PTSD was associated with more recent transplant (P =.01 and P =.16, respectively). Rates of PTSD are relatively low in long-term survivors of HCT and their caregivers. Nevertheless, results are consistent with other studies of cancer caregiving suggesting that caregivers often experience greater distress than patients. Timely referral to psychosocial services should be offered to both HCT recipients and caregivers reporting symptoms of PTSD.
Walsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience and psychological well-being among Chinese breast cancer survivors and their caregivers. Therefore, this study aimed to examine the direct and indirect relationships between family resilience, breast cancer survivors' post-traumatic growth (PTG), quality of life (QOL), and their principal caregivers' caregiver burden. A total of 108 breast cancer survivors/principal caregivers pairs completed a cross-sectional questionnaire survey in a comprehensive cancer of a public hospital in Shandong Province, China. The structural equation modelling (SEM) results showed that family resilience had direct and indirect effects on QOL and caregiver burden, and it was positively related to the PTG of the survivors. The survivors' PTG was positively related to their QOL, and their QOL was negatively associated with caregiver burden. Therefore, a better understanding of how family resilience contributes to PTG and QOL of the survivors and caregiver burden could help clinicians tailor interventions to enhance interventions aimed at improving both survivors' and caregivers' well-being.
Background: Strong family bonds are part of the Indonesian culture. Family members of patients with cancer are intensively involved in caring, also in hospitals. This is considered "normal": a societal and religious obligation. The values underpinning this might influence families' perception of it.; Aim: To explore and model experiences of family caregivers of patients with cancer in Indonesia in performing caregiving tasks.; Design: A grounded theory approach was applied. The constant comparative method was used for data analysis and a paradigm scheme was employed for developing a theoretical model.; Setting/participants:: The study was conducted in three hospitals in Indonesia. The participants were family caregivers of patients with cancer.; Results: A total of 24 family caregivers participated. "Belief in caregiving" appeared to be the core phenomenon. This reflects the caregivers' conviction that providing care is an important value, which becomes the will power and source of their strength. It is a combination of spiritual and religious, value and motivation to care, and is influenced by contextual factors. It influences actions: coping mechanisms, sharing tasks, and making sacrifices. Social support influences the process of the core phenomenon and the actions of the caregivers. Both positive and negative experiences were identified.; Conclusion: We developed a model of family caregivers' experiences from a country where caregiving is deeply rooted in religion and culture. The model might also be useful in other cultural contexts. Our model shows that the spiritual domain, not only for the patient but also for the family caregivers, should be structurally addressed by professional caregivers.
Adult cancer patients (ACPs) in resource-limited settings disproportionately suffer from inadequate pain control despite advancements in pain management. Family caregivers (FCGs) can support optimal pain control for ACPs in these settings if they are knowledgeable and confident about the needed care. However, the status of FCGs' knowledge and self-efficacy (SE) for pain management in developing countries is not well established. Purpose: To assess the FCGs' knowledge and SE levels for pain management among ACPs while at home in a resource-limited setting. Methods: Using a questionnaire that comprised a Family Pain Questionnaire and Chronic Pain Self-efficacy Scale, data were collected from 284 FCGs of ACPs receiving care from two cancer care centres. Results: The FCGs had moderate knowledge (mean = 41.70 ± 14.1) and SE (mean = 795.95 ± 301.3) levels for pain management at home for ACPs. Majority of the FCGs had low knowledge (52.1%), but expressed higher SE (52.5%). Poor self-rated health among FCGs was significantly associated with low knowledge levels (OR = 1.75; 95% CI 1.024-2.978, p = 0.041). SE was significantly associated with perceiving a low impact of caregiving on health (OR = 1.55; 95% CI 1.074-2.239, p = 0.019), hours of caregiving per week (OR = 0.52; 95% CI 0.315-0.854; p = 0.01) and receiving organisational support (OR = 0.388; 95% CI 0.222-0.679; p = 0.001). Conclusion: The results show a need for deliberate interventions to enhance FCG knowledge and SE for pain management at home as one of the ways of improving cancer pain management in resource-limited settings.
PURPOSE: We examined associations between caregiving intensity and mental health among cancer caregivers at the population level and potential moderation by an actionable intervention target, support service needs. METHODS: Behavioral Risk Factors Surveillance System survey data (2015) from caregivers of adult patients with cancer was analyzed. Caregiving intensity included hours per week caregiving (high, > 20; low, ≤ 20) and caregiving duration (long, > 2 years; short, ≤ 2 years). Mental health was reported as number of mentally unhealthy days (MUDs) in the past 30. Support service needs comprised caregiving classes, service access, support groups, counseling, and respite care. Multivariable linear regression models were performed adjusting for sociodemographics and sampling weights. RESULTS: A total of 1,831 caregivers were included in the study, representing approximately 1.1 million cancer caregivers in the 18 US states, distributed with the following intensity: 122 (8.3%) caregivers reported care at high hours/long duration, 213 (13.1%) high hours/short duration, 329 (18.4%) low hours/long duration, and 910 (60.2%) low hours/short duration. Mean MUDs was 6 (SE, 0.5). The highest reported unmet service need was help with service access (48.4%). Higher caregiving intensity and support service need were associated with more MUDs (P <.05), with a significant interaction (P =.02) between caregiving intensity and unmet support service needs. High hour/long duration caregivers reporting any unmet needs had a mean of 15 versus 8 MUDs for those with no unmet needs. CONCLUSION: High-intensity cancer caregiving was associated with poor mental health, especially for those reporting support service needs. Developing strategies to optimize support service provision for high-intensity cancer caregivers is warranted.
Purpose: The primary objective of this study was to quantify cancer family caregiver (FCG) quality of life (QOL) in a Southern Albanian population and to determine whether differences exist between 4 domains of QOL (physical, psychological, social, and spiritual). This study also sought to compare QOL in our cohort to QOL in historical studies that used the same survey instrument, and to examine correlations between demographic characteristics and QOL to identify any high-risk groups.; Methods: A sample of 40 FCGs was recruited at the Mary Potter Palliative Care Clinic in Korçe, Albania. Each participant completed the City of Hope Quality of Life (Family Version), a validated 37-question instrument that measures caregiver well-being in 4 domains: physical, psychological, social, and spiritual well-being.; Results: There were no significant differences between the composite scores of the 4 QOL domains in our study. However, there were differences when comparing self-reported QOL between domains ("Rate your overall physical/psychological/social/spiritual well-being"). The QOL measured in our study was significantly lower than in 3 studies from the United States that used the same questionnaire. There were no significant correlations between demographic groups and QOL.; Conclusions: This study examines the impact that the paucity of palliative services has on the QOL of Albanian cancer FCGs. Although there were no domains of QOL or demographic groups identified in our study that were faring significantly worse than others, the poor overall QOL provides further evidence to support the continued development of palliative services for both patients and family members in Albania.
BACKGROUND/OBJECTIVES: Caregivers of older adults with cancer assist both with cancer care and other health issues, which may make them vulnerable to consequences of caregiving. Hospitalization may represent a time when a caregiver's ability to provide care at home is exceeded. We sought to characterize caregivers of hospitalized older adults with cancer, determine their quality of life (QOL), and identify factors associated with caregiver QOL. METHODS: Patients (n = 100), aged 65 years and older, with an unplanned hospitalization and their caregivers were included. Caregivers completed a questionnaire about their health, social support, caregiving relationship, QOL (Caregiver Quality of Life Index‐Cancer [CQOLC] tool), and patient function. Patient medical history was obtained via chart review. The association between patient, caregiving, and caregiver factors and CQOLC was determined using multivariate linear regression. RESULTS: Most patients (73%) had metastatic/advanced disease, and 71% received treatment for their cancer within 30 days of hospitalization. Median Karnofsky Performance Status (KPS) was 60%, and 89% required help with instrumental activities of daily living, as reported by caregivers. Median caregiver age was 65 years (range = 29‐84 years). The majority (60%) had no major comorbidities and rated their health as excellent/good (79%), though 22% reported worsening health due to caregiving. Caregivers had a median Mental Health Inventory‐18 score of 70 (range = 0–97), a median Medical Outcomes Study (MOS)‐social activity score of 56 (range = 0–87.5), and a median MOS‐Social Support Survey score of 68 (range = 0–100). Caregivers provided a median of 35 hours of care per week (range = 0‐168 hours of care per week). Mean CQOLC was 84.6 ± 23.5. Lower caregiver QOL was associated with poorer caregiver mental health, less social support, and poorer patient KPS (P < .05). CONCLUSION: Caregivers of hospitalized older adults with cancer are older but generally in good health. Those with poorer mental health, less social support, and caring for patients with poorer performance status are more likely to experience lower QOL.
Purpose: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs.; Methods: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs.; Results: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed.; Conclusions: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.
Background: Self-care systems for early-stage specialist palliative care for cancer patients and their family caregivers have received much attention recently. Resonant breathing is an established method for maximizing heart rate variability (HRV), but it has not been implemented for home self-care. Objective: We aimed to examine the usefulness and ease of implementation for family caregivers to administer resonant breathing using a portable device at home. Design: We divided caregivers into two groups—a home self-care group and a control group—and we conducted a randomized open-label study, with rate of change in HRV being the primary outcome. Setting/Subjects: We administered HRV biofeedback (HRV-BF) using resonant breathing to 54 family caregivers who felt burdened by their nursing care responsibilities. Results: Among the self-care group, 92.6% of participants completed the study in their homes; 28 days after intervention initiation, the resonant breathing implementation rate at home was 86.1%. There was an interaction between time course and grouping in our HRV comparisons: the change rate in the home self-care group was higher during HRV-BF than before HRV-BF. Conclusions: Because family caregivers in our study learned to quickly administer resonant breathing using a portable device at home, resonant breathing improved rapidly, along with autonomic nerve function and quality of life.
The aim of this study was to explore the experiences of Iranian family caregivers with regard to the burden of caregiving. This is in the context of illuminating and identifying the experiences of family members from different contextual perspectives. In this qualitative study, purposive sampling was conducted in 2016. Data were collected using semistructured interviews and were analyzed using content analysis. Data analysis identified 4 categories and 8 subcategories: (1) burnout (physical problems and psychoemotional stress), (2) role conflict (balancing caring roles and family responsibilities; failure in professional or educational roles), (3) health system tensions (inadequate support from health professionals; ignorance of family members in health structure), and (4) social challenges of cancer (economic burden; taboo of cancer). In conclusion, nurses need to provide individualized support and counseling that address the sources of burden. This highlights the benefit of training health care professionals to provide culturally sensitive support based on family caregivers' needs and circumstances.
PURPOSE: Family caregivers are instrumental to patients with gynecologic cancer and can be deeply affected by the demands of caregiving. Our aims were as follows: (1) increase awareness of unmet needs of caregivers and (2) identify and prioritize the unmet needs of caregivers and essential support services to be provided in gynecologic cancer centers. METHODS: From July 2017 to June 2018, a 16-person steering committee and 40 stakeholders, including caregivers, patients, and clinicians, participated in a modified Delphi approach to generate, review, and prioritize a set of essential elements for caregiver support. Stakeholders prioritized caregiver needs and brainstormed, discussed, and prioritized essential support services to meet those needs, using three rounds of a consensus-building protocol. Basic descriptive statistics were performed to feed means and rankings back to stakeholders before each round. RESULTS: The top three caregiver needs were as follows: (1) to obtain information about their loved one's cancer, (2) how to provide support and comfort to their loved one, and (3) how to maintain their own emotional health and well-being. Fifteen essential elements of support for caregivers of patients with gynecologic cancer were identified and ranged from elements currently attainable (eg, information on managing symptoms, skilled-care training, a point person to help navigate the system) to more aspirational elements (eg, integrative services to promote caregiver well-being). CONCLUSION: To ensure comprehensive quality care, clinicians and health care providers should strive to provide caregivers with the identified essential elements of support. Health care settings should work to incorporate caregiver needs into cancer care delivery.
Aims Numerous healthcare decisions are faced by persons with advanced cancer from diagnosis to end-of-life. The family caregiver role in these decisions has focused on being a surrogate decision-maker, however, little is known about the caregiver’s role in supporting upstream patient decision-making. We aimed to describe the roles of family caregivers in assisting community-dwelling advanced cancer patients with healthcare decision-making across settings and contexts. Methods Qualitative study using one-on-one, semi-structured interviews with community-dwelling persons with metastatic cancer (n = 18) and their family caregivers (n = 20) recruited from outpatient oncology clinics of a large tertiary care academic medical center, between October 2016 and October 2017. Transcribed interviews were analyzed using a thematic analysis approach. Findings Caregivers averaged 56 years and were mostly female (95%), white (85%), and the patient’s partner/spouse (70%). Patients averaged 58 years and were mostly male (67%) in self-reported “fair” or “poor” health (50%) with genitourinary (33%), lung (17%), and hematologic (17%) cancers. Themes describing family member roles in supporting patients’ upstream healthcare decision-making were: 1) seeking information about the cancer, its trajectory, and treatments options; 2) ensuring family and healthcare clinicians have a common understanding of the patient’s treatment plan and condition; 3) facilitating discussions with patients about their values and the framing of their illness; 5) posing “what if” scenarios about current and potential future health states and treatments; 6) addressing collateral decisions (e.g., work arrangements) resulting from medical treatment choices; 6) originating healthcare-related decision points, including decisions about seeking emergency care; and 7) making healthcare decisions for patients who preferred to delegate healthcare decisions to their family caregivers. Conclusions These findings highlight a previously unreported and understudied set of critical decision partnering roles that cancer family caregivers play in patient healthcare decision-making. Optimizing these roles may represent novel targets for early decision support interventions for family caregivers.
Purpose: Pain is a multifactorial and subjective experience. Psychological and social factors can modulate it. This study analyzed whether and how prolonged cancer pain is related to the social-relational environment's characteristics. Specifically, we investigated whether the caregiver's emotional support, his/her compassion ability or, on the contrary, his/her personal distress, associates with the patient's pain level. Methods: The sample consisted of 38 cancer patients suffering from pain and 38 family caregivers. The patients completed the McGill Pain Questionnaire (MPQ), the Balanced Emotional Empathy Scale (BEES) referred to caregiver, and an interview concerning the patient's perception of the caregiver's compassion level. Caregivers completed the distress thermometer (DT), the BEES, and an interview assessment of their compassion level. Results: Caregiver's distress level correlated with patient's pain intensity (r = .389; p = .028). Exploratory linear regression confirmed this association (R2 = .151; F (1, 30) = 5.33; p = .028; β = 0.389). The number of problems reported by caregivers correlated with the patients' pain level (r = .375; p = .020), which was verified in a regression analysis (R2 = .140; F (1, 36) = 5.88; p = .020; β = 0.375). In particular, the caregiver's amount of emotional problems was related to patient's pain level (r = .427; p = .007); this result was reaffirmed in a regression (R2 = .182; F (1, 36) = 8.03; p = .007; β = 0.427). Conclusions: Our results show an association between social suffering, as indicated by the caregiver's emotional distress and the patient's physical pain. The results also highlight high distress levels and emotional problems among caregivers. The work emphasizes the need of a bio-psychosocial approach in managing cancer pain, along with the necessity to find effective interventions to fight emotional distress in family caregivers. The recovery of the caregivers' emotional resources could have beneficial implications on the patients' pain.
Background: Previous studies on the effectiveness of psychological interventions in oncology mainly used quantitative measures and no study was conducted with regard to both caregivers and patients. Aim: This study evaluates the effectiveness of psychoeducational support groups, both for women with breast cancer, and for their informal caregivers through the use of quantitative and qualitative measures. Methods: A longitudinal design was used comparing two psychoeducational support groups with other two groups in a standard care control condition. Participants were 28 women with a diagnosis of breast cancer in the care of a hospital in Northern Italy, and 21 family caregivers. The quantitative data were collected by Cognitive Behavioral Assessment for Outcome Evaluation (CBA-OE) and the qualitative data through the use of semi-structured interviews. Results: The statistical analysis showed a significant change attributable to the psychological intervention that proves the effectiveness of such an intervention in the patients' and caregivers' group. The qualitative analysis allowed us to interpret the behavioral and psychological profile emerging from CBA-OE, by considering the subjective experience of the treatment groups. The group experience offered affective, relational and informative support, and allowed participants to create a network and to feel understood and reassured. Conclusion: The results suggest the usefulness of psychoeducational support groups for women with breast cancer and for their caregivers. The value of this kind of intervention is not only at an individual level but also at a systems level, and family involvement ensures the best positive outcomes.
Background: The quality of life of family caregivers of patients with advanced cancers is an important concern in oncology care. Yet, there are few suitable measurement scales available for use in Asia. This study aims to develop and evaluate a locally derived measurement scale in English and Chinese to assess the quality of life of family caregivers of patients with advanced cancers in Singapore.; Methods: Scale contents were generated from qualitative research that solicited inputs from family caregivers. Six hundred and twelve family caregivers of patients with advanced cancers were recruited, of whom 304 and 308 chose to complete the English and Chinese versions of the quality of life scale, respectively. A follow-up survey was conducted for test-retest reliability assessment. Analyses began with pooling all observations, followed by analyses stratified by language samples and ethnic groups (among English-speaking participants).; Results: Factor analysis identified 5 domains of quality of life. The Root Mean Square Error of Approximation was 0.041 and Comparative Fit Index was 0.948. Convergent and divergent validity of the total and domain scores were demonstrated in terms of correlation with the Brief Assessment Scale for Caregiver and its sub-scales and a measure of financial concern; known-group validity was demonstrated in terms of differences between groups defined by patient's performance status. Internal consistency (Cronbach's alpha) of the total and domain scores ranged from 0.86 to 0.93. Test-retest reliability (intraclass correlation coefficient) ranged from 0.74 to 0.89. Separate analyses of the English- and Chinese-speaking samples and ethnic groups gave similar results.; Conclusion: A new, validated, multi-domain quality of life measurement scale for caregivers of patients with advanced cancers that is developed with inputs from family caregivers is now available in two languages. We call this the Singapore Caregiver Quality Of Life Scale (SCQOLS).
Objectives Caregivers of terminal patients often report a higher prevalence of unmet needs than cancer survivors. However, very few interventions have been carried out to support caregivers of patients in advanced stages, and, in most cases, they have not been rigorously designed and evaluated. The ultimate aim of this research was to obtain specific information about the sociodemographic characteristics, the different types of care provided, the symptoms due to burdens, the impact of caring on the quality of life, and the unmet needs of informal caregivers of dependent patients with cancer. This is to design effective intervention programs that can be implemented from the hospital setting itself and therefore, to improve their quality of life and prevent the deterioration of their health. Study design A cross-sectional design and survey methodology were used for descriptive purposes. Methods The sample was composed of 132 informal caregivers of dependent patients with cancer, from a public hospital in Valencia, Spain, who were identified through the patient database of the oncology service, over the 4-month data collection period. Self-administered questionnaires were combined with personal interviews: Interview Protocol for the main caregiver, Questionnaire ICUB97, and survey of hospital quality. Results The most frequently provided types of care included the following: keeping the patient company, acting as an intermediary between them and healthcare workers, and helping them to do basic daily life activities. The main negative consequences caregivers reported were the following: feeling more tired, having less free time, changing their daily routines, and having fewer social relationships/interactions and various emotional and physical symptoms. Many of the needs of informal caregivers were not being met: resolution of doubts about illness, training in the care they should provide to the patient, and psychological help. Conclusions Recommendations for the development of effective intervention programs are offered: increasing the psychological services provided in oncology units, training medical staff in communication skills, facilitating access to information about the disease through different means, training for informal caregivers in care techniques, coping and communication skills, self-care, and organization of time. On the one hand, implementing effective intervention programs for informal caregivers will reduce the amount withdrawing from their care duties and on the other hand, the proliferation of what are known as secondary patients. Highlights • Caregiving women were more prevalent than men, with an average age of 45 years, and a medium socioeconomic status. • The most frequently provided cares were helping patients in basic activities and mediating between them and medical staff. • The main negative consequences for caregivers were changing daily routines and various emotional and physical symptoms. • The main unmet need of caregivers was specific information and training about the care they should provide to the patient.
Background: Little is known about the place of death of patients with cancer in Eastern Mediterranean countries including Egypt, where palliative care is underdeveloped. Identifying the preferred place of death (PPoD) is important for the development of appropriate palliative care models in these countries. Objectives: To know the PPoD of Egyptian patients with incurable cancer and their family caregivers (FCGs) and to determine the factors that may impact their preferences. Methods: An observational cross-sectional study that included 301 dyads of patients with incurable cancer and one of their FCGs. A questionnaire was designed to collect data about the characteristics of patients and FCGs as well as their preferences. Results: The majority of dyads (272/301, 90.4%) answered the PPoD question. Home was the PPoD in 93% of patients and 90.1% of FCGs (P = .218). The congruence between patients' and FCGs' PPoD was 92.7% (κ = 0.526). In multivariate analysis, poorer performance status (Eastern Cooperative Oncology Group 3 or 4) and full employment of FCGs associated significantly with patients' preference to die in hospital (odds ratio [OR] = 3.015 [95% confidence interval [CI]: 1.004-9.054], P = .049 and OR = 4.402 [95% CI: 1.561-12.417], P = .005, respectively), while poorer performance status and nonreferral to the palliative medicine unit were associated with FCGs' preference of hospital death (OR = 2.705 [95% CI: 1.105-6.626], P = .029 and OR = 2.537 [95% CI: 1.082-5.948], P = .032, respectively). Conclusions: The results of the current study suggest that home is the PPoD for the vast majority of Egyptian patients with incurable cancer and their FCGs. Palliative care interventions that promote home death of patients with incurable cancer are needed in Egypt.
Cancer care delivery is being shaped by growing numbers of cancer survivors coupled with provider shortages, rising costs of primary treatment and follow-up care, significant survivorship health disparities, increased reliance on informal caregivers, and the transition to value-based care. These factors create a compelling need to provide coordinated, comprehensive, personalized care for cancer survivors in ways that meet survivors' and caregivers' unique needs while minimizing the impact of provider shortages and controlling costs for health care systems, survivors, and families. The authors reviewed research identifying and addressing the needs of cancer survivors and caregivers and used this synthesis to create a set of critical priorities for care delivery, research, education, and policy to equitably improve survivor outcomes and support caregivers. Efforts are needed in 3 priority areas: 1) implementing routine assessment of survivors' needs and functioning and caregivers' needs; 2) facilitating personalized, tailored, information and referrals from diagnosis onward for both survivors and caregivers, shifting services from point of care to point of need wherever possible; and 3) disseminating and supporting the implementation of new care methods and interventions.
Background: Although palliative care is expanding globally for patients with serious illness, Turkey has not had widespread integration of early concurrent oncology palliative care. Hence, adapting and testing models of concurrent oncology palliative care for Turkish patients is imperative. Furthermore, it is critical that these care models also address the needs of family caregivers.; Objective: To assess needs and elicit suggestions that would inform the adaptation of the ENABLE (Educate, Nurture, Advise, Before Life Ends) evidence-based early palliative care model for Turkish family caregivers of older persons with cancer.; Methods: Formative evaluation study. Semi-structured interviews were conducted with 25 primary family caregivers of older individuals with cancer. Thematic analyses yielded themes in four domains: meaning of caregiving, effect of caregiving, education and consulting needs, and preferences about the delivery of the ENABLE model of palliative care support.; Results: Caregivers described the impact of the cancer on their daily lives and responsibilities in the areas of physical, psychological, work, social, and family life. Caregivers emphasized their needs for information about symptoms, physical care, cancer pathology, and prognosis. Regarding the ENABLE model of early concurrent palliative care, participants wanted encounters to be in-person with educational material support that was simple and focused on disease information (prognosis, medication, handling emergency situations), psychological support, caring, nutrition, and acquiring community services.; Conclusion: Themes from this study will be used to modify the ENABLE intervention protocol for future pilot and efficacy testing in Turkish caregivers.
Objective Informal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. Methods We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction. Results The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one‐third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered. Conclusions Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.
Objective: Carers of people with cancer provide uncompensated care that is often physically, emotionally, and financially demanding, which results in neglect of their own health. This study's objective was to conduct an economic evaluation following a randomised control trial (RCT) involving a proactive telephone outcall intervention aimed at improving health outcomes among carers of cancer patients. Methods: The trial was a single-blind, multicentre, RCT conducted across four Australian health services, comprising three outcalls from trained Cancer Council 131120 (Cancer Council telephone and information support services) nurses compared with three phone call reminders of the availability of 131120 services (control group). Outcalls consisted of telephone contacts to the caregivers initiated by the Cancer Council nurses. The primary trial outcome was reduced carer burden. Health care resource use was measured using a resource use questionnaire (RUQ), and costs were presented in 2013 $(AUS). Quality-adjusted-life-years (QALYs) were also used as health outcomes. An incremental cost-effectiveness ratio (ICER) was calculated, with bootstrapping used to quantify sampling variability. A $50 000 per QALY-gained willingness-to-pay threshold was used. Sensitivity analyses were conducted. Results: Results showed that the total mean QALYs-gained were higher (0.02 QALYs, P = 0.01) in the control group, and total mean costs were lower in the control group ($477, P < 0.001) over the trial duration. The intervention group was dominated by the control group. Results were robust to sensitivity analyses. Conclusions: Results suggest policy makers should not adopt this intervention into routine health care in its current form. Further research into the efficacy and cost-effectiveness of telephone-based interventions for carers is required.
Background There is limited evidence to guide best approaches to supportive care delivery to patients with high-grade glioma. I-CoPE (Information, Coordination, Preparation and Emotional) is a structured supportive care approach for people with newly diagnosed high-grade glioma and their family carers. Delivered by a cancer care coordinator, I-CoPE consists of (1) staged information, (2) regular screening for needs, (3) communication and coordination, and (4) family carer engagement. This pilot study tested acceptability and preliminary effectiveness of I-CoPE, delivered over 3 transitions in the illness course, for people newly diagnosed with high-grade glioma and their carers. Methods I-CoPE was delivered at the identified transition times (at diagnosis, following the diagnostic hospitalization, following radiotherapy), with associated data collection (enrollment, 2 weeks, 12 weeks). Outcomes of interest included: Acceptability/feasibility (primary); quality of life; needs for support; disease-related information needs; and carer preparedness to care (secondary). Descriptive statistics were used to assess acceptability outcomes, while patient and carer outcomes were assessed using repeated measures ANOVA. Results Thirty-Two patients (53% male, mean age 60) and 31 carers (42% male) participated. I-CoPE was highly acceptable: 86% of eligible patients enrolled, and of these 88% completed the study. Following I-CoPE patients and carers reported fewer information needs (P <.001), while carers reported fewer unmet supportive care needs (P <.01) and increased preparedness to care (P =.04). Quality of life did not significantly change. Conclusion A model of supportive care delivered based upon illness transitions is feasible, acceptable, and suggests preliminary efficacy in some areas. Formal randomized studies are now required.
OBJECTIVES: To elucidate the importance of mutual effects within dyads by examining the contribution of depression on quality of life (QOL) in patients with advanced cancer and their family caregivers (FCs). SAMPLE & SET TING : 716 patients with advanced cancer paired with their FCs at two large, private not-for-profit hospices. METHODS & VARIABLES: A descriptive, cross-sectional design with the baseline data of a randomized hospice clinical trial was used. Structural equation modeling helped examine four hypotheses by integrating the features of the Actor-Partner Interdependence Model. Variables included QOL and depression. RESULTS: Depression in patients with cancer and their FCs exhibited significant actor effects on an individual's QOL after controlling for the partner effects. Among the spousal pairs, depression in FCs exhibited a positive partner effect on the functional well-being of patients with cancer, indicating that depressive symptoms occurring in FCs may increase patients' functional well-being. IMPLICATIONS FOR NURSING: This study suggests the importance of consistent assessment in emotional well-being for dyads with cancer because their concerns may be transmitted to each other.
Objective In response to the well‐documented need for evidence‐based cancer caregiver support, we examined the feasibility of problem‐solving therapy for family caregivers of cancer patients receiving outpatient palliative care and investigated the impact of problem‐solving therapy on family caregivers' anxiety, depression, and quality of life. Methods We conducted a feasibility study of a structured problem‐solving therapy intervention delivered to family caregivers of cancer patients receiving outpatient palliative care from an academic health center in the Midwestern United States. Participants (N = 83) were randomly assigned to receive usual care or usual care plus a problem‐solving therapy intervention, which was delivered over three sessions via web‐based videoconferencing or telephone. Descriptive statistics were used to determine feasibility relative to recruitment, retention, and fidelity to core intervention components. Outcome data were analyzed using ordinary least squares multiple regression. Results Problem‐solving therapy for family caregivers of patients with cancer was found to be highly feasible in the outpatient palliative care setting. Caregivers who received problem‐solving therapy reported less anxiety than those who received only usual care (P = 0.03). No statistically significant differences were observed for caregiver depression (P = 0.07) or quality of life (P = 0.06). Conclusions Problem‐solving therapy is a feasible and promising approach to reducing cancer family caregivers' anxiety in the outpatient palliative care setting. Further testing in multiple sites is recommended.
This prospective, longitudinal study explored changes in and modifiable factors associated with high self‐perceived burden to others (SPB) among a convenience sample of 276 dyads of terminally ill Taiwanese cancer patients and their family caregivers over patients’ last year of life. High SPB was evaluated by scores ≥20 on the Self‐Perceived Burden Scale. Modifiable factors of high SPB included factors related to both patients (i.e., symptom distress, functional dependence and coping capacity) and caregivers (i.e., caregiving burden, depressive symptoms and quality of life [QOL]). Modifiable factors of high SPB were identified by multivariate logistic regression modelling with the generalised estimating equation while controlling for demographic factors. We found that patients tended to experience high SPB if they had more symptom distress. In contrast, the likelihood of high SPB was significantly lower if patients had greater coping capacity and their caregivers reported better QOL. High SPB was not associated with patients’ functional dependence, caregivers’ caregiving burden and depressive‐symptom level while providing end‐of‐life (EOL) care, and time proximity to death. Healthcare professionals may alleviate terminally ill cancer patients’ high SPB at EOL through palliative care that adequately manages patients’ physical symptom distress, enhances patients’ coping capacity and improves family caregivers’ QOL.
Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients’ and family caregivers’ experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety‐five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.
Purpose: Understanding the concept of a "good death" is crucial to end-of-life care, but our current understanding of what constitutes a good death is insufficient. Here, we investigated the components of a good death that are important to the general population, cancer patients, their families, and physicians.; Methods: We conducted a stratified nationwide cross-sectional survey of cancer patients and their families from 12 hospitals, physicians from 12 hospitals and the Korean Medical Association, and the general population, investigating their attitudes toward 10 good-death components.; Findings: Three components-"not be a burden to the family," "presence of family," and "resolve unfinished business"-were considered the most important components by more than 2/3 of each of the three groups, and an additional three components-"freedom from pain," "feel that life was meaningful," and "at peace with God"-were considered important by all but the physicians group. Physicians considered "feel life was meaningful," "presence of family," and "not be a burden to family" as the core components of a good death, with "freedom from pain" as an additional component. "Treatment choices' followed, "finances in order," "mentally aware," and "die at home" were found to be the least important components among all four groups.; Conclusion: While families strongly agreed that "presence of family" and "not be a burden to family" were important to a good death, the importance of other factors differed between the groups. Health care providers should attempt to discern each patient's view of a good death.
Background: This study assessed the health related quality of life of family caregivers (FCs) of leukemia patients by using the health utility scores derived from the EuroQol five-dimensional (EQ-5D) questionnaire. Methods: A cross-sectional survey was undertaken on 306 family caregivers of leukemia patients to assess their health utility using the EQ-5D-3L. Participants were recruited from three hospitals in China's Heilongjiang province. The health utility scores of the participants were estimated based on the Chinese EQ-5D-3L value set and compared with those of the local general population. Factors predicting the health utility scores were identified through the Kruskal-Wallis analysis of variance and median regression analyses. Results: FCs had lower health utility scores than the general population (p < 0.001). The participants with a lower socioeconomic status had lower utility scores and reported more problems than those with a higher socio-economic status. Better family function and higher social support were associated with higher health utility scores. The type of leukemia, household income, and social support are significant predictors of health utility scores of the FCs. Chronic lymphocytic leukemia, low socio-economic status, and low social support are associated with lower health utility scores of the FCs. Conclusions: FCs for leukemia patients have lower health utility scores than the local general population, as measured by the EQ-5D-3L. There is an immediate need to address the health concerns of FCs, who play an important role in the Chinese health care system.
Background: Family caregivers have a significant role in Thai healthcare, taking on responsibilities of health professionals. The purpose of this research was to explore Thai family caregivers' experiences of providing palliative cancer care. Methods: This qualitative study took a phenomenological approach. In-depth interviews were conducted with 14 family caregivers aged 33–72 years in a regional hospital in the north of Thailand. The data was analysed using Colaizzi's phenomenological approach. Rigour was established by following Lincoln and Guba's guidelines for qualitative research. Findings: The experiences of Thai family caregivers providing palliative cancer care could be categorised into four themes: caring as a team; caring as supportive care; taking care to keep patients happy; and caring for the self while looking after a relative. Conclusion: Health professionals can support family caregivers to deliver the best care for cancer patients and to help them decrease their stress. This study discusses ways how this may be done.
Purpose: Traveling for cancer care is difficult as patients might be suffering from the side effects of treatment, need to cover additional costs, and face disruption of daily life. The aim of this review was to synthesize the evidence on travel needs and experiences during cancer treatment from the point of view of patients and their families.; Methods: This is a systematic review of the literature. The PRISMA statement was used to guide the reporting of the methods and findings. We searched for peer-reviewed articles in MEDLINE, CINAHL PLUS, and Web of Science and selected articles based on the following criteria: focused on patients and their families; presented findings from empirical studies; and examined travel and transport experiences for cancer screening, treatment, and related care. The MMAT was used to assess the quality of the studies.; Results: A total of 16 articles were included in the review. Most of the studies used a qualitative design, were carried out in high-income countries and were conducted more than 10 years ago. Several problems were reported regarding travel and relocation: social and physical demands of transport, travel, and relocation; life disruption and loss of daily routines; financial impact; and anxieties and support needs when returning home.; Conclusions: Patients and carers consistently reported lack of support when traveling, relocating, and returning home. Future research needs to explore patient experiences under current treatment protocols and healthcare delivery models, in a wider range of geographical contexts, and different stages of the patient pathway.
Background: Pain is one of cancer patients' most frequent and distressing symptoms; however, analgesics' side effects often increase symptom burden. Further, with the home rapidly becoming the primary cancer care setting, family caregivers (FCs) commonly play central roles in patients' pain self-management, but with little or no preparation. One US-tested intervention, the PRO-SELF© Plus Pain Control Program (PCP), designed to support cancer outpatients and their FCs in pain self-management, is currently being tested in the Swiss multi-centre PEINCA study. The current PEINCA-FAM study is a sub-study of PEINCA. The aims of PEINCA-FAM are: a) to test the efficacy of the adapted German PRO-SELF © Plus PCP to reduce side effects of analgesics; b) to enhance patients'/FCs' knowledge regarding cancer pain; and c) to explore FCs' involvement in patients' pain self-management. Methods: This mixed methods project combines a multi-centre randomized controlled clinical trial with qualitative data collection techniques and includes 210 patients recruited from three oncology outpatient clinics. FCs involved in patients' pain self-management are also invited to participate. After baseline evaluation, eligible participants are randomized to a 6-week intervention group and a control group. Both groups complete a daily pain and symptom diary. Intervention group patients/FCs receive the weekly psychoeducational PRO-SELF© Plus PCP interventions; control group patients receive usual care. After completing the six-week study procedures, a subsample of 7–10 patients/FCs per group and hospital (N = 42–60) will be interviewed regarding their pain management experiences. Data collection will take place from April 2016 until December 2018. An intent-to-treat analysis and generalized linear mixed models will be applied. Qualitative data will be analysed by using interpretive description. Quantitative and qualitative results will be combined within a mixed method matrix. Discussion: In clinical practice, specially trained oncology nurses in outpatient clinics could apply the intervention to reduce side effects and to enhance patients'/FCs' self-efficacy and pain management knowledge. Trial registration: The PEINCA study is registered in the Clinical Trials.gov site (code: NCT02713919, 08 March 2016).
Objective: To understand the spiritual needs of the patients' family caregiver under Oncology palliative care. Method: A descriptive, qualitative study with 20 family caregivers of patients hospitalized in an Oncology palliative unit. The data were collected through a phenomenological interview, and analyzed by the method of Amadeo Giorgi supported in the Merleau-Ponty's Phenomenology of Perception. Results: The categories were unveiled: "Spirituality as a foundation for life"; "Spiritual needs sublimated by the family caregiver"; and "Care expected by the nurse". Conclusion: Family caregivers appropriate spirituality as a coping strategy and meeting the purpose and meaning of the moment experienced. It is profitable for the nurse to contemplate the spiritual needs of the caregiver in order to provide a guided assistance in the humanization of care and comprehensive care. Therefore, there is a need for new studies that address this dimension to the family caregiver in the field of Oncology, since this care is incipient by the nurse.
Purpose: The goals of this study were to assess the feasibility of a web-based application-electronic Social Network Assessment Program (eSNAP)-to automate the capture and visualization of family caregiver social network data of neuro-oncology patients. Methods: Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center. Participants completed baseline questionnaires on a laptop in clinic assessing demographic characteristics. After baseline, participants were randomly assigned to either create a social network visualization using eSNAP (intervention) or to usual care (control) condition. Those who used eSNAP provided likeability/usability data. All participants were asked to complete follow-up questionnaires at 3 and 6 weeks after baseline to determine feasibility of longitudinal study. Results: We recruited 40 caregivers of patients with primary malignant brain tumor to participate in this study. Participants rated eSNAP usability and likeability highly, indicating that eSNAP would help them consider their available social support. At 3 weeks, 90% of participants completed questionnaires and 82.5% completed questionnaires at 6 weeks. Conclusions: There is a need to encourage family caregivers of patients with primary malignant brain tumor to engage their existing social network resources to help alleviate caregiver burden. Our findings suggest that our web-based application to address this issue is feasible to implement with high usability and likeability. This pilot study identified minor changes to the intervention to improve effectiveness and has implications for future research in this understudied population.Trial Registration: clinicaltrials.gov, protocol number NCT03026699.
Introduction: Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention.; Methods: Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire.; Results: FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.; Conclusions: With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.;
Background: Family interventions targeting patients and/or informal caregivers are beneficial, but few have been integrated in oncology clinical care. Understanding diverse stakeholder perspectives may inform implementation and dissemination efforts.; Methods: We are currently conducting a randomized controlled trial of CareSTEPS, a telephone-based intervention for caregivers of advanced lung cancer patients. CareSTEPS seeks to improve caregiver and patient self-care behaviors, quality of life, and satisfaction with care. With an eye toward integrating CareSTEPS into clinical care, semi-structured interviews were conducted with 7 experts in integrated care [practice thought leaders] and 26 individuals representing different oncology stakeholder groups (i.e., potential end users of CareSTEPS including counselors, social workers, nurse specialists, and psychologists) [N = 13], decision-makers, including physicians and administrators [N = 6], and key dissemination partners, including representatives from cancer and caregiving advocacy groups [N = 7]). Questions focused on existing caregiver support services, barriers to integrating care for caregivers in routine patient care, and possible models for clinical uptake and dissemination. Interviews were transcribed and analyzed using directed content analysis.; Results: Stakeholders noted a mismatch between caregiver needs and services offered, and expressed interest in broader service offerings. Barriers for integrating caregiver support into clinical care included inadequate funding, lack of interdisciplinary training among providers, and concern that research-based interventions are often not flexible enough to roll out into clinical practice. To secure buy-in, stakeholders noted the importance of evaluating intervention cost, cost savings, and revenue generation. Possible avenues for dissemination, through bottom-up and top-down (e.g., policy change) approaches, were also discussed.; Conclusions: Findings highlight the importance of evaluating outcomes important to diverse oncology stakeholder groups to speed translation of research into practice. They also suggest that pragmatic trials are needed that allow for flexibility in the delivery of family interventions and that consider the resource limitations of clinical care.
Background: Cutaneous T‐cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. Objectives: To explore the experiences of bereaved family caregivers of patients with CTCL. Methods: Single, semi‐structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra‐regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. Results: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person‐centred vs. organization‐centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi‐professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub‐themes within each theme provide more detail about caregiver experiences. Conclusions: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL.
Summary: Cutaneous T‐cell lymphomas (CTCL) are rare types of skin cancer. Skin may develop tumours or ulcers. Sometimes these may cover quite large areas and feel itchy or uncomfortable. Internal body parts may be affected in more advanced disease. Only a few people are diagnosed each year (8 per million), so most GPs do not meet people with this disease. This study from the U.K. aimed to find out about the experiences of family or close friends of people who had died because of the disease (not all people with this disease die of it). Relatives of 11 patients with CTCL who had died were interviewed, four months or more after the death. The themes from what they said are described. Family members gave vivid descriptions of how the illness changed the appearance of their relative. They spoke of how difficult it was to look after someone with very damaged skin. They described the many different things they had to do to care for their relative both in hospital and at home. Some patients had frequently been in and out of hospital. Some caregivers expected them to come home each time and so had not felt prepared when their relative died. Several caregivers described how upsetting it was to see how illness affected their relative before they died. The authors say that family caregivers should be seen as part of the care team looking after the patient. They recommend that carers' needs for practical and emotional support and information should be considered during each patient's illness. Support for carers should also be offered following the death of their relative.
Background Caregivers of breast cancer survivors experience various types of burden, which in turn is linked to patients' physical and psychological status. Family resilience might be able to decrease caregiver burden and facilitate survivors' individual resilience, and individual resilience might be related to caregiver burden. Nevertheless, these relationships have not yet been confirmed. Objective To determine the relationships between family resilience, breast cancer survivors' resilience, and principal caregivers' caregiver burden, as well as determine whether breast cancer survivors' individual resilience plays a mediating role in the relationship between family resilience and caregiver burden. Design Cross-sectional study design. Setting The comprehensive cancer center of a public hospital in Shandong Province, China. Participants The sample comprised 108 dyads of early-stage breast cancer survivors and their principal caregivers. Methods The principal caregivers completed the Shortened Chinese Version of the Family Resilience Assessment Scale and the Chinese Version of the Zarit Caregiver Burden Interview, while the breast cancer survivors completed the 10-item Chinese version of the Connor-Davidson Resilience Scale and provided their sociodemographic information. The mediating effect of individual resilience was estimated using the bootstrap method via IBM SPSS Amos 21.0. Results Caregiver burden was significantly negatively associated with both family resilience and breast cancer survivors' individual resilience (both p <.01). Furthermore, individual resilience mediated the relationship between family resilience and caregiver burden (b = −0.052; 95% confidence interval: −.412, −.036). Conclusions The findings suggest that both family resilience and breast cancer survivors' individual resilience may ease caregiver burden among the principal caregivers of breast cancer survivors, and family resilience tends to promote the survivors' individual resilience. Therefore, family resilience and survivors' individual resilience should be enhanced for breast cancer survivors and their family to ease the principal caregivers' caregiver burden.
Background: Cancer and its treatment can result in psychological distress in both adults with cancer and in their family caregivers. This psychological distress acts as a significant adverse factor in patient-caregiver dyads. The study purposes included: (i) to assess anxiety and depression in adults with cancer and their family caregivers, and examine the dyadic relationship of anxiety and depression in patient-caregiver dyads; (ii) to investigate factors that may modify these relationships; and (iii) to explore the impact of anxiety and depression on patient-caregiver dyad quality of life (QOL).; Methods: This was a secondary analysis of a cross-sectional study. Participants consisted of 641 patient-caregiver dyads. Participants completed a survey assessing adults with cancer-related, family caregiver-related, and family-related variables using a demographic/clinical information sheet. In addition, anxiety/depression and QOL were assessed by using the Chinese version of the Hospital Anxiety and Depression Scale and SF-12 respectively. Data were analyzed by using descriptive statistics, Pearson correlations, subgroup analysis, and the Actor-Partner Interdependence Model.; Results: Nearly one-third of participants had experienced anxiety and depression. Adults with cancer and family caregivers experienced a similar degree of anxiety and depression. Correlations (r) of anxiety and depression between patient-caregiver dyads ranged from 0.25 to 0.32. Various factors influencing the anxiety and depression relationship between patient-caregiver dyads were identified, including adults with cancer-related (e.g., age, gender, marital status, level of being informed about the disease, different types of cancer and treatment), family caregiver-related (e.g., being the spouse of a patient, duration in their role as a family caregiver, and amount of time spent on caregiving each day), and family-related (family relationship pre- and post-cancer, financial burden on the family due to cancer treatment) variables. To some extent, both actor and partner effects were identified for anxiety and depression on the QOL of patient-caregiver dyads.; Conclusions: Study findings call attention to anxiety and depression, as well as related factors, in patient-caregiver dyads. The underlined essential components and focus of intervention, which will be developed to decrease psychological distress and improve QOL in patient-caregiver dyads, included individual characteristics of patient-caregiver dyads, family relationship, and anxiety and depression in their counterparts.;
Aim: To examine caregiver burden of caregivers of patients with colorectal cancer. Method: This is a prospective, cross-sectional, descriptive study. The sample consisted of 162 patients who underwent colorectal cancer surgery between January 1 and June 30, 2015 in the General Surgery ward of Dokuz Eylül University Hospital. Data were collected using the Caregiver Strain Index (CSI) and the Your Reactions to Helping Your Family Member scale (RHFM), which is a component of the Family Care Inventory. Descriptive statistics, Mann-Whitney U, Kruskal-Wallis test, and Pearson correlation analysis were used in data analysis. Results: The mean age of the patients was 58.5±12.7 years and the mean age of the caregivers was 51.8±10.8 years. Of the patients, 51.2% were male, 38.9% (n=63) underwent low anterior resection, and 66.7% had a stoma. Fifty-eight percent of the caregivers were female. The caregivers' mean CSI score was 3.61±3.52 and mean RHFM score was 50.50±9.78. There were statistically significant correlations between caregiving burden and patients' age and stoma status (p<0.05). Patient gender and surgery type did not affect caregiver burden (p>0.05). Caregiver age, duration of care (days), and receiving caregiving assistance were associated with caregiver burden (p<0.05). However, the caregivers' gender, marital status, and education level did not affect caregiver burden (p>0.05). Presence of stoma, caregiver gender, duration of care, and caregiver relationship to patient were found to affect RHFM score (p<0.05). Conclusion: Caregivers of colorectal cancer patients seem to have greater caregiving burden in the postoperative period. For this reason, it is important to provide patients self-care training and encouragement to facilitate their self-care. It will also be beneficial to support caregivers with scheduled education in topics such as stoma care and through support group initiatives
Objectives: This study evaluated the change in the concerns, wellbeing, and lifestyle behaviors of informal caregivers of people with cancer attending Penny Brohn UK's Living Well Course (LWC), a self-management education intervention. Design: A pre–postcourse design collected self-reported quantitative and qualitative data from informal caregivers attending a LWC. Setting/Location: Penny Brohn UK is a United Kingdom-based charity (not-for-profit) providing specialist integrative, whole person support, free of charge, to people affected by cancer. Subjects: Informal caregivers taking part in a Penny Brohn UK LWC between June 2014 and May 2016 attending alongside the person with cancer. Intervention: The LWC is a structured 15 h, multimodal group self-management educational course, designed to help people affected by cancer learn tools and techniques to help build resilience. Trained facilitators deliver LWCs to around 12 people with various types and stages of cancer and their informal caregivers. Outcome measures: Measure Yourself Concern and Wellbeing (MYCaW) completed precourse and at 6 weeks postcourse; and bespoke 6-week follow-up Patient Reported Experience Measure. Results: Four hundred eighty informal caregivers attended a LWC June 2014 to May 2016. One hundred eighteen completed a 6-week follow-up MYCaW: MYCaW Concerns 1 and 2 showed statistically significant improvements (p < 0.0001), there was no significant improvement in wellbeing. Informal caregivers' most reported concerns relating to themselves were psychological and emotional issues (59%). The primary concern of the caregiver for the care recipient was related to the physical health of the person with cancer (40%). Eighty-seven percent of responding informal caregivers stated that the LWC enabled health self-management. Conclusions: The LWC was followed by an improvement in informal caregivers' concerns, and increased self-management of their own health needs. More studies, with larger sample size, are needed to explore if better self-management by informal caregivers may also lead to improvements in patients' health and wellbeing.
Purpose: To investigate the status of caregiver burden and to identify the factors related to caregiver burden among Chinese family caregivers of patients with lung cancer.; Methods: A cross-sectional design with convenience sampling was used in this study. Participants (N = 116) from the oncology inpatient ward at one teaching hospital in Chengdu were recruited from June 2015 to June 2016. The following measurement tools were used: a demographic questionnaire, the Social Support Rating Scale, the General Self-efficacy Scale, and the Zarit Burden Interview. Multiple linear regression analysis was used to identify factors associated with caregiver burden.; Results: The average ZBI score was 38.8 (SD = 13.4). Patient age (p < 0.01), medical and other types of insurance (p < 0.01), disclosure of the diagnosis to patients (p < 0.01), and social support of the caregiver (p < 0.05) were related to caregiver burden. Fifty-three percent of the variance in caregivers' burden was explained by these identified factors.; Conclusions: Caregiver burden was higher among Chinese caregivers of lung cancer patients compared with the results of previous studies. Patient age, medical and other types of insurance, disclosure of cancer diagnosis to the patient, and caregivers' social support are factors associated with caregiver burden. The results suggest that social support, comprehensive healthcare insurance initiatives, and culture-based communication skill training are potential areas for future intervention.
In this study, 16 family caregivers of patients with lymphoma were interviewed on their changing perceptions of hope. The changing process starts from diagnosis to the present treatment state. We found that the changing perception of hope can be divided into three stages: the stage of generalized hope focusing merely on treatment and passive hope focusing on harm-avoidance, the stage of specified hope and active hope aiming at comfort-seeking, and the stage of multifaceted hope. Family caregivers’ understanding of the past experience of and new information on the disease are the foundation of the perception of hope. The perception of hope in cancer patients’ family caregivers develops from “therapeutic hope” to “psychosocial hope,” shifting from “consequential hope” to “procedural hope.”
Background: Today, most cancer treatment is given in outpatient treatment centers. In this process, family members who are responsible for the primary care of the patient have difficulty coping with the side effects of the disease and the treatment. This can change the reactions of family members to care giving, affecting the physical and psychological health of family members. Aim: This study has been carried to determine the relationship between caregiving burden and quality of life (QOL) of family caregivers of outpatients receiving chemotherapy. Method: This descriptive and cross-sectionalstudy was carried out 120 patients' family caregivers applying to the outpatient center of university to receive chemotherapy. The data were collected through "Personal Information Form", "Caregiver's Stress Index'', " Cancer Patients' Caregiver Family Members' Life Quality Scale (CQOLC) " and by the researchers. Result: It has been determined that the family caregivers being female, having a low level of education, having a job, having lower incomes than their expenses, giving care for their spouses and giving care 21 hours and over daily have the worst QOL. All the family caregivers giving care reported that they live psychological distress while looking after the patient. Due to chemotherapy, all the family members providing care stated to have difficulties while handling the side effects occurred in patients. It was found that 30.8% of the family members could not cope with nausea, 29.1% with fatigue, 24.2% with loss of appetite, and 19.2% with vomiting. Conclusion: By reducing the maintenance burden of family member caregivers, it can be considered that the QOL of both family members and patients may increase.
Background: Concerns about death may alienate and negatively impact communication among family members of patients with life-threatening illness. Little is known about the relationship of death anxiety to quality of life in cancer family caregivers. Objective: The aim of this study was to examine relationships between sociodemographic and patient-related factors, social support, and religiosity with death anxiety and quality of life in Iranian cancer family caregivers. Methods: Three hundred thirty family caregivers from an urban regional cancer institute in Iran participated in a descriptive-correlational study that incorporated sociodemographic surveys and validated death anxiety (Templer Scale) and Quality of life (Family Version) instruments. Results: Caregivers reported moderate levels of death anxiety and decrements in QOL. Quality of life was inversely associated with death anxiety (r = -0.30, P .001). Female caregivers who were daughters had higher death anxiety, whereas male caregivers who were sons reported higher quality of life. Conclusions: Death anxiety is associated with lowered quality of life in Iranian family caregivers. Multiple factors may impact death anxiety and quality of life relevant to the socioreligious milieu. Implications for Practice: Addressing concerns that increase death anxiety may improve quality of life and lower stress associated with adapting to the family caregiver role. Caregiving responsibilities, added to challenges associated with personal, family, and professional life, impact multiple aspects of QOL. As nurses increasingly care for patients from diverse backgrounds, it becomes more imperative that support for family caregivers that promotes psychological adaptation and quality of life is needed. References
Purpose/Objectives: To describe and examine the relationship between caregiver burden and the affective disorders anxiety and depression in caregivers of patients with brain metastases. Design: Cross-sectional, descriptive, correlational. Setting: Moores Cancer Center at the University of California, San Diego.Sample: 56 family caregivers of patients with brain metastases from solid tumors at other primary sites. Methods: Self-administered survey. Main Research Variables: Caregiver burden, anxiety, and depression. Findings: With the exception of caregiver esteem, no statistically significant relationships were noted between impact on schedule, a dimension of caregiver burden, and screening positive for affective disorders. Conclusions: Findings from this study support previous reports indicating that the odds of having anxiety and depressive symptoms are greater in family caregivers who report higher levels of caregiver burden. Implications for Nursing: The identification and management of caregiver burden are important considerations for a comprehensive cancer care program. Addressing the needs of the cancer caregiver, who is at heightened risk for various psychological, physical, financial, and social problems, is increasingly vital.
This qualitative study was conducted to investigate the spiritual challenges faced by Iranian family caregivers of patients with cancer. The findings showed, 2 main themes, including "spiritual crisis" and "spiritual coherence", and 6 classes, including "spiritual distress", "disappointment," "faith and trust in God," "praying," "inner peace," and "transcendence."
The risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39-93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. 'Reaching a diagnosis of cancer' describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. 'Adjusting to the cancer diagnosis when living with dementia' outlines a variety of emotional and practical responses to receiving news of the diagnosis. 'Weighing up the cancer treatment options' highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. 'Undergoing cancer treatment' shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.
With more and more individuals surviving cancer it is important to estimate the economic burden survivorship places on these individuals, and also on their friends, family, carers and the wider society. This paper provides a review of current estimates of the cost of living with and surviving cancer. Few studies have provided an all-encompassing estimate of the burden. A range of methodologies to estimate the direct health care costs, direct non-health care costs, productivity loss and informal care costs of surviving cancer are described. Additionally an often overlooked burden that on survivors' and caregivers' quality of life is also discussed. This paper hopes to encourage more research on the economic burden of cancer survivorship to aid policy makers in their resource allocation decisions and help establish an ongoing research agenda.
Background: Caring for a family member with advanced cancer at home is demanding as the ill family member is likely to have complex physical and emotional needs. There is a paucity of studies on the experience of home family caregivers of people with advanced cancer in the Asian region. Objective: The aim of this study was to describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore. Methods: This was a qualitative study; data were collected by semistructured interviews and analyzed using content analysis. A purposive sample of 19 family caregivers who were taking care of a family member with advanced cancer were recruited from home hospice care services in Singapore. Results: Most of the caregivers were female (n = 14), ranging in age from 21 to 64 years (mean, 46.4 [SD, 10.5] years). Four themes were generated from the data: (1) caregiving challenges, (2) negative emotions, (3) ways of coping, and (4) positive gains of caregiving. Conclusions: This study generated insights into the challenges, emotions, and coping of Asian family caregivers caring for patients with advanced cancer. Such understanding could help in developing appropriate intervention for caregivers to reduce their burden and stress. Implications for Practice: Caregivers require knowledge on resolving family conflicts and about communicating and enhancing closeness with the ill family member. Support from healthcare professionals is essential even if caregivers have support from family members and friends; nurses can make conscious efforts to show concern for caregivers as well as for patients.
Backgrounds Breast cancer is a global threat to all women, especially those having close relatives with breast cancer. Women who were caregivers to relatives with breast cancer are more vulnerable to stress caused by the perception of heightened risk of cancer. Because health measures and breast health are affected by cultural beliefs and social status, information about breast cancer should consider the cultural beliefs and values of the society. Objectives This study explored the experiences of Iranian women who were caregivers to relatives with breast cancer. Methods In this qualitative content analysis study, 21 female caregivers of breast cancer patients were chosen by purposive sampling. Data were collected through interviews and analyzed using content analysis. Results Data analysis developed 3 categories: perception of the concept of risk, changing views about femininity, and management of perceived threat. Perception of the risk of breast cancer increased in caregivers, and they tried to manage the perceived threat. They considered the breast to be an important part of women's lives, and breast cancer in relatives changed their view of femininity. Conclusion Understanding the experiences of breast cancer family caregivers in different cultures can help in planning, counseling, and effective intervention.
Objective Drawing on the Stress Process Model, this study examines cancer caregiving in Albania. We used conditional process analysis to test the relationship between psychological distress and quality of life through social support and to examine whether gender moderates pathways in this mediation model. Methods Face-to-face interviews were conducted with a non-probability sample of 377 caregivers from the public oncology service. Standardized measures were selected based on psychometric properties and cross-cultural adequacy; all had good internal consistency. Results Participants reported high levels of psychological distress, moderate social support, and poor quality of life. Compared with men, women had higher levels of distress, worse quality of life, and comparable levels of support. Men were more likely to be caring for a spouse and to rely on friends, while women also cared for others and relied more on family. Social support mediated a strong negative relationship between psychological distress and QoL. These pathways did not differ by gender. Conclusions Cancer is increasing rapidly in developing countries, where family caregiving is the preferred and often only option for long-term, intensive care. This study points to high risks for psychological distress and reduced quality of life, especially for female caregivers in Albania. Findings further highlight the importance of social supports an as avenue for prevention and intervention to improve quality of life for both men and women.
Purpose: The aim of this study was to explore the impact of extended cancer survival on broader aspects of life and wellbeing such as occupational, financial and family life for patients with advanced cancer and their nominated informal caregivers. Methods: In-depth qualitative interviews were transcribed verbatim. A thematic framework was developed from an initial process of open coding and tested iteratively as new data were collected. Results: Twenty-four patient-caregiver dyads with advanced ovarian (9), melanoma (9) or lung cancer (6). Patients were aged 39–84 (median 62 years) and caregivers 19–85 (median 54 years). Caregivers were the partners/spouses (15), children (5), siblings (2) and friends (2) of patients. One particular theme, ‘uncertainty’, encompassed many issues such as planning for the future, providing for one’s family, employment and finances. Uncertainties were related to the timescale and trajectory of the disease and lack of control or ability to make plans. There were marked age effects. Accounts from within the same dyad often differed and patients and caregivers rarely discussed concerns with each other. Conclusions: Both patients and their informal caregivers were challenged by the uncertainties around living with advanced cancer and the lack of a defined trajectory. This impacted many diverse areas of life. Although distressing, dyads seldom discussed these concerns with each other. Implications for Cancer Survivors: Uncertainty is a recurrent issue for cancer survivors and their families impacting broad aspects of their lives and their ability to move forward; however, patients and caregivers in this study rarely discussed these concerns together. Uncertainty should be discussed periodically, together, and healthcare professionals could facilitate these discussions. The use of one or more ‘trigger questions’ in clinic appointments may provide an opportunity to start these dialogues.
Objective: Informal caregivers (ICs) of patients with cancer and cancer survivors report a number of psychological and physical complaints because of the burden associated with providing care. Given the documented effect of Cognitive Behavioral Therapy (CBT) on ICs' common psychological complaints, such as anxiety and depression, the objective was to conduct a meta-analysis on the effect of CBTs for adult ICs. Methods: A literature search was conducted in order to identify all intervention studies on adult ICs that employed at least one therapeutic component defined as a CBT component. Results: Literature searches revealed 36 unique records with sufficient data. These studies were subjected to meta-analyses using random effects models. A small, statistically significant effect of CBTs (Hedge's g?=?0.08, p?=?0.014) was revealed, which disappeared when randomized controlled trials were evaluated alone (g?=?0.04, p?=?0.200). A number of variables were explored as moderators. Only the percentage of female participants was positively associated with the effect size. Conclusions: Based on the negligible effect of CBTs across outcomes, future studies should consider moving beyond traditional CBT methods as these do not appear efficacious. It is suggested that future interventions orient towards advances in the basic affective sciences and derived therapies in order to better understand and treat the emotional struggles experienced by ICs. References
Purpose: Head and neck cancer (HNC) patients suffer from significant morbidity, which may introduce challenging care demands and subsequent stress-induced mind-body interactions for informal caregivers. This prospective study evaluated patient and caregiver predictors of diurnal cortisol rhythm among HNC caregivers during radiation treatment. Method: Patient-caregiver dyads completed measures at radiation treatment start (T1; n = 32) and 5 weeks into treatment (T2; n = 29). Measures included the Functional Assessment of Cancer Therapy-Head and Neck, the Caregiver Quality of Life (QOL) Index-Cancer, the Caregiver Reaction Assessment, the Medical Outcomes Social Support Survey, and the Eating Assessment tool. Patients also received a clinical swallowing evaluation using the Functional Assessment of Oral Intake Scale. Caregiver cortisol concentrations were assessed from salivary samples at T1 and T2. Results: Caregiver cortisol slope became significantly flatter during radiation treatment. Greater caregiver schedule burden was associated with a flatter cortisol slope (b = .35, p = .05) in caregivers at T1. Lower patient functional QOL (b = .41, p = .05) and lower overall caregiver QOL at T1 (b = .39, p = .04) were each separately associated with a flatter cortisol slope in caregivers over treatment. Conclusions: Results suggest the presence of a mind-body interaction in HNC caregivers. Dysregulation in diurnal cortisol rhythm in caregivers was significantly associated with increased caregiver schedule burden and lower patient and caregiver QOL. Targeted interventions developed for HNC caregivers may help to prevent negative health outcomes associated with dysregulated cortisol.
Background: A UK charity, Macmillan Cancer Support has funded a local intervention, whereby carers of people affected by cancer and other long-term conditions at end of life are offered a bespoke package of support. Aim: This short report describes the qualitative experiences of carers in receipt of the intervention. Design: Qualitative research utilising in-depth interviews. Discussions were digitally recorded and transcribed verbatim. Data were analysed using thematic analysis. Setting/participants: Participants were carers (n = 10) in receipt of the intervention. Interviews were conducted between August and September 2014 in Lincolnshire (England). Results: Five themes from the interviews were identified: (1) Awareness and advertising, (2) focus of support on the carer, (3) modes of communication, (4) personal attributes and skills of the support worker (5) streamlining and signposting. Conclusion: The intervention was successful within a social care setting. The participants had no overtly negative opinions on the service in its current format and all held it in high regard. Carers felt a sense of reassurance from having background support and maintained that their situation would have been worse had this support not been there.
Purpose This study aims to characterize the symptom burden and life challenges that chordoma patients and their caregivers experience. Methods In this cross-sectional study, we analyzed data from the Chordoma Foundation online community survey conducted in 2014. Frequency counts and percentages were calculated to determine the prevalence of self-reported symptoms and life challenges in the sample. We used Fisher's exact test to compare self-reported symptoms among subgroups with different disease status, tumor locations, and treatments received. Results Among the survey participants, 358 identified themselves as chordoma patients and 202 as caregivers. The majority of the patients were over 45 years (72%), male (56%), educated beyond high school degree (87%), and from North America (77%). Skull base was the most prevalent tumor location (40%). Chronic pain (35%) was the most commonly reported symptom followed by depression or severe anxiety (32%) and chronic fatigue (31%). Among patients, the most commonly reported challenges included delayed care (37%), long-term disability (33%), and confusion or unanswered questions about chordoma (28%). For caregivers, grief (55%), delayed diagnosis (47%), and difficulty helping the patient cope with his or her disease (45%) were most common. Conclusions Our study findings suggest a high symptom burden and life challenges among chordoma patients and their caregivers. This study provides preliminary, limited estimates of the prevalence of a wide range of self-reported symptoms and challenges that will inform the assessment of patient-reported outcomes in future clinical trials and help clinicians better manage chordoma patients' symptoms.
Purpose Informal caregivers of individuals with cancer may experience substantial burdens. To develop interventions to support these caregivers, it is crucial to quantify and understand the domains of burdens potentially experienced by caregivers and factors contributing to each domain. Methods Using data from two national surveys, the National Survey of Caregiving (NSOC) linked to the National Health and Aging Trends Survey (NHATS), we identified all participants in the NHATS diagnosed with cancer who had a caregiver participating in the NSOC. Guided by a theoretical model, twenty-two items in the NSOC related to caregiver health, mood and outlook were included in factor analysis to develop scales capturing domains of burden. Multivariable regression analyses examined whether activities performed by caregivers and supports for caregivers were associated with these burden scales. Results Analysis of responses from 373 caregivers of cancer patients identified three scales: emotional burden; psychological burden; and relationship with the patient. Providing assistance managing medical care was associated with increased emotional and psychological burden, while assistance with non-medical issues increased psychological burden and worsened relationships with patients. Caregiver provision of direct patient care activities was also associated with increased burden but improved relationships with patients. Use of caregiver supports showed mixed associations with burden. Conclusions Using a nationally-representative sample of cancer patients and their caregivers and brief publicly-available survey questions, we present three scales addressing different aspects of caregiver burden that are responsive to caregiver activities and social supports. This may assist in developing and evaluating intervention to decrease caregiver burden.
Objective This study aimed to (1) identify the changes of 5 domains of family caregiver (FC) burden, overall burden, and its subtrajectories when caring for newly diagnosed advanced lung cancer patients during the first 6 months following cancer diagnosis; and (2) identify the FC‐related and patient‐related factors most associated with the overall FC burden and each of its subtrajectories. Methods A total of 150 newly diagnosed advanced lung cancer patient‐FC dyads were recruited from a Taiwanese medical center. The overall FC burden was evaluated 4 times: before treatment, and 1, 3, and 6 months after treatment. The potential subtrajectory of the caregiver burden was investigated by latent class growth analysis. The FC‐related and patient‐related factors having the greatest effect on the overall FC burden and its subtrajectories over time were identified by generalized estimating equations. Results The highest level of burden domain was “Impact on daily schedule” over time. Generally, most of the FC reported a moderate level of overall burden over the investigation period. Three subtrajectories of the overall FC burden over time (% caregivers) were identified: high burden (34.7%), moderate burden (56.0%), and low burden (9.3%), respectively. The self‐efficacy of FC was the strongest factor related to the changes of the FC's burden and burden in each subtrajectory. Conclusion The results support the existing and different types of subtrajectories of the FC's burden. Health care professionals should provide care based on those differences. Further research to test interventions which integrate those important factors related to FC's burden, particularly FC's self‐efficacy, is strongly suggested.
Objective This study examined social, cultural, and appraisal factors associated with Korean‐American cancer patients' and their family caregivers' quality of life (QOL) and depression. Methods Data were from Korean‐American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. Results For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. Conclusions Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.
Objective: Patients with incurable cancer and their informal caregivers have numerous psychological and psychosocial needs. Many of these patients wish to receive their care and die at home. Few home-based specialized palliative care (SPC) interventions systematically integrate psychological support. We present a psychological intervention for patient–caregiver dyads developed for an ongoing randomized controlled trial (RCT) of home-based SPC, known as Domus, as well as the results of an assessment of its acceptability and feasibility. Method: The Domus model of SPC for patients with incurable cancer and their caregivers offered systematic psychological assessment and dyadic intervention as part of interdisciplinary care. Through accelerated transition to SPC, the aim of the model was to enhance patients' chances of receiving care and dying at home. Integration of psychological support sought to facilitate this goal by alleviating distress in patients and caregivers. Psychologists provided needs-based sessions based on existential-phenomenological therapy. Feasibility and acceptability were investigated by examining enrollment, nonparticipation, and completion of psychological sessions. Results: Enrollment in the RCT and uptake of the psychological intervention indicated that it was feasible and acceptable to patients and caregivers. The strengths of the intervention included its focus on dyads, psychological distress, and existential concerns, as well as interdisciplinary collaboration and psychological interventions offered according to need. Its main limitation was a lack of an intervention for other family members. Significance of Results: Our results show that psychological intervention can be systematically integrated into SPC and that it appears feasible to provide dyadic needs-based sessions with an existential therapeutic approach. The Domus RCT will provide evidence of the efficacy of a novel model of multidisciplinary SPC
Introduction Cancer affects not only the patient, but also the whole family, especially when a member of the family assumes the role of the family caregiver. This puts an additional emotional, social and financial strain on the family caregivers. Family caregivers of cancer patients are actively involved in the care provided at the home setting through various ways including practical tasks, symptom management and care coordination. The focus of preceding studies on family caregivers and symptom management was either on pain or the patients’ and family caregivers’ experience of symptom management and coping. The aim of this review was to provide evidence on how family caregivers manage symptoms and side effects at home, in adult cancer patients throughout the disease trajectory. Methods A systematic literature review was performed in PubMed, CINAHL, Web of Science and the Cochrane Central Register of Controlled Trials with a combination of keywords and MeSH terms for family caregivers, cancer, symptoms, side effects and management. Based on predetermined inclusion and exclusion criteria, a total of 1270 articles were screened and 20 studies were included in the analysis. A descriptive analysis was performed due to the heterogeneity of the findings. Results The results showed that only a limited number of studies (3/20) explored how and what family caregivers do in symptom management as a primary outcome. Family caregivers provided psychosocial support, such as supporting and motivating the patient and maintaining social engagement. Caregivers provided physical support such as with the administration of medicine and tube feeding. As an integral part of managing the symptoms, family caregivers actively monitored and assessed symptoms to timely recognize any treatment related side effects, assess the response to therapeutic interventions and recognize possible deterioration in physical status. Furthermore, family caregivers were often the decision maker – being alert, watching and waiting and decided when to act and when not to act. Conclusions Family caregivers are doing work similar to healthcare professionals, when managing symptoms and side effects at home in patients with cancer. Advanced tasks such as assessing, monitoring and deciding when and how to act are included in the daily routine of family caregivers.
Background Although recent studies have increasingly reported physical and psychological problems associated with cancer and its treatment, social problems of cancer patients and their families have not been sufficiently elucidated. The present study aimed to identify cancer-associated social problems from the perspectives of both patients and their spouses and to compare and analyze differences in their problems. Methods This was a cross-sectional internet-based study. Subjects were 259 patients who developed cancer within the previous five years and 259 patients’ spouses; the data were derived from two surveys in 2010 (patients) and 2016 (spouses) whose participants were not part of the same dyad but matched by propensity scores, estimated for age, sex, and the presence or absence of recurrence. We investigated the social difficulties of cancer patients and patients’ spouses. Regarding social difficulties experienced by cancer patients and spouses, the 60 patient survey items were categorized into 14 labels by the Jiro Kawakita (KJ) method, which is a qualitative synthesis method developed by Kawakita to classify categorical data. Results Although patients had higher scores on most subcategories, young spouses aged 39 or younger and female spouses had difficulty scores as high as the corresponding patients on many subcategories. Conclusion Health care providers should show sufficient concern for both patients and their spouses, particularly young and female spouses.
Objective With growing recognitions of the significance of benefit finding (BF) in cancer practice, research has increased to explore factors that may influence BF in the cancer context. Few studies have focused explicitly on factors influencing BF from the dyadic perspective of cancer patient (CP)‐family caregiver (FC) dyads. The objectives of the study were to examine BF relationship between CPs and FCs and to investigate factors that may modify the BF relationships between CPs and FCs. Methods Participants consisted of 772 dyads of CPs and FCs. Three types of variables were collected as potential modifying factors, including CP‐related variables, FC‐related variables, and psychological‐related variables. Descriptive statistics, T test, Pearson correlations, and subgroup analysis were applied to conduct the data analysis. Results Cancer patients and FCs experienced similar moderate to high BF ranging from 65% to 81%, with the exception of acceptance, in that CPs had higher levels of acceptance than did FCs (P < .05). Various factors modifying the BF relationships between CPs and FCs were identified, including dyads' gender, marital status, education level, employment status, level of being informed about the disease, and cancer type and treatment, anxiety, depression, and self‐efficacy. Conclusions Study findings call attention to the BF, as well as related factors, from the dyadic perspective of CP‐FC dyads. Health care professionals need to include FCs of the CPs in their care and provide them with support, to encourage the CP‐FC dyads to share their experience and improve BF together, and to develop a dyadic‐based intervention program to help enhancing dyads BF.
Background: Carers of people with advanced cancer play a significant role in managing pain medication, yet they report insufficient information and support to do so confidently and competently. There is limited research evidence on the best ways for clinicians to help carers with medication management. Aims: To develop a pain medicines management intervention (Cancer Carers Medicines Management) for cancer patients’ carers near the end of life and evaluate feasibility and acceptability to nurses and carers. To test the feasibility of trial research procedures and to inform decisions concerning a full-scale randomised controlled trial. Design: Phase I-II clinical trial. A systematic, evidence-informed participatory method was used to develop CCMM: a nurse-delivered structured conversational process. A two-arm, cluster randomised controlled feasibility trial of Cancer Carers Medicines Management was conducted, with an embedded qualitative study to evaluate participants’ experiences of Cancer Carers Medicines Management and trial procedures. Setting: Community settings in two study sites. Participants: Phase I comprises 57 carers, patients and healthcare professionals and Phase II comprises 12 nurses and 15 carers. Results: A novel intervention was developed. Nurses were recruited and randomised. Carer recruitment to the trial was problematic with fewer than predicted eligible participants, and nurses judged a high proportion unsuitable to recruit into the study. Attrition rates following recruitment were typical for the study population. Cancer Carers Medicines Management was acceptable to carers and nurses who took part, and some benefits were identified. Conclusion: Cancer Carers Medicines Management is a robustly developed medicines management intervention which merits further research to test its effectiveness to improve carers’ management of pain medicines with patients at the end of life. The study highlighted aspects of trial design that need to be considered in future research.
Purpose Measure Yourself Concerns and Wellbeing (MYCaW) is a validated person-centred measure of the concerns and wellbeing of people affected by cancer. Research suggests that the concerns of informal caregivers (ICs) are as complex and severely rated as people with cancer, yet MYCaW has only been used to represent cancer patients’ concerns and wellbeing. This paper reports on the development of a new qualitative coding framework for MYCaW to capture the concerns of ICs, to better understand the needs of this group. Methods This multicentred study involved collection of data from ICs receiving support from two UK cancer support charities (Penny Brohn UK and Cavendish Cancer Care). Qualitative codes were developed through a detailed thematic analysis of ICs’ stated concerns. Results Thematic analysis of IC questionnaire data identified key themes which were translated into a coding framework with two overarching sections (1) ‘informal caregiver concerns for self’ and (2) ‘informal caregiver concerns for the person with cancer’. Supercategories with specific accompanying codes were developed for each section. Two further rounds of framework testing across different cohorts allowed for iterative development and refinement of the framework content. Conclusions This is the first person-centred tool specifically designed for capturing IC’s concerns through their own words. This coding framework will allow for IC data to be analysed using a rigorous and reproducible method, and therefore reported in a standardised way. This may also be of interest to those exploring the needs of ICs of people in other situations.
Background: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. Methods: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers’ perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. Results: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. Conclusions: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.
Objectives Family conflict has several adverse impacts on caregivers. Thus, there is significant value in determining the prevalence and predictors of family conflict, which can enable the health care provider to intervene if family conflict arises during end-of-life care. Accordingly, we aimed to explore the prevalence and predictors of conflict among the families of patients with advanced cancer who died in palliative care units. Methods This study was a nationwide multicenter questionnaire survey of bereaved family members of cancer patients who died in Japanese palliative care units participating in evaluation of the quality of end-of-life care. Results We sent out 764 questionnaires, and 529 questionnaires (69.2%) were returned. As 70 family members refused to participate and we could not identify the answers in one questionnaire, we analyzed a total of 458 responses. The average Outcome-Family Conflict score was 13.5 ± 4.9 (maximum score: 39.5), and 42.2% of family members reported at least one family conflict during end-of-life care. Greater family conflict was significantly associated with younger family age, with family members asserting control over decision making for patient care and with communication constraints among family members, although absent family members "coming out of the woodwork" reduced family conflict. Conclusions Many families of patients with advanced cancer experienced conflict during end-of-life care. Family members asserting control over decision making and communication constraints among family members after diagnosis of cancer can predict the occurrence of family conflict. Absent family members "coming out of the woodwork" might reduce family conflict in particular cultures.
The aim of this pilot study was to test the feasibility and acceptability of a family carer intervention for carers of patients with high-grade glioma (HGG). The intervention consisted of: (1) an initial telephone assessment of carer needs; (2) a personalised tabbed resource file; (3) nurse-led home visit; and (4) ongoing telephone support. Two consumer representatives reviewed the intervention resources. The intervention was then piloted with participants who were the primary carer for patients undergoing treatment for HGG in Western Australia. Two consumers provided feedback on the resource, and 10 carers participated in the pilot. Positive feedback was received about the resource manual and intervention. Suggestions were also made for changes which were implemented into the trial. The surveys were shortened based on feedback. Participants identified a large range of issues during nursing assessments which would not otherwise be identified or addressed for carers receiving routine care. As a result of providing the intervention, the nurse was able to make referrals to address needs that were identified. This pilot study enabled us to refine and test the Care-IS intervention and test the feasibility and acceptability of proposed survey instruments. We were also able to estimate recruitment and retention and the overall study timeline required for the randomised controlled trial we are now conducting. It has also demonstrated the role of the nurse who delivered the intervention and allowed us to refine communication and referral pathways.
Family and friends are important resources for patients during cancer treatment and warrant an expanded review of not only what they contribute to patient care but also the support they need and the personal consequences of caregiving. A review of 14 randomized controlled trials published between 2009 and 2016 was completed utilizing the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The results of this review expand the scope of what is known regarding relationships among supportive interventions for caregivers, activities performed to care for cancer patients, caregiver characteristics, and health outcomes of caregivers. Specific results include (a) updated synthesis of literature associated with variables important to caregiving, (b) attention to interventions designed to support caregivers, (c) classification of specific activities caregivers perform for cancer patients, (d) identification of caregiver characteristics associated with specific care activities, (e) inconsistencies in measurement of care activities, and (f) minimal reporting of outcome variables.
The purpose of this study was to quantify the general cancer support activities that long‐term carers of head and neck cancer (HNC) survivors engage in; and the relationships between these care activities and psychological well‐being. Respondents answered a survey detailing their caring activities, the amount of time that they spent on those activities and how comfortable they felt engaging in them. Psychological well‐being was assessed by the Depression Anxiety Stress Scales‐21. A total of 197 carers took part in the study. The majority (76%) were women, mean age 57.4. Mean time since diagnosis was 6.2 years. In the past month, 45% of carers did not spend any extra time per week helping their relative/friend with general caring activities such as cleaning the house; 31% spent 1–19 hr/week and 23% spent 20 or more hours/week doing so. Most carers were comfortable assisting their relative/friend, though more carers felt uncomfortable assisting with HNC‐specific support tasks (31% uncomfortable helping with medication) compared with general support tasks (7% uncomfortable helping with appointments). Feeling uncomfortable with head and neck‐specific care tasks was a significant predictor of experiencing depression and anxiety.
Objective Psychosocial interventions are historically underutilized by cancer caregivers, but support programs delivered flexibly over the Internet address multiple barriers to care. We adapted Meaning‐Centered Psychotherapy for cancer caregivers, an in‐person psychotherapeutic intervention intended to augment caregivers' sense of meaning and purpose and ameliorate burden, for delivery in a self‐administered web‐based program, the Care for the Cancer Caregiver (CCC) Workshop. The present study evaluated the feasibility, acceptability, and preliminary effects of this program. Methods Eighty‐four caregivers were randomized to the CCC Workshop or waitlist control arm. Quantitative assessments of meaning, burden, anxiety, depression, benefit finding, and spiritual well‐being were conducted preintervention (T1), within 2‐weeks postintervention (T2), and 2‐ to 3‐month follow‐up (T3). In‐depth semistructured interviews were conducted with a subset of participants. Results Forty‐two caregivers were randomized to the CCC Workshop. Attrition was moderate at T2 and T3, with caregiver burden and bereavement as key causes of drop‐out. At T2 and T3, some observed mean change scores and effect sizes were consistent with hypothesized trends (eg, meaning in caregiving, benefit finding, and depressive symptomatology), though no pre‐post significant differences emerged between groups. However, a longitudinal mixed‐effects model found significant differential increases in benefit finding in favor of the CCC arm. Conclusions The CCC Workshop was feasible and acceptable. Based on effect sizes reported here, a larger study will likely establish the efficacy of the CCC Workshop, which has the potential to address unmet needs of caregivers who underutilize in‐person supportive care services.
Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers (n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included 7 men, 7 women, and mean age of 59 years 3 were bereaved 12 were partners 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation (2) availability of palliative care (3) information and communication about illness, prognosis, and death and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.
Objective: Caring for the family is included as one of the eight domains of quality palliative care, calling attention to the importance of the family system and family communications about cancer during care and treatment of the disease. Previously, a model of family caregiver communication defined four caregiver communication types - Manager, Carrier, Partner, Lone - each with a unique communication pattern. The purpose of the present study was to extend the model of family caregiver communication in cancer care to further understand the impact of family communication burden on caregiving outcomes. Method: This mixed-method study employed fieldnotes from a family caregiver intervention focused on quality of life and self-reported caregiver communication items to identify a specific family caregiver type. Caregiver types were then analyzed using outcome measures on psychological distress, skills preparedness, family inventory of needs, and quality-of-life domains. Results: Corroboration between fieldnotes and self-reported communication for caregivers ([i]n[/i] = 21, 16 women, mean age of 53 years) revealed a definitive classification of the four caregiver types (Manager = 6, Carrier = 5, Partner = 6, Lone = 4). Mean scores on self-reported communication items documented different communication patterns congruent with the theoretical framework of the model. Variation in caregiver outcomes measures confirmed the model of family caregiver communication types. Partner and Lone caregivers reported the lowest psychological distress, with Carrier caregivers feeling least prepared and Manager caregivers reporting the lowest physical quality of life. Significance of results: This study illustrates the impact of family communication on caregiving and increases our knowledge and understanding about the role of communication in caregiver burden. The research provides the first evidence-based validation for a family caregiver communication typology and its relationship to caregiver outcomes. Future research is needed to develop and test interventions that target specific caregiver types.
Objectives Family caregivers of cancer patients have a vital role in facilitating and sharing information about cancer, revealing a need to develop caregiver health literacy skills to support caregiver communication. The goal of this study was to investigate caregiver print materials and develop and assess a new caregiver communication resource titled A Communication Guide for CaregiversTM. Methods Using a model of six domains of caregiver health literacy skills, print cancer education materials were collected and evaluated for caregiver communication support. A new caregiver communication resource was also developed and assessed by caregivers and healthcare providers. Caregivers reviewed content and assessed utility, relatability, and reading quality. Healthcare providers also assessed whether the material would be understandable and usable for cancer caregivers. Results Only three of the 28 print materials evaluated were written at the recommended sixth grade reading level and only five addressed all six caregiver health literacy skills. Readability scores for A Communication Guide for CaregiversTM were at the sixth grade level, and caregivers reported its contents were relatable, useful, and easy to read. Healthcare providers also rated the material as easy for patient/family members of diverse backgrounds and varying levels of literacy to understand and use. Conclusions Existing print-based caregiver education materials do not address caregivers' health literacy skill needs and are aimed at a highly literate caregiving population. A Communication Guide for CaregiversTM meets health literacy standards and family caregiver and provider communication needs. The findings are relevant for healthcare professionals who provide cancer education.
Background To investigate how cancer patients, family caregiver, and their treating oncologist view the risks and benefits of family involvement in cancer treatment decision making (TDM) or the degree to which these perceptions may differ. Patients and Methods A nationwide, multicenter survey was conducted with 134 oncologists and 725 of their patients and accompanying caregivers. Participant answered to modified Control Preferences Scale and investigator-developed questionnaire regarding family involvement in cancer TDM. Results Most participants (>90%) thought that family should be involved in cancer TDM. When asked if the oncologist should allow family involvement if the patient did not want them involved, most patients and caregivers (>85%) thought they should. However, under this circumstance, only 56.0% of oncologists supported family involvement. Patients were significantly more likely to skew their responses toward patient rather than family decisional control than were their caregivers (P < .003) oncologists were more likely to skew their responses toward patient rather than family decisional control than caregivers (P < .001). Most respondents thought that family involvement is helpful and neither hamper patient autonomy nor complicate cancer TDM process. Oncologists were largely positive, but less so in these ratings than either patients or caregivers (P < .002). Conclusions Patients, family caregivers, and, to a lesser degree, oncologists expect and valued family involvement in cancer TDM. These findings support a reconsideration of traditional models focused on protection of patient autonomy to a more contextualized form of relational autonomy, whereby the patient and family caregivers can be seen as a unit for autonomous decision.
Background: there are many people with advanced cancer who are cared for in the community, though little is known about patients' and family members' lived experiences during discharge from hospital to home. Objectives: to describe the experiences of the patient-family caregiver dyad during the transition from hospital to home at a National Cancer Institute in Colombia. Methods: a descriptive phenomenological approach was taken for this study. Results: Forty-one nominal codes emerged, comprising seven themes that describe the experience of the individual in palliative care and their family caregiver during the transition from hospital to home care. Conclusions: the patient-family caregiver dyad have to deal with symptoms while being confronted with the prognosis and progression of the disease at home. The economic costs in acquiring supplies needed for proper care provision are considerable. In addition there are administrative fees from consultations and accessing the health services. Emotional and spiritual support for the dyad is required.
Purpose: The importance of family caregivers in providing palliative care at home and in supporting a home death is well supported. Gaining a better understanding of what enables palliative family caregivers to continue caring at home for their family members until death is critical to providing direction for more effective support. The purpose of the study was to describe the experiences of bereaved family caregivers whose terminally ill family members with advanced cancer were successful in achieving a desired home death. Method: A qualitative interpretive descriptive approach was used. Data were collected using semi-structured, audio-recorded interviews conducted in-person or via telephone in addition to field notes and reflective journaling. The study took place in British Columbia, Canada, and included 29 bereaved adult family caregivers who had provided care for a family member with advanced cancer and experienced a home death. Results: Four themes captured the experience of caring at home until death: context of providing care, supportive antecedents to providing care, determination to provide care at home, and enabled determination. Factors that enabled determination to achieve a home death included initiation of formal palliative care, asking for and receiving help, augmented care, relief or respite, and making the healthcare system work for the ill person. Conclusions: Clarifying caregiving goals and supporting the factors that enable caregiver determination appear to be critical in enhancing the likelihood of a desired home death.
This study explored the caregiving experiences of wives of patients with prostate cancer. Twenty wives revealed those older, educated, or married longer were less burdened by caregiving, but needed more information. Findings contribute new dimensions in caregiving for patients with prostate cancer and their wives.
Rationale: Given the high number of young adults caring for a family member, and the potential for adverse psychosocial outcomes, there is a need for a screening tool, with clinical utility, to identify those most vulnerable to poor outcomes and to aid targeted interventions. Objectives: (i) To determine whether current knowledge from cancer literature regarding young carers is generalisable to chronic conditions and, therefore, whether an existing screening tool could be adapted for this population. (ii) To develop a measure of unmet needs in this population and conduct initial psychometric analysis. Design: This was mixed method interviews in study one informed measure development in study two. Inclusion criteria were as follows: having a parent with a chronic condition and being aged 16-24 years. In study 1, an interpretative phenomenological analysis was conducted on interviews from seven young adults (age range 17-19 years). Study 2 explored factor structure, reliability and validity of the Offspring Chronic Illness Needs Inventory (OCINI). Participants were 73 females and 34 males (mean ages 18.22, SD = 1.16 18.65, SD = 1.25). Main outcome measures OCINI, Depression Anxiety and Stress Scale, and the Adult Carers Quality of Life Scale. Results: Interviews communicated that the impact of their parent's condition went unacknowledged and resulted in psychosocial, support and informational needs. An exploratory principal axis analysis of the OCINI yielded five factors. Significant and positive correlations were found between unmet needs and stress, anxiety, and depression, and inversely with quality of life. Conclusions: The scale has applications in clinical settings where these young people, who are at risk of negative psychological outcomes, may be assessed and unmet needs targeted appropriately. References
Objective: To explore: (1) how haematological cancer survivors and their support persons perceive the overall performance of the support person; (2) disagreement between survivor and support person ratings; and (3) characteristics associated with support persons rating their performance poorly. Methods: This is a substudy of a larger project of Australian haematological cancer survivors and their support persons. For this substudy, haematological cancer survivors were recruited from 4 Australian population‐based cancer registries and asked to pass on a questionnaire package to their support persons. Survivors who passed on a questionnaire package to their support person were asked to answer questions about the support person and how they perceived the support person's performance. Similarly, support persons answered questions on their own performance as a support person. Results: A total of 924 haematological cancer survivors and 821 support persons were eligible for this study. Most survivors rated their support person as performing very well (84%) while less than half (48%) of support persons rated their own performance as very well. There was significant disagreement between survivor and their support person (dyad) ratings of the support person's performance. Support persons with above normal levels of depression (vs those with normal levels) had significantly higher odds of rating their own performance as “not well/somewhat well.” Conclusions: Health care providers should consider providing additional education and skills‐based interventions to support persons who experience increased symptoms of depression.
Purpose: This study aimed to determine how carer distress and psychological morbidity change over time following a patient’s diagnosis of high-grade glioma (HGG) and identify factors associated with changes in carers’ psychological status. Methods: Carers of patients with HGG planned for chemoradiotherapy were recruited to this longitudinal cohort study. Carers completed questionnaires during patients’ chemoradiotherapy and 3 and 6 months later including the following: the Distress Thermometer (DT); General Health Questionnaire-12 (GHQ-12); and three single-item questions about understanding of information presented by health professionals, confidence to care and preparedness to care for their relative/friend. Linear latent growth models were applied. Results: The time 1 questionnaire was completed by 118 carers, of these 70 carers provided responses to the third time point. Carer distress and psychological morbidity were most prominent proximal to diagnosis, but remained high over time. Sixty-two percent of participants had moderate or high distress on the DT at time 1, 61% at time 2 and 58% at time 3. Scores on the DT and the GHQ-12 correlated significantly at all time points as did changes in scores over time (p < .001). However, for individual carers, the DT or GHQ-12 scores at one time point did not strongly predict scores at subsequent time points. Conclusion: In carers of patients with HGG, distress levels are consistently high and cannot be predicted at any time point. Carers should be monitored over time to identify evolving psychological morbidity. The single-item DT correlates highly with GHQ-12 scores and is a suitable tool for rapid repeated screening.
We aimed to investigate the levels of anxiety, depression, satisfaction with information provision and cancer‐related knowledge in partners of head and neck cancer (HNC) patients receiving a Multimode Comprehensive Tailored Information Package (MCTIP). A non‐randomised, controlled trial was conducted with partners of HNC patients recruited at two academic hospitals in Montreal. The Test participants received the MCTIP, while the Control participants received information in an ad hoc manner. All participants were evaluated using the Hospital Anxiety and Depression Scale (HADS), Satisfaction with Cancer Information Profile and a cancer knowledge questionnaire at baseline, and 3 and 6 months later. Data were analysed using descriptive statistics, t‐test and chi‐square test, and mixed model analysis to test the impact of the intervention. A total of 31 partners of HNC patients participated in this study and completed all the evaluations. The partners in the Test group experienced significantly lower levels of anxiety (P = 0.001) and depression (P = 0.003) symptoms and were more satisfied (P = 0.002) with cancer information provided than partners in the Control group. Providing tailored information seems to have positive outcomes regarding anxiety, depression, and satisfaction in partners of HNC patients. Larger randomised studies are warranted to validate these effects.
Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control family caregivers' knowledge, skills, and self-efficacy in pain management and family caregivers' concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples.
The lay caregiving role is integral to advanced cancer care but places carers' health at risk. A supportive General Practitioner (GP) can help primary lay carers manage their health, if they disclose their concerns. A Needs Assessment Tool for Caregivers (NAT-C) was developed for carers to self-complete and use as the basis of a GP consultation, then tested in a randomised controlled trial. This paper reports a qualitative research study to determine the usefulness and acceptability of the NAT-C in the Australian primary care setting. Convenience samples of 11 carers and 5 GPs were interviewed between September 2010 and December 2011 regarding their experiences with and perceptions of the NAT-C. Open-ended questions were used, and the transcripts were analysed qualitatively to identify themes and patterns. Three major themes were identified: (a) Acceptability of the intervention (b) Impact of the intervention on the GP-patient relationship and (c) Place of the intervention in advanced cancer care. This simple checklist was acceptable to carers, although some were uncertain about the legitimacy of discussing their own needs with their GP. Carer-patients could not be certain whether a GP would be willing or equipped to conduct a NAT-C-based consultation. Such consultations were acceptable to most GPs, although some already used a holistic approach while others preferred brief symptom-based consultations. Although the NAT-C was acceptable to most carers and GPs, supportive consultations take time. This raises organisational issues to be addressed so carers can seek and benefit from their GP's support.
Glioma patients are not only confronted with the diagnosis and treatment of cancer, but also with disease-specific symptoms that greatly affect everyday life. Common symptoms among patients include motor dysfunction, sensory loss, seizures, cognitive deficits, changes in behaviour and personality, mood issues, and fatigue. This review focuses on family caregivers, for whom dealing with the diagnosis and treatment of a brain tumour in their loved one while managing disease-specific symptoms can be challenging. Supportive interventions to assist caregivers have been reported, but high-quality scientific evidence for the effectiveness of these programmes is lacking. Further research is needed to determine how best to support family caregivers to manage glioma patients' symptoms while maintaining their own health. Research is also required in evaluating the health economic benefits of support programmes for caregivers, as better care for caregivers may potentially reduce overall healthcare costs.
The aim of this review was to identify the factors associated with positive experiences in non‐professional carers of someone with a cancer diagnosis. A systematic search of the following electronic databases was undertaken: Cochrane Library, CINAHL, PsycINFO, SocINDEX and Medline. Literature was searched using terms relating to cancer, caring and positive experiences. Additional records were identified through a manual search of relevant reference lists. The search included studies published in English from 1990 to June 2015. Two raters were involved in data extraction, quality appraisal, coding, synthesis and analysis. Evolutionary concept analysis was used as a guiding framework in order to focus on attributes associated with positive experiences. Fifty‐two articles were included in this review. Analysis identified four overarching attributes: “gender,” “personal resources,” “finding meaning” and “social context.” Despite the challenges associated with caring, this combination of internal and external factors enabled some carers to report positive experiences related to caring. This knowledge may be clinically helpful when designing supportive interventions. Strengths and limitations of these claims are discussed.
Systematic review registration number: CRD42014014129.
Background: This pilot study aimed to investigate quality of life, psychological burden, unmet needs, and care satisfaction in family caregivers of advanced cancer patients (FCs) during specialized inpatient palliative care (SIPC) and to test feasibility and acceptance of the questionnaire survey. Methods: During a period of 12 weeks, FCs were recruited consecutively within 72 h after the patient’s admission. They completed validated scales on several outcomes: quality of life (SF-8), distress (DT), anxiety (GAD-7), depression (PHQ-9), supportive needs (FIN), palliative care outcome (POS), and satisfaction with care (FAMCARE-2). We used non-parametric tests, t-tests and correlation analyses to address our research questions. Results: FCs showed high study commitment: 74 FCs were asked to participate whereof 54 (73%) agreed and 51 (69%) returned the questionnaire. Except for “bodily pain”, FCs’ quality of life (SF-8) was impaired in all subscales. Most FCs (96%) reported clinically significant own distress (DT), with sadness, sorrows and exhaustion being the most distressing problems (80–83%). Moderate to severe anxiety (GAD-7) and depression (PHQ-9) were prevalent in 43% and 41% of FCs, respectively. FCs scored a mean number of 16.3 of 20 needs (FIN) as very or extremely important (SD 3.3), 20% of needs were unmet in >50% of FCs. The mean POS score assessed by FCs was 16.6 (SD 5.0) and satisfaction (FAMCARE-2) was high (73.4; SD 8.3). Conclusions: This pilot study demonstrated feasibility of the questionnaire survey and showed relevant psychosocial burden and unmet needs in FCs during SIPC. However, FCs’ satisfaction with SIPC seemed to be high. A current multicenter study evaluates these findings longitudinally in a large cohort of FCs.
Purpose: Caregiver, relational, and patient factors have been associated with the health of family members and friends providing care to patients with early-stage cancer. Little research has examined whether findings extend to family caregivers of patients with incurable cancer, who experience unique and substantial caregiving burdens. We examined correlates of mental and physical health among caregivers of patients with newly-diagnosed incurable lung or non-colorectal gastrointestinal cancer. Methods: At baseline for a trial of early palliative care, caregivers of participating patients (N = 275) reported their mental and physical health (Medical Outcome Survey-Short Form-36); patients reported their quality of life (Functional Assessment of Cancer Therapy-General). Analyses used hierarchical linear regression with two-tailed significance tests. Results: Caregivers’ mental health was worse than the U.S. national population (M = 44.31, p < .001), yet their physical health was better (M = 56.20, p < .001). Hierarchical regression analyses testing caregiver, relational, and patient factors simultaneously revealed that younger (B = 0.31, p = .001), spousal caregivers (B = −8.70, p = .003), who cared for patients reporting low emotional well-being (B = 0.51, p = .01) reported worse mental health; older (B = −0.17, p = .01) caregivers with low educational attainment (B = 4.36, p < .001) who cared for patients reporting low social well-being (B = 0.35, p = .05) reported worse physical health. Conclusions: In this large sample of family caregivers of patients with incurable cancer, caregiver demographics, relational factors, and patient-specific factors were all related to caregiver mental health, while caregiver demographics were primarily associated with caregiver physical health. These findings help identify characteristics of family caregivers at highest risk of poor mental and physical health who may benefit from greater supportive care.
Objective: Cancer caregiving burden is known to vary across the survivorship trajectory and has been linked with caregivers’ subsequent health impairment. Little is known, however, regarding how risk factors during long-term survivorship relate to vulnerability to caregivers’ health during that period. This study examined effects of caregiving status and depressive symptoms on development of physical morbidity by 5 years postdiagnosis. Method: Family caregivers (N = 491; Mage = 55.78) completed surveys at 2 (Time 1 [T1]) and 5 years (T2) after their care recipients’ cancer diagnosis. Demographic and caregiving context variables known to affect caregivers’ health were assessed at T1. Self-reported depressive symptoms and a list of physical morbid conditions were assessed at T1 and T2. Caregiving status (former, current, or bereaved) was assessed at T2. Results: Hierarchical negative binomial regression revealed that current caregivers at T2 (p = .02), but not those bereaved by T2 (p = .32), developed more physical morbid conditions between T1 and T2 compared with former caregivers, controlling for other variables. Independently, caregivers reporting either newly emerging or chronically elevated depressive symptoms at T2 (ps < .03), but not those whose symptoms remitted at T2 (p = .61), showed greater development of physical morbidity than did those reporting minimal depressive symptoms at both T1 and T2. Conclusions: Results highlight the roles of long-term caregiving demands and depressive symptoms in cancer caregivers’ premature physical health decline. Clinical attention through the long-term survivorship trajectory should be emphasized for caregivers of patients with recurrent or prolonged illness and to address caregivers’ elevated depressive symptoms.
Background: Anxiety and depression are common among patients with acute illness and their families. In oncology, psychosocial services addressing these symptoms are increasingly part of regular practice. Less is known about psychiatric distress among patients with acute neurological injury (ANI) and their family caregivers. To highlight this inequity in psychosocial intervention across medical services, we compared anxiety and depressive symptomatology shortly following diagnosis among patients facing incurable cancer or ANI and their family caregivers. Methods: Recruited from the same hospital, participants were patients within 8 weeks of receiving a diagnosis of incurable cancer (N = 350) and their family caregivers (N = 275; total patient/caregiver dyads = 275) and patients hospitalized in the Neuroscience ICU in the past 2 weeks (N = 81) and their family caregivers (N = 95; total dyads = 75). Participants reported anxiety and depressive symptoms using the Hospital Anxiety and Depression Scale. Symptomatology was compared across illnesses using independent samples t-tests and multiple regressions controlling for differences in sample demographics. Results: Patients with ANI (M = 6.90) reported greater anxiety symptoms than those with cancer (M = 5.31, p < .001), while caregivers for patients with ANI (M = 5.45) reported greater depressive symptoms than caregivers for patients with cancer (M = 3.81, p < .001). Results remained when controlling for demographic differences between samples. Conclusion: This is the first cross-comparison of psychiatric distress in patients and family caregivers affected by two distinct, life-threatening illnesses early in the illness trajectory. Findings support the priority of addressing psychiatric distress among patients with ANI and their family caregivers, as has been emphasized in the psychosocial oncology field.
Background: Family members provide vital care at end of life, enabling patients to remain at home. Such informal care contributes significantly to the economy while supporting patients’ preferences and government policy. However, the value of care-givers’ contributions is often underestimated or overlooked in evaluations. Without information on the activities and expenditures involved in informal care-giving, it is impossible to provide an accurate assessment of carers’ contribution to end-of-life care. Aim: The aim of this study was to investigate the contributions and expenditure of informal, family care-giving in end-of-life cancer care. Design: A national census survey of English cancer carers was conducted. Survey packs were mailed to 5271 people who registered the death of a relative to cancer during 1–16 May 2015. Data were collected on decedents’ health and situation, care support given, financial expenditure resulting from care, carer well-being and general background information. Results: In all, 1504 completed surveys were returned (28.5%). Over 90% of respondents reported spending time on care-giving in the last 3 months of the decedent’s life, contributing a median 69 h 30 min of care-giving each week. Those who reported details of expenditure (72.5%) spent a median £370 in the last 3 months of the decedent’s life. Conclusion: Carers contribute a great deal of time and money for day-to-day support and care of patients. This study has yielded a unique, population-level data set of end-of-life care-giving and future analyses will provide estimates of the economic value of family care-givers’ contributions.
Rationale: The primary setting of palliative care has shifted from inpatient care to patients’ residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. Patient concerns: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. Diagnoses: The patient was diagnosed with stage IV breast cancer. Interventions: The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. Outcomes: The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. Lessons: Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients’ end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.
We examined the evolution of the subjective burden of romantic partners caring for women with non-metastatic breast cancer and investigated the moderating role of couple satisfaction on caring stress. Forty-seven partners filled out questionnaires 3 and 12 months after surgery. Using a stress process model, we examined caring stressors and moderating factors (couple satisfaction, coping and social support) as predictors of subjective burden. Results showed that subjective burden decreases over time and that the couple satisfaction largely explains it above and beyond other influential variables. Partners dissatisfied with their couple relationship are especially vulnerable to the stress of caregiving.
Objective: As the first stage in developing an intervention for family caregivers of individuals with advanced cancer, we conducted a focus group study to understand their needs. Background: Family caregivers play an important role in the care of advanced cancer patients. Despite substantial burden and distress experienced by family caregivers of individuals with advanced cancer, their needs are not addressed systematically. Method: The study took place at a large urban cancer center in Canada. We conducted 2 focus groups: one with 7 current family caregivers, the other with 7 bereaved caregivers. Participants were asked about their support needs while providing care, how and when they preferred to receive support, and the perceived barriers and facilitators to addressing their support needs. Responses were analyzed using the conventional content analysis method. Results: Family caregivers wished for support in relation to 3 domains: decision‐making in the face of uncertainty, information about death and dying, and current and anticipated emotional distress. They identified 3 barriers to receiving support: the organization of cancer care around the patient, rather than the family; the timing of information provision; and caregivers' tendency to dismiss their own needs. Caregivers expressed a strong need for caregiver‐specific support. Conclusion: This study allowed us to identify caregiver‐perceived intervention needs, barriers to access and continuity of intervention, and suggestions for intervention design. Implications: This information is of value to inform the design of interventions for this population.
Objective: The primary aim of this qualitative study was to explore myeloma carers/caregivers experience during outpatient-based oral treatment for patients with multiple myeloma (MM). Data Sources: Literature review. In-depth, open-ended interviews of seven purposively selected caregivers of MM patients in the United Kingdom. Conclusion: Findings showed that carers were involved in practical and emotional caregiving activities, assisting the patient with managing complex oral combination treatments, and monitoring side effects. Care-giving activities continued after treatment, and experiences were described within the context of the MM journey and fear and uncertainty about the future. Caregivers also experienced a range of emotions, which they often kept hidden from the MM patients and other family members. Difficulties balancing caring responsibilities, particularly for those with jobs, were expressed. Implications for Nursing Practice: Nurses need to understand the importance of considering carers' involvement when assessing patients, and the need to address caregivers' continuing support and information needs. Problems navigating health and social care processes should be anticipated, and nurses can direct the carers to appropriate resources to meet their needs.
Increasing attention is being paid to specific difficulties experienced by bereaved family caregivers (FCs). Limited capacity within health and social care structures results in high intensity of informal caregiving. The focus of recent research is the identification of specific predictors of adverse FC outcomes, in order to identify those FCs who will benefit most from intervention and support. Research is challenged by multiple influencing and confounding variables. This study aimed to evaluate factors of care associated with higher grief intensity in bereaved adult–child (AC‐FCs) and spousal FCs (S‐FCs). Data from the Qualycare study, a mortality follow‐back study of bereaved FCs of patients who died of cancer, was analyzed. Four hundred eighty‐four patient–FC dyads were included: 246 AC‐FCs and 238 S‐FCs. S‐FCs received more formal (SPC) (p = 0.026), and AC‐FCs more informal (p < 0.001), support. AC‐FCs were more likely to continue to work while caregiving (p < 0.001). Patients with AC‐FCs were more likely to spend time in and die in a nursing home (p < 0.001). Higher grief intensity was associated with higher caregiving intensity (p < 0.001), as well as other factors. AC‐FCs whose relative died in NH experienced significantly lower grief intensity (p < 0.001). Intensity of caregiving predicted 11.6% of variance in grief intensity for AC‐FCs compared to 0.5% for S‐FCs. The ‘relief model’ of bereavement is relevant for AC‐FCs. The support needs of AC‐FCs and S‐FCs differ. AC‐FCs should be targeted for practical supports and interventions, in order to support home‐death, if desired by patient and FC, and optimize bereavement outcomes.
Background: Modern treatment for multiple myeloma (MM) has improved disease control and prolonged survival; thus, maintenance of quality of life (QoL) is considered a great concern for MM patients and their caregivers. The purpose of this study was to identify dyadic associations between stress appraisal and the QoL of patients with MM and their caregivers in Korea. Methods: A total of 102 MM patient‐caregiver dyads participated in this study. They independently reported their stress appraisal and QoL. The study was guided by a transactional model of stress and coping, and analyzed by using the actor‐partner interdependence model. Results: The results revealed good data adjustment with acceptable indices: χ2 = 6.211 (df = 6), CFI = 0.999, TLI = 0.994, RMSEA = 0.019, and SRMR = 0.043. MM patients' QoL were significantly correlated with caregivers' QoL. The stress appraisals of patients and caregivers mutually influenced each other's QoL. The patients' illness perception and the caregivers' burden were strong predictors for their QoL. The self‐efficacy of patients and caregivers was also associated with their QoL. Conclusions: Our findings suggest that the way patients and caregivers perceive and respond to stress plays a significant role in their QoL during the treatment experience. Interventions designed to reconstruct negative perspectives and improve self‐efficacy may help both patients and caregivers to improve their QoL.
Purpose/Objectives: To explore family caregivers’ perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life. Research Approach: Longitudinal, qualitative descriptive design. Setting: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon. Participants: 13 family caregivers with a mean age of 56 years (range = 22–68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11). Methodologic Approach: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis. Findings: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related. Interpretation: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory. Implications for Nursing: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.
Objective: To systematically review the effect of psychosocial interventions on improving QoL, depression and anxiety of cancer caregivers. Methods: We conducted a systematic review of psychosocial interventions among adult cancer caregivers published from 2011 to 2016. PsycINFO, PubMed, Proquest, Cochrane Library, Embase, Applied Social Sciences Index and Abstracts (ASSIA), Cumulative Index to Nursing and Allied Health Literature, Social Sciences Citation Index (SSCI) and EBSCO, China National Knowledge Infrastructure (CNKI) and WANFANG were searched. Inclusion criteria were: randomized controlled trails (RCTs); psychosocial intervention to cancer caregivers; psychosocial health indicators including quality of life, depression or anxiety. Results: 21 studies out of 4,666 identified abstracts met inclusion criteria, including 19 RCTs. The intervention modes fell into the following nine categories: family connect intervention, self-determination theory-based intervention (SDT), cognitive behavioral therapy (CBT), emotion-focused therapy (EFT), comprehensive health enhancement support system (CHESS), FOCUS programme, existential behavioral therapy (EBT), telephone interpersonal counseling (TIP-C), problem-solving intervention (COPE). Conclusion: paired-intervention targeting self-care and interpersonal connections of caregivers and symptom management of patients is effective in improving quality of life and alleviating depression of cancer caregivers while music therapy is helpful for reducing anxiety of cancer caregivers.
Care work is often feminised and invisible. Intangible components of care, such as emotional labour, are rarely recognised as economically valuable. Men engaging in care work can be stigmatised or simply made invisible for non-conformance to gender norms (Dworzanowski-Venter, 2008). Mburu et al (2014) and Chikovore et al (2016) have studied masculinity from an intersectional perspective, but male caregiving has not enjoyed sufficient intersectional focus. Intersectional analysis of male caregiving has the twin benefits of making 'women's work' visible and finding ways to keep men involved in caring occupations. I foreground the class-gender intersection in this study of black male caregivers as emotional labourers involved in palliative care work in Gauteng (2005-2013). Informal AIDS care and specialist oncology nursing are contrasting cases of male care work presented in this article. Findings suggest that caregiving men interviewed for this study act in gender-disruptive ways and face a stigmatising social backlash in post-colonial South Africa. Oncology nursing has a professional cachet denied to informal sector caregivers. This professional status acts as a class-based insulator against oppressive gender-based stigma, for oncology nursing more closely aligns to an idealised masculinity. The closer to a 'respectable' middle-class identity, or bourgeois civility, the better for these men, who idealise traditionally white male formal sector occupations. However, this insulating effect relies on a denial of emotional aspects of care by male cancer nurses and a lack of activism around breaking down gendered notions of care work. Forming a guild of informal sector AIDs caregivers could add much-needed professional recognition and provide an organisational base for gender norm disruption through activism. This may help to retain more men in informal sector caregiving roles and challenge the norms that are used to stigmatise male caregiving work in general.
Background: Family caregivers (broadly defined as family and friends) experience multiple concurrent transitions when caring for a person with advanced cancer. Aims: To (a) explore the transition experience of family caregivers caring for persons with advanced cancer living in the community, (b) describe potential triggers for transitions, (c) identify what influences this experience, and (d) develop a conceptual framework of their transition experience. Design: Sandelowski and Barroso’s methodology for synthesizing qualitative research included (a) a comprehensive search of empirical literature, (b) quality appraisal of qualitative studies, (c) classification of studies, and (d) synthesis of the findings. Data sources: Literature was sourced from six electronic data bases. Inclusion criteria were as follows: (a) published qualitative studies (and mixed-method designs) of the caregiving experience of family caregivers of community-living persons with advanced cancer at the end of life, (b) participants (caregivers and care recipients) of 18 years of age and above, (c) studies published in English in any country, and (d) studies published between 2004 and 2014. Results: A total of 72 studies were included in the metasynthesis. Family caregivers experience a “life transition” whereby their lives are permanently altered. The participants described the process of redefining normal which consisted of coming to terms with their situation and connecting with others. Outcomes of these processes were as follows: (a) maintaining a sense of personhood, (b) reframing hope, (c) maintaining self-efficacy, (d) finding meaning, and (e) preparing for the death of their care recipient. Conclusion: The findings provide a framework to guide the development of supportive programs and future research.
Primary brain tumors (PBTs) are rare but have a great impact on both patient and family caregiver wellbeing. Supporting caregivers can help them to continue their caregiving activities to maintain the patients’ best possible level of quality of life. Efforts to improve PBT caregiver wellbeing should take into account country- or culture-specific differences in care issues and supportive care needs to serve larger caregiver groups. We aimed to explore PBT caregivers’ satisfaction with the current supportive care provision, as well as their thoughts on monitoring their care issues with both paper-based and digital instruments. Twelve PBT caregivers were interviewed in the United States. The semi-structured interviews were transcribed verbatim and analyzed by two coders independently. Data were combined with those collected in the Netherlands, following similar methodology (N = 15). We found that PBT caregivers utilize both formal and informal support services, but that those who experience more care issues would prefer more support, particularly in the early disease phase. Keeping track of care issues was thought to provide more insight into unmet needs and help them find professional help, but it requires investment of time and takes discipline. Caregivers preferred a brief and easy-to-use ‘blended care’ instrument that combines digital monitoring with personal feedback. The present study shows that the preferences of family caregivers in neuro-oncology toward keeping track of care issues are likely not heavily influenced by country- or culture-specific differences. The development of any instrument thus has the potential to benefit a large group of family caregivers.
Purpose: Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective.
Methods: Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated.
Results: ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30–90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but not with a higher level of cognitive disorders in multivariate analyses. Other independent associated factors were bladder dysfunction and co-residency for objective burden and working and a poor social network for subjective burden. The 56 working ICs made work arrangements (75 %) that impacted their wages (36 %) and careers (30 %). Financial burden due to uncompensated caregiving hours for Activities of Daily Living had a mean monetary value from Є677(RCM) to Є1683(OCM) per month (i.e., ranging from Є8124 to Є20196 per year).
Conclusions: IC burden is multidimensional. Greater provision of formal care, more IC support programs, and economic interventions targeting IC employment and finances are needed.
Background The purpose of this paper is to analyse the utilization of formal and informal home care among older patients with cancer (OCP) and to compare this with middle-aged patients with cancer (MCP) and older patients without cancer (ONC). Additionally, we examined predictors of transitions towards formal care one year after a cancer diagnosis. Methods OCP and MCP had to be recruited within three months after a cancer diagnosis and have an estimated life expectancy over six months. ONC consisted of patients without known cancer, seen by the general practitioner. Formal and informal care were compared between the patient groups at baseline, i.e. shortly after a cancer diagnosis and changes in care were studied after one year. Results A total of 844 patients were evaluable for formal care at baseline and 469 patients (56%) at follow-up. At baseline, about half of older adults and 18% of MCP used formal care, while about 85% of cancer patients and 57% ONC used informal care. Formal care increased for all groups after one year though not significantly in OCP. The amount of informal care only changed in MCP which decreased after one year. Cancer-related factors and changes in need factors predict a transition towards formal care after a cancer diagnosis. Conclusions A cancer diagnosis has a different impact on the use of formal and informal care than ageing as such. The first year after a cancer diagnosis is an important time to follow-up on the patients’ needs for home care.
Objectives: This study will explore how help is constructed during and following radiotherapy for patients with cancer.
Methods: Grounded theory methods were used in the study to explore the way in which family members and friends constructed a role for themselves in relation to patients receiving radiotherapy. A total of 22 helpers were interviewed. Patients were being treated for a range of cancers including breast, prostate, colorectal, and head and neck.
Results: Respondents in this study consistently defined themselves as “helpers” rather than “carers.” While radiotherapy as a treatment modality was mostly seen as noninvasive, the cancer diagnosis cast a long shadow over the lives of helpers and patients creating a separation in longstanding relationships. Helpers experienced this separation as “otherness.” Help became an important vehicle for bridging this separation. Individuals developed different ways of knowing about the patient as the basis for providing help. Two different types of help were identified in this study: the behind the scenes, largely invisible work that helpers undertook to help the patient without their knowledge and the explicit visible help that was much more commonly negotiated and discussed between helpers and patients.
Conclusions: The study provides the basis for a greater understanding on the part of professionals into the impact of diagnosis and radiotherapy treatment on family and friends. In doing so, the study identifies opportunities for the experience of helpers to be recognised and supported by professionals.
Purpose: This study evaluated the humanistic burden on caregivers of patients with advanced non-small cell lung cancer (aNSCLC) as the disease progresses.; Methods: Data were drawn from a cross-sectional study of patients with aNSCLC and their caregivers conducted in France, Germany, and Italy between 2015 and 2016. Data were collected by medical chart review and patient and caregiver questionnaires. The EuroQol five-dimension three-level (EQ-5D-3L) was used to evaluate patient and caregiver health status. Caregivers also completed the Work Productivity and Activity Impairment (WPAI) questionnaire and Zarit Burden Interview (ZBI).; Results: The population for the analysis consisted of 427 caregivers (mean age 53.5 years; 72.6% female; 54.9% spouse; 36.2% in full-time employment) and 427 matched patients (mean age 66.2 years; 68.6% male). Most (69.5%) patients were receiving first-line therapy for advanced disease. Patients' caregivers provided a mean of 29.5 h of support per week. Significant differences in EQ-5D-3L scores were observed between caregivers of patients receiving first and later lines of therapy in France (0.87 vs. 0.78; p = 0.0055). Among employed caregivers, overall work impairment was considerable and ranged from 21.1% in Germany to 30.4% in France and 29.7% in Italy. Caregivers of patients receiving later lines of therapy in France rated their own health status as significantly worse than did those caring for patients receiving first-line therapy (82.7 vs. 72.9; p = 0.0039).; Conclusions: Informal caregivers provided the majority of support for patients with advanced NSCLC and their caregiving activities impose a significant humanistic burden.
In this article, we examine the challenges of informal carers supporting someone with dementia and cancer within the United Kingdom. Interviews were conducted with seven informal carers using a narrative approach to examine the construction of their experiences. Our findings demonstrate how informal carers navigate a path through complex cancer treatments and support their relative. A cancer diagnosis often requires multiple treatment visits to an oncology center, and this can be challenging for carers. They find that they need to coordinate and manage both health professionals and their relative in terms of getting access to appropriate services and support. This process can be particularly challenging in the presence of a cognitive impairment that often demands effective communication with different agencies. Carers frequently experienced multiple challenges including dealing with the stigma that is characteristic of the dementia experience and the added complexity of negotiating this within a cancer care context.
Background: This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.; Methods: Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.; Results: Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1-84.4%), fatigue (18-76.3%), and "being informed about benefits and side-effects of treatment" (4-66.7%). The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26-100%) and care-related information (21-100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.; Conclusion: Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
Purpose: The transition out of acute cancer treatment has been identified as a time of stress and uncertainty for cancer survivors, but little is known about how caregivers fare during this period. In this paper, we discuss caregiving work up to and including transition from initial care and the needs of caregivers during transition and beyond.; Methods: We held four focus groups with breast, prostate, and colorectal cancer survivors who had completed treatment with intent to cure and two with caregivers for the same population. Participants were affiliated with either an urban academic or rural community cancer center. The discussions focused on cancer-related experiences and needs during the transition out of acute cancer care.; Results: Focus groups included 47 people: 28 survivors and 19 caregivers. Three key caregiving themes identified the significance of support for the patient in the clinic, support for the patient in the home, and for caregiver self-care.; Conclusions: Discussions revealed aspects of caregiving that created difficulties for the caregiver themselves or between the caregiver and the cancer survivor. Caregiver experiences and needs may warrant explicit attention as survivors and caregivers are adjusting to a "new normal" that is no longer centered on getting through treatment.; Implications For Cancer Survivors: Patients and informal caregivers are often conceptualized as a "unit of care"; consideration of the needs of both is important for the provision of appropriate and effective health services.
Objective: Advanced cancer patients' prognostic understanding is associated with completion of Do Not Resuscitate (DNR) orders, which often represent engagement in advance care planning (ACP). Given caregivers' critical roles in patient decision-making about ACP and end-of-life care, caregivers' prognostic understanding may have a large additive effect. The present study examined the association between the main and interactive effects of advanced cancer patient and caregiver prognostic understanding on DNR order completion.; Methods: Data were analyzed from a combined dataset of 2 sequential multi-institutional, longitudinal cohort studies of patients with advanced cancer and their informal caregivers (n = 279 dyads) from 2002 to 2008 (Coping with Cancer 1) and 2010 to 2015 (Coping with Cancer 2). Patients' and caregivers' prognostic understanding regarding life-expectancy (≤ 12 months [prognostic understanding], >12 months [lack of prognostic understanding]) was assessed. DNR order completion was assessed through self-report and confirmed through cross-checking with medical records.; Results: Multivariable modeling of the main and interactive effects revealed the interactive effect, but not the individual effects, of patients' and caregivers' prognostic understanding was significantly associated with higher odds of patients' DNR order completion, adjusting for potential confounds (AOR = 5.89, P = 0.04). For dyads in which both the patient and caregiver had prognostic understanding regarding life expectancy of ≤12 months, 70.7% of patients had completed DNR orders compared with 31.6% to 38.9% in which 1 or both lacked prognostic understanding.; Conclusions: Findings highlight the need for ensuring accurate patient and caregiver prognostic understanding in increasing DNR order completion, which may provide a framework for improving engagement in ACP more broadly.
Background: Despite being a common event in the course of an advanced cancer illness, there is little understanding of patients' perceptions of hospital Emergency Department presentations.; Aim: To explore the experiences and perceptions of Emergency Departments held by patients with advanced cancer and their informal caregivers.; Design: Cross-sectional study involving semi-structured interviews with advanced cancer patients and their informal caregivers. Qualitative data analysis was underpinned by a phenomenological approach utilising a data-driven inductive thematic frame.; Setting/participants: In total, 19 patients with advanced cancer who presented to Emergency Departments in the previous 6 months and 10 informal caregivers from an Australian public hospital and community palliative care service were interviewed.; Results: Patients reported that Emergency Department presentations were largely prompted by worsening symptoms or were a means to expedite hospital admission, with many instructed to attend by their health care provider. The experience in the Emergency Department was described as a time of anxiety and uncertainty with concerns over communication, the general environment and delays in the symptom management highlighted. Long waits were common. Despite this, patients described relief at receiving care. While the Emergency Department was viewed as a safety net for the health system, many believed advanced cancer patients should have alternative options.; Conclusion: Relatively simple changes of regular communication updates and early symptom relief would improve patient experience of Emergency Department care. However, since an Emergency Department presentation is frequently serving as a default to access medical care, a significant re-orientation of the health care system is required to meet patient needs.
Objective: The aim of our study was to identify the influence of such psychological factors as emotional intelligence and perceived competence on caregiver burden in those who care for patients with advanced cancer.; Method: A total of 50 informal caregivers completed self-report assessments of resilience, perceived competence, emotional regulation, positive aspects of care, emotional distress, and burden. We conducted a quantitative study with a cross-sectional design. Descriptive statistics were obtained. Associations between the different variables were assessed using nonparametric and multiple regression analyses.; Results: Participants were mainly female (88%) and had an average of 20 months of caregiving. Their mean age was 47 years (range = 20-79). More than half of scored high on resilience, positive aspects of caring, and emotional distress, moderately on perceived competence, and low on burden. Most caregivers used cognitive restructuring and social support as coping strategies. Inverse negative correlations were observed among emotional distress, emotional state, and burden with perceived competence and positive aspects of caring (p < 0.05). Significant differences were obtained for emotional distress, cognitive restructuring, and resiliency. Multiple regression analyses demonstrated that perceived competence, resiliency, and positive aspects of caring were the main predictors of burden.; Significance Of Results: Resilience, perceived competence, emotional regulation, and positive aspects of care constitute protective factors against caregiver burden. Taken together, these aspects should be promoted by the healthcare staff in order to facilitate caregiver adaptation and well-being.
Background: Recent research among cancer survivors suggests that health behaviors and coping are intertwined, with important implications for positive behavior change and health. Informal caregivers may have poor health behaviors, and caregivers' health behaviors have been linked to those of survivors.; Aims: This hypothesis generating study assessed the correlations among health behaviors and coping strategies in a population of lung and colorectal cancer caregivers.; Method: This cross-sectional study used data from the Cancer Care Outcomes Research & Surveillance Consortium. Caregivers ( n = 1,482) reported their health behaviors, coping, and sociodemographic and caregiving characteristics. Descriptive statistics assessed the distribution of caregivers' health and coping behaviors, and multivariable linear regressions assessed the associations between health behaviors and coping styles.; Results: Many informal caregivers reported regular exercise (47%) and adequate sleep (37%); few reported smoking (19%) or binge drinking (7%). Problem-focused coping was associated with greater physical activity and less adequate sleep (effect sizes [ESs] up to 0.21, p < .05). Those with some physical activity scored higher on emotion-focused coping, while binge drinkers scored lower (ES = 0.16 and 0.27, p < .05). Caregivers who reported moderate daily activity, current smoking, binge drinking, and feeling less well rested scored higher on dysfunctional coping (ES up to 0.49, p < .05).; Discussion: Health behaviors and coping strategies were interrelated among informal cancer caregivers. The relationships suggest avenues for future research, including whether targeting both factors concurrently may be particularly efficacious at improving informal caregiver self-care.; Conclusion: Understanding the link between health behaviors and coping strategies may inform health behavior research and practice.
Purpose: With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care.; Methods: A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses.; Results: In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers.; Conclusion: By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy.
Introduction: Cancer is a chronic disease that requires long-term treatment and care. Caregivers of cancer patients are at greater risk of developing depression than the general population. The effect of caregivers' cognitive flexibility on depression and anxiety has not been studied. We aimed to investigate the social characteristics, burden level and cognitive flexibility of caregivers of advanced cancer patients, and determine the relationship between these factors and depression and anxiety. We hypothesised that factors such as cognitive flexibility and caregiver burden level significantly predict anxiety and depression.; Methods: The study included 69 primary informal caregivers of cancer patients of Stage 4 severity. Methods utilised included diagnostic semi-structured interviews, Beck Depression Inventory (BDI), Beck Anxiety Inventory (BAI), Zarit Caregiver Burden Inventory and cognitive flexibility inventory.; Results: BDI scores were found to be statistically higher in caregivers who cared for men compared to those who cared for women (20.44 ± 2.06 vs. 13.29 ± 1.81; t = 2.60; p = 0.01). BDI mean scores were statistically lower in caregivers who received help with caregiving compared to those who did not (t = 2.62; p = 0.01). Cognitive flexibility level, burden level, and lack of social support were found to be predictors of caregiver depression.; Conclusion: The study showed that individuals with low cognitive flexibility levels are more likely to have depressive and anxiety symptoms. Based on our findings, we opine that evaluations of caregivers' cognitive strategies and social support are needed to determine the risk of depression in caregivers of cancer patients.
Despite the abundance of studies concerning caring for patients with cancer, less is known about caring for an older cancer survivor (≥65 years). We aimed to systematically gather literature about the psychosocial well-being of caregivers of older cancer survivors and to identify possible risk factors for developing psychosocial problems. Fourteen articles met the following inclusion criteria: articles about (a) cancer, (b) informal caregivers, (c) older survivors and a (d) curative setting. After critical appraisal, nearly all were considered to be of moderate-to-strong quality. This results mainly from the specific study population, the valid and reliable measurement instruments and the appropriate statistical methods used in the articles. Main outcomes were burden, depression, anxiety, self-esteem, distress, communication issues, stress and QoL. For all these outcomes, measurement instruments and timing of measurements vary. Also, the results on studied predictors vary widely or not all of them were described in the reviewed articles. There seems to be a higher prevalence of distress, lower QoL and more anxiety in informal caregivers of older cancer survivors compared with the general population, but all were understudied. Based on these results and more focused future research, specific and qualitative support for this group of caregivers can be developed.
Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. ; Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.; Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. ; Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. ; Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.
Objective: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory.; Methods: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews.; Results: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs.; Conclusions: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.
Background/objective: Informal caregivers of patients with advanced cancer experience a challenging time, especially while caring for the patient at home. The aim of this study is to compare experiences, perceived burdens, and needs during home care of informal caregivers of brain tumor patients and informal caregivers of non-brain tumor patients.; Methods: 28 informal caregivers (17 brain tumor group, 11 non-brain tumor group) participated in this study. Semi-structured interviews were conducted to gather information retrospectively. Data was analyzed using principles of thematic analysis method.; Results: The results support existing evidence that the themes assessment of the situation, dealing with the situation, effects of the situation, and support by others are of importance to all informal caregivers. Caregivers in the brain tumor group put more emphasis on information and perception of the situation by others than caregivers in the non-brain tumor group.; Conclusion: The emerging need for information of caregivers and the effects for caregivers of changes in the perception of the situation by others should be addressed to better support informal caregivers of brain tumor patients.
Background: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes.; Methods: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed.; Results: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains.; Conclusions: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations.; Trial Registration: ACTRN12613000731796 ; prospectively registered on 02/07/2013.;
Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.
Cancer caregivers often experience significant challenges in their motivation and ability to comfort cancer survivors, particularly in a spousal or romantic context. Spousal cancer caregivers have been known to report even greater levels of burden and distress than cancer sufferers, yet still take on the role of acting as an informal caregiver so they can attend to their partner's needs. The current study tested whether a theoretical model of supportive outcomes-the dual-process model of supportive communication-explained variations in cancer caregivers' motivation and ability to create high-quality support messages. The study also tested whether participant engagement with reflective journaling on supportive acts was associated with increased motivation or ability to generate high-quality support messages. Based upon the dual-process model, we posited that, following supportive journaling tasks, caregivers of spouses currently managing a cancer experience would report greater motivation but also greater difficulty in generating high-quality support messages, while individuals caring for a patient in remission would report lower motivation but greater ability to create high-quality support messages. Findings provided support for these assertions and suggested that reflective journaling tasks might be a useful tool for improving remission caregivers' ability to provide high-quality social support to survivors. Corresponding theoretical and applied implications are discussed.
Background: Palliative care needs are increasing as more people are dying from incurable diseases. Healthcare costs have been reported to be highest during the last year of life, but studies on the actual costs of palliative care are scarce.; Aim: To explore the resource use and costs of palliative care among end-stage breast, colorectal and prostate cancer patients after termination of life-prolonging oncological treatments, that is, during the palliative care period.; Design: A real-life longitudinal register- and questionnaire-based study of cancer patients' resource use and costs.; Participants: In total, 70 patients in palliative care with no ongoing oncological treatments were recruited from the Helsinki University Hospital or from the local hospice. Healthcare costs, productivity costs and informal care costs were included.; Results: The mean duration of the palliative care period was 179 days. The healthcare cost accounted for 55%, informal care for 27% and productivity costs for 18% of the total costs. The last 2 weeks of life contributed to 37% of the healthcare cost. The costs of the palliative care period were higher in patients living alone, which was mostly caused by inpatient care ( p = 0.018).; Conclusion: The 45% share of indirect costs is substantial in end-of-life care. The healthcare costs increase towards death, which is especially true of patients living alone. This highlights the significant role of caregivers. More attention should be paid to home care and caregiver support to reduce inpatient care needs and control the costs of end-of-life care.
Objective: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient's functional status and symptoms.; Method: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used. The relationship between comfort scores and independent variables was calculated by multiple linear regression.; Results: Fifty informal caregivers participated in the study - 80% were female, 32% were 60 years old or older, 36% were children of the patient, 58% had paid work and 60% did not have help in the care. The mean overall comfort was 4.52 points. A better functional status of the patients was associated with higher levels of comfort of the caregivers. Older caregivers who received helped in the care activities presented higher comfort scores.; Conclusion: The level of comfort of caregivers of cancer patients receiving palliative care was associated with socio-demographic variables and patients' functional status and symptoms.
Background: Among a sample of patient-informal caregiver dyads in the specific context of new diagnoses of high-grade glioma in the time-frame between diagnosis and the third month following diagnosis, we examine whether the coping strategies implemented by the patients and their caregivers influenced their own quality of life (QoL) and the QoL of their relatives.; Methods: Thirty-eight dyads with patients having recent diagnoses of high-grade glioma were involved in this longitudinal study. The self-reported data include QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology Quality of Life), and coping strategies (BriefCope). Data were collected at T1 corresponding to the time-frame between diagnosis and postsurgical treatment initiation and T2 corresponding to the 3-month post-inclusion follow-up.; Results: Coping strategies based on social support and avoidance were the least used at baseline and the 3-month follow-up, both for patients and caregivers. At the 3-month follow-up, the use of social support at baseline was significantly related to lower scores of QoL for the patients and with higher QoL for the caregivers. For the patient, the use of problem-solving or positive thinking at baseline was not related to his/her QoL, while it was related to more satisfactory QoL scores for the caregiver. The use of avoidance at baseline was linked to a higher 3-month QoL for the patients and a lower 3-month QoL for the caregivers. Using the specific dyadic analyses (actor-partner interdependence model), the 3-month patient's QoL was lower (β = - 0.322; p = 0.03) when the patient mobilized the social support strategy at baseline, but was higher(β = 0.631; p < 10- 3) when his/her informal caregiver used this strategy. After adjustment for sex, age, and baseline PGI score, the link between high use of the social support strategy at baseline by the caregiver and the patient's 3-month QoL, remained present (positive partner effect; β =0.675; p < 10- 3).; Conclusion: The QoL for patients and their informal caregivers since the time of diagnosis is directly related to the use of coping strategies based on social support at time of diagnosis.
Purpose: The cancer caregiving literature focuses on the early phases of survivorship, but caregiving can continue for decades when cancer creates disability. Survivors with an ostomy following colorectal cancer (CRC) have caregiving needs that may last decades. Mutuality has been identified as a relationship component that can affect caregiving. This paper discusses how mutuality may affect long-term ostomy caregiving.; Methods: We conducted semi-structured, in-depth interviews with 31 long-term CRC survivors with ostomies and their primary informal caregivers. Interviewees were members of an integrated health care delivery system in the USA. We used inductive theme analysis techniques to analyze the interviews.; Results: Most survivors were 71 years of age or older (67%), female (55%), and with some college education (54%). Two thirds lived with and received care from spouses. Caregiving ranged from minimal support to intimate assistance with daily ostomy care. While some survivors received caregiving far beyond what was needed, others did not receive adequate caregiving for their health care needs. Low mutuality created challenges for ostomy caregiving.; Conclusions: Mutuality impacts the quality of caregiving, and this quality may change over time, depending on various factors. Emotional feedback and amplification is the proposed mechanism by which mutuality may shift over time. Survivorship care should include assessment and support of mutuality as a resource to enhance health outcomes and quality of life for survivors with long-term caregiving needs and their caregivers. Appropriate questionnaires can be identified or developed to assess mutuality over the survivorship trajectory.
Caregiving induces chronic stress with physical and psychological impact on informal caregivers health. Therefore, subjective and objective indicators are needed for the early diagnosis of pathologic stress to prevent the risk of developing stress-related diseases in caregivers. Our aim was to assess the self-perceived stress, that is, how and how much the stressor affects the individual, through endocrine, metabolic, and immunologic biomarkers levels in geriatric and oncologic informal caregivers. Informal caregivers and non-caregivers were invited to participate in a cross-sectional study at the Clinic Hospital of Barcelona. Demographic and lifestyle characteristics, self-perceived stress (Perceived Stress Scale, State-Trait Anxiety Inventory and Stress Visual Analogue Scale), and biomarkers (copeptin, glucose, glycated hemoglobin, low-density lipoprotein cholesterol (LDL), high-density lipoprotein cholesterol (HDL), cholesterol, triglycerides, α-amylase, cortisol, tumor necrosis factor (TNF-α), and Interleukins (IL-6 and IL-10)) were evaluated. Descriptive and non-parametric statistical data analysis were performed. Fifty-six subjects (19 non-caregivers, 17 geriatric caregivers, and 20 oncologic caregivers) participated. Median age (IQR) was 57 years (47-66) and 71.46% were women. Self-perceived stress was higher in oncologic caregivers than geriatric caregivers in all psychometric test analyzed (Wilcoxon Rank Sum test, p value < .05). Glucose concentrations and glycated hemoglobin levels differed statistically among groups (Kruskal-Wallis test (K-W tests), p value < .05), even though the median levels were not clinically relevant. Levels of other biomarkers did not differ significantly (K-W tests, p value > .05). These findings suggest that perceived stress is not homogeneous in the caregivers community and thus these two groups could be differentiated. These results provide the baseline information to initiate social actions addressed to each group of caregivers to increase their wellbeing.
Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance. The aim of this study was to investigate the SDM preference and the satisfaction with and need for information among newly diagnosed HM patients and their informal caregivers, in relation to sociodemographic and clinical factors, cognitive coping style, and health related quality of life.; Methods: Newly diagnosed patients and their caregivers were asked to complete the Hematology Information Needs Questionnaire, the Information Satisfaction Questionnaire, and the Threatening Medical Situations Inventory. Medical records were consulted to retrieve sociodemographic and clinical factors and comorbidity by means of the ACE-27.; Results: Questionnaires were completed by 138 patients and 95 caregivers. Shared decision-making was preferred by the majority of patients (75%) and caregivers (88%), especially patients treated with curative intent (OR = 2.7, P = .041), and patients (OR = 1.2, P < .001) and caregivers (OR = 1.2, P = .001) with a higher monitoring cognitive coping style (MCCS). Among patients, total need for information was related to MCCS (P = .012), and need for specific information was related to MCCS and several clinical factors. Importantly, dissatisfaction with the information they received was reported by a third of the patients and caregivers, especially patients who wanted SDM (χ2 = 7.3, P = .007), and patients with a higher MCCS (OR = 0.94, P = .038).; Conclusion: The majority of HM patients want to be involved in SDM, but the received information is not sufficient. Patient-tailored information is urgently needed, to improve SDM.
Background: Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support. This study examined associations between the receipt of medical/nursing skills training and the caregiver burden as well as the mediation of caregiving confidence on this relationship in a sample of caregivers of lung and colorectal cancer patients.; Methods: Caregivers who had been identified by cancer patients in the Cancer Care Outcomes Research and Surveillance consortium completed a questionnaire assessing the care provided, the type of medical/nursing skills training received, the burden (measured with the modified short-form Zarit Burden Interview), and the confidence in caring for their patient's physical needs. Regression models that had been adjusted for sociodemographic, caregiver, and care recipient characteristics assessed the relationship between training received and burden, and a mediation analysis assessed the role of confidence in this relationship.; Results: Six hundred forty-one caregivers performed some type of medical/nursing task, with 59% (n = 377) reporting that they did not receive training for all the care provided. Caregivers reported moderate levels of burden (mean summary score, 32.07; standard deviation, 12.66; possible range, 14-70), and a lack of receipt of training was associated with greater levels of burden (b = 2.60; standard error, 0.98; P = .01). Confidence partially mediated the relation between training and burden (Sobel's t = 1.90; P = 0.03).; Conclusions: As the number of cancer patients and caregivers increases, understanding how best to reduce the caregiver burden is necessary. Skills training is a potential area for interventions, but research on how best to provide training for caregivers (ie, the content, mode of delivery, and timing) is needed.
Background: From a health service perspective, informal care is often viewed as a potentially cost-effective way of transferring costs out of the formal healthcare sector. However, informal care is not a free resource.; Objective: Our objective was to assess the impact of alternative valuation methods and key assumptions on the cost of informal care.; Methods: Informal carers who assisted in the care of a head and neck cancer survivor for at least 1 year were sent a postal questionnaire during January-June 2014 requesting information on time spent on caring tasks in the month prior to the survey. Time was costed using the opportunity cost approach (OCA; base-case) and the generalist (GRCA) and specialist (SRCA) replacement cost approaches. The impact on results of how household work and informal carers not in paid employment are treated were investigated.; Results: We estimated a cost of €20,613 annually in the base case (OCA - mean wage) for informal care. The GRCA and SRCA equivalent costs were 36% (€13,196) and 31% (€14,196) lower, respectively. In the extreme scenario of applying a 'zero' opportunity cost to carers not in paid employment, costs fell by 67% below the base case.; Conclusion: While the choice of costing method is important for monetary valuation, the sociodemographic and economic characteristics of the underlying population can be equally so. This is especially important given the heterogeneous treatment of older carers, female carers and carers not in paid employment in the OCA. To limit this, we would suggest using the SRCA to value informal care across heterogeneous carer populations.
Purpose/objectives: To determine the effects of delivering a reflexology intervention on health outcomes of informal caregivers, and to explore whether intervention effects are moderated by caregiver characteristics. ; Design: Two-group, randomized clinical trial.; Setting: Eight oncology clinics in urban and rural regions of Michigan and Illinois.; Sample: 180 informal caregivers of patients with advanced breast cancer.; Methods: Caregivers were randomized to provide reflexology to individuals with cancer during a four-week period or to attention control. Data collection occurred at baseline and at weeks 5 and 11. Linear mixed-effects modeling was used to test intervention effects among all participants and the effects of the number of sessions delivered in the reflexology group.; Main Research Variables: Caregiver characteristics; psychological, physical, and social outcomes.; Findings: Caregiver fatigue in the reflexology group was reduced compared to controls at weeks 5 (p = 0.02) and 11 (p = 0.05). No differences were found for anxiety, depression, pain, physical function, sleep disturbance, satisfaction with participation in social roles, and pain interference between caregivers who delivered reflexology and those who did not.; Conclusions: Informal caregivers who provided reflexology to individuals with cancer did not have negative psychological, physical, or social outcomes. Fatigue levels were lower among caregivers who provided reflexology. ; Implications For Nursing: Clinicians need to be aware that providing supportive care interventions, such as reflexology, to reduce symptom burden does not increase negative outcomes on informal caregivers who provide this care, and it may even lead to reduced fatigue.
Head and neck cancer is a serious form of cancer that can generate substantial physical and psychosocial morbidity. Informal caregivers can help patients to manage head and neck cancer and its emotional impacts, both during and after treatment. Caregivers, however, can experience considerable stress as a result of their caring activities. Supportive relationships can protect caregivers from psychosocial strain. Thirty-one head and neck cancer caregivers were interviewed about their experiences of accessing social support from their social networks; difficulties that they experienced accessing this support; and strategies that they used to address these difficulties. Results suggest that head and neck cancer caregivers strongly value social support, but can find it difficult to obtain, and a number of them experience socially negative responses from their networks. Some carers attempt to answer or supplement support deficiencies by turning to non-human coping supports, such as pets, spiritual figures or medication. Implications for theory and practice are discussed.
Integrated early palliative care (EPC) improves quality of life and reduces psychological distress in adult patients with cancer and caregivers, but attitudes toward EPC have been poorly studied. We aimed to investigate attitudes toward EPC in a nationwide survey of patients with cancer and caregivers. From July to October 2016, we administered nationwide questionnaires examining attitudes toward EPC in patients with cancer (<italic>n</italic> = 1001) and their families (<italic>n</italic> = 1006) from 12 Korean hospitals. When an individual considered EPC unnecessary, the reasons were collected and analyzed. Factors associated with perception of EPC were examined. A majority of patients (84.5%) and caregivers (89.5%) had positive attitudes toward EPC. The most common reasons for deeming EPC unnecessary were that EPC may be an obstacle to cancer treatment (patients: 37%; caregivers: 23%; respectively) or that they were not sure if EPC is beneficial (patients: 21%; caregivers: 24%; respectively). Financial burden as a reason was more evident in caregivers (23%) than in patients (17%). Male gender, age <50, early stage, intensive care unit admission, and not believing that dying people should prepare to practice charity were associated with patients’ negative attitudes. In caregivers, opposition to EPC was associated with not thinking death should be feared, not thinking people should be remembered, and lower educational level. Our findings showed that significant numbers of patients with advanced cancer and family caregivers showed positive attitudes toward EPC. However, more than 10% of participants did not consider EPC necessary. Physicians’ communication with patients and caregivers and financial support could help overcome the barriers of EPC.
Objectives: To understand successful strategies used by people to cope well when living with advanced cancer; to explore how professionals can support effective coping strategies; to understand how to support development of effective coping strategies for patients and family carers.; Design: Qualitative serial (4-12 week intervals) interview study with people with advanced cancer and their informal carers followed by focus groups. The iterative design had a novel focus on positive coping strategies. Interview analysis focused on patients and carers as individuals and pairs, exploring multiple dimensions of their coping experiences. Focus group analysis explored strategies for intervention development.; Participants: 26 people with advanced (stage 3-4) breast, prostate, lung or colorectal cancer, or in receipt of palliative care, and 24 paired nominated informal/family carers.; Setting: Participants recruited through outpatient clinics at two tertiary cancer centres in Merseyside and Manchester, UK, between June 2012 and July 2013.; Results: 45 patient and 41 carer interviews were conducted plus 4 focus groups (16 participants). People with advanced cancer and their informal/family carers develop coping strategies which enable effective management of psychological wellbeing. People draw from pre-diagnosis coping strategies, but these develop through responding to the experience of living with advanced cancer. Strategies include being realistic, indulgence, support, and learning from others, which enabled participants to regain a sense of wellbeing after emotional challenge. Learning from peers emerged as particularly important in promoting psychological wellbeing through the development of effective 'everyday', non-clinical coping strategies.; Conclusions: Our findings challenge current models of providing psychological support for those with advanced cancer which focus on professional intervention. It is important to recognise, enable and support peoples' own resources and coping strategies. Peer support may have potential, and could be a patient-centred, cost effective way of managing the needs of a growing population of those living with advanced cancer.;
Background: Prolonged grief disorder (PGD) and depression are recognized as distinct emotional-distress disorders for bereaved family caregivers. However, this distinction has been mostly validated in cross-sectional studies, neglecting the dynamic characteristics of bereaved caregivers' emotional distress. Objective: To validate the distinction between symptoms of PGD and depression across the first bereavement year for family caregivers of terminally ill cancer patients. Methods: In this descriptive, longitudinal study of 394 bereaved Taiwanese family caregivers, we measured symptoms of PGD and depression by the Prolonged Grief-13 and Center for Epidemiologic Studies Depression (CES-D) scales at 6 and 13 months postloss, respectively. Agreement between cases of PGD and severe depressive symptoms (CES-D score ≥ 16) was analyzed by Cohen's kappa. Structural distinctiveness was longitudinally examined using confirmatory bifactor modeling. Results: Agreement was poor between cases of PGD and severe depressive symptoms at 6 and 13 months postloss (kappa = .16 [confidence interval = .09, .22] and .12 [confidence interval = .03, .19], respectively). Symptoms of PGD and depression shared a general factor, but were distinct as shown by their significant specific factor loadings at 6 and 13 months postloss. Confirmatory bifactor models showed structural invariance (confirmatory fit index difference < .01 and χ2 difference P > .05) between 6 and 13 months postloss. Conclusion: Symptoms of PGD and depression were confirmed as distinct across the first year of bereavement. Health care professionals should recognize early in bereavement that symptoms of PGD and depression are distinct, identify high-risk groups, and provide care tailored to caregivers' unique needs to facilitate recovery from bereavement-related emotional-distress disorders.
Introduction: Indian families are known for adopting the role of caregiver naturally when someone in the family falls ill to cancer. Although there were strong family structure and system existed here, now the changing family pattern and structure are challenging the role of cancer caregiving as well. Objective: This study analyses the life situation of caregivers of cancer survivors during the course of treatment and attempts to explore the areas of interventions for caregivers themselves. Methods: A descriptive research design was adopted for the study. A sample of 40 respondents was chosen for the study through purposive sampling technique. Results: Majority of the caregivers were females (75%) and fell into the age group of 35 to 45 years (65%). The education among the caregivers was varying between illiteracy to postgraduation. Majority of 95% of them adapted the dual role voluntarily and 85% of them felt that they were finding it very difficult to cope with the dual responsibility. About 60% of them felt that they would fail in their roles and were not satisfied with their performances dually. Conclusion: Adaptation to a dual role involves time factor and as part of care to the caregiver, a guided interaction and orientation towards managing these roles would help them better ways to adapt. Given the scarcity of support system on Indian settings, the caregivers who do dual role have huge responsibility and challenges to deliver quality caregiving and fulfill their other roles as well. It is the duty of the complete health care system to seriously take this into consideration and to act on it.
Objective: Breast cancer diagnosis and treatment negatively affect quality of life for survivors and their family caregivers. The stress process model has been useful for describing the cascade of social and psychological experiences that culminate in degraded quality of life for both survivors and their family caregivers. This study is designed to test theoretically specified predictors of negative psychosocial outcomes in a dyadic context. Methods: Participants were 230 dyads composed of Latinas recently diagnosed with breast cancer and their primary family caregiver, who completed measures of socioeconomic status, stress, family conflict, depression, and anxiety. Data were analyzed following the Actor-Partner Interdependence Mediation Model in structural equation modeling. Results: For both survivors and caregivers, there were significant direct and indirect actor effects (through family conflict) of perceived stress on depression and anxiety. Several indirect partner effects were also evident in this sample. Specifically, caregivers' stress was predictive of survivors' depression and anxiety through survivors' increased perceptions of family conflict. Conclusions: As predicted by the stress process model, stress and family conflict were predictive of psychological distress in breast cancer survivors and their family caregivers. Significant partner effects in the Actor-Partner Interdependence Mediation Model suggest that there are some dyadic influences, particularly from caregivers' stress to survivors' perceptions of exacerbated family conflict. These findings show how strained family relationships can aggravate the well-being of cancer survivors and their family caregivers through this challenging experience.
Objective: Home care of advanced cancer patients often has adverse effects on physical and mental health of family caregivers. Little is known about the long-term effects of continuous caregiving on mental health as compared with the effects of bereavement. The objectives of this study were to describe the course of psychiatric morbidity in family caregivers over time, to identify the impact of the patients' death on caregivers, and to explore possible predictor variables for psychiatric morbidity. Methods: This multi-institutional, prospective study included 80 family caregivers of 80 advanced cancer patients for baseline and 9 months follow-up assessment. Possible psychiatric disorders (ie, depression, anxiety, posttraumatic stress disorder, and alcohol abuse/dependence) as well as potentially predictive factors (ie, sociodemographic factors, burden, hope, and coping mechanisms) were assessed. Results: Follow-up assessment was conducted on average 9.2 months (±2.9) after baseline assessment. Prevalence rates of anxiety and posttraumatic stress disorder decreased significantly over time, whereas depression and alcoholism remained stable. Bereavement was experienced by 53% of caregivers in the follow-up period. The patients' death had no influence on psychiatric morbidity at follow-up. Predictors for the development of a psychiatric disorder varied according to condition, with hope and emotion-oriented coping identified as important influences, especially for anxiety and depression. Conclusion: Family caregivers with certain psychiatric disorders might need targeted psychosocial support to ensure their mental well-being and prevent long-term disability. Supporting hope and functional coping strategies early after the patient's diagnosis might limit development and extent of psychiatric morbidity.
Objectives: We aimed to identify the predictive factors for the perceived family social support among cancer patients and caregiver burden of their family caregivers. Methods: Participants were 302 cancer patients and their family caregivers. Family social support scale was used for cancer patients, burden interview was used for family caregivers.All subjects also completed Beck depression invantery. The related socio-demographical factors with perceived social support (PSS) and caregiver burden were evaluated by correlation analysis. To find independent factors predicting caregiver burden and PSS, logistic regression analysis were conducted. Results: Depression scores was higher among patients than their family caregivers (12.5 vs. 8). PSS was lower in depressed patients (p < .001). Family caregiver burden were also higher in depressive groups (p < .001). Among patients only the depression was negatively correlated with PSS (p < .001,r = −2.97). Presence of depression (p < .001,r = 0.381) was positively correlated and family caregiver role was negatively correlated (p < .001,r = −0.208) with caregiver burden. Presence of depression was the independent predictor for both, lower PSS for patients and higher burden for caregivers. Conclusions:The results of this study is noteworthy because it may help for planning any supportive care program not only for patients but together with their caregiver at the same time during chemotherapy period in Turkish population.
Background: The experience of caring for a family member with cancer is associated with several care‐related problems and challenges for the caregiver. The comprehensive and in‐depth understanding of the trials and tribulations of caregiving can be a step towards resolving the problems faced by family caregivers of these patients. Aim: The present study aimed to explore challenges faced by Iranian family caregivers of cancer patients. Materials and methods: The present qualitative study was conducted through in‐depth semi‐structured interviews held with 21 family caregivers of cancer patients selected through purposive sampling. Interviews continued until saturation of data. All interviews were recorded, transcribed and analysed through conventional content analysis. Finding: The codes extracted from interviews produced four main themes, including ‘confusion’, ‘uncertainty’, ‘disintegration’ and ‘setback’, which collectively caused suffering for family caregivers. Conclusion: Care provided in an atmosphere of suffering and discontent diminishes caregiver's quality of life and quality of patient care. Health planners should therefore consider the challenges and sufferings faced by family caregivers and should seek to obviate them through appropriate plans.
Purpose: At the end of life, spiritual well-being is a central aspect of quality of life for many patients and their family caregivers. A prevalent spiritual value in advanced cancer patients is the need to actively give. To address this need, the current randomized trial examined whether adding a peer helping component to a coping skills intervention leads to improved meaning in life and peace for advanced gastrointestinal cancer patients and their caregivers. Feasibility and acceptability outcomes were also assessed. Methods: Advanced gastrointestinal cancer patients and caregivers (n = 50 dyads) were randomly assigned to a 5-session, telephone-based coping skills intervention or a peer helping + coping skills intervention. One or both dyad members had moderate-severe distress. Peer helping involved contributing to handouts on coping skills for other families coping with cancer. Patients and caregivers completed measures of meaning in life/peace, fatigue, psychological symptoms, coping self-efficacy, and emotional support. Patient pain and caregiver burden were also assessed. Results: Small effects in favor of the coping skills group were found regarding meaning in life/peace at 1 and 5 weeks post-intervention. Other outcomes did not vary as a function of group assignment, with both groups showing small decreases in patient and caregiver fatigue and caregiver distress and burden. High recruitment and retention rates supported feasibility, and high participant satisfaction ratings supported acceptability. Conclusions: Although a telephone-based intervention is feasible and acceptable for this population, peer helping in the context of a coping skills intervention does not enhance spiritual well-being relative to coping skills alone.
Objective: To describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Methods: Caregivers of patients who had completed a 4-month randomized controlled trial of early palliative care versus standard oncology care were recruited 6 months to 5 years after the patient's death. All patients except one (control) had eventually received palliative care. In semi-structured interviews, participants were asked about their experiences of caregiving. Grounded theory guided all aspects of the study. Results: Sixty-one bereaved caregivers (30 intervention, 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumption of active roles in care, often in the face of inadequate formal support. There were 4 interrelated subcategories: (1) Navigating the system-navigating the complexities of the home care system to access resources and supports; (2) Engaging with professional caregivers-interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death-seeking out information about what to expect at the end of life; and (4) Managing after death-managing multiple administrative responsibilities in the emotionally charged period following death. Conclusions: Caregivers were often thrust into assuming control in order to compensate for deficiencies in formal palliative home care services. Policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary home palliative care.
Purpose/Objectives: To explore whether repetitive negative thinking (RNT) mediates the pathway between subscales of caregiver burden and depressive symptoms. Design: Cross-sectional pilot study. Setting: Bone marrow unit at the University of Louisville Hospital in Kentucky and caregiver support organizations in Louisville. Sample: 49 current cancer caregivers who were primarily spouses or partners of individuals with lymphoma or leukemia and provided care for a median of 30 hours each week for 12 months. Methods: Caregivers completed questionnaires assessing caregiver burden, RNT, and depressive symptoms. Main Research Variables: Caregiver burden, RNT, and depressive symptoms. Findings: Results showed that RNT mediated the relationship between burden (as a result of impact on schedule or finances) and depressive symptoms. Although burden from a lack of family support and impact on health was positively related to depressive symptoms, these relationships were not mediated by RNT. In addition, caregiver esteem was not associated with RNT or depressive symptoms. Conclusions: RNT plays an important role in maintaining and potentially exacerbating caregiver distress. Assessment and intervention regarding RNT in cancer caregivers may reduce depressive symptoms prompted by burden from an impact on schedule or finances. Implications for Nursing: Nurses may be significant in connecting caregivers experiencing RNT to resources and professionals to enhance adaptive coping and potentially prevent depressive symptoms. [ABSTRACT FROM AUTHOR]
The purpose of our study was to describe the experiences of family caregivers of cancer patients using the public healthcare system in South Africa. We used a qualitative descriptive design and conducted in‐depth interviews with 20 purposively selected family caregivers. Data saturation determined the sample size, and qualitative content analysis was used to analyse the data. Three themes arose from the data: emotional responses and feelings towards the cancer diagnosis, fulfilling the role of the caregiver and living and coping with a changed life and a changed person. Caring for a person with cancer was not easy. Participants were overwhelmed with the care responsibilities, which were aggravated by poverty. Some felt emotionally broken and alone in this journey and experienced the rest of their family as uncaring. The lives the participants knew changed and they had to put their own lives on hold and make sacrifices involving their children, work, possible relationships and their normal activities to care for the sick person. For some, the sick person they cared for changed and became a person they did not know. Most participants used religious practices to cope with their situation; however, some used other coping mechanisms, such as recreation and even smoking.
Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;
Background: Family caregivers of cancer patients often experience an impaired quality of life (QOL) and emotional distress as a result of their caregiving duties, which may potentially influence the quality of care of their care recipients. The COPE (Caregivers of cancer Outpatients' Psycho-Education support group therapy) intervention was developed as a response to the lack of work done among family caregivers of ambulatory cancer patients in Asia. This group intervention comprised four weekly sessions simultaneously targeting psychoeducation, skills training, and supportive therapy. The present study sought to evaluate the pilot COPE intervention using both quantitative and qualitative measures. The Hospital Anxiety and Depression Scale (HADS) was used to measure both depression and anxiety, while the Caregiver QOL - Cancer (CQOLC) measured caregiver QOL. These instruments were measured at baseline pre-intervention, and immediately post-intervention. A waitlist control group design was adopted. A subset of caregivers from the intervention group were invited for a semi-structured interview post-intervention.; Findings: Quantitative analyses suggest that while QOL remained stable in control group participants, intervention group participants experienced QOL improvements - both in overall QOL and in the specific domain of burden. There were no significant differences in the trajectories of depression and anxiety in both groups. Qualitative analyses suggest that this might have been a result of the intervention not only equipping participants with the relevant coping skills, but also providing a platform for emotional expression and situational reappraisal.; Conclusions: The COPE intervention has shown some efficacy in helping family caregivers of cancer patients, but more work is required before this can be implemented.; Trial Registration: Current Controlled Trials NCT02120183 . Registered 17 April 2014. Retrospectively registered.;
Background: Bereaved families endure tremendous grief. However, few studies have longitudinally investigated caregivers' bereavement grief for more than one year postloss and none is from family-oriented Asian countries. Objectives: We explored longitudinal changes in and modifiable predictors of severe depressive symptoms for Taiwanese family caregivers of terminally ill cancer patients over the first two years postloss. Design: For this descriptive, longitudinal study, severe depressive symptoms (Center for Epidemiological Studies Depression Scale score ≥16) were measured 1, 3, 6, 13, 18, and 24 months postloss. To identify modifiable factors (preloss depressive symptom levels, subjective caregiving burden, objective caregiving load, preparedness for patient death, and postloss social support) associated with postloss severe depressive symptoms, we used multivariate logistic regression modeling with the generalized estimating equation. Setting/Participants: Bereaved caregivers ( N = 285) were recruited by convenience from a medical center in northern Taiwan. Results: Bereaved family caregivers' prevalence of severe depressive symptoms peaked one month postloss (73.3%) and significantly decreased to 15.2% 24 months after the patient's death. After adjusting for confounders, bereaved caregivers were more likely to have severe depressive symptoms if they had heavy objective caregiving load and higher preloss depressive symptom levels. However, their likelihood of severe depressive symptoms was buffered by being better prepared for the patients' death and having greater social support. Conclusions: Bereaved family caregivers' severe depressive symptoms decreased significantly over the first two years postloss. Healthcare professionals should appropriately assess at-risk bereaved caregivers when patients are still alive and provide effective interventions to facilitate caregivers' return to normal life.
The informal caregiving for cancer patients is a complex healthcare activity. Experts have suggested that the incidence of cancer cases is expected to rise five fold by the year 2025. Now the major concern that arises is that as the number of cancer cases will increase so is the need for informal caregiving for cancer patients that will rise manifold. The present review paper will throw light on the meaning of informal caregiving and the subjective and objective burden of that the caregivers have to face as a consequence to informal caregiving. Various variables that affect the caregiving burden outcome are also discussed. Several studies carried out on the caregiving burden are also given a lime light in order to come with certain suggestions and future directions to aid the family caregivers of cancer patients to deal and cope with the caregiving role in an efficient manner.
Background: Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia.; Methods: The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant.; Results: The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031).; Conclusions: Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.;
Background: A substantial number of family caregivers go through bereavement because of cancer, but little is known about the bereaved caregivers' long-term adjustment. This study aimed to document levels of bereavement outcomes (prolonged grief symptoms, intense emotional reaction to the loss, depressive symptoms, and life satisfaction) among family cancer caregivers 3-5 years post-loss and to investigate how self-rated preparedness for the patient's death predicted those bereavement outcomes. Methods: Family members participated in a nationwide survey for cancer caregivers 2 years after the relative's diagnosis (T1). Of those, 109 were identified as bereaved by 5 years post-diagnosis (T2). Of those, 88 continued to participate at 8-year follow-up (T3) and provided valid data for the study variables. Caregivers' distress risk factors were measured at T1, satisfaction with palliative care and preparedness for the death of the patient at T2, and time since death of the patient at T2 or T3. Results: Substantial numbers of family members (18% to 48%) displayed heightened levels of bereavement-related psychological distress years after the loss. Hierarchical general linear modeling revealed that perceived preparedness for the death of the patient concurrently and prospectively predicted better adjustment to bereavement, independent of contributions of other factors studied. Conclusions: Findings underscore the high prevalence of long-lasting bereavement-related distress among family cancer caregivers and the role of preparedness for the relative's death in the level of that distress. Findings suggest that psychosocial programs among caregivers focus on not only caregiving skills per se but also preparedness for the death of the patient.
Background: Previous work shows that more affluent patients with cancer are more likely to die at home, whereas those dying from non-cancer conditions are more likely to die in hospital. Family caregivers are an important factor in determining place of death. Aim: To investigate associations between family caregivers' household income, patients' access to specialist palliative care and place of patients' death, by level of personal end-of-life care. Design: A cross-sectional community household population survey. Setting and participants: Respondents to the Household Survey for England. Results: One-third of 1265 bereaved respondents had provided personal end-of-life care (caregivers) (30%). Just over half (55%) of decedents accessed palliative care services and 15% died in a hospice. Place of death and access to palliative care were strongly related (p < 0.001). Palliative care services reduced the proportion of deaths in hospital (p < 0.001), and decedents accessing palliative care were more likely to die at home than those who did not (p < 0.001). Respondents' income was not associated with palliative care access (p = 0.233). Overall, respondents' income and home death were not related (p = 0.106), but decedents with caregivers in the highest income group were least likely to die at home (p = 0.069). Conclusion: For people who had someone close to them die, decedents' access to palliative care services was associated with fewer deaths in hospital and more home deaths. Respondents' income was unrelated to care recipients' place of death when adjusted for palliative care access. When only caregivers were considered, decedents with caregivers from higher income quartiles were the least likely to die at home. Family caregivers from higher income brackets are likely to be powerful patient advocates. Caregiver information needs must be addressed especially with regard to stage of disease, aim of care and appropriate interventions at the end of life.