Background: Cancer in children in Tanzania is a concerning health issue, yet there is a shortage of information about the experiences of the guardians of children who receive cancer treatment. Objective: To explore concerns and needs of support among guardians of children on cancer treatment in Dar es Salaam, Tanzania.
Method: Using a qualitative design, 3 focus group discussions were held with 22 guardians of children aged 9 to 17 years. Guardians were recruited from Muhimbili National Hospital, Dar es Salaam, where their children were receiving cancer treatment. Data were analyzed using thematic content analysis.
Results: Guardians experienced several issues during the initial stages of their child's cancer treatment, including the process of seeking a diagnosis, and experiences with care at the peripheral (regional) hospitals and national hospital. They also shared what they felt would lessen their difficult experiences. Seven themes emerged in this study: financial concerns, emotional concerns, barriers to cancer care, need for improved cancer care, need for information, need for tangible support, and gratitude and hope.
Conclusion: Guardians of children with cancer experience challenges during initial stages when seeking a diagnosis and have concerns and needs related to cancer care and treatment. Implications for practice: Improvements are needed regarding care at regional hospitals, the cancer diagnosis, and the recognition of early signs of cancer and quick referral to diagnostic centers, compassionate caring behaviors by healthcare workers, budgetary support from the government to meet the medication supply demands, and meeting stakeholders' support needs.
Objectives: Caring for a child with cancer can disrupt family life and financial stability, in addition to affecting the child's social, emotional, and educational development. Health care providers must consider ways to minimize the negative impact of illness and hospitalization on the child and family. This study evaluates a nationwide initiative to educate and support parents to administer chemotherapy to their child in their home.
Method: A questionnaire was circulated to parents participating in a home chemotherapy program from 2009 to 2014 (n = 140), seeking their perspective on the education program, and the benefits and concerns associated with administering home chemotherapy. Data analysis was conducted using a combination of descriptive statistics and content analysis.
Results: Questionnaires were received from 108 parents (response rate = 77%). Overall, the program was positively evaluated with 100% of parents (n = 108) reporting that the training met their needs. More than one-third of parents (41%, n = 44) initially felt nervous about home chemotherapy but reported that the education program helped assuage their concerns. Benefits included reduced financial costs, reduced travel time to hospital, less disruption to family life, and less stress for the child and family. No medication errors were reported during the evaluation period.
Conclusion: An important feature of the program is the partnership approach, which ensures that parents' decision to enter the program is informed, appropriate for their situation, and centered on the needs of the child. References
This study examined the financial impact of cancer and the use of income support in adolescents and young adults (AYAs) with cancer and their parent caregivers. As part of a national Australian study exploring the psychosocial impacts of cancer, 196 AYAs ages 15 to 25 years, six to 24 months from diagnosis, and 204 parent caregivers from 18 cancer sites were surveyed. Logistic regression and chi-square analyses were conducted to assess the influence of clinical and sociodemographic variables on financial status. Qualitative responses were coded, and key themes were identified using thematic analysis. The findings indicate that more than half of AYAs and parents reported financial issues as a consequence of AYA cancer. Financial issues resulted from direct medical costs, associated costs from treatment, and indirect costs from loss of income. AYAs and parents reported that it was important for them to receive income support, both during and after cancer treatment. However, large proportions of those who reported needing income support had difficulty accessing it. AYAs and their families are substantially financially disadvantaged by cancer, many for a prolonged time. Patient- and family-centered assessments and interventions are required to reduce the financial burden of AYA cancer.
Introduction: Considering the importance of empowering patients and their families by providing appropriate information and education, it seems smartphone apps provide a good opportunity for this group. The purpose of this review was to identify studies which used smartphone apps to help children and adolescents with cancer and their families.
Method: Arksey and O'Malley's framework was employed in this review. To examine the evidence on the design and use of smartphone apps for the target group, PubMed, Embase, Scopus and Web of Science databases were searched from 2007 to November 2018.
Results: Twenty-four articles met the inclusion criteria, with 33% being conducted in the USA and 21% in Canada. Moreover, in 20 studies (83%), app was specifically designed for children and adolescents, with only three studies (13%) for parents and one study (4%) for both. The main modules of smartphone apps in these studies included symptom assessment (90%), provision of information and education (74%), communication with caregivers (57%), social support (30%) and calendar and reminder (21%).
Conclusions: Due to the easy access to smartphones without a costly infrastructure compared to landline phones, the use of mobile health (m-Health) has become a suitable method of providing healthcare services, especially for cancer. Use of smartphone apps, increases patient and families' access to reliable and suitable education and information regarding the disease. Thus, healthcare policy-makers in developing or underdeveloped countries can exploit the health-related potentials of m-Health following the experience of developed countries.
Background: The global cancer burden is estimated to have risen to 18.1 million new cases and 9.6 million deaths in 2018. The period of child's diagnosis negatively influences parents socially and psychologically leading to depression.
Objectives: The aim of the study was to assess the prevalence of depression, its associated factors and parent's experience towards care of their cancer diagnosed child.
Methods: A mixed approach quantitative and qualitative cross-sectional study was employed between 15 March and 1 April 2017. Systematic random sampling involving 275 participants in the quantitative and 20 conveniently selected participants for qualitative study were included in the study. Beck's depression inventory scale was used to collect data. Logistic regression including bivariate and multivariate analysis considering 95% confidence interval (CI) was utilized to examine association between dependent and independent variables. P-value <.05 was considered statistically significant. Thematic analysis was used to analyze qualitative data.
Results: The prevalence of depression among parents was 72.4%, with depression levels of: borderline 7.3%, moderate 6.2%, severe 6.5%, and extreme severe depression 3.3%. Single parenting, income, history of depression, and support source were associated with parental depression (adjusted odds ratio, AOR = 6.21; 95% CI: 2.66-14.52), (AOR = 0.34; 95% CI: 0.02-0.86), (AOR = 8; 95% CI: 1.7-37.4), (AOR = 38; 95% CI: 2.6-560), respectively.
Conclusion: Family income, single parenting, and support sources are determinant factors for parental depression in this study. Nurses should early detect parents at risk and give due attention to reduce the risk of depression.
Objective: The aim of this study was to investigate the psychometric properties of the Family Inventory of Resources for Management (FIRM) in a sample of family caregivers of cancer patients.
Methods: In this methodological study, construct validity of the FIRM was evaluated by known groups and convergent validity in a convenience sample of family caregivers of cancer patients (n=104) referred to the outpatient oncology wards of five educational hospitals in Tehran from January to April 2016. Reliability was determined by assessing the internal consistency and stability of the instrument.
Results: The known-groups findings showed that there is a significant difference between the scores of the FIRM in family caregivers with different levels of caregiver burden (p<0.001). Also, the results of convergent validity showed that there is a moderate negative correlation (r=-0.50; p<0.001) between the total scores of the FIRM and the scores of the caregiver burden inventory (CBI). The FIRM showed a good internal consistency (α=0.85) and a good stability of the test-retest reliability result.
Conclusions: There is a sound psychometric basis for the use of the Persian translation of the FIRM for family studies in the Iranian population.
Background: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment.
Objective: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis.
Methods: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically.
Results: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives.
Conclusions: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time.
Implications for Practice: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.
The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well. While much of the pediatric cancer treatment occurs at the hospital or in clinics, parents are often faced with additional caregiving responsibilities at home, and in many cases, it is mothers who provide care to their children, while also attempting to care for the siblings of their ill children. This secondary data analysis examines the caregiving responsibilities of mothers from Southern Ontario, Canada, during the time from diagnosis to after their children's pediatric cancer treatment. Three subthemes emerged from the overall theme of caregiving: (1) "We tried to do as much as we could outside of the clinic," (2) "I had to be there for everything," and (3) "Most of the time we relied on other people." Each will be discussed in turn. The findings from this work provides insight to health care professionals on how to create or improve the current supports and resources provided to caregivers of children with cancer.
The current study examined the relationship between demographic variables, treatment factors, and perceived barriers to care to both caregiver distress and caregiver-reported child health-related quality of life in caregivers of children diagnosed with cancer utilizing path analysis. Parental distress is examined as a potential mediator between barriers to care and income, as well as child age and caregiver-reported health-related quality of life (HRQOL). The final model demonstrated close fit to the data. Family income and perceived barriers to care demonstrated direct effects on caregiver distress. Child age, treatment intensity, severity of illness, and caregiver distress also demonstrated direct effects on caregiver-reported HRQOL. These results suggest a significant relationship between burden of care, caregiver functioning, and caregiver-reported child outcomes and support the transactional relationship between caregiver and child functioning.
Introduction: Acute Lymphoblastic Leukemia (ALL) is the most common childhood cancer. The leukemia affects not only the quality of life (QOL) of children but also their caregivers. This study aimed to identify the Quality of Life of parents of children with ALL and to find out the association between QOL of parents of children with ALL and the selected demographic variables.
Methods: A descriptive study was conducted to assess the QOL among parents of children with ALL. Non-probability purposive sampling technique was followed to select 70 parents of children with ALL attending oncology Outpatient Department in selected hospitals of Kolkata, West Bengal. Semi-structured interview was conducted and the 'Adult Carer Quality of Life (ACQOL)', the standardized questionnaire was used to assess the quality of life.
Results: The study findings revealed that majority (71.43%) of the parents were mother, maximum (77.14%) parents were belonged to the 30-40 years of age group, majority (42.86%) of the parents spent more than 60 hours per week for caring. It was found that majority of the clients 48 (68.57%) had perceived their quality of life as 'Mid-range'. There was a significant association between QOL and monthly family income and time (in hours) spent for caring per week.
Conclusion: The study was believed to be a helpful guide for future study on assessment of Quality of Life of any other caregivers in a large sample for better generalization.
The effects of bereavement are unique and support must be individually tailored. The role of the general practitioner (GP) in paediatric cancer palliative care is wide-ranging and challenging, yet little is known about offered bereavement support in this context. We carried out an in-depth secondary analysis of text relating to bereavement support from a semi-structured interview study exploring GPs’ and parents’ experiences. Findings highlight the importance of early GP-initiated face-to-face contact with parents, exploring opportunities for innovative practice and maintaining close collaboration with hospital-based teams. A co-ordinated, equitable and sustainable approach to bereavement support may help address identified GP knowledge deficits and time-pressures.
Objective: Long-term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long-term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers.
Methods: Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14-39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings.
Results: Fifty-six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self-well-being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age-specific psychosocial services.
Conclusions: Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed.
Objective: Chronic illness of a child puts healthy children of the family at risk of distress. Previous studies have demonstrated that healthy children's psychological symptoms can be reduced when the child knows more about the disease. So far, there is limited evidence of the effectiveness of psychoeducational interventions for healthy children.
Aims: To compare the effectiveness of an inpatient family‐oriented rehabilitation program with vs without additional psychoeducational sessions for healthy children of families with children with cancer.
Patients and methods: We performed a controlled study in 4 German family‐oriented rehabilitation clinics. The outcomes of n = 73 healthy children (mean age: M = 9.55; SD = 3.14; range: 4–18), who participated in 5 additional psychoeducational sessions, were compared with the outcomes of n = 111 healthy children (mean age: M = 8.85; SD = 3.28; range: 4–17), who underwent the usual inpatient rehabilitation program. Primary outcomes were the healthy children's cancer‐specific knowledge and their emotional symptoms. Secondary outcomes were family satisfaction and quality of life.
Results: Intention‐to‐treat analyses showed that both groups improved significantly from preintervention to postintervention. Improvements comprised knowledge about cancer (F(1,174) = 11.03, p < 0.001), self‐reported emotional symptoms (F(1,135) = 31.68, p < 0.001), and parent‐proxy‐reported emotional symptoms (F(1,179) = 37.07, p < 0.001). The additional psycho‐educational program did not significantly enhance the outcomes. The same pattern of significant improvement in both conditions emerged for all secondary outcomes. The immediate effects of the intervention persisted until 2 months after discharge from the rehabilitation program.
Conclusions: Inpatient family‐oriented rehabilitation is effective in improving multiple psychosocial outcomes of healthy children in families which have a child with cancer. Additional psycho‐educational sessions did not show any substantial additional improvement.
Background: Cancer in children causes many challenges for the family. When a refugee family experiences it, its impacts may be different and more specific considerations for care may be needed.
Aims: This study aimed to explore the experiences of Afghan mothers living in the Islamic Republic of Iran who had a child with cancer.
Methods: This was a qualitative study, conducted in 2017, of Afghan refugee women with children diagnosed with cancer and referred to a cancer referral hospital in Tehran; they were selected through purposive sampling. Face-to-face, semi-structured and in-depth interviews were conducted for data collection until data saturation was reached. Conventional content analysis was done. MAXQDA 10 was used for organizing the data.
Results: Nine Afghan mothers were interviewed. They were aged 24-44 years and the children were aged 2-9 years. A primary theme called "passive acceptor" was found with five subthemes: chronic suffering, health issues, lack of skills, maladaptive coping and enthusiasm. The mothers were struggling to cope with the challenges of caring for a child with cancer both financially, physically and emotionally.
Conclusion: In spite of many issues in common with similar groups in other countries, Afghan mothers appear to need to greater assistance when it comes to seeking help and understanding for the care for their child with cancer, possibly because of cultural barriers to self-empowerment. Tailored care plans are recommended for Afghan refugee mothers in the Islamic Republic of Iran.
Background: Treatment abandonment (TxA) is a primary cause of therapy failure in children with cancer in low-/middle-income countries. We explored the absence of social support network (SSN), among other predictive factors, and TxA in children with cancer in Cali, Colombia.
Procedure: In this prospective cohort study, we included children diagnosed with cancer at a public university hospital. A social worker and a psychologist administered semistructured questionnaires to patients' caregivers. We extracted information from the questionnaires about social, economic, and psychological conditions of the patients' families. Outcomes were death, relapse, and TxA. Failure either to start or to continue the planned course of curative treatment for 4 weeks or more was defined as TxA. We identified events with Cali's childhood cancer outcomes surveillance system (VIGICANCER). We adjusted the hazard ratios (HRs) for potential confounders using multivariate Cox regression analyses.
Results: Among 188 patients diagnosed from January 2011 to June 2013, 99 interviews were conducted. Median age was 5 years old (range: 0.3, 14.9), 53% were male, 17% were of Colombian-Indian ethnicity, and 68% lived in rural areas. The 2-year cumulative incidence of TxA was 21% (95% confidence interval [CI]: 13, 35) and the annual proportion was 14%. The adjusted HR for the absence of SSN was 4.9 (95% CI: 1.6, 15.3).
Conclusions: We found a strong association between the absence of SSN and TxA that was independent of other covariates, including surrogate measures of wealth. Our findings highlight the imperative understanding of social ties and support surrounding children's families for planning strategies to prevent TxA.
Objective: Schooling after treatment can hold challenges for survivors of childhood cancer and caregivers who may need to act as advocates on their behalf. This study seeks to understand caregiver experiences of survivor's school-related challenges. This understudied area is critical given the 85% survivor rate for those diagnosed with childhood cancer and the disproportionate risk of learning difficulties faced by those with brain tumor or who receive therapy that targets the central nervous system.
Methods: Affected caregivers participated in open-ended interviews addressing school experiences during survivorship. Following preliminary analysis using a grounded theory approach, interviewees and other stakeholders from education, medical, and foundation communities participated in focus groups. Member-check activities explored the validity of identified themes and a model derived from interview data describing schooling challenges during survivorship.
Results: Caregivers reported schooling-related experiences were often stressful and such stressors recurred during survivors' ongoing education. They reported a lack of appropriate knowledge among themselves, school staff, and clinicians about issues their survivor faced as well as concerns about communication and uncertainties about the processes required to attain appropriate services. These themes of knowledge, communication, and process issues were embedded within family approaches to coping with difficulties as well as the specific types of late effects each survivor faced.
Conclusions: The proposed model and clinical implications provide a foundation for future research and intervention development. Such work is needed to more effectively support survivors and their caregivers with difficulties that arise during schooling following treatment for childhood cancer.
Objective: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings.
Methods: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months.
Results: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms.
Conclusion: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.
Background: Pediatric oncology diagnoses are distressing to caregivers. However, researchers have not investigated the impact that the type of cancer diagnosis has on caregiver anxiety, depression, distress, and family functioning. The purpose of this study was to longitudinally investigate the early trajectory of caregiver psychological symptoms of anxiety, depression, distress, and family functioning near diagnosis and 6 months later by cancer type, and to examine the demographic factors that may be associated with caregiver emotional and family functioning outcomes.
Methods: Caregivers (n = 122) of children with a recent diagnosis of leukemia/lymphoma or solid tumor completed self-report measures of psychological and family functioning (Hospital Anxiety and Depression Scale, Distress Thermometer, and Family Environment Scale).
Results: In general, caregivers endorsed elevated psychological symptoms at the time of diagnosis, which decreased 6 months later. Caregivers of children with solid tumors endorsed greater anxiety across time than caregivers of children with leukemia/lymphoma did. In addition to caring for a child with a solid tumor, female sex, non-White ethnicity, and non-English language spoken in the home were factors associated with anxious and depressive symptoms and poorer family functioning.
Conclusion: When creating psychosocial interventions for families of children with cancer, the unique demands of solid tumor treatments, the caregiver's sex, and cultural characteristics must be considered to promote coping, resiliency, and problem-solving skills around the time of diagnosis, particularly in more vulnerable families.
Background: Reports of acceptability of psychosocial screening are limited, and the utility of screening in identifying risk factors for health-related quality of life (HRQL) of children with cancer has not been established. This study aimed to assess acceptability of screening for parents and evaluate associations between family risk factors and patient HRQL in the first year post-diagnosis.; Procedure: Sixty-seven parents of children with cancer completed the Psychosocial Assessment Tool (family risk), Distress Thermometer (caregiver distress), Posttraumatic Stress Disorder Checklist-Civilian 6 (caregiver traumatic stress), PedsQL 4.0 (parent-proxy report of patient HRQL) and four acceptability questions via a tablet (iPad).
Results: Patients (Mage = 9.5 SD = 5.5 years) were equally distributed across major pediatric cancer diagnoses. The majority of parents endorsed electronic screening as acceptable (70%-97%). Patient gender, diagnosis, intensity of treatment and time since diagnosis were not significantly correlated with family risk, caregiver distress, traumatic stress, or patient HRQL. The full regression model predicting total HRQL was significant (R 2 = .42, F(4,64) = 10.7, p = .000). Age (older) was a significant covariate, family risk and caregiver distress were significant independent predictors of poorer total HRQL. The full regression models for physical and psychosocial HRQL were significant; age and caregiver distress were independent predictors of physical HRQL, and age and family risk were independent predictors of psychosocial HRQL.
Conclusions: Screening is acceptable for families and important for identifying risk factors associated with poorer patient HRQL during childhood cancer treatment. Targeted interventions addressing family resource needs as well as parent distress identified through screening may be effective in promoting patient HRQL.
Background: High-potency Cannabis (HPC) is commonly used by patients with cancer to relieve pain. Parents' HPC consumption can have an adverse effect on the physical, psychological, and social aspects of children.
Objectives: This study was conducted aimed to investigate the effectiveness of parent-child interaction therapy (PCIT) on the reduction of aggression and cortisol level in children of dependent cannabis caregiver with cancer.
Methods: In a double-blind randomized controlled trial, from March 2015 to October 2016, 50 caregivers residing in Tehran, Iran with metastatic cancer consuming HPC and their children with aggression problem were selected, using respondent-driven sampling (RDS) method and were randomly assigned to the experimental or control groups through block randomization. Changes in the level of aggression and cortisol during 12 weeks were analyzed by repeated measures correlation (rmcorr) and generalized estimation equation (GEE) through SPSS 22 software. Statistical significance was accepted at P < 0.01.
Results: The primary outcomes showed that 12 weeks of PCIT had a significant effect on the reduction of children's aggression and the level of salivary cortisol in children (P< 0.01). However, the results werenot stable until the follow-up stage (P=0.067). Secondary outcomes showed that there was a significant relationship between aggression index and cortisol level (P < 0.01).
Conclusions: The findings of the present study are consistent with the research background confirming the role of systematic and nonlinear (cyclic) look at behavioral and psychological problems during growth. These findings can be found in family setting and in educational settings such as kindergartens with clinical application.
Objective: This study examines theoretical covariates of health-related quality of life (HRQL) in parents of pediatric brain tumor survivors (PBTS) following completion of tumor-directed therapy.; Methods: Fifty PBTS (ages 6-16) completed measures of neurocognitive functioning and their parents completed measures of family, survivor, and parent functioning.
Results: Caregiving demand, caregiver competence, and coping/supportive factors were associated with parental physical and psychosocial HRQL, when controlling for significant background and child characteristics.
Conclusion: Study findings can inform interventions to strengthen caregiver competence and family functioning following the completion of treatment, which may improve both parent and survivor outcomes.
Purpose: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their postbrain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement.
Participants & Setting: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings.
Methodologic Approach: Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads. Meaning is interpreted through narrative profiles of expectations for function and independence. Findings: Participants made sense of the brain tumor diagnosis by finding benefits and nonbenefits unique to their experiences. Meaning was framed in either nonreligious or religious terms.
Implications for Nursing: Acknowledging positive meaning alongside negative or neutral meaning could enhance interactions with survivors, caregivers, and their families. Exploring the meaning of their experiences may help them to reconstruct meaning and reframe post-tumor realities through being heard and validated.
Complex relationships between race and socioeconomic status have a poorly understood influence on psychologic outcomes in pediatric oncology. The Family Symptom Inventory was used to assess symptoms of depression and anxiety in pediatric patients with cancer and their caregivers. Separate hierarchical linear regression models examined the relationship between demographic variables, cancer characteristics, socioeconomic status, and access to care and patient or caregiver depression/anxiety. Participants included 196 pediatric patients with cancer (mean age, 11.21 y; 49% African American) and their caregivers. On average, caregivers reported low levels of depression/anxiety. Symptoms of depression and anxiety in patients were correlated with poorer mental health in caregivers (r=0.62; P<0.01). Self-reported financial difficulty (β=0.49; P<0.001) and brain cancer diagnosis for their child (β=0.42; P=0.008) were significantly associated with depression and anxiety in caregivers. Analysis did not reveal significant associations between race, household income, or access to care and patient or caregiver depression/anxiety. Perception of financial hardship can adversely impact mental health in caregivers of children with cancer. Psychosocial assessment and interventions may be especially important for caregivers of patients with brain tumors and caregivers who report feeling financial difficulty.
Objectives: To estimate the direct and indirect costs in families with a child with acute lymphoblastic leukaemia (ALL) in China.
Design: A single-site, cross-sectional survey of primary caregiver of a child with ALL was performed.; Setting and Participants: We analysed the total costs incurred on the completion of the first three-phase treatment (induction, consolidation and intensification), which requires intensive hospitalisation. Eligible patients were (1) diagnosed with ALL between 2010 and 2012 at Shanghai Children's Medical Center (SCMC), (2) aged 0-14 years at diagnosis and (3) completed the first three-phase treatment at SCMC. The data were collected between October 2014 and December 2014.
Outcome Measures: We decomposed the total costs into three categories: (1) direct medical costs, which were further divided into outpatient and inpatient costs; (2) direct non-medical costs, which referred to expenses incurred in relation to the illness; and (3) indirect costs due to productivity loss.; Results: A total of 161 patients were included in the study. Direct medical costs accounted for about 51.7% of the overall costs, and the rest of 48.3% of the total costs were attributed to direct non-medical costs and indirect costs. Regarding families with different household registration type (rural vs urban), the total costs were significantly different between the two groups (US $ 36 125 vs US $ 25 593; p=0.021). Specifically, urban families incurred significantly larger indirect costs than rural families (US $ 12 343 vs US $ 4157; p=0.018). Although the direct non-medical costs were not significantly different, urban families spent more money on hygiene cleaning products and auxiliary treatment equipment (p=0.041) and gifts and treats (p=0.034) than rural families.
Conclusions: The financial burden faced by the Chinese families with a child with ALL was tremendous, and the distributions of costs among the three categories were different between urban and rural families. (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
Purpose: Proxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).
Methods: Both parents completed the PedsQL generic (child's HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland-Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis.
Results: Parents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65-0.83). Bland-Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL.
Conclusions: If proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent's sex is not of major importance, but clinicians should be aware of patient's and family's characteristics.
Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values.
Observations: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.
Conclusions and Relevance: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.
Background: The impact of pediatric oncology is psychosocially and physically profound. Children and their families have problems coping with the stresses of treatment, surgery, chemotherapy, and radiation. However, qualitative research incorporating the phenomenological experiences of children and their caregivers and professionals dealing with such cases in explaining the fabrics of trauma they handle especially in Indian socio-cultural set up is needed. Purpose: To study the needs and challenges faced by children with cancer and their families and professionals using Focused Group discussions (FGD) approach.
Methods: A total of 64 participants participated across eight FGDs: 4 FGDs with parents of children with ALL (n=31); 1 FGD with professionals working in the field of cancer (n=10) and 3 FGDs with children with ALL (n= 23).
Results: Three major categories of information emerged during analyses: (1) Needs and challenges faced by the participants; (2) Factors moderating influence of challenges; (3) Technical suggestions by experts highlighting ways to address challenges. 5 Domains of challenges emerged namely: Lack of awareness, Cognitive problems, psychosocial issues, physical problems and socio emotional & behavioral problems. Discussion on the emerged themes and sub-themes has been done in the light of global literature, existing theoretical frameworks, and cultural scenario of India.
Conclusion: No longer considered an inevitably fatal disease, childhood cancer nonetheless presents many challenges for children and families. An effective and culturally sensitive psychosocial support for patients and their families during and post treatment, in addition to medical therapy, is strongly recommended.
Objectives: Aims were to (1) determine whether the associations between parent psychological functioning and adjustment outcomes of childhood cancer survivors (CCS) were mediated by the parent-child relationship and (2) examine possible differences in pathways for CCS and healthy peers.
Method: The study included CCS (n = 206), healthy peers (n = 132), and their primary caregivers. Youth (8-21 years) reported on the quality of the parent-child relationship and on their positive and negative adjustment outcomes. Parents reported on their own distress, posttraumatic growth, quality of the parent-child relationship, and their child's positive and negative adjustment outcomes. Two mediation models were tested, first examining youth-reported adjustment as the outcome and second examining parent-reported youth adjustment. Differences between model path coefficients of CCS and healthy peers were assessed by multigroup analyses.
Results: In the youth-reported model, the parent-child relationship mediated the relation between parental distress and adjustment, with more care leading to better youth-reported adjustment outcomes and more overprotection leading to poorer adjustment outcomes. In the parent-reported model, relational frustration and attachment mediated the link between parental distress/growth and parent-reported youth adjustment, with more relational frustration and less attachment relating to poorer youth adjustment outcomes. Multigroup analyses revealed no differences in model path coefficients between CCS and healthy peers.
Conclusions: Parental distress and the parent-child relationship likely play an important role in both youth- and parent-reported adjustment, and associations among these constructs do not differ between CCS and healthy peers. Families with less optimal parental functioning may benefit from interventions improving the quality of parent-child interactions.
Background: Few researchers routinely disseminate results to participants; however, there is increasing acknowledgment that benefits of returning results outweigh potential risks. Our objective was to determine whether use of specific guidelines developed by the Children’s Oncology Group (COG) when preparing a lay summary would aid in understanding results. Specifically, to determine if caregivers of childhood cancer survivors found a lay summary comprehensive, easy to understand, and helpful following participation in a computerized cognitive training program.
Methods: In a previous study, 68 childhood survivors of acute lymphoblastic leukemia or brain tumor with identified cognitive deficits were randomly assigned to participate in a computerized cognitive intervention or assigned to a wait list. Following conclusion of this study, participants’ caregivers were contacted and provided with a summary of results based on COG guidelines and survey. Forty-three participants returned the surveys, examining caregivers’ interpretation of the summary, reaction to the results, and information regarding preference for receiving results.
Results: Caregivers reported results as important (93%), helpful (93%), easy to understand (98%), and relevant to their child (91%). They interpreted the results as generally positive, with many caregivers endorsing satisfaction (84%); however, concern of long-term implications was expressed (25%). Most preferred receiving results through postal letter (88%) or email (47%).
Conclusions: Benefits of returning research results to families appear to outweigh potential negative consequences. Returning results may help inform families when making future health care-related decisions. There is a great need to develop and assess the utility of guidelines for returning research results.
Objective: Little is known about relations between domains of psychosocial risk among pediatric cancer populations. The Psychosocial Assessment Tool 2.0 (PAT2.0) is one internationally validated screening measure that can examine these relations. This study aimed to examine risk profiles and predictors of these patterns exhibited by American and Dutch families.
Methods: Caregivers of children newly diagnosed with cancer (N = 262; nUSA=145, nNL=117) completed the PAT2.0 as part of larger studies conducted in the United States and the Netherlands. Latent profile analysis and multinomial logistic regression examined differences in demographic and medical variables across risk profiles. Domains assessed included Family Structure/Resources, Child Problems, Sibling Problems, Family Problems, Caregiver Stress Reactions, and Family Beliefs.
Results: Four groups were identified: "Low-Risk" (n = 162) defined by generally low risk across domains; "Moderate-Caregiver" (n = 55) defined by elevated Caregiver Stress Reactions domain; "Moderate-Children" (n = 25) defined by elevated Child Problems and/or Sibling Problems, and "Elevated-Risk" (n = 20) marked by generally high overall risk. Dutch families had higher odds of being in the Elevated-Risk group, compared to the Low-Risk group. Caregiver age, gender, and educational attainment predicted group membership. Families classified as Targeted or Clinical had higher odds of being in the Moderate or Elevated risk groups.
Conclusion: The PAT2.0 appears to identify largely similar patterns of risk, suggesting that families experience common psychosocial difficulties in both American and Dutch societies. The two Moderate groups demonstrated specific risk sources, suggesting that evaluation of domain patterns, rather than reliance on PAT2.0 risk level, could be of clinical benefit.
This integrative literature review examines the facilitators and barriers to open and clear parent-child communication in the context of childhood cancer (for this literature review, child refers to ages 0 to 19 years). The Resilience in Illness Model (Haase et al., 2017) was employed to organize the findings and link to resilience outcomes among children with cancer. In a search of three international databases (PubMed, CINAHL, and PsycINFO), 18 studies met inclusion criteria and were selected for review. The major barrier to open communication was the desire of parents and children to protect each other from the pain that shared knowledge and discussion of cancer treatment and risks may bring. In contrast, parents' desire to improve their relationship with their children worked as a facilitator. For children with cancer, the timing of communication, children's illness condition, and psychological status were critical factors in the decision to communicate. There was a noticeable absence of the child's voice, including adolescents, across the studies reviewed. To develop interventions to improve parentchild communication, an understanding of the perspectives of children is needed, along with perspectives from dyads of children and their parents. These studies will assist in the development of interventions focused on the positive results that come from engaging in open and clear parent-child communication in families of children with cancer.
PURPOSE: To examine the family communication experience of Korean adolescents with cancer and their parents, including how adolescents and their parents verbally share feelings and concerns related to the adolescent's cancer diagnosis with one another, and how emotional communication affects parent-adolescent relationships and the family's coping abilities.
PARTICIPANTS & SETTING: 20 participants (10 adolescents with cancer, aged 13-19 years, and their parents) at a university-affiliated hospital in Seoul, South Korea.
METHODOLOGIC APPROACH: Individual, semistructured interviews were conducted and analyzed based on a qualitative descriptive approach. Conventional content analysis was employed to analyze the data.
FINDINGS: The overarching core theme developed from the content analysis and theme generation was "I cannot share my feelings." This core theme is represented by three main themes: (a) restricted topics that I can share; (b) being closer, but a lack of depth; and (c) effects of restricted topics on their coping.
IMPLICATIONS FOR NURSING: Increased need for nursing awareness and culturally relevant assessment of emotional family communication needs between Korean adolescents with cancer and their family caregivers are necessary.
Background: "Normalization" refers to the process whereby a household with a chronically ill member returns to a normal life to reduce its distress. There has been no valid and reliable instrument to investigate such normalization in Taiwan.
Objective: The aims of this study were to develop and validate a Chinese version of the Normalization Assessment Measure for Caregivers of Children With Cancer (NAM-CCC).
Methods: Translation and revision of the Normalization Assessment Measure into Chinese. Psychometric testing was conducted on 241 caregivers of children with cancer who were treated at a medical center in northern Taiwan. Results: The Cronbach's α of the NAM-CCC (Chinese version) was .93. The construct validity was analyzed by exploratory factor analysis, and 1 factor was extracted. The known group validity indicated that the rate of normalization is higher in the follow-up stage than in the treatment stage (P < .00). The criterionrelated validity of the Taiwan version of the World Health Organization Quality of Life assessment is 0.475 (P < .01). The content validity is 0.88 to 0.99.
Conclusion: The results indicate that the NAM-CCC possesses good reliability and validity when administered to caregivers of children with cancer in Taiwan. Implications for Practice: The instrument can be used to measure normalization in the caregivers of children with cancer. In addition, it will help us understand what support these individuals require to construct normal lives.
The diagnosis of childhood cancer not only affects the life of the child but also impacts the lives of the caregivers as well. This study aims to explore the caregiving stress, coping strategies, and support needs of mothers caring for children/adolescents with cancer during the active treatment phase. Individual semi-structured interviews were conducted, and two authors independently and thematically analyzed data. Caregiving mothers went through a process of emotional changes and a change in lifestyles when their children were diagnosed with cancer and undergoing treatments. It is important to ensure that caregiving mothers of children/adolescents with cancer are well supported by family, friends, and healthcare professionals. Healthcare professionals can develop informational booklets on cancer treatment protocols and work together with mothers. Parent support groups and plans for psychoeducational and spiritual care programs for mothers as forms of informational and emotional support may also be established.
Objective: Caregivers of cancer patients face intense demands throughout the course of the disease, survivorship, and bereavement. Caregiver burden, needs, satisfaction, quality of life, and other significant areas of caregiving are not monitored regularly in the clinic setting, resulting in a need to address the availability and clinical effectiveness of cancer caregiver distress tools. This review aimed to determine the availability of cancer caregiver instruments, the variation of instruments between different domains of distress, and that between adult and pediatric cancer patient populations.
Method: A literature search was conducted using various databases from 1937 to 2013. Original articles on instruments were extracted separately if not included in the original literature search. The instruments were divided into different areas of caregiver distress and into adult versus pediatric populations. Psychometric data were also evaluated.
Results: A total of 5,541 articles were reviewed, and 135 articles (2.4%) were accepted based on our inclusion criteria. Some 59 instruments were identified, which fell into the following categories: burden (n = 26, 44%); satisfaction with healthcare delivery (n = 5, 8.5%); needs (n = 14, 23.7%); quality of life (n = 9, 15.3%); and other issues (n = 5, 8.5%). The median number of items was 29 (4-125): 20/59 instruments (33.9%) had [LESS-THAN OR EQUAL TO]20 items; 13 (22%) had [LESS-THAN OR EQUAL TO]20 items and were psychometrically sound, with 12 of these 13 (92.3%) being self-report questionnaires. There were 44 instruments (74.6%) that measured caregiver distress for adult cancer patients and 15 (25.4%) for caregivers of pediatric patients.
Significance of results: There is a significant number of cancer caregiver instruments that are self-reported, concise, and psychometrically sound, which makes them attractive for further research into their clinical use, outcomes, and effectiveness.
Currently, information about the psychometric properties of the Beck Anxiety Inventory (BAI) in family caregivers of children with cancer is not available; thus, there is no empirical evidence of its validity and reliability to support its use in this population in Mexico or in other countries. This study examined the psychometric properties of the BAI in family caregivers of children with cancer and pursued four objectives: to determine the factor structure of the BAI, estimate its internal consistency reliability, describe the distribution of BAI scores and the level of anxiety in the sample and test its concurrent validity in relation to depression and resilience. This cross-sectional study was carried out with convenience sampling. A sociodemographic questionnaire, the BAI, the Beck Depression Inventory and the Measurement Scale of Resilience were administered to an incidental sample of 445 family caregivers of children with cancer hospitalized at the National Institute of Health in Mexico City. Confirmatory factor analysis using the maximum likelihood method was performed to determine the factor structure and exploratory factor analysis using axis factorization with oblique rotation was conducted. The two-, three- and four-factor models originally proposed for the BAI did not hold. The exploratory factor analysis showed a model of two correlated factors (physiological and emotional symptoms). Confirmatory factor analysis revealed a lack of discriminant validity between these two factors and supported a single-factor model. The internal consistency of the scale reduced to 11 items (BAI-11) was good (alpha = 0.89). The distribution of BAI-11 scores was skewed to the left. High levels of symptoms of anxiety were present in 49.4% of caregivers. The scale was positively correlated with depression and negatively correlated with resilience. These findings suggest that a reduced single-factor version of the BAI is valid for Mexican family caregivers of children with cancer.
Currently, information about the psychometric properties of the Social Support Networks Scale (SSNS) for family caregivers of children with cancer is not yet available; therefore, there is no empirical evidence of its validity and reliability to support its use in this population. The aim of this study is to determine a factorial model of the SSNS, estimate its internal consistency reliability, describe its distribution, and check its concurrent validity. A convenience sample of 633 family caregivers of children with cancer hospitalized in a National Institute of Health in Mexico City was collected. The SSNS, a sociodemographic variables questionnaire, and three instruments that evaluated family functioning, quality of life, and resilience were applied. The five-factor model had a poor data fit and lacked discriminant validity. The sample was divided. In a subsample of 316 participants, exploratory factor analysis suggested a four-factor model. When testing the four-factor model through confirmatory factor analysis, religious support was independent of family support, friend support, and lack of support. In the other subsample of 317 participants, the one-factor model for religious support had a good fit, and the correlated three-factor model, with the remaining factors, showed an acceptable fit. Reliability ranged from acceptable (Guttman's lambda(2) = 0.72) to good (lambda(2) = 0.88). Socio-family support and its three factors were correlated with family functioning, resilience, and quality of life. Religious support was correlated with four factors of resilience and quality of life. A scale of socio-family support with three factors and an independent scale for religious support are defined from the SSNS, and they showed internal consistency and construct validity.
Background: Resilience to disease is a process of positive adaptation despite the loss of health, it involves the development of vitality and skills to overcome the negative effects of adversity, risks, and vulnerability caused by disease. In Mexico, cancer is the leading cause of death in children. Both the diagnosis and the treatment of childhood cancer affect the health of family caregivers. However, resilience is a personality trait that can be protective in these situations. Therefore, resilience is an important psychological construct to measure, evaluate and develop in specific populations and contexts. In Mexico, a scale to assess this trait has been developed. This study aimed to test the reliability and factor structure of the Mexican Measurement Scale of Resilience (RESI-M), describe its distribution, evaluate its relationship with sociodemographic variables, and verify its concurrent validity with psychological well-being, depression, anxiety and parental stress and its independence from social desirability.
Methods: A cross-sectional study was conducted involving an intentional nonprobability sample of 330 family caregivers of children with cancer hospitalized at the National Institute of Health in Mexico City. The participants responded to a sociodemographic variables questionnaire, the Mexican Measurement Scale of Resilience RESI-M, and five other assessment scales.
Results: Overall internal consistency was very high (ordinal alpha = .976). The confirmatory factor analysis demonstrated that the five-factor model had a close fit to the data: NFI = .970, CFI = .997, SRMR = .055, and RMSEA = .019. The distributions of the RESI-M total score followed a normal distribution. The RESI-M total score correlated positively with psychological well-being and negatively with depression, parental stress and anxiety. The overall RESI-M total score also correlated positively with age, but there was no difference in means between women and men. Resilience was independent of social desirability.
Conclusions: The RESI-M shows reliability and construct validity in family caregivers of children with cancer and does not show a bias in relation to social desirability.
Background: Parents are confronted with a range of direct costs and intense caregiving demands following their child's cancer diagnosis, which may potentially threaten the financial stability of the family. Objective The aims of this study were to explore the financial impact of a new childhood cancer diagnosis on families and understand the strategies families use to manage these financial impacts.
Methods: As part of the mixed-methods Childhood Cancer Cost Study, a descriptive qualitative design was conducted. Parents discussed costs and their impact in a semistructured, audio-taped interview. A qualitative content analysis was used to analyze the transcribed data.
Results: Seventy-eight parents participated. Parents used several strategies to maintain financial stability. These strategies consisted of managing expenses, which entailed reducing living expenses and cutting unexpected cancer costs. Efforts to absorb these expenses required families to increase their debt while seeking ways to tap into available resources, including relying on their savings and leveraging their benefits and assets, increasing their paid work hours, relying on their support networks, and seeking help from philanthropy and government agencies for financial help.
Conclusion: Parents used several strategies to manage the increased out-of-pocket expenses and reduced household income.
Implications for Practice: Our findings of the financial impact of cancer costs on families provide insight into needed practice and policy changes aimed at lessening the economic impact of a childhood cancer diagnosis on the family and allow healthcare professionals and researchers to pursue more in-depth cost assessments in the future.
Background: Patients with childhood cancer and their families frequently experience psychosocial distress associated with cancer and its treatment. We thus examined the reliability and validity of a Japanese version of the Psychosocial Assessment Tool, which was designed to screen for psychosocial risk factors among families of children with cancer.
Methods: Forward-backward translation was used to develop the Japanese version of the Psychosocial Assessment Tool. We conducted a cross-sectional study. Mothers (N = 117), who were the primary caregivers of children with cancer, completed the Japanese version of the Psychosocial Assessment Tool and other measures to establish validity. The internal consistency and 2-week test-retest reliability of the Japanese version of the Psychosocial Assessment Tool were also examined.
Results: The internal consistency of the Japanese version of the Psychosocial Assessment Tool total score was sufficient (Kuder-Richardson 20 coefficient = 0.84); however, the subscales 'structure and resources,' 'stress reactions' and 'family beliefs' were less than optimal (Kuder-Richardson 20 coefficients = 0.03, 0.49 and 0.49, respectively). The test-retest reliability for the Japanese version of the Psychosocial Assessment Tool total score was sufficient (intraclass correlation coefficient = 0.92). Significant correlations with the criteria measures indicated the validity of the Japanese version of the Psychosocial Assessment Tool total score. The optimal cut-off score for screening mothers with high psychosocial risk was 0.9/1.0, which was associated with 92% sensitivity and 63% specificity.
Conclusions: This study indicated that the Japanese version of the Psychosocial Assessment Tool is a valid and reliable tool to screen mothers for elevated distress.
Objective: The present study aimed to assess the consequences of providing nursing training to caregivers of children with cancer on the side effects associated with chemotherapy.
Design: The present study used a pre-test-post-test experimental design. Setting The study was conducted in a paediatric hematological oncology hospital in Ankara, Turkey
Subjects: This study was conducted with 40 caregivers responsible for looking after child patients, all of which had been recently diagnosed with cancer, but who had not started chemotherapy. Primary argument The knowledge scores of the caregivers on issues related to infection and bleeding risk, nutrition and oral care and total scores were significantly higher than their pre-test scores before undergoing training (p<0.05).
Conclusion: Planned training on the problems that may arise due to the side effects of chemotherapy was found to be effective in increasing the knowledge level of caregivers. The authors suggest that training in this subject should be provided before initiating a chemotherapy program, before the occurrence of side effects, and visual and written materials should be used.
Objective: Several studies have shown that spiritual/religious beliefs are associated with mental health and quality of life. However, so far, no study assessed the relationship between spiritual/religious coping (SRC) and depressive symptoms in family caregivers (FCs) of pediatric cancer patients, particularly in Latin America. This study aimed to investigate whether Positive and Negative SRC strategies are associated with depressive symptoms in FCs of pediatric cancer patients in Brazil.
Methods: We conducted a cross-sectional study comprising 77 FCs of pediatric cancer patients from one Brazilian Pediatric Oncology Institute. Spiritual/religious coping was assessed using the Brief SRC scale, and depressive symptoms were evaluated by the Beck Depression Inventory. Multiple regression models were performed to identify factors associated with SRC of FCs and their depressive symptoms.
Results: In the unadjusted linear regression models, depressive symptoms were positively associated with Negative SRC (B = 0.401; P < .001; Adjusted R 2 = 16.1%) but not with Positive SRC (B = 0.111; P = .334). After adjusting for socio-demographics, religious practice/faith, and health, Negative SRC remained associated with depressive symptoms (B = 3.56; P = .01; Adjusted R 2 = 37.8%). In the logistic regression models, depressive symptoms were positively associated with Negative SRC (OR = 3.68; 95% CI, 1.46-9.25; P = .006), but not with Positive SRC (OR = 1.49; 95% CI, .69-3.22; P = .309). After adjustments, Negative SRC remained significant (OR = 4.01; 95% CI, 1.21-13.33; P = .023).
Conclusions: Negative SRC was associated with depressive symptoms in FCs of pediatric cancer patients. Health professionals must be aware of the use of Negative SRC strategies in oncology care. (Copyright © 2018 John Wiley & Sons, Ltd.)
Acute lymphoblastic leukaemia (ALL) is the most common childhood malignancy. Caring for children with ALL is an uncommon experience for parents without medical training. They urgently need professional assistance when their children are recovering at home. This paper documents the process of developing an Android application (app) "Care Assistant" for family caregivers of children with ALL. Key informant interviews and focus group studies were used before programming the app. The key informants and focus group members included: caregivers of children with ALL, cancer care physicians and nurses, and software engineers. We found several major challenges faced by caregivers: limited access to evidence-based clinic information, lack of financial and social assistance, deficient communications with doctors or nurses, lack of disease-related knowledge, and inconvenience of tracking treatments and testing results. This feedback was used to develop "Care Assistant". This app has eight modules: personal information, treatment tracking, family care, financial and social assistance, knowledge centre, self-assessment questionnaires, interactive platform, and reminders. We have also developed a web-based administration portal to manage the app. The usability and effectiveness of "Care Assistant" will be evaluated in future studies.
Background: Despite standardization in disease assessments and curative interventions for childhood cancer, palliative assessments and psychosocial interventions remain diverse and disparate.
Aim: Identify current approaches to palliative care in the pediatric oncology setting to inform development of comprehensive psychosocial palliative care standards for pediatric and adolescent patients with cancer and their families. Analyze barriers to implementation and enabling factors.; Design: Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines framed the search strategy and reporting. Data analysis followed integrative review methodology.
Data Sources: Four databases were searched in May 2014 with date restrictions from 2000 to 2014: PubMed, Cochrane, PsycINFO, and Scopus. A total of 182 studies were included for synthesis. Types of studies included randomized and non-randomized trials with or without comparison groups, qualitative research, prior reviews, expert opinion, and consensus report.
Results: Integration of patient, parent, and clinician perspectives on end-of-life needs as gathered from primary manuscripts (using NVivo coding for first-order constructs) revealed mutual themes across stakeholders: holding to hope, communicating honestly, striving for relief from symptom burden, and caring for one another. Integration of themes from primary author palliative care outcome reports (second-order constructs) revealed the following shared priorities in cancer settings: care access; cost analysis; social support to include primary caregiver support, sibling care, bereavement outreach; symptom assessment and interventions to include both physical and psychological symptoms; communication approaches to include decision-making; and overall care quality.
Conclusion: The study team coordinated landmark psychosocial palliative care papers into an informed conceptual model (third-order construct) for approaching pediatric palliative care and psychosocial support in oncology settings. (© The Author(s) 2015.)
Objective: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support. This study assessed how this standard is being implemented in current healthcare and palliative care practices, as well as barriers to its implementation.
Method: Experts in the field of pediatric palliative care and oncology created a survey that was posted with review and permission on four listservs. The survey inquired about pediatric palliative and bereavement program characteristics, as well as challenges and barriers to implementation of the published standards of care.
Result: The majority of participants (N = 100) self-reported as palliative care physicians (51%), followed by oncologists (19%). Although 59% of staff reported that their center often or always deliver bereavement care after a child's death, approximately two-thirds reported having no policy for the oncology team to routinely assess bereavement needs. Inconsistent types of bereavement services and varying duration of care was common. Twenty-eight percent of participants indicated that their center has no systematic contact with bereaved families after the child's death. Among centers where contacts are made, the person who calls the bereaved parent is unknown to the family in 30% of cases. Few centers (5%) use a bereavement screening or assessment tool.
Significance of results: Lack of routine assessment of bereavement needs, inconsistent duration of bereavement care, and tremendous variability in bereavement services suggest more work is needed to promote standardized, policy-driven bereavement care. The data shed light on multiple areas and opportunities for improvement.
Caregiving stress has been associated with changes in the psychological and physical health of parents of children with cancer, including both partnered and single parents. While parents who indicate "single" on a demographic checklist are typically designated as single parents, a parent can be legally single and still have considerable support caring for an ill child. Correspondingly, an individual can be married/partnered and feel alone when caring for a child with serious illness. In the current study, we report the results from our exploratory analyses of parent self-reports of behavior changes during their child's treatment. Parents (N = 263) of children diagnosed with cancer were enrolled at 10 cancer centers. Parents reported significant worsening of all their own health behaviors surveyed, including poorer diet and nutrition, decreased physical activity, and less time spent engaged in enjoyable activities 6 to 18 months following their child's diagnosis. More partnered parents found support from friends increased or stayed the same since their child's diagnosis, whereas a higher proportion of lone parents reported relationships with friends getting worse. More lone parents reported that the quality of their relationship with the ill child's siblings had gotten worse since their child's diagnosis. Spiritual faith increased for all parents. References
Purpose: Parents have psychosocial functions that are critical for the entire family. Therefore, when their child is diagnosed with cancer, it is important that they exhibit resilience, which is the ability to preserve their emotional and physical well-being in the face of stress. The Resilience Model for Parents of Children with Cancer (RMP-CC) was developed to increase our understanding of how resilience is positively and negatively affected by protective and risk factors, respectively, in Chinese parents with children diagnosed with cancer.
Methods: To evaluate the RMP-CC, the latent psychosocial variables and demographics of 229 parents were evaluated using exploratory structural equation modeling (SEM) and logistic regression.
Results: The majority of goodness-of-fit indices indicate that the SEM of RMP-CC was a good model with a high level of variance in resilience (58%). Logistic regression revealed that two demographics, educational level and clinical classification of cancer, accounted for 12% of this variance.
Conclusions: Our results indicate that RMP-CC is an effective structure by which to develop mainland Chinese parent-focused interventions that are grounded in the experiences of the parents as caregivers of children who have been diagnosed with cancer. RMP-CC allows for a better understanding of what these parents experience while their children undergo treatment. Further studies will be needed to confirm the efficiency of the current structure, and would assist in further refinement of its clinical applications.
Background: The increased prevalence of cancer in children influences the family as the main child caregiver. Regarding the spiritual dimension for increasing the life quality of parents and its effect on the management of the conditions induced by the disease, the goal of this study was to determine the strategy of care in parents of cancer children. Materials and Methods: This study was performed with a qualitative method using the content analysis approach. Fifteen parents of the cancer children who were admitted to the Oncology and Hematology Wards of the Iranian Public Children's Hospitals participated in this study. First, the mothers were interviewed, then other participants, including fathers and mothers who had a special experience about this issue were studied through theoretical sampling. Data were analyzed using content analysis method.
Results: Data analysis led to the apparent main category of "intelligent rethinking" that included two subcategories: 1) "Cognitive confrontation" with the subsidiary categories of "effort to adopt" and "accept the disease" and 2) Optimism with the subsidiary categories of "hope" and "positive energy". Conclusion: This study showed that spirituality has an important role in accepting and complying with disease by parents of a cancer child. This would lead to managing the conditions and achieving the hope, positive energy, and efficient management of the conditions. Hence, paying attention to this important dimension in caring to achieve the suitable control and management of the conditions and accept the disease by parents is a necessity.
Background: Intimate partners of patients with cancer often experience significant distress, but there is a lack of psychological interventions that specifically target this population. 'Resilient Caregivers' is a novel resilience-based intervention for distressed partner cancer caregivers. The intervention was developed according to a resilience framework focusing on meta-reflective skills, coping strategies and value clarification. Objectives: The aim of this study is to evaluate the effectiveness of this intervention in a randomised trial. Methods and analysis Eighty participants will be invited through the Oncology Department at Herlev Hospital, Denmark and randomised to either the intervention or usual care. Methods: Participants are eligible if they are partners (married or unmarried) of patients diagnosed with cancer and experience distress (>4 on the distress thermometer). 'Resilient Caregivers' consists of seven manualised group sessions (2.5 hours each), focusing on resilience in relation to being a partner caregiver of a patient with cancer. The primary outcome is symptoms of anxiety, while secondary outcomes include distress, depression, quality of life, sleep quality and resilience. Data will be collected at baseline, 3, 6 and 12 months follow-up using validated scales, and analysed using mixed models for repeated measures. Ethics and dissemination: This study will follow the ethical principles in the Declaration of Helsinki and has been reviewed by the Ethics Committee of the Capital Region of Denmark (Journal no. 18055373). Written informed consent will be obtained from all participants. Results will be reported through scientific peer-reviewed journals and relevant conferences.
Objectives: This study examines the post-traumatic growth (PTG) of bereaved families who care for cancer patients and related factors in Japan. Methods: Participants included 1298 members of bereaved families of cancer patients (aged 20 or older). An anonymous self-administered questionnaire on PTG, coping, and social support was mailed to 496 bereaved families who provided written informed consent. Results: Responses were obtained from 476 bereaved families; however, since 28 families had missing data, 448 were included for the analyses. The mean age of participants was 61.4 years: 69% women and 45% spouses. The average age of the deceased was 72.8 years old for men (59%). The PTG score of the bereaved families was higher for women than for men (p < 0.0001). Moreover, the Post-Traumatic Growth Inventory Score for those above 65 years of age was higher than of those below 65 years of age (p < 0.0001). A regression analysis confirmed that emotion-focused coping, problem-focused coping, relationship with the deceased, advanced age of bereaved families, and emotional support impacted PTG. Conclusion: The significance of the deceased for the bereaved, bereaved family members being older in age, emotion-focused coping, problem-focused coping, and emotional support suggest that these aspects are associated with psychological growth in terms of accepting the death of a loved one and moving forward. It is necessary to evaluate the relationship between the bereaved family and the deceased, the age and gender of the bereaved, coping behaviors, and support status and establish a higher quality bereaved family care system.
Background: Physical activity (PA) has been positively associated with health-related quality of life (HRQoL) among cancer patients and family caregivers. However, there has been no relevant research for patient-caregiver dyads. Methods: Path analysis, based on the actor–partner interdependence model (APIM), was used to examine the relationship between physical activity and health-related quality of life and explore the mediating role of emotional distress in 233 dyads. Results: In both patients and caregivers, physical activity had a direct positive effect on physical quality of life (QoL) but not on mental. There was a significant indirect effect of physical activity on health-related quality of life via emotional distress for both dyad members. Patients’ and caregivers’ confidence in fighting cancer was negatively associated with their own emotional distress. Caregivers’ confidence in fighting cancer was positively associated with their physical activity and also negatively associated with patients’ emotional distress. Conclusions: Physical activity may be considered as a possible behavioral and rehabilitation strategy for improving health-related quality of life in patient-caregiver dyads and reducing negative symptoms. Future research and intervention may consider cancer patient-family caregiver dyad as a unit of care.
Background: The experience of caring for cancer patients has adverse outcomes for family caregivers. The ability to care for a sick child is affected by the mother’s health; to empower mothers, it will be necessary to examine their caring ability. Objective: The aim of this study was to carry out a psychometric evaluation of the Caring Ability of Family Caregivers of Patients With Cancer Scale–Mothers’ Version (CAFCPCS–Mothers’ Version). Methods: The present study is a psychometric evaluation of the CAFCPCS–Mothers’ Version. The sample consisted of 196 mothers of children in treatment for cancer selected through convenience sampling. The face, content and construct validity, internal consistency, and stability of the scale were measured. Data were analyzed using the software SPSS 19 and LISREL 8.8. Results: After removing 2 items during confirmatory factor analysis, the values of root-mean-square error of approximation, comparative fit index, and nonnormed fit index were reported to be 0.066, 0.92, and 0.91, respectively. The Cronbach’s α was calculated to be 0.71 and the stability correlation coefficient was 0.75. The final tested scale included 29 items in 5 dimensions: effective role play, fatigue and surrender, trust, uncertainty, and caring ignorance for mothers of children with cancer. Conclusion: The CAFCPCS–Mothers’ Version has satisfactory content, face, and construct validity and adequate reliability in terms of internal consistency and stability in a sample of mothers of children receiving treatment for cancer. Implication for Practice: The CAFCPCS–Mothers’ Version can be used to assess the caring ability of Iranian mothers of children with cancer and to determine maternal care needs.
Background: Previous research on the needs of family cancer caregivers (FCCs) have not elucidated associations between specific caregiving needs. Methods: Network analysis, a statistical approach that allows the estimation of complex relationship patterns, helps facilitate the understanding of associations between needs and provides the opportunity to identify and direct interventions at relevant and specific targets. No studies to date, have applied network analysis to FCC populations. The aim of the study is to explore the network structure of FCC needs in a cohort of caregivers in Singapore. FCCs (N = 363) were recruited and completed a self-report questionnaire on socio-demographic data, medical data on their loved ones, and the Needs Assessment of Family Caregivers-Cancer scale. The network was estimated using state-of-the-art regularized partial correlation model. The most central needs were having to deal with lifestyle changes and managing care-recipients cancer-related symptoms. Results: The strongest associations were between (1) having enough insurance coverage and understanding/navigating insurance coverage, (2) managing cancer-related pain and managing cancer-related symptoms, (3) being satisfied with relationships and having intimate relationships, and (4) taking care of bills and paying off medical expenses. Lifestyle changes, living with cancer, and symptom management are central to FCCs in Singapore. These areas deserve special attention in the development of caregiver support systems. Conclusions: Our findings highlight the need to improve access to social and medical support to help FCCs in their transition into the caregiving role and handle cancer-related problems.
Background: To investigate whether health literacy (HL) among informal caregivers of breast cancer (BC) survivors is associated with patient psychological outcomes. Methods: We used data (n = 340 pairs) from baseline questionnaires administered in the MyHealth trial investigating nurse-led BC follow-up. All BC survivors and their invited caregivers were included immediately after completion of primary treatment. We performed multivariate regression analyses to examine the association between caregiver HL (nine dimensions as measured by the Health Literacy Questionnaire) as exposure and patient depression, anxiety, and health-related quality of life (HQoL) as outcomes. We further examined whether any association differed according to type of caregiver, patient HL, and patient activation (skill in managing one’s health). Results: Three dimensions, “ability to engage with providers” (β = − 0.2), “navigating the system” (β = − 0.2), and “understand health information” (β = − 0.2), were significantly associated with lower patient depression (p < 0.05), while four dimensions, “having sufficient information” (β = 0.3), “navigating the system” (β = 0.2), “find health information” (β = 0.2), and “understand health information” (β = 0.2), were significantly associated with better patient HQoL (p < 0.05). No significant associations were found for anxiety. Patient HL and activation did not significantly modify the associations, while certain associations for depression were stronger in patients with non-partner caregivers. Conclusions: The HL of informal caregivers may play an important role in optimizing psychological outcomes in cancer survivors. Implications for Cancer Survivors: Involving informal caregivers, who can provide support related to health information and services, may be beneficial for the psychological well-being of cancer survivors.
Background: Caregivers of cancer patients are at high risk of experiencing impairments in terms of anxiety, depression and quality of life. Objectives: This study examines the mediation capacity that perceived emotional support can have after diagnosis and six months later between depression and anxiety after diagnosis and quality of life in informal caregivers of cancer patients. Design: A sample of 67 informal caregivers of cancer patients was used. This study is longitudinal, ex post facto prospective, with convenience sampling. Methods: Participants completed the Medical Outcomes Study 36-Item Short Form (SF-36), the Hospital Anxiety and Depression Scale (HADS) and the Berlin Social Support Scale (BSSS) and a sociodemographic questionnaire. Data were collected between March 2017 and November 2018. Results: Spearman's correlation analysis showed that anxiety, depression and perceived emotional support were related to quality of life. Conclusions: The mediation analysis showed that the relationship between depression after diagnosis and quality of life six months later was mediated by perceived emotional support.
Background: Many informal caregivers experience significant caregiving burden and report worsening healthrelated quality of life (HRQoL). Caregiver HRQoL may vary by disease context, but this has rarely been studied. Objectives: Informed by the Model of Carer Stress and Burden, we compared HRQoL outcomes of prevalent groups of caregivers of people with chronic illness (i.e., dementia, cancer, chronic obstructive pulmonary disease [COPD]/emphysema, and diabetes) and noncaregivers and examined whether caregiving intensity (e.g., duration and hours) was associated with caregiver HRQoL. Methods: Using 2015-2018 Behavioral Risk Factor Surveillance System data, we identified caregivers of people with dementia (n = 4,513), cancer (n = 3,701), COPD/emphysema (n = 1,718), and diabetes (n = 2,504) and noncaregivers (n = 176,749). Regression analyses were used to compare groups. Results: Caregiver groups showed small, nonsignificant differences in HRQoL outcomes. Consistent with theory, all caregiver groups reported more mentally unhealthy days than noncaregivers (RRs = 1.29-1.61, ps < .001). Caregivers of people with cancer and COPD/emphysema reported more physically unhealthy days than noncaregivers (RRs = 1.17-1.24, ps < .01), and caregivers of people with diabetes reported a similar pattern (RR = 1.24, p = .01). However, general health and days of interference of poor health did not differ between caregivers and noncaregivers. Across caregiver groups, most caregiving intensity variables were unrelated to HRQoL outcomes; only greater caregiving hours were associated with more mentally unhealthy days (RR = 1.13, p < .001). Conclusions: Results suggest that HRQoL decrements associated with caregiving do not vary substantially across chronic illness contexts and are largely unrelated to the perceived intensity of the caregiving. Findings support the development and implementation of strategies to optimize caregiver health across illness contexts.
Background: Acute myeloid leukemia (AML) is associated with lower survival and greater unmet need compared with some other hematologic malignancies (HMs). Despite differences in acuteness between AML and other HMs, the burden of family caregivers (FCs) of patients with these malignancies offer similar patient experiences.Methods: A targeted literature review was conducted to explore FC burden of patients with AML and HM with and without hematopoietic stem cell transplant (HSCT). Instruments to measure and interventions to address FC burden were identified. Methods: Studies on economic burden and compromised health-related quality of life (HRQoL) associated with FC burden, family affairs, and childcare from 1 January 2010 to 30 June 2019 were identified through database and hand searches. Published English articles on randomized controlled trials or standardized qualitative or quantitative observational studies were included. FCs were those in close familial proximity to the patient (i.e., spouse, parents, children, relatives, other family members, significant others). Results: Seventy-one publications were identified (AML, n = 3; HM, n = 29; HSCT, n = 39). Predominant burden categories included humanistic (n = 33), economic (n = 17), and interventions (n = 22); one study was classified as humanistic and economic. FCs lack sufficient resources to manage stressors and experience negative psychological, behavioral, and physiological effects. FCs of patients with HMs reported post-traumatic stress disorder, significant sleep problems, moderate-to-poor HRQoL, and negative impacts on family relationships. Instruments designed to measure caregiver burden were generic and symptom-specific. Educational, expressional, and self-adjustment interventions were used to improve FC burden. Conclusion: Findings indicate a need for additional research, public health approaches to support FCs, and effective interventions to address FC burden. Minimizing FC burden and improving quality of life may reduce the overall healthcare service use and allow FCs to more effectively fulfill caregiver tasks. Support systems to alleviate caregiver burden may create reinforced integrators, thus positively affecting quality of life and possibly the outcomes of patients.
Objective: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. Methods: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. Results: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. Conclusions: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.
Background: Relatives are often involved in caregiving for patients with advanced cancer and carry a heavy burden. Self-care and resilience might be beneficial to enhance their wellbeing and burden-bearing capacity. Objectives: This study assessed the engagement in self-care and resilience in relatives of patients with advanced cancer and its association with their caregiver burden. Methods: This study analyzed baseline data of the eQuiPe study, a prospective longitudinal, multicenter, observational study on quality of care and life of patients with advanced cancer and their relatives in which self-care (Self-care Practices Scale), resilience (Connor-Davidson Resilience Scale), and caregiver burden (Zarit Burden Interview (ZBI)) of relatives were included. Their scores were compared with a gender- and age-matched normative population. Multivariable logistic regression analysis was performed to assess the association between self-care and resilience with caregiver burden. Results: Most of the 746 relatives were the patient’s partner (78%) and 54% reported to be an informal caregiver of the patient. The median hours of caregiving a week for all relatives was 15 and 11% experienced high caregiver burden (ZBI > 20). Relatives who reported a high caregiver burden engaged less often in self-care (OR =.87) and were less resilient (OR =.76) compared to relatives with low/medium caregiver burden. Relatives with high caregiver burden were younger (OR =.96), highly educated (OR = 2.08), often reported to be an informal caregiver of the patient (OR = 2.24), and were less well informed about the importance of self-care (OR =.39). Conclusion: A significant number of relatives of patients with advanced cancer experienced high caregiver burden. As more self-care and resilience were associated with lower experienced caregiver burden, creating awareness of the beneficial potential of self-care is important. Future studies should illuminate the causal relation. Trial registration number: NTR6584 (date of registration: 30 June 2017)
Background: To synthesise existing qualitative evidence regarding the experiences of people living with cancer and their family caregivers using eHealth technology in their home setting. Method: A narrative review using a systematic approach was utilised. Five databases (PubMed, CINAHL, EMBASE, PsycINFO and the Cochrane Library) were searched using a tailored search strategy to identify primary research articles published between January 2005 and May 2021. Studies were quality appraised using the Critical Appraisal Skills Programme's Qualitative Studies Checklist and the Mixed Method Appraisal Tool, where relevant. Identified studies were appraised by three reviewers and data were extracted for analysis. Key themes were identified and agreed upon by the authors. Results: 28 empirical studies were included in the review. Five major themes emerged: (i) understanding of cancer and its care (ii) alignment and integration of eHealth technology into daily life (iii) connection and collaboration with healthcare professionals, family and peers (iii) reassurance and sense of safety (iv) and the psychosocial impact on the self during the cancer experience. Conclusions: eHealth technology can have positive role in the lives of people with cancer and their family caregivers, beyond the intended health outcomes of the intervention. Individual preferences amongst people with cancer and their family caregivers using eHealth technology must be considered, especially regarding cancer information delivery, content and support methods. This review underlines a critical need for further in-depth evidence on the personal meaning and relationships people with cancer and their family caregivers develop with eHealth technology in an ambulatory care setting.
Background: Cancer is a taxing chronic disease that demands substantial care, most of which is shouldered by informal caregivers. As a result, cancer caregivers often have to manage considerable challenges that could result in severe physical and psychological health consequences. Technology-based interventions have the potential to address many, if not all, of the obstacles caregivers encounter while caring for patients with cancer. However, although the application of technology-based interventions is on the rise, the term is seldom defined in research or practice. Considering that the lack of conceptual clarity of the term could compromise the effectiveness of technology-based interventions for cancer caregivers, timely research is needed to bridge this gap. Objective: This study aims to clarify the meaning of technology-based interventions in the context of cancer caregiving and provide a definition that can be used by cancer caregivers, patients, clinicians, and researchers to facilitate evidence-based research and practice. Methods: The 8-step concept analysis method by Walker and Avant was used to analyze the concept of technology-based interventions in the context of cancer caregiving. PubMed, PsycINFO, CINAHL, and Scopus were searched for studies that examined technology-based interventions for cancer caregivers. Results: The defining attributes of technology-based interventions were recognized as being accessible, affordable, convenient, and user-friendly. On the basis of insights gained on the defining attributes, antecedents to, and consequences of technology-based interventions through the concept analysis process, technology-based interventions were defined as the use of technology to design, develop, and deliver health promotion contents and strategies aimed at inducing or improving positive physical or psychological health outcomes in cancer caregivers. Conclusions: This study clarified the meaning of technology-based interventions in the context of cancer caregiving and provided a clear definition that can be used by caregivers, patients, clinicians, and researchers to facilitate evidence-based oncology practice. A clear conceptualization of technology-based interventions lays foundations for better intervention design and research outcomes, which in turn have the potential to help health care professionals address the needs and preferences of cancer caregivers more cost-effectively.
Objectives: Explore learning processes associated with a psychoeducational pain selfmanagement intervention. Background: Self-management of cancer pain is challenging for patients and their family caregivers (FCs). While psychoeducational interventions can support them to handle these tasks, it remains unclear how learning processes are hampered or facilitated. Methods: A convergent parallel mixed methods design with qualitative data collection embedded in a randomized controlled trial (RCT) was used. Outpatients with cancer and FCs were recruited from three Swiss university hospitals. The six-week intervention consisted of education, skills building, and nurse coaching. Quantitative data on pain management knowledge and self-efficacy were analyzed using multilevel models. Patients and FCs were interviewed post-RCT regarding their learning experiences. Qualitative data analysis was guided by interpretive description. Finally, quantitative and qualitative data were integrated using case level comparisons and a meta-matrix. Results: Twenty-one patients and seven FCs completed this study. The group-by-time effect showed increases in knowledge (p = 0.035) and self-efficacy (p = 0.007). Patients' and FCs' learning through experience was supported by an intervention nurse, who was perceived as competent and trustworthy. After the study, most intervention group participants felt more confident to implement pain self-management. Finally, data integration showed that declining health hampered some patients' pain self-management. Conclusions: Competent and trustworthy nurses can support patients' and FCs' pain self-management by providing individualized interventions. Using a diary, jointly reflecting on the documented experiences, and addressing knowledge deficits and misconceptions through the use of academic detailing can facilitate patients' and FCs' learning of critical skills.
Background: The experience of bereavement is associated with severe physical, psychological, social and spiritual reactions in the parents of children with cancer. Because of that, the families of these children need to receive bereavement services. Objectives: The aim of this study was to explore the bereavement needs of families of children with cancer from the perspective of health caregiver as people who have a close relationship with the child and the family. Methods: This qualitative descriptive study design in. In total 15 semi-structured interviews were conducted using a purposive sampling in 2018. Interviews were recorded and transcribed and conventional content analysis was used to analysis the data. The Trustworthiness of the data were assessed according to the criteria of Lincoln and Guba. Results: From the data analysis, needs of the bereaved family were categorized in three dimension including “achieving peace,” “Abandoned family access to care,” and “continuing care.” The category of “achieving peace” includes spiritual and existential support, companionship with the family, contact with other bereaved families, support in passing and accepting the bereaved and continuing empathetic communication with the family, the category “Abandoned family access to care” includes the promotion of family self-control, awareness of end-of-life care to the family, and the category of “continuing care,” includes formal and informal family care and individualized care. Conclusion: It is necessary for the care team to pay special focus to family considering the needs of the family about the death of the patient and the challenges of the family bereavement period. It is recommended that members of the health care team should be trained in assessing family needs, identifying risks of adverse outcomes, continuing care, and providing resources during bereavement. The needs of the bereaved family should also be addressed in their care plan.
Background: Early childhood cancer creates various challenges in parents' lives and influences new needs, the identification of which requires a valid and reliable tool. Objective:The aim of this study was to translate and validate the Family Inventory of Needs (FIN) with the parents of children with cancer. Method: In this methodological research, 210 parents of children with cancer visiting pediatric oncology referral centers in Iran were selected through convenience sampling, based on the study inclusion criteria. The Farsi version of FIN was developed through translation and back-translation. Face validity as well as construct validity using the confirmatory factor analysis (CFA) were performed. The correlation between the score of FIN and the score of Caring Ability of Family Caregivers of Patients with Cancer-mothers’ version (CAFCPC-mother's version) was also calculated in order to evaluate the convergent validity. Furthermore, the stability and internal consistency reliability were investigated using software packages LISREL and SPSS. Results: The results of CFA showed that the single-factor structure of the tool with 20 items has an appropriate fit with the data and is therefore approved. Pearson coefficient (r) of the correlation between the mean scores of the NFI and the CAFCPC-mothers’ version was calculated to be 0.17 (p < 0.01). The Cronbach's alpha of the tool was calculated as 0.90, and the test-retest correlation coefficient as ICC = 0.91. Conclusion: The Farsi version of the FIN has appropriate psychometric properties among the population of Iranian parents of children with cancer. It may therefore be a suitable tool for measuring the emotional, physical, and psychological support provided for the parents of children with cancer.
Objectives: To provide an overview on the role of family caregivers (FCGs) in the care of older adults with cancer and review quality of life needs for FCGs. Data Sources: Journal articles, research reports, state of the science papers, position papers, and clinical guidelines from professional organizations were used. Conclusion: The high prevalence of multiple comorbidities and the associated burden of geriatric events in older adults have a substantial impact on the quality of life of their FCGs. Practical and efficient models of comprehensive assessment, interventions, and caregiving preparedness support are needed to improve outcomes for both older adults with cancer and their FCGs. Implications for Nursing Practice: Oncology nurses practicing in clinical and research settings have a responsibility to prepare themselves with evidence-based knowledge and resources to include the needs of FCGs in the care provided to older adults with cancer.
Background: Family caregivers of dying cancer patients are affected by grief experiences and bereavement complications. Several approaches such as psycho-emotional care and an increase in spirituality have been suggested to diminish these complications. However, the knowledge about the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients is limited. This is a study protocol describing a hospital-based mixed-methods study on the effects of family-based dignity intervention and expressive writing on anticipatory grief in family caregivers of dying cancer patients. Methods: This mixed-methods study will be done in an embedded explanatory design with two quantitative and qualitative phases. In the first phase (quantitative), a randomized clinical trial will be done, in which 200 family caregivers of dying cancer patients will be randomly assigned to one of the four groups: family-based single dignity intervention (group 1), expressive writing intervention (group 2), combined family-based single dignity intervention and expressive writing (group 3), and control (group 4). At baseline, 1 week and 2 weeks after the interventions, anticipatory grief will be assessed by a 13-item anticipatory grief scale. After the quantitative phase, the qualitative phase will be conducted through the conventional content analysis approach of Granheim and Lundman, in which an individual semi-structured interview will be taken from participants in the first phase to collect data on their experiences on interventions. Finally, data from the quantitative and qualitative phases will be analyzed and discussed. Discussion: Family caregivers of dying cancer patients usually experience depression, anxiety, and psychological distress due to isolation and inadequate social support. Psychological interventions such as dignity and expressive writing interventions may help caregivers to obtain a better understanding of themselves and to increase their abilities to cope with caregiving difficulties. Therefore, there is a need for a comprehensive study confirming the effects of mentioned interventions on family caregivers of dying cancer patients. Trial registration: Iranian Registry of Clinical Trials (www.irct.ir) identifier: IRCT20210111050010N1. Date of trial registration: Feb 6, 2021. This is the first version of this protocol.
Background: Sleep disturbances are common among family caregivers (FCs) of patients with advanced cancer. Self-administered acupressure can combat insomnia, but no study has been conducted to evaluate its efficacy in caregivers of patients with advanced cancer. Objective: The aim of this study is to investigate whether self-administered acupressure improves sleep quality for FCs of patients with advanced cancer. Methods: Family caregivers of patients with advanced cancer who reported sleep disturbance (Pittsburgh Sleep Quality Index scores >5 in recent months) were recruited. The experimental group self-administered acupressure at the Baihui (GV20), Fengchi (GB20), Neiguan (PC6), and Shenmen (HT7) points over a 12-week period, whereas the comparison group received sleep hygiene education. Sleep quality was assessed subjectively at 4, 8, and 12 weeks after the intervention using the Pittsburgh Sleep Quality Index and objectively using actigraphy measurements. Improvements in sleep quality were analyzed using a generalized estimating equation. Results: Compared with the control group, the experimental group demonstrated significantly lower sleep latency (Wald χ2 = 11.49, P = .001) and significantly better sleep efficiency (Wald χ2 = 5.24, P = .02) according to actigraphy measurements, but Pittsburgh Sleep Quality Index scores did not differ significantly between the groups. Conclusions: Self-administered acupressure did not demonstrate favorable effects on subjective sleep quality, but did reduce sleep latency and improve sleep efficiency, according to actigraphy measurements. Self-administered acupressure may help relaxation and sedation and promote sleep in FCs. Implications for Practice: Healthcare providers may consider advising FCs to apply this self-administered acupressure to improve their sleep latency and sleep efficiency.
Background: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers’ quality of life. Objectives: This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads’ emotional functioning and self-efficacy. Methods: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. Discussion: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. Trial registration: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349. Date and version identifier: 20211209_DIAdIC_Protocol_Article.
Background: Informal care plays an important role in the care of care‐recipients. Most of the previous studies focused on the primary caregivers and ignored the importance of non‐primary caregivers. Moreover, little is known about the provision of informal care in the context of home‐based palliative care. Objectives: The purpose of this study was to examine the provision of primary and non‐primary informal care‐giving and their respective determinants. Primary caregivers assume the main responsibility for care, while non‐primary caregivers are those other than the primary caregiver who provide care‐giving. Methods: A longitudinal, prospective cohort design was conducted and data were drawn from two palliative care programs in Canada between November 2013 and August 2017. A total of 273 caregivers of home‐based palliative care cancer care‐recipients were interviewed biweekly until the care recipient died. The outcomes were the propensity and intensity of informal care‐giving. Regression analysis with instrumental variables was used. Results: About 90% of primary caregivers were spouses and children, while 53% of non‐primary caregivers were others rather than spouses and children. The average number of hours of primary and non‐primary informal care‐giving reported for each 2‐week interview period was 83 hr and 23 hr, respectively. Hours of home‐based personal support workers decreased the intensity of primary care‐giving and the likelihood of non‐primary care‐giving. Home‐based nursing visits increased the propensity of non‐primary care‐giving. The primary care‐giving and non‐primary care‐giving complement each other. Care recipients living alone received less primary informal care‐giving. Employed primary caregivers decreased their provision of primary care‐giving, but promoted the involvement of non‐primary care‐giving. Conclusions: Our study has clinical practices and policy implications. Suitable and targeted interventions are encouraged to make sure the provision of primary and non‐primary care‐giving, to balance the work of the primary caregivers and their care‐giving responsibility, and to effectively arrange the formal home‐based palliative care services.
Background: Family caregivers' distinct depressive-symptom trajectories are understudied and have been examined independently during end-of-life (EOL) caregiving or bereavement, making it difficult to validate two competing hypotheses (wear-and-tear vs. relief) of caregiving effects on bereavement. Existing studies may also miss short-term heterogeneity in depressive symptoms during the immediate postloss period due to lengthy delays in the first postloss assessment. Objectives: This secondary-analysis study examined distinct depressive-symptom trajectories for caregivers of advanced cancer patients from EOL caregiving through the first 2 bereavement years with closely spaced assessments. Methods: Depressive symptoms were measured monthly during EOL caregiving and 1, 3, 6, 13, 18, and 24 months postloss among 661 caregivers using the Center for Epidemiologic Studies-Depression scale. Depressive-symptom trajectories were identified using latent-class growth analysis while controlling for gender and age. Results: We identified seven distinct depressive-symptom trajectories (prevalence) characterized by the timing, intensity, and duration of depressive symptoms: minimal-impact resilience (20.4%), recovery (34.0%), preloss-grief only (21.6%), delayed symptomatic (9.1%), relief (5.9%), prolonged symptomatic (6.5%), and chronically persistent distressed (2.5%). Conclusion: Caregivers of advanced cancer patients responded heterogeneously to the stresses of EOL caregiving and bereavement. The majority of caregivers was resilient while providing caregiving and quickly rebounded to healthy levels of psychological functioning during bereavement, whereas a minority experienced delayed-symptomatic, prolonged-symptomatic, or chronically-persistent-distressing depressive-symptom trajectories. Linking caregivers' psychological experiences from caregiving through bereavement by closely spaced assessments can more comprehensively illustrate their depressive-symptom trajectories, which confirm both the wear-and-tear and relief hypotheses, and help in targeting interventions for distinct depressive-symptom trajectories.
Background: Patients living with palliative-stage cancer frequently require intensive care from their family caregivers. Without adequate community support services, patients are at risk of receiving inadequate care, and family caregivers are at risk for depression and poor health. For such families, in-home respite care can be invaluable, particularly when the services are flexible and staffed by trusted care providers, such as nurses. Other industries are using mobile apps to make services more flexible. However, few apps have been developed to coordinate nurse-provided respite care services, and to our knowledge, none have been designed in conjunction with families affected by cancer. Objective: The aim of this study is to develop a mobile health (mHealth) app prototype for coordinating flexible and trusted in-home respite care services provided by nurses to families coping with palliative-stage cancer in Québec, Canada. Methods: This user-centered design research comprises the core component of the iRespite Services iRépit research program. For this study, we are recruiting 20 nurses, 15 adults with palliative-stage cancer, and 20 of their family caregivers, from two palliative oncology hospital departments and one palliative home-care community partner. Overseen by an Expert Council, remote data collection will occur over three research phases guided by the iterative Information Systems Research Framework: Phase 1, brainstorming potential app solutions to challenging respite care scenarios, for better supporting the respite needs of both family caregivers and care recipients; Phase 2, evaluating low-fidelity proofs of concept for potential app designs; and Phase 3, usability testing of a high-fidelity interactive proof of concept that will then be programmed into an app prototype. Qualitative and quantitative data will be descriptively analyzed within each phase and triangulated to refine the app features. Results: We anticipate that preliminary results will be available by Spring 2022. Conclusions: An app prototype will be developed that has sufficient complimentary evidence to support future pilot testing in the community. Such an app could improve the delivery of community respite care services provided to families with palliative-stage cancer in Québec, supporting death at home, which is where most patients and their families wish to be. International Registered Report Identifier (IRRID): PRR1-10.2196/34652
Aims and objectives: To map the existing literature on support models provided to family members during the cancer trajectory. Background: Cancer diagnosis, treatment and survivorship have a profound influence on the surrounding family members. This scoping review is part of the development of a support model for family members of persons diagnosed with colorectal cancer. Methods: The method was guided by the Arksey and O’Malley framework, described in the Joanna Briggs Institute guidelines, and the reporting is compliant with PRISMA-ScR Checklist. Searches were conducted in PubMed, CINAHL and PsycINFO from November 2019–February 2020 with no limitation in publication year or study design. Complementing searches were conducted in reference lists and for grey literature, followed by an additional search in September 2020. Inclusion criteria were primary research about support provided by health care, to family members, during cancer, of an adult person, in Swedish or English, of moderate or high methodological quality. Quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted using a charting form. Result: A total of 32 studies were included in the review describing 39 support models. Conclusion: The mapping of the existing literature resulted in the identification of three themes of support models: psychoeducation, caregiver training and psychological support. In addition, that future research should target a specific diagnosis and trajectory phase as well as include family members and intervention providers in model development. Relevance for clinical practice: Knowledge from the literature on both the needs of the family members and existing support models should be incorporated with the prerequisites of clinical practice. Clinical practice should also be complemented with structured assessments of family members’ needs conducted regularly.
Objectives: Cancer affects both patients and their families. Sometimes, the effects of cancer on families are greater than its effects on patients. Family caregivers play significant roles in care for patients with cancer. Nonetheless, the data on the challenges they face in caregiving are limited. The present study explored the perspectives of patients with gastric cancer (GC), their family caregivers, and healthcare providers regarding family caregivers' challenges in caregiving to patients with GC. Methods: This descriptive exploratory qualitative study was conducted in 2019-2020. Six GC patients, six family caregivers, three physicians, and five nurses took part for a total of twenty participants. Purposive sampling was performed, and data were collected through semi-structured interviews and continued up to data saturation. Conventional content analysis was used for data analysis. Results: Caregivers' challenges in caregiving to patients with GC were grouped into five main categories, namely, lengthy process of GC diagnosis, delivery of bad news, management of physical symptoms, altered relationships, and psychological consequences, and 14 subcategories. Conclusion: Educating the public about the primary symptoms of GC and the importance of timely seeking medical care as well as using culturally appropriate protocols for delivering bad news is recommended. Empowering family caregivers for the effective management of GC symptoms and caregiving-related challenges are also recommended to reduce their caregiver burden.
Background: Terminal dyspnea in dying cancer patients is frequent and distressing, and the impact extends to their families. Families are often involved in providing care for terminal dyspnea. Objectives: This study aimed to describe various care strategies for terminal dyspnea in cancer patients hospitalized in palliative care units (PCUs), evaluate families' satisfaction with care for terminal dyspnea, and explore determinants contributing to families' satisfaction. Methods: A nationwide, cross-sectional survey was conducted using a self-reported questionnaire among bereaved families of cancer patients who died in PCUs. The questionnaire consisted of questions on the perceptions of care offered to patients with terminal dyspnea and their families, satisfaction with care for terminal dyspnea, family-perceived intensity of terminal dyspnea, use of oxygen, and background data of patients and families. Results: In total, 533 participants (response rate = 54%) returned the completed questionnaires, and 231 reported that their loved one had experienced terminal dyspnea. Dedicated and compassionate care was perceived by 60%–89% of the participants as the strategy provided for patients. Care for family members was perceived by 58%–69% of the participants. Perception of dedicated and compassionate care for patients and that of care for family members were significantly associated with high satisfaction (odds ratio, 95% confidence interval: 8.64, 3.85–19.36 and 15.37, 5.00–47.25, respectively). Conclusion: Dedicated and compassionate care may be the essential part of the care for terminal dyspnea. Dedicated and compassionate care for patients and care for family members have a potential of improving the care satisfaction among family caregivers.
Objective: Islamic population constitute more than 20% of the world population and is growing rapidly. Nevertheless, data concerning informal caregiving to older Muslim patients diagnosed with cancer are scarce. Improving the well-being of caregivers is a vital step to optimal care for the patients themselves throughout the Muslim community and the world. This study focuses on a sample of Palestinian caregivers of older Muslim patients diagnosed with cancer living in East Jerusalem, the West Bank, and Gaza. The study aims to describe the socio-demographic characteristics of the caregivers and to understand their social support, and identify predictors of caregivers’ depression. Methods: A cross-sectional study of a convenience sample of 99 dyads of Palestinian patients (age ≥65) and their informal caregivers. Depression and social support were measured using the five items of the Geriatric Depression Scale and the Cancer Perceived Agents of Social Support questionnaire. Results: Caregivers were most frequently adult children (52%) or spouses (32%), with male patients cared for by spouses (47.5%) or sons (32%), and female patients by daughters (50%). Clinical levels of depression were reported by 76% of the caregivers and 85% of patients. The significant predictors of caregiver depression were female gender, lower education, lower perceived social support from spouse and family, and higher perceived support from faith. Significance of results: Healthcare providers serving the study population should determine the position and role of the caregiver within the social and family structure surrounding the patients’ families. This understanding may facilitate overcoming barriers to effective and meaningful social support.
Objective: Resilience instruments specific to family caregivers (FCs) in cancer are limited. This study was designed to validate the 10-item Resilience Scale Specific to Cancer (RS-SC-10) in FCs using multidimensional item response theory (MIRT) analysis. Methods: 382 FCs were enrolled from Be Resilient to Cancer Program (BRCP) and administered with RS-SC-10 and 36-item Short Form Health Survey (SF-36). MIRT was performed to evaluate item parameters while Generalized Additive Model (GAM) and Latent Profile Analysis (LPA) were performed to test the non-linear relationship between resilience (RS-SC-10) and Quality of Life (QoL, SF-36). Results: RS-SC-10 retained 10 items with high multidimensional discrimination, monotonous thresholds and its original two-factor structure (Generic and Shift-Persist). Four latent resilience subgroups were identified and a non-linear dose–response pattern between resilience and QoL was confirmed (per-SD increase OR = 1.62, 95% CI 1.16–2.13, p = 0.0019). Conclusion: RS-SC-10 is a brief and suitable resilience instrument for FCs in cancer. The resilience screening of patients and FCs can be performed simultaneously in clinical practice.
Background: Among the few existing needs assessment tools for family carers, the 14-item Carer Support Needs Assessment Tool (CSNAT) is the only brief and holistic needs screening tool designed for everyday use in palliative care practices. The aim of this study was to evaluate the reliability, validity, and acceptability of the traditional Chinese version of the CSNAT in palliative care settings in Hong Kong. Methods: This adopted a cross-sectional and correlation design with repeated measures. The participants were 125 family carers of palliative cancer patients and 10 healthcare providers (HCPs) that were recruited from two local hospitals. The evaluation of psychometric properties included the following: (1) content validity through HCPs including frontline physicians, nurses, social workers, and clinical psychologists; (2) construct validity between the CSNAT items and those of the validated tools that measured caregiver burden, social support, and caregiving self-efficacy; and (3) one-week test-retest reliability in a sub-sample of 81 caregivers. The acceptability of the tool was assessed by the carers using several closed-ended questions. Results: The content validity index of the CSNAT at the scale level was 0.98. Each item of the CSNAT was significantly and moderately correlated with caregiver burden (Spearman’s r = 0.24 to 0.50) and caregiving self-efficacy (r = − 0.21 to − 0.52), but not for social support. All CSNAT items had fair to moderate test-retest reliability (weighted kappa = 0.21 to 0.48), with the exception of two items “managing your relatives’ symptoms, including giving medicines” and “having time for yourself in the day”. Regarding the acceptability of the CSNAT, almost all HCPs were willing to use the CSNAT for carer assessment and support. 89.6% of the carers demonstrated a comprehensibility of the CSNAT tool and 92.9% felt comfortable answering the questions. Around 90% of the carers agreed to use the tool for screening, discussing needs, and making referrals. Conclusion: The traditional Chinese version of the CSNAT is a tool with high validity and acceptability and adequate reliability that measures family carers’ support needs, which should be considered for wide application in local palliative care practices.
Objectives: Pancreatic cancer (PC) has high morbidity and mortality and is stressful for patients and their partners. We investigated the psychological symptom burden in partners of PC patients. Methods: We followed 5774 partners of PC patients diagnosed from 2000 to 2016 up for first redeemed prescriptions of antidepressants or hospital admission, anxiolytics, and hypnotics as proxies for clinical depression, anxiety, and insomnia and compared them with 59,099 partners of cancer-free spouses. Data were analysed using Cox regression and multistate Markov models. Results: The cumulative incidence proportion of first depression was higher in partners of PC patients compared to comparisons. The highest adjusted HR of first depression was seen the first year after diagnosis (HR 3.2 (95% CI: 2.9; 3.7)). Educational level, chronic morbidity, and bereavement status were associated with an increased risk of first depression. There was a significantly higher first acute use (1 prescription only) of both anxiolytics and hypnotics and chronic use (3+ prescriptions) of hypnotics in partners of PC patients than in comparisons. Conclusion: Being a partner to a PC patient carries a substantial psychological symptom burden and increases the risk for first depression and anxiolytic use and long-term use of hypnotics. Attention should be given to the psychological symptom burden of partners of PC patients, as this may pose a barrier for the optimal informal care and support of the PC patient, as well as a risk for non-optimal management of symptoms in the partner.
Background: Although family caregivers (FCs) play an important role in the care provided to incurable cancer patients in our region, little is known about the burden they experience. Objectives: This study was conducted to determine the prevalence of caregiver burden (CB) among FCs of incurable cancer patients in two Eastern Mediterranean countries and to identify factors that may be associated with significant CB. Methods: The study included 218 FCs, 165 from Egypt and 53 from Saudi Arabia. The 22-item Zarit Burden Interview (ZBI-22) was used to assess caregiver burden CB. Significant CB was defined as a ZBI-22 score ≥ 21. The assistance with basic ADLs was classified into 3 levels according to FCs’ assistance with early/middle/late-loss basic ADLs. The relationship between CB and the assistance with ADLs and other factors was studied. Results: The mean (SD) ZBI-22 score among FCs was 23.4 (9.3) and the majority (128/218, 59%) had significant CB. Eighty-nine percent of FCs assisted with at least one basic ADL. Assistance with late-loss basic ADLs, best supportive care treatment plan and poorer performance status were associated with higher CB (p < 0.0001, =0.018 and = 0.005). However, in logistic regression analysis, only assistance with late-loss ADLs was independently associated with significant CB (OR = 3.4 [95%CI:1.2–9.7], p = 0.024). Conclusion: A substantial proportion of FCs of incurable cancer patients in our region experience significant CB. Family caregivers assisting with late-loss basic ADLs are at risk of significant CB and should be routinely screened for CB.
Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis. Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end‐of‐life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. Conclusions: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho‐oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.
Objectives: Research on the needs of family caregivers of people living with cancer remains disproportionately focused in high income contexts. This research gap adds to the critical challenge on global equitable delivery of cancer care. This study describes the roles of family caregivers of people living with cancer in Vietnam and possible implications for intervention development. Methods: Semi‐structured interviews and focus groups with family caregivers (n = 20) and health care providers (n = 22) were conducted in two national oncology hospitals. Findings were verified via workshops with carers (n = 11) and health care professionals (n = 28) in five oncology hospitals representing different regions of Vietnam. Data was analyzed collaboratively by an international team of researchers according to thematic analysis. Results: Family caregivers in Vietnam provide an integral role in the delivery of inpatient cancer care. In the hospital environment families are responsible for multiple roles including feeding, hydration, changing, washing, moving, wound care and security of personal belongings. Central to this role is primary decision making in terms of treatment and end‐of‐life care; relaying information, providing nutritional, emotional and financial support. Families are forced to manage severe complications and health care needs with minimal health literacy and limited health care professional input. Conclusions: Understanding context and the unique roles of family caregivers of people living with cancer is critical in the development of supportive services. As psycho‐oncology develops in low and middle income contexts, it is essential that family caregiver roles are of significant importance.
Background: The family of leukemia patients, due to their caring role, often feels psychological distress. A practical need-based program carefully considers the set of requirements of nursing service recipients. This paper illustrates the efficacy of a designed family-need-based program on relieving stress, anxiety, and depression of family caregivers of leukemia patients. Methods: In this controlled trial, sixty-four family caregivers of leukemia patients referring to a medical center in Iran were recruited by convenience sampling and randomly divided into study and control groups. The study group attended a designed need-based program. The control group did not receive the intervention. Stress, anxiety, and depression of both groups were simultaneously measured and compared in three time-points using the scale of stress, anxiety, and depression (DASS-42). Data were analyzed using descriptive and inferential statistics. Results: Before the program, the average scores of stress, anxiety, and depression were 31.16 ± 4.14, 21.37 ± 6.31, and 27.56 ± 4.24 for the study group and 31.09 ± 4.48, 20.34 ± 6.56, and 28.78 ± 4.72 for the control group. After the program, the average scores of stress, anxiety, and depression were 10.56 ± 3.37, 6.75 ± 2.99, and 7.37 ± 2.76 for the study group and 34.87 ± 2.51, 23.65 ± 4.96, and 32.56 ± 3.49 for the control group, respectively. Results of the independent t test indicated no considerable difference before the program (P > 0.05) and a significant difference after the program (P < 0.001) between the two groups. Conclusion: This family-need-based program can decrease the level of stress, anxiety, and depression of the family caregivers of leukemia patients and may potentially alleviate the psychological distress of family caregivers over their caring role.
Background: Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods: Face-to-face semi-structured interviews were conducted with survivors aged 16–30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. Results: Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions: Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.
Background: Home-based informal caregiving by friends and family members of patients with cancer is becoming increasingly common globally with rates continuing to rise. Such caregiving is often emotionally and cognitively demanding, resulting in mental exhaustion and high perceived burden. Support for caregivers may be fostered by engagement with the natural environment. Interaction with nature is associated with mental health benefits such as stress reduction and improved well-being. Objectives: The purpose of this paper was to evaluate the state of the science regarding the use of natural environment interventions to support caregivers of cancer patients in the community. Methods: A compre-hensive scoping review using the Arksey and O’Malley framework and the Preferred Reporting Items for Systematic Reviews and Meta-analyses assessed natural environment therapies and mental health outcomes among cancer caregivers. Databases searched included CINAHL, PubMed, Sco-pus, Cochrane, and Alt HealthWatch. Results: Findings recovered a total of five studies over a 10-year period that met criteria, demonstrating a lack of empirical evidence addressing this potential resource to support caregivers. Often, study appraisal was not on nature exposure, but rather other aspects of the projects such as program evaluation, exercise, or complementary therapies. Both qualitative and quantitative designs were used but sample sizes were small. Conclusions: Caregivers experienced beneficial results across the various studies and future work could enhance these findings.
Objectives: We aimed to describe the characteristics of caregivers with cancer compared to those without and analyze the association between having cancer and caregivers’ psychological distress in Japan. Methods: We used data from the Japanese Comprehensive Survey of Living Conditions in 2010, 2013, and 2016. The participants were 5258 family caregivers aged ≥40 years, caring for only one family member whose information in the dataset was available for all the covariates included in the model. The family caregivers’ psychological distress was defined by the Kessler Psychological Distress Scale (K6) score (K6 ≥ 5). We conducted a Poisson regression analysis to examine the association between having cancer and family caregivers’ distress. Results: The sample of family caregivers consisted of mostly females (69.3%) and people within the 40–64 years age group (51.8%). As a result, family caregivers with cancer increased across the survey periods; a higher number of participants were unemployed. When adjusted for covariates, including the presence of other diseases, having cancer was significantly associated with distress (risk ratio 1.33, 95% confidence interval 1.05–1.69) among family caregivers. Conclusions: Family caregivers with cancer are expected to increase in the future; it is important to provide them with more support in managing both their treatment and caregiving to cope with their distress.
Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.
Objective: Family caregivers play an essential role in end-of-life care but suffer considerable impact on their own health. A better understanding of main factors related to carers' health is important to inform interventions. The purpose of the study was to test for the first time the potential impact of a comprehensive set of observable variables on carer health during end-of-life caregiving within a population-based carer sample. Design National retrospective, cross-sectional, 4-month post-bereavement postal census survey of family carers of people who died from cancer. Methods: Relatives who registered a death from cancer during a 2-week period in England were identified from death certificates by the Office of National Statistics; response rate was 1504/5271 (28.5%). Outcome measures Carers' mental health was measured through General Health Questionnaire (GHQ)-12; general health was measured through EuroQoL EQ-Visual Analogue Scale (EQ-5D VAS). Methods Survey questions to measure potential variables associated with carer health were based on past research and covered patients' symptoms and functioning; caregiving activities and hours; informal and formal help received; work hours, other caregiving, volunteering; changes to work, income and expenditure; sleep and relaxation; and demographic variables. Bivariate analyses and ordinary least square regression were performed to investigate these variables' relationship with outcomes. Results: Patients' psychological symptoms and functioning, caregiving hours, female gender and self-sought formal help related to worse mental health. General practitioner and social care input and relaxation related to better mental health. Patients' psychological symptoms, caregiving hours and female gender were associated with worse general health, and older age, employment and relaxation were associated with better general health. Conclusions: Improvements in carers' health overall may be made by focusing on potential impacts of patients' psychological symptoms on carers, facilitating respite and relaxation, and paying particular attention to factors affecting female carers.
Background: Informal caregivers may experience a significant burden while caring for cancer patients. Little is known about how caregiver burden varies across different palliative cancer care settings and the factors influencing it. Objectives: We compared the severity of caregiver subjective stress burden (emotional impact) among caregivers of patients seen in the outpatient supportive care center (SCC) with those being cared for in the acute palliative care unit (PCU). Secondary aims were to compare other caregiver burden dimensions, quality of life, and any association of caregiver subjective stress burden to various patient and caregiver factors. Methods: Eligible patients and their informal caregivers in the SCC or PCU at a comprehensive cancer center in the USA were approached and enrolled. The Montgomery-Borgatta Caregiver Burden Scale and the Short-form 36 were used to measure burden and quality of life. Multivariate general linear regression was employed to evaluate the effect of covariates on subjective stress burden. Results: Ninety-eight dyads in the SCC and 74 dyads in the PCU were enrolled. PCU caregivers reported worse subjective stress burden (p = 0.0029) and mental health (p = 0.0299). Multivariate analysis showed correlations between subjective stress burden and caregivers' objective burden (p = 0.0136), subjective demand burden (p ≤ 0.0001), mental health (p = 0.0074), duration of caregiving (p = 0.0680), education (p = 0.0192) and with patients' anxiety (p = 0.0003) and current/recent cancer treatment (p = 0.0579). Conclusion: PCU caregivers demonstrated worse emotional burden and mental health than those in the SCC. More research is needed to tailor interventions for various caregiver burden dimensions. NCI Clinical Trial Registration Number ID: NCI-2019-01197
Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. Objective: This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration: Clinicaltrials.gov. NCT04062552; Pre-results.
Background: Cancer is a global public health problem and it affects people in different ways. Family caregivers (FCs) play an essential role in caring for patients with cancer, and thus, they experience many caregiver burdens that go unnoticed. Aim: This research study explored the social burden that families experience in providing care to their family members living with cancer. Setting: This study was conducted in Durban and Pietermaritzburg, cities located in KwaZuluNatal, South Africa. Methods: This was a qualitative study using the interpretative phenomenological approach that was ideal for understanding FCs subjective perspectives on their cancer caregiving experience. Data saturation were reached at 20 in-depth interviews. Results: Two major themes culminated from the data analysis; dynamics of a cancer diagnosis and psychosocial impact of a cancer diagnosis with respective sub-themes. Themes centred around the relational impact of a cancer diagnosis with FCs experiencing a shift in this dynamic and a disturbance to normality in social life. Social support systems were found to play a meaningful role in mitigating the impact of a cancer diagnosis with financial, psychosocial and educational support considered essential needs. Conclusion: Cancer caregiving is a challenging task that also presents opportunities for strengthening family bonds as they evolve in new paths. A family-centred care approach is recommended as a form of social support with further collaboration with health care providers for guided patient care. If the needs of FCs are addressed accordingly through health care policies and interventions, FCs may be able to provide better care and support for their family members with cancer and thus positively impact cancer survivorship.
Objectives: This study aims to explore the psychosocial issues faced by the primary caregivers of advanced head and neck cancer patients with the primary objective to understand their experiences within social context. Materials and Methods: Burden and QOL of caregivers (n = 15) were quantified using Zarit Burden Interview schedule and caregiver quality of life index-cancer (CQOLC), respectively. Primary caregivers (n = 10) were interviewed using semi-structured interview schedule. Thematic analysis was employed to analyse the qualitative data. Descriptive statistics was used for quantitative data. Results: Four major themes emerged: (1) Impacts of caregiving, (2) coping with caregiving, (3) caregiver's appraisal of caregiving and (4) caregiver's perception of illness. Majority (73.3%) of the caregivers had QOL below 100. The mean CQOLC score was 73.07 (SD 24.17) and most (46.7%) of the caregivers reported mild-to-moderate burden, while 27% had little to no burden. The mean ZBI score was 32.4 (SD 18.20). Conclusion: Caregiving impacts the physical, emotional, financial and social aspects of caregiver's life. Caregivers adopt active coping strategies to overcome the impacts of caregiving. Family acts as a major source of strength to manage the emotional constraints faced by Indian caregivers. Cultural beliefs and values of caregivers influence their appraisal of caregiving situation. Majority of the caregivers experienced mild-to-moderate burden while most of the caregivers scored low on QOL.
Background: Rising global demand for informal care makes it increasingly important to have a comprehensive understanding of carers’ experiences. However, research is thought to be skewed towards women’s experience, leading some to call men ‘forgotten carers’. Methods: A systematic review following Preferred Reporting Items for Systematic reviews and Meta-Analysis guidelines was conducted to assess the gender balance of study samples of family carers of someone living with cancer. Findings: A total of 82 articles involving 14,352 participants were reviewed. Overall, 35.5 per cent of participants were men and 64.5 per cent were women. Conclusions: Researchers should seek to overcome barriers to men’s participation in carer research in order to ensure the experiences of male and female carers are recognised through research.
Objective: The study aimed to determine the effectiveness of the multicomponent intervention on Quality of life (QOL) of family caregivers of cancer patients. Methodology: A Quasi-experimental study with pre and post-test measures was conducted among 200 caregivers of cancer patients selected by convenient sampling technique. The experimental group received the intervention, and no intervention was given for the control group during the study period. The data were collected from family members looking after the cancer patients diagnosed with breast/head & neck cancers and who were in the third and fourth stages of cancer. After the pre-test, provided multicomponent intervention (Pranayama, yogic relaxation, counselling and Education) and a post-test was conducted at the first month & third month. The obtained data were analysed and inferred using descriptive and inferential statistics to compare the outcomes among the groups. Result: Most of the caregivers belong to the age group of 31 to 40 years in the intervention group (31%) and in the control group (35%), 31% of them had their education up to a primary level in both the groups and most of the caregivers were spouses (49%). Regarding the QOL of family members, improvement was noted from baseline 66.66 to 126.82 (3 months) among the intervention group, and in the control group, mean QOL enhanced from 59.77 to 81.97. Repeated measure ANOVA was computed to analyse difference within and between the groups and it showed that the intervention program was efficacious in enhancing the QOL of family caregivers of cancer patients (F (1, 191) =639.02, p=.001). Conclusion: Nurses play a vibrant role in improving the Quality of life of family members of cancer patients since they are mostly involved in providing care. Health care system must ensure that the family members who provide care to the cancer patients receive appropriate teaching programmes on reducing their burden.
Background: Cancer patients commonly require assistance from a relative or friend, and many of these “family caregivers” are navigating employment while caring. Objectives: The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers’ roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support. To further highlight this group of cancer caregivers, we compare it with (1) cancer caregivers who were not employed while caring; (2) caregivers for patients with a primary condition other than cancer who were employed while caring; and (3) caregivers for patients with a primary condition other than cancer who were not employed while caring. Methods: 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. Half of the cancer caregivers were employed while providing care, and these employed caregivers were significantly more likely to be younger than those non-employed while caring. Findings: The employed cancer caregivers provided significantly fewer hours of care per week on average than those non-employed (23.4 vs. 42.5 h/week) but provided a nearly equivalent number of ADLs on average. Nearly half (48%) of the employed cancer caregivers reported coming in late to work, leaving early, or taking off work to accommodate caregiving, while 24% cut back on hours at work or went from full-time to part-time employment and 11% retired early or quit work entirely. The employed cancer caregivers (excluding self-employed) indicated having access to flexible working hours (57%) or paid sick leave (48%), and most (73%) reported that their supervisor was aware of their caregiving role, which was significantly higher than employed non-cancer caregivers (55%). These findings suggest that balancing work and cancer caregiving is especially prevalent among younger caregivers, and that work adjustments are needed but that the cancer caregiving role might be more commonly discussed or shared with supervisors. Conclusions: These findings suggest the need to develop workplace educational resources for employees caring for a cancer patient but also for supervisors to enhance their understanding of caregiver strain, workload, and work-based strategies to assist cancer caregivers.
Purpose: This study aims to explore the level of stress perceived and quality of life (QOL) by gynaecologic cancer (GC) patients and family caregivers’ dyads. Methods: In this cross-sectional study, 86 dyads were recruited from the gynaecological oncology department of a general hospital in Taichung City, Taiwan. The patients and family caregivers completed a sociodemographic information sheet, the Perceived Stress Scale, and the Taiwanese version of World Health Organization Quality of Life-BREF questionnaire. Data were analysed using descriptive statistics and Pearson's correlations. This study used the actor-partner interdependence model (APIM) with distinguishable dyads to examine the effect of patients' and caregivers' perceived stress on QOL in patient-caregiver dyads. Results: GC patients' and caregivers' level of QOL was influenced by their own stress level (actor effect). Caregivers' stress was statistically negatively associated with the patients’ QOL (partner effect); however, there were no partner effect from GC patients to caregivers. Both patients and family caregivers with higher perceived stress had poorer QOL. Therefore, we identified that stress has some level of actor and partner effects on QOL in GC patient-family caregiver dyads. Conclusions: Family caregivers' stress displayed both actor and partner effects within the first year of the cancer diagnosis; therefore, patient-and caregiver-based interventions, such as stress reduction strategies, should be developed to enhance patients' and caregivers’ QOL and stress management ability.
Background: Elective colorectal cancer (CRC) surgeries offer enhanced surgical outcomes but demand high self-efficacy in prehabilitation and competency in self-care and disease management postsurgery. Conventional strategies to meet perioperative needs have not been pragmatic, and there remains a pressing need for novel technologies that could improve health outcomes. Objective: The aim of this paper was to describe the development of a smartphone-based interactive CRC self-management enhancement psychosocial program (iCanManage) in order to improve health outcomes among patients who undergo elective CRC surgeries and their family caregivers. Methods: A multidisciplinary international team comprising physicians, specialist nurses, a psychologist, software engineers, academic researchers, cancer survivors, patient ambassadors, and ostomy care medical equipment suppliers was formed to facilitate the development of this patient-centric digital solution. The process occurred in several stages: (1) review of current practice through clinic visits and on-site observations; (2) review of literature and findings from preliminary studies; (3) content development grounded in an underpinning theory; (4) integration of support services; and (5) optimizing user experience through improving interface aesthetics and customization. In our study, 5 participants with CRC performed preliminary assessments on the quality of the developed solution using the 20-item user version of the Mobile App Rating Scale (uMARS), which had good psychometric properties. Results: Based on the collected uMARS data, the smartphone app was rated highly for functionality, aesthetics, information quality, and perceived impact, and moderately for engagement and subjective quality. Several limiting factors such as poor agility in the adoption of digital technology and low eHealth literacy were identified despite efforts to promote engagement and ensure ease of use of the mobile app. To overcome such barriers, additional app-training sessions, an instruction manual, and regular telephone calls will be incorporated into the iCanManage program during the trial period. Conclusions: This form of multidisciplinary collaboration is advantageous as it can potentially streamline existing care paths and allow the delivery of more holistic care to the CRC population during the perioperative period. Should the program be found to be effective and sustainable, hospitals adopting this digital solution may achieve better resource allocation and reduce overall health care costs in the long run.
Background: Informal carers provide an important role in supporting people with cancer. Aboriginal and Torres Strait Islander peoples experience higher cancer mortality than other Australians. To date, very little is known about the support needs of carers of Aboriginal and Torres Strait Islander adults with cancer. This article explored these needs through a qualitative study. Methods: Twenty-two semi-structured qualitative interviews and one focus group were conducted with carers of Aboriginal and Torres Strait Islander adults with cancer (n = 12) and Aboriginal and Torres Strait Islander cancer survivors (n = 15) from Queensland, Australia. Half of the carers interviewed were Aboriginal or Torres Strait Islander Australians. Interviews were transcribed, coded and thematically analysed following an interpretive phenomenological approach. Findings: Thematic analysis of carer and survivor interviews revealed four key themes relating to carers’ needs: managing multiple responsibilities; maintaining the carer’s own health and wellbeing; accessing practical support and information; and engaging with the health system. Within these overarching themes, multiple needs were identified including specific needs relevant for carers of Aboriginal and Torres Strait Islander peoples, such as advocating for the patient; accessing Indigenous support services and health workers; and ensuring that the cultural needs of the person are recognised and respected. Conclusion: Identifying the needs of informal carers of Aboriginal and Torres Strait Islander cancer patients will enable greater understanding of the support that carers require and inform the development of strategies to meet these areas of need.
Background: The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic. Method: Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists’ progress notes. Results: Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here. Conclusion: Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety. ClinicalTrials.gov: NCT03948100; NCT02481349 © 2021 Sage Publications.
Background: Views on advance care planning (ACP) has shifted from a focus solely on treatment decisions at the end-of-life and medically orientated advanced directives to encouraging conversations on personal values and life goals, patient-caregiver communication and decision making, and family preparation. This study will evaluate the potential utility of a video decision support tool (VDST) that models values-based ACP discussions between cancer patients and their nominated caregivers to enable patients and families to achieve shared-decisions when completing ACP’s. Methods: This open-label, parallel-arm, phase II randomised control trial will recruit cancer patient-caregiver dyads across a large health network. Previously used written vignettes will be converted to video vignettes using the recommended methodology. Participants will be ≥18 years and be able to complete questionnaires. Dyads will be randomised in a 1:1 ratio to a usual care (UC) or VDST group. The VDST group will watch a video of several patient-caregiver dyads communicating personal values across different cancer trajectory stages and will receive verbal and written ACP information. The UC group will receive verbal and written ACP information. Patient and caregiver data will be collected individually via an anonymous questionnaire developed for the study, pre and post the UC and VDST intervention. Our primary outcome will be ACP completion rates. Secondarily, we will compare patient-caregiver (i) attitudes towards ACP, (ii) congruence in communication, and (iii) preparation for decision-making. Conclusion: We need to continue to explore innovative ways to engage cancer patients in ACP. This study will be the first VDST study to attempt to integrate values-based conversations into an ACP intervention. This pilot study’s findings will assist with further refinement of the VDST and planning for a future multisite study. Trial registration Australian New Zealand Clinical Trials Registry No: ACTRN12620001035910. Registered 12 October 2020. Retrospectively registered.
Objective: Informal caregivers of people with lung cancer often experience a substantial care burden and associated negative consequences due to the often‐contracted course of the disease. The objective of this review was to systematically examine the evidence on the factors associated with lung cancer caregiver distress. Methods: Five databases (MEDLINE, CINAHL, EMBASE, PsychINFO and Web of Science) were searched for studies investigating factors associated with distress amongst caregivers of people with lung cancer. Empirical studies published up to July 2020 were included if they measured distress using a valid and reliable measure and examined its association with at least one other factor, with a sample of 50 or more caregivers. Results: Thirty publications describing 27 studies (16 cross‐sectional; 6 prospective; 8 intervention) involving 3744 caregivers (primarily spouse or adult child) were included. A narrative synthesis of the findings is presented due to heterogeneity in study design, variables measured and analyses conducted. Patient variables associated with greater distress included: stage of cancer and quality of spousal relationship. Caregiver variables associated with higher distress included: social support, coping strategies and self‐efficacy. Conclusions: Several variables were associated with distress amongst lung cancer caregivers. Understanding these variables could inform the development of interventions that will enable caregivers to care effectively while maintaining their own well‐being. Screening for distress among caregivers may identify those caregivers who would benefit from early intervention.
Objectives: To evaluate the psychometric properties of the C‐CaSPUN in Chinese family caregivers (FCs) of cancer survivors (CaS) and to compare the unmet needs of CaS‐FC dyads. Methods: A questionnaire survey, consisting of five Chinese version measurement scales, was used to collect data from CaS‐FC dyads. Statistical methods used included exploratory factor analysis (EFA), confirmatory factor analysis (CFA), Cronbach's α, intraclass correlation coefficient (ICC) and Pearson's correlation. Results: Participants consisted of 610 survivor–caregiver dyads. EFA and CFA established the four‐factor construct C‐CaSPUN, comprising relationship impact and life perspective, information and health care, quality of life (QoL) and survivorship care. All of the C‐CaSPUN scales had good internal reliability (Cronbach's α ≥ 0.752). The ICC for test–retest ranged from 0.645 to 0.782 at the scale level, with an average ICC value of 0.653. The concurrent validity was evidenced by C‐CaSPUN being negatively associated with SF‐12 MCS and positively related to anxiety and/or depression. In addition, the correlation coefficient scores between C‐CaSPUN factors and the C‐CaSUN total scale ranged from moderate to good (r = 0.505–0.671). Conclusions: Study findings may support the reliability and validity of the C‐CaSPUN in measuring the unmet needs of FCs of Chinese CaS.
Background: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. Objectives: The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. Methods: An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi‐structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. Findings: Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. Conclusions: Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer‐specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.
Background: Being a relative of a patient with oesophageal cancer can evoke strong emotions and uncertainty about the future. As a consequence of the treatment course for oesophageal cancer and an increase in outpatient treatment, relatives are becoming increasingly responsible for patients' physical and emotional care. There is a lack of research exploring relatives' experiences with illness, treatment and decision‐making. Aims and objectives: To explore relatives' experiences with illness, treatment of the patient and decision‐making in the context of oesophageal cancer. Design: A qualitative explorative design was chosen. Methods: We conducted two focus group interviews with 11 relatives. The analysis was based on Ricoeur's theory of interpretation. Results: Throughout illness and treatment, relatives faced the fear of loss, leading to distress and anxiety. Relatives were simultaneously taking responsibility and asserting a new role during treatment as they regarded treatment as a joint affair. Regarding decision‐making, relatives positioned themselves on the sidelines, awaiting the authority of the patients and healthcare professionals to give them space for participation. Conclusion: Relatives of patients with oesophageal cancer undergoing treatment are suppressing their anxiety and doubt about the future. As they are undertaking responsibility during treatment, they are claiming control in new areas, which leads to changing roles within the family. However, they do not feel empowered in decision‐making because they recognise patients' decision‐making authority. This study highlights the complexity of balancing patients' authority with acknowledgement of relatives' role as active collaborators.
Objectives: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Methods: Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis. Findings: Three themes were generated from the data: Changing lives, Changing roles ; Confidence in caring , and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes. Conclusions: This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened.
Background: People with mesothelioma and their families have palliative care needs throughout the relatively short trajectory of their illness. Aim: To describe the palliative care needs and experiences of people with mesothelioma and their family carers. Design: Integrative systematic review with narrative synthesis (PROSPERO: CRD42020190115). Data sources: MEDLINE, CINAHL, PsycINFO and the Cochrane Library were searched for articles published between 01 January 2000 and 10 May 2020. Articles were included if they presented empirical studies or comprehensive reviews including information about the palliative care needs and experiences of people with mesothelioma and their family carers. Results: The search yielded 508 articles, 14 were included in the analysis. A cross cutting theme of ‘uncertainty’ was identified encompassing five themes: (1) organisation and co-ordination of services, (2) communication and information needs, (3) management of care needs and high symptom burden, (4) consideration of the impact of seeking compensation and (5) family carer needs. Our findings demonstrate that people with mesothelioma want a co-ordinated, team-based approach to palliative care with a named point of contact. Whilst carers value and benefit from early referral to specialist palliative care, this does not necessarily reflect the outcomes and views of patients. Conclusion: The evidence base around the palliative care needs and experiences of people with mesothelioma and their carers needs to be strengthened. The results of this review support the need to develop a greater understanding about the role non-specialist palliative care clinicians’ play in providing generalist palliative care for people with mesothelioma and their carers.
Objective: Telehealth platforms have potential utility for providing remote access to supportive care to people with brain tumour. This systematic review aimed to evaluate the feasibility, acceptability and efficacy of delivering supportive care via telehealth platforms to adults with primary brain tumour and family caregivers. Methods: A systematic search of PsycINFO, MEDLINE, CINAHL, Embase, Scopus and Cochrane Library was conducted from 1980 to 1st June 2020 to identify eligible studies. Methodological quality was assessed by two independent reviewers. Results: Seventeen articles, reporting on 16 studies, evaluated telephone‐based support (5 studies), videoconferencing (3 studies), web‐based programs and resources (7 studies) or combined use of videoconferencing and web‐based modules (1 study) to deliver supportive care remotely. Caregivers were involved in 31% of interventions. Mean rates of accrual (68%) and adherence (74%) were moderate, whereas acceptability or satisfaction for those completing the interventions was typically high (M satisfied or very satisfied = 81%). Adherence rates were generally higher and clinical gains were more evident for interventions involving real‐time interaction as opposed to self‐guided interventions. Conclusions: Telehealth delivery of supportive care is feasible and acceptable to a high proportion of individuals with primary brain tumour and their caregivers. It is recommended that future research focuses on implementation outcomes, including factors influencing the uptake and sustainability of telehealth platforms in practice.
Background: Research on understanding health-related decision-making terminology among family caregivers of adults living with advanced cancer is lacking. Objective: The purpose of this study was to examine interpretations of the meaning of health-related decision-making terminology such as quality-of-life and end-of-life among caregivers of adults living with advanced cancer as a basis for improved understanding of caregiver decision support needs. Methods: Interviews were conducted with a purposive sub-sample of 10 caregivers of adults diagnosed with advanced cancer who completed a longitudinal, descriptive study (NRO14856) of factors influencing cancer care decisions. Audio transcripts were analyzed using qualitative descriptive methods. Findings: Caregivers described interpretations of the meaning and process of decision-making and decision-related distress. Caregivers were uncertain about the meaning of end-of-life-related terminology, and a placed high value on quality-of-life and faith/spirituality in the decision-making process. Conclusions: Improvements in information and decision support interventions are needed to better support caregivers and subsequently patients towards informed cancer care decisions.
Background: Both advanced cancer patients and their family caregivers experience distress and have a range of concerns after cancer diagnosis. However, longitudinal studies on this topic have been lacking. Aim: To investigate concerns in both patients with advanced lung cancer and their family caregivers longitudinally from diagnosis. Design: A multi-center prospective questionnaire-based study. Setting/participants: We recruited patients with newly diagnosed advanced lung cancer and their family caregivers at 16 hospitals in Japan. We prospectively assessed the prevalence of their concerns using the Concerns Checklist and investigated the associations between their concerns and mental status as well as quality of life until 24 months after diagnosis. Results: A total of 248 patients and their 232 family caregivers were enrolled. The prevalence of serious concerns was highest at diagnosis (patients: 68.3%, family caregivers: 65.3%). The most common serious concern was concern about the future in both groups at diagnosis (38.2% and 40.5%, respectively) and this remained high in prevalence over time, while the high prevalence of concern about lack of information improved 3 months after diagnosis in both groups. Approximately one-third of patient-family caregiver dyads had discrepant reports of serious concerns. The presence of serious concerns was significantly associated with anxiety and depression continuously in both groups. Conclusions: The majority of advanced lung cancer patients and their family caregivers have serious concerns from diagnosis, which is associated with their psychological distress. The spectrum of concerns alters over the disease trajectory, warranting efficient tailored care and support for both groups immediately after diagnosis.
Background: The treatment-related decision-making process is a highly emotional time for parents of children with incurable cancer, and they tend to continue the cancer-directed treatment even when they realize that there is no cure for their child. Objective: To evaluate whether parents involved in different treatment decisions regretted their treatment decision after their child's death. Methods: We collected prospective data from 418 parents of children who died of incurable cancer after receiving cancer care at 1 of 4 hospitals. We assessed parent decisional regret and its association with the type of treatment decision made (non–cancer-directed vs cancer-directed). Propensity score–matched analysis (at a ratio of 1:1) was performed. Results: One hundred forty-eight parents (35.4%) reported heightened regret. Two isonumerical arms with 103 (non–cancer-directed) and 103 (cancer-directed) resulted after propensity score matching. Parents with a cancer-directed treatment decision (relative risk, 1.53; 95% confidence interval, 1.24–1.90; P =.002) were more likely to report decisional regret compared with those with a non–cancer-directed decision. Conclusion: Bereaved parents with a cancer-directed treatment decision are more likely to experience increased regret for their decision than bereaved parents involved in a non–cancer-directed treatment decision. Implications: Shared-decision aids should be prepared for young parents with low education to improve disease-related knowledge, accurate risk perceptions, and options congruent with parents' values.
Background: Family caregivers need to be supported in caring for patients at the end of life, but practical tools to assess their support needs have been missing in China. So this study aimed to culturally adapt and validate the Carer Support Needs Assessment Tool (CSNAT). Methods: Cross-cultural adaptation of the original CSNAT for a Chinese setting was performed according to Brislin’s translation guidelines. A pilot study was conducted with 15 Chinese family caregivers of cancer patients receiving hospice home care and 5 medical staff. A cross-sectional survey of 205 family caregivers was conducted from December 2018 to May 2019 at a home-based hospice care institute in Shenzhen, China. The validation procedure comprised the establishment of (1) content validity by a group of six experts; (2) face validity by 15 family caregivers; (3) criterion validity by calculating Spearman’s correlations between the CSNAT and caregiving burden, caregiving preparedness and quality of life scales; (4) internal consistency using Cronbach’s alpha. Results: The CSNAT demonstrated good face validity and good content validity. CSNAT scores showed clear positive correlations with caregiving burden and negative correlations with preparedness for caregiving and quality of life. Internal consistency was high (Cronbach’s alpha = 0.899), although such reliability testing is not recommended for this tool. Conclusions: The Chinese version of the CSNAT is a valid tool that is appropriate for identifying needs of family caregivers of cancer patients in home-based hospice care.
Background: To produce a conceptual and operational definition of transition, in the context of end-of-life care, as experienced by informal caregivers. Methods: The authors used Rodgers' (2000) concept analysis framework to examine this concept. Findings: Common themes emerged using Rodgers' (2000) inductive approach confirming transition for informal caregivers at the end of life as a process comprising the presence of trigger(s)/event(s), awareness, instability and engagement/learning while maintaining normality. There was also duration to this process that was often unknown and unpredictable. This concept analysis provides useful insight into understanding the complex dynamics of transition during this period. The primary antecedent of this concept, prompting transition, is a diagnosis of non-curative disease for the patient. In some cases, a gradual realisation rather than a formal diagnosis that the illness has progressed to a non-curative stage, can also be an antecedent. Transition during end-of-life-care for informal caregivers can be a highly emotional time for this vulnerable cohort. Effective transitioning can ensure a stability and quality end-of-life outcomes, such as a peaceful death, as the awareness and learning that it brings, prompts planning actions for terminal care. Conclusions: Through recognising the findings of this concept analysis, deeper insight may be gained to support the provision of care, by nurses, to informal caregivers, prompting them towards effective transitions that foster the best interest of the patient.
A breast cancer diagnosis presents daunting challenges and disruptions to everyday life for family members and caregivers of breast cancer survivors (BCS). Particularly critical to families are their coping mechanisms, patterns of resiliency, and resource availability to navigate such a transformational experience. Family therapy and family therapists can introduce vulnerable families to a variety of clinical interventions that can be helpful in reducing the distress engendered by a breast cancer diagnosis. This manuscript describes clinical dynamics, considerations, and interventions that can be utilized with families of breast cancer survivors. Implications for practice, limitations, and ideas for future research are discussed.
Background: Palliative care was once believed to be too high-touch to be delivered via telehealth. However, numerous studies have demonstrated the positive effects of palliative care delivered through telehealth. Because the COVID-19 pandemic has quickly shifted how health care is delivered to patients with cancer, particularly because of their immunocompromised status and the risks associated with unnecessary exposures in the clinic, previous lessons from palliative care research studies can be used to inform practice. Methods: This article presents a case study that illustrates evidence and best practices for continuing to deliver palliative care via telehealth after COVID-19 restrictions are lifted.
Purpose: Illness uncertainty pervades individuals' experiences of cancer across the illness trajectory and is associated with poor psychological adjustment. This review systematically examined the characteristics and outcomes of interventions promoting illness uncertainty management among cancer patients and/or their family caregivers. Methods: PubMed, Scopus, PsycINFO, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Embase, and Cochrane Database of Systematic Reviews were systematically searched for relevant literature. We included randomized controlled trials (RCTs) and quasi-experimental studies focusing on interventions for uncertainty management in cancer patients and/or their family caregivers. Results: Our database searches yielded 26 studies. Twenty interventions were only offered to cancer patients, who were mostly elder, female, and White. All interventions included informational support. Other intervention components included emotional support, appraisal support, and instrumental support. Most interventions were delivered in person and via telephone (n = 8) or exclusively in person (n = 7). Overall, 18 studies identified positive intervention effects on illness uncertainty outcomes. Conclusion: This systematic review foregrounds the promising potential of several interventions—and especially multi-component interventions—to promote uncertainty management among cancer patients and their family caregivers. To further improve these interventions' effectiveness and expand their potential impact, future uncertainty management interventions should be tested among more diverse populations using rigorous methodologies.
Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective. Methods: One hundred and fifty‐one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self‐reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor‐partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL. Results: Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing. Conclusions: Supporting symptom management in Black patient/caregiver dyads may improve their QOL.
Purpose: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement. Methods: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6–9 months after SIPC (N = 160). Results: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use. Conclusions: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
Background: Effective social support mitigates burden and distress experienced by cancer caregivers. Little research, however, investigates informal support within social networks of family caregivers of cancer home hospice patients, and how social stress may accompany this support. Research Objectives: We assessed patterns of support and stress within the social networks identified by family caregivers of cancer home hospice patients (N=90). Methods: We analyzed secondary data from a longitudinal multi-site study. Participants completed baseline measures including demographics (age, gender, race/ethnicity, marital status, employment, relationship to patient, length of caregiving) and self-report measures on caregiving (Rewards of Caregiving Scale, Caregiver Competence Scale, and Zarit Caregiving Burden Interview), overall mental and physical health, and perceived support and stress including the Duke Social Support and Stress Scale. Participants independently rated perceived levels of support and stress for up to six family members and four non-family members. Latent class analysis identified patterns in reported relationships, stress, and support, and. We then compared between-class differences in demographics and evaluated perceived health and caregiving burden. Results: Three types of social networks were identified: supportive (high support, low stress across family/non-family network), ambivalent maximizers (high support, high stress across family/non-family network), and family-focused ambivalent (high support, high stress across family network only). Groups differed by ethnicity, employment status, relationship to patient, and caregiving burden (p<0.05). Conclusion Social support is nuanced and may coexist with stress within the relationships and networks of hospice family caregivers. A better understanding of caregivers' social networks and the support and stress associated with those relationships can inform how hospice providers facilitate meeting caregivers' needs within these informal networks. Implications for Research, Policy, or Practice: Service providers should assess for the potential for hospice caregivers' support relationships to include both stress and support. Knowing this will help providers address unmet needs.
Minimal research has been undertaken into needs of partners of adolescents and young adults with cancer. However, it is understood to be important for adolescents and young adults with cancer to maintain a connection with healthy peers and that they regard their loved ones, including partners, as valuable to them during their cancer treatment. Research has also suggested that adolescents and young adults consider that loved ones and partners also need support and that this support is lacking in cancer services. A recent research project by the first author (JD) examined the experience and role of partners in meeting the support needs of adolescents and young adults with cancer. A vital aspect of the project was the use of patient and public involvement in the development of a young adult advisory group – consisting of couples where one person in the relationship had been treated for cancer – to inform all aspects of the research. This article provides a brief summary of the completed research, and describes the development and work of the advisory group.
Background: Quality of life (QOL) for patients undergoing lung resection and their family caregivers (FCGs) is often affected by surgical treatment for lung cancer. Objectives: Patients and FCGs have a great deal of distress that affects their QOL. Introducing self-management skills soon after diagnosis improves patient and FCG outcomes. Methods: This article presents a intervention model for providing patients and FCGs with self-management skills. Patients and FCGs will learn how to identify and overcome challenges, set goals, and address unmet needs throughout the phases of surgery. The model and case examples are presented. Findings: Patients and FCGs gained self-efficacy. They were able to identify potential stressors that would otherwise become burdensome. Patients remained in control of their preoperative care and recovery, resulting in continued independence. FCGs achieved healthier well-being, which increased positive caregiving experiences.
Background: Home chemotherapy programs for children with cancer are safe and feasible, and their impact on the quality of life has been reported in different countries. A home chemotherapy program was implemented between 2011 and 2019 in an Italian region. This pilot study investigates its safety and feasibility, along with parental satisfaction. Methods: Patients between 0 and 18 years diagnosed with malignancy were included. Deceased patients and patients whose families moved abroad or interrupted contact with the service were excluded. Adverse events comprised immediate deterioration of the patient's condition, equipment failure, errors in drug storage, dose or patient identification and personnel safety issues. Parental satisfaction was explored through an email survey of 32 Likert-type and short open questions. Results: Thirty-five patients received 419 doses of intravenous chemotherapy at home (cytarabine, vincristine, vinblastine). No adverse events were reported. Twenty-three families out of 25 eligible completed the survey. Most reported being "very satisfied" with the possibility of maintaining a work/domestic routine and reducing time and financial burden of hospital access. Most were "very satisfied" with the opportunity for their child of being less troubled by the treatment. Besides, most reported being "very satisfied" with the chance for healthy siblings of maintaining their routine and coping with their brother/sister's disease. Most perceived the program as safe. All families recommended extending the program to all children in the region. Conclusions: This first Italian study supports home chemotherapy as safe and effective, positively influencing the quality of life for children and their families.
Objectives: analyze the level of resilience of family caregivers of children and adolescents hospitalized for cancer treatment and associated factors. Methods: cross-sectional study, carried out in 2018, with 62 family caregivers in a university hospital in the state of Rio Grande do Sul, Brazil. The instruments CDRisc-10-Br, SRQ20, PSS-14 and WHOQOL-Bref were used to measure resilience, minor psychological disorders, stress, and quality of life, respectively. Inferential statistics were used. Results: female caregivers, married, with one child and who practice some predominated religion. They were classified as having a moderate level of resilience (48.4%); with suspicion for minor psychological disorders (45%) and high level of stress (41%). In terms of quality of life, they were satisfied in the Physical, Psychological and Social Relations domains; and dissatisfied in the Environment domain. Conclusions: there were direct weak to moderate correlations between the level of resilience and quality of life and inversely with stress and minor psychological disorders.
Objective: The purpose of this study was to describe the caregiver's proxy-report of the quality of life (QoL) of children with cancer and the main family caregiver's competence, and to examine the role of said competence and other care-related variables in their proxy-reported QoL of children with cancer. Method: This was a cross sectional, correlation design study conducted with 97 main family caregivers of children between the ages of 8 and 12 years with cancer residing in Colombia. The following variables were collected: main family caregiver and child sociodemographic characteristics (Survey for Dyad Care; GCPC-UN-D), The Pediatric Quality of Life Inventory 4.0 Cancer Module, and the Competence Instrument (caregiver version). Results: The mean of the children's QoL was 102.0 points, and the caregivers' competence score was 211.24. Caregiver's competence (t = 5.814, p <.01), marital status (t = 1.925, p <.05), time as a caregiver (t = 2.087, p <.05), number of hours spent caring for the child (t = 2.621, p <.05), and caregiver's previous caring experiences (t = 2.068, p <.05) were found to influence caregiver's proxy-report of the QoL of children with cancer. Conclusions: High competence in main family caregivers positively influence caregiver's proxy-report of the QoL of children with cancer. Study results also suggest that nurses should consider the caregivers' sociodemographic characteristics such as marital status, time as a caregiver, number of hours spent caring for the child, and caregiver's previous experiences because those aspects influence main family caregivers' proxy-report about their children's QoL.
Purpose: The 15- and 10-item short forms of the Singapore Caregiver Quality of Life Scale (SCQOLS-15 and SCQOLS-10) were recently developed as a quick assessment of caregiver quality of life. Reference values describing the distribution of the total and domain scores are available for the full-length version, but they are not yet available for the short forms. This study aimed to estimate the reference values for the short forms. Methods: Data from a cross-sectional survey of 612 family caregivers of patients with advanced cancer in Singapore were fitted in quantile regression models. Percentiles were estimated by regressing the short forms’ scores on caregiver characteristics. Classification by the reference values for the short forms and the full-length version were compared and agreement was evaluated. Results: The caregiver’s role in caring for the patient and the patient’s performance status were associated with the percentiles of the total scores and most domain scores (each Bonferroni-adjusted p-value, PB, < 0.05). Higher-educated caregivers were categorized into higher percentiles according to the SCQOLS-15 and SCQOLS-10 total scores and the SCQOLS-15 Mental Well-being and Financial Well-being domain scores (each PB < 0.05). Ethnicity was associated with the SCQOLS-15 Physical Well-being and Experience & Meaning domains (each PB < 0.05). The percentiles for the short forms showed moderate to substantial agreement with those for the full-length version in terms of classifying caregivers into percentile intervals (quadratic-weighted Kappa = 0.72 to 0.92). Conclusion: Reference values for the SCQOLS-15 and SCQOLS-10 were estimated in relation to caregiver characteristics to facilitate interpretation of the short form scores.
Background: Informal family caregivers constitute an important and increasingly demanding role in the cancer healthcare system. This is especially true for caregivers of patients with primary malignant brain tumors based on the rapid progression of disease, including physical and cognitive debilitation. Informal social network resources such as friends and family can provide social support to caregivers, which lowers caregiver burden and improves overall quality of life. However, barriers to obtaining needed social support exist for caregivers. To address this need, our team developed and is assessing a multi-component caregiver support intervention that uses a blend of technology and personal contact to improve caregiver social support. Methods: We are currently conducting a prospective, longitudinal 2-group randomized controlled trial which compares caregivers who receive the intervention to a wait-list control group. Only caregivers directly receive the intervention, but the patient-caregiver dyads are enrolled so we can assess outcomes in both. The 8-week intervention consists of two components: (1) The electronic Social Network Assessment Program, a web-based tool to visualize existing social support resources and provide a tailored list of additional resources; and (2) Caregiver Navigation, including weekly phone sessions with a Caregiver Navigator to address caregiver social support needs. Outcomes are assessed by questionnaires completed by the caregiver (baseline, 4-week, 8-week) and the cancer patient (baseline, and 8-week). At 8 weeks, caregivers in the wait-list condition may opt into the intervention. Our primary outcome is caregiver well-being; we also explore patient well-being and caregiver and patient health care utilization. Discussion: This protocol describes a study testing a novel social support intervention that pairs a web-based social network visualization tool and resource list (eSNAP) with personalized caregiver navigation. This intervention is responsive to a family-centered model of care and calls for clinical and research priorities focused on informal caregiving research. Trial registration clinicaltrials.gov, Registration number: NCT04268979; Date of registration: February 10, 2020, retrospectively registered.
Objective: Family caregivers (FCs) of cancer patients often experience high distress. This randomized clinical trial assessed the feasibility and preliminary effects of an intervention to improve FC supportive care. Method: A pragmatic and minimal intervention to improve FC supportive care was developed and pretested with FCs, oncology team, and family physicians to assess its relevance and acceptability. Then, FCs of lung cancer patients were randomized to the intervention or the control group. The intervention included (1) systematic FC distress screening and problem assessment in the first months after their relative cancer diagnosis, and every 2 months after; (2) privileged contact with an oncology nurse to address FC problems, provide emotional support and skills to play their caregiving role; (3) liaison with the family physician of FCs reporting high distress (distress thermometer score ≥4/10) to involve them in the provision of supportive care. Distress, the primary outcome, was measured every 3 months, for 9 months. Secondary outcomes included quality of life, caregiving preparedness, and perceived burden. At the end of their participation, a purposive sample of FC from the experimental group was individually interviewed to assess the intervention usefulness. Content analysis was performed. Results: A total of 109 FCs participated in the trial. FC distress decreased over time, but this reduction was observed in both groups. Similar results were found for secondary outcomes. However, FCs who received the intervention felt better prepared in caregiving than controls (p = 0.05). All 10 interviewed FCs valued the intervention, even though they clearly underused it. Knowing they could contact the oncology nurse served as a security net. Significance of results: Although the intervention was not found effective, some of its aspects were positively perceived by FCs. As many of them experience high distress, an improved intervention should be developed to better support them.
Objective: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T‐cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment‐related distress in caregivers in the first 6 months after CAR T‐cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. Methods: Caregivers completed measures examining QOL and burden before patients' CAR T‐cell therapy and at days 90 and 180. Treatment‐related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. Results: A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p < .01). Conversely, anxiety worsened over time (p < .01). Caregiver burden and treatment‐related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p < .01). Worse caregiver treatment‐related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps < 0.01). Conclusions: Some CAR T‐cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T‐cell therapy caregivers.
Background: The COVID-19 pandemic is associated with significant morbidity, mortality, and restrictions on everyday life worldwide. This may be especially challenging for brain tumor patients given increased vulnerability due to their pre-existing condition. Here, we aimed to investigate the quality of life (QoL) in brain tumor patients and relatives in this setting. Methods: Over twelve weeks during the first wave of the pandemic (04–07/2020), brain tumor patients and their families from two large German tertiary care centers were asked to complete weekly questionnaires for anxiety, depression, distress, and well-being. Information regarding social support and living conditions was also collected. One hundred participants (63 patients, 37 relatives) completed 729 questionnaires over the course of the study. Results: Compared to relatives, patients showed more depressive symptoms (p < 0.001) and reduced well-being (p = 0.013). While acceptance of lockdown measures decreased over time, QoL remained stable. QoL measures between patients and their families were weakly or moderately correlated. The number of social contacts was strongly associated with QoL. Age, living conditions, ongoing therapy, employment, and physical activity were other predictors. Conclusions: QoL is correlated between patients and their families and heavily depends on social support factors, indicating the need to focus on the entire family and their social situation for QoL interventions during the pandemic.
Background: This study examined the association of needs, health literacy, and quality of life among adult Nigerians with cancer and family caregivers. Methods: A descriptive study was conducted involving 240 adults with cancer and family caregivers attending a tertiary hospital. More than two‐thirds of participants reported moderate or high needs. Results: Information (90.8%) and spiritual support (85%) were the domains of highest need among adults with cancer. Family/social support (85%) and spiritual support (81.7%) ranked the highest among family caregivers. A negative correlation was found between needs and quality of life. Stepwise regression analysis showed that needs and literacy explained 36% of the variance in adults with cancer's quality of life and 28% of the variance in family caregivers’ quality of life. Spiritual need accounted l for 9.5% and 9.1% of variation for adults with cancer and family caregivers, respectively. Conclusions: Findings suggest that interventions with a focus on social/family and spiritual needs may improve wellbeing of adults with cancer and caregivers in Nigeria. This research are generalizable to other low‐income countries where family values and spirituality are often a strong feature of daily life.
Background: Gliomas are the most common primary malignant brain tumors in adults. It has a devastating impact on the cognitive, physical, social, and psychological well-being of patients. Informal caregivers refer to family members, friends, and other carers of the patient who provide unpaid care for patients. They provide physical and psychological support for patients and the family during the disease process. Despite this, there is a paucity of knowledge regarding the experiences and needs of glioma caregivers across the disease trajectory. Methods: A systematic review will be conducted to identify the experiences and needs of informal caregivers of patients with glioma. Seven English databases and four Chinese databases will be analyzed. The search is limited to peer-reviewed full-text articles published either in English or Chinese, with no restrictions on the publication period. According to the Joanna Briggs Institute (JBI) manual for evidence synthesis, two independent reviewers will apply the JBI Critical Appraisal Checklist for Qualitative Research to evaluate the methodological quality of each study. The JBI meta-aggregation method will subsequently be used to synthesize the data, eventually forming themes, categories, and findings. Discussion: The systematic review is expected to be the first qualitative synthesis of evidence pertains to the experience of family caregivers for glioma patients. The findings generated from the systematic review may be rewarding for researchers to improve care and quality of life for glioma patients and their family members. Trial registration: PROSPERO CRD42020222307.
Background: Vietnam has experienced a rapid increase in cancer incidence with many cancers (70%) being diagnosed at a late stage. The majority of physical and psychosocial care is provided by caregivers with minimal professional input. Due to limited resources in hospitals and social and cultural norms regarding caregiving in Vietnam, caregivers provide a range of supportive functions for family members diagnosed with cancer. Objectives: This study sought to provide empirical evidence on the self-identified unmet needs of caregivers of inpatients in national oncology hospitals in Vietnam. Methods: Focus groups and in-depth interviews were conducted with caregivers (n = 20) and health care providers (n = 22) in national oncology hospitals in Hanoi and Ho Chi Minh City. Data was collaboratively analysed using thematic analysis. Findings were validated through key stakeholder group discussions with both caregivers and healthcare providers across multiple regions in Vietnam. Results: Analysis demonstrated that the burden of informal care is high with many caregivers managing patient’s severe and complex health needs with minimal support. Caregivers highlighted four main areas of critical need: (i) challenges in providing long term care, particularly in hospital and in-patient settings, such as accessing comfortable facilities, accommodation and finance; (ii) information needs about cancer, treatment, and nutrition; (iii) support for the emotional impact of cancer; and (iv) training about how to provide care to their family members during treatment and recovery phases. Conclusions: Caregivers provide invaluable support in supporting people with a cancer diagnosis, particularly given wider systemic challenges in delivering cancer services in Vietnam. Increasing visibility and formal support is likely to have both a positive impact upon the health and wellbeing of caregivers, as well as for cancer patients under their care. Given its absence, it is critical that comprehensive psychosocial care is developed for caregivers in Vietnam.
Background: For cancer patients and their family, an important factor that determines the choice to die at home is the caregivers' feeling of security when caring for the patient at home. Support to caregivers from healthcare professionals is important for the feeling of security. In rural areas, long distances and variable infrastructure may influence on access to healthcare services. This study explored factors that determined the security of caregivers of patients with advanced cancer who cared for the patients at home at the end of life in the rural region of Sogn og Fjordane in Norway, and what factors that facilitated home death. Methods: A qualitative study using semi-structured in-depth interviews with bereaved with experience from caring for cancer patients at home at the end of life was performed. Meaning units were extracted from the transcribed interviews and divided into categories and subcategories using Kvale and Brinkmann's qualitative method for analysis. Results: Ten bereaved caregivers from nine families where recruited. Five had lived together with the deceased. Three main categories of factors contributing to security emerged from the analysis: "Personal factors", "Healthcare professionals" and "Organization" of healthcare. Healthcare professionals and the organization of healthcare services contributed most to the feeling of security. Conclusion: Good competence in palliative care among healthcare professionals caring for patients with advanced cancer at home and well- organized palliative care services with defined responsibilities provided security to caregivers caring for advanced cancer patients at home in Sogn og Fjordane.
Background: Studies in the West have demonstrated that appropriate informational support is a vital component of cancer care, with positive effects on both patients and their informal caregivers. Since little is known about the information needs of advanced cancer patients and informal caregivers in China, where ‘silence as virtue’ is much more valued and the communication style is less open, this study was therefore conducted to elaborate the information needs of advanced cancer patients and informal caregivers as well as to explore their perceptions and experiences regarding their unmet information needs in the Chinese context. Methods: This sub-study of a previous cross-sectional survey utilized a qualitative descriptive study design. The approach involved semi-structured interviews that followed an interview guide to collect data. Eligible participants were the advanced cancer patients and informal caregivers who had participated in the previous cross-sectional survey and reported unmet information needs. Each interview was audio-recorded and transcribed verbatim. Descriptive content analysis was used to analyze the data. Results: Seventeen advanced cancer patients and 15 informal caregivers with unmet information needs participated in the semi-structured interviews, with ages ranging from 32 to 63 years old for patients and from 32 to 70 for informal caregivers. Four categories were extracted from the interviews with the patients and caregivers: (1) types of unmet information needs; (2) reasons for information needs not being met; (3) preferences for the provision of information; and (4) meaning and role of information. Each category had two to four sub-categories for both the patients and the caregivers, which were similar but not completely the same. Conclusion: The findings indicated that the provision of appropriate information could promote informed decision-making and greater satisfaction with treatment options, reductions in psychological disturbances, and enhanced confidence and ability in self-management and capacity in caregiving. Moreover, information on Traditional Chinese Medicine and food therapy should be increased, particularly for patients at the follow-up stage, while the amount of information on prognosis should be flexible as it could increase patients’ and caregivers’ psychological burden. Healthcare professionals were the most preferred information provider, although their heavy workload resulted in time constraints. In this case, they should provide information to patients and caregivers together as a ‘whole unit.’ At the same time, the value of separate conversations should also be recognized as some caregivers preferred to conceal unpleasant information from the patient.
Background: Informal caregivers, often family and friends, experience significant psychological and physical distress leading to reductions in health and quality of life (QOL). Mind-body interventions focused on caregivers are often limited and do not address multiple barriers, including caregivers’ economic, geographic, and time constraints. Translation of in-person, community-based interventions to Internet-based delivery may offer greater accessibility for caregivers, leading to increased adherence. Methods: Caring for Caregivers with Mind-Body implements a three-arm, pilot, randomized controlled trial to evaluate the feasibility of delivering a Qigong intervention (Eight Brocades) to cancer caregivers. A total of 54 cancer caregivers will be randomized into one of three 12-week programs: (1) community-based Qigong, (2) Internet-based Qigong, or (3) a self-care control group. Study-specific aims include (1) modify intervention content for online delivery, (2) evaluate the feasibility of recruiting and retaining cancer caregivers into a 12-week clinical trial, and (3) evaluate the feasibility of collecting and managing data, and the suitability of questionnaires for this population. Several outcomes will be assessed, including caregiver QOL, caregiver burden, caregiver distress, perceived social support, physical function, and cognitive function. A 6-month follow-up will also assess longer-term changes in QOL and psychosocial well-being. Discussion: Findings will be used to inform the design and conduct of a large-scale comparative effectiveness trial evaluating caregivers who received Qigong training delivered through community-based vs Internet-based programs. A finding that either or both programs are effective would inform care and options for caregivers. Trial registration NCT04019301; registered on July 15, 2019; clinicaltrials.gov
Background: Chronic diseases in childhood can affect the physical and mental health of patients and their families. Objectives: The objective of this study was to identify the sociodemographic and psychosocial factors that predict resilience in family caregivers of children with cancer and to define whether there are differences in the levels of resilience derived from these sociodemographic variables. Methods: Three hundred and thirty family caregivers of children with cancer, with an average age of 32.6 years were interviewed. The caregivers responded to a battery of tests that included a questionnaire of sociodemographic variables, the Measuring Scale of Resilience, the Beck Depression Inventory, the Inventory of Quality of Life, the Beck Anxiety Inventory, an interview of caregiver burden and the World Health Organization Well-Being Index. Results: The main findings indicate that family caregivers of children with cancer reported high levels of resilience, which were associated positively with quality of life, psychological well-being and years of study and associated negatively with depression, anxiety and caregiver burden. The variables that predicted resilience in families of children with cancer were quality of life, psychological well-being, depression and number of children. Family caregivers who were married and Catholic showed higher resilience scores. We conclude that being a caregiver in a family with children with cancer is associated with symptoms of anxiety and with depressive episodes. Conclusions: These issues can be overcome through family strength, well-being, quality of life and positive adaptation processes and mobilization of family resources.
Background: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. Method: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. Results: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = −0.64). Conclusion: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.
Background: Latinas with breast cancer draw on a diverse range of family members for informal care. Latin cultures typically prescribe high levels of support and care for an ill family member that leave caregivers vulnerable to compromised well-being. Method: In this cross-sectional survey study, 258 family caregivers of Latinas with breast cancer completed reports of psychological distress, availability of social support, and acculturation. Results: Mothers who provide care to a daughter with breast cancer experience higher levels of psychological distress and report lower availability of informational support than most other types of family caregivers. Mothers' lower levels of acculturation may at least partially explain these reductions in well-being. Discussion: This study highlights the diverse range of family and fictive kin who participate in family caregiving for Latina breast cancer survivors. Spousal caregivers may not represent a unique population, whereas mothers as caregivers are indeed distinct for their higher distress levels.
A growing number of people live with cancer and dementia. Dementia creates a particular set of challenges in all aspects of cancer treatment and care, including diagnosis, decision-making, access to appointments, monitoring of signs and symptoms of cancer and side effects of cancer treatment, and management of self-care tasks. People with cancer and dementia often require extensive support from family carers, and those without family support face additional challenges. This article uses the emerging UK evidence base on cancer and dementia to discuss the challenges that arise when providing cancer treatment and care to people with dementia and their families, and to make research-based recommendations on how to improve service provision for that population.
Objective: The aim of this study was to analyse longitudinal development of prognostic awareness in advanced cancer patients and their families. Methods: This was a longitudinal cohort study, involving 134 adult cancer patients, 91 primary family caregivers and 21 treating oncologists. Key eligibility criterion for patients was life expectancy less than 1 year (estimated by their oncologists using the 12‐month surprised question). Structured interviews, including tools to measure prognostic awareness, health information needs, and demographics were conducted face to face or via phone three times over 9 months. Forty‐four patients completed all three phases of data collection. Results: Only 16% of patients reported accurate prognostic awareness, 58% being partially aware. Prognostic awareness of both patients and family caregivers remained stable over the course of the study, with only small non‐significant changes. Gender, education, type of cancer, spirituality or health information needs were not associated with the level of prognostic awareness. Family caregivers reported more accurate prognostic awareness, which was not associated with patients' own prognostic awareness (agreement rate 59%, weighted kappa 0.348, CI = 0.185–0.510). Conclusions: Prognostic awareness appears to be a stable concept over the course of the illness. Clinicians must focus on the initial patients' understanding of the disease and be able to communicate the prognostic information effectively from the early stages of patients' trajectory.
Objective: After diagnosis, caregivers of children with cancer, particularly mothers or primary caregivers (PCs), often show elevated depressive symptoms which may negatively impact family functioning. We tested PC and secondary caregiver (SC) depressive symptoms as predictors of family, co‐parenting, and marital functioning and whether having a non‐depressed SC buffers against potential negative effects of PC depressive symptoms. Methods: Families (N = 137) were recruited from two major children's hospitals following a diagnosis of pediatric cancer. Caregivers completed self‐report measures of depressive symptoms (Center for Epidemiological Studies‐Depression Scale; Depression, Anxiety, and Stress Scale) and marital functioning (Dyadic Adjustment Scale) at 1‐month post‐diagnosis. A subset of families (n = 75) completed videotaped interaction tasks at approximately 3‐months post‐diagnosis that were coded for family and co‐parenting interactions. Results: Higher PC depressive symptoms at 1‐month post‐diagnosis was associated with higher adaptability and lower conflict in family functioning. PC depressive symptoms were also associated lower dyadic consensus and lower dyadic satisfaction. SC depressive symptoms were not significantly associated with any family/co‐parenting/marital functioning variables. Significant interaction analyses suggested that SC depressive symptoms moderated the effect of PC depressive symptoms on family cohesion, withdrawn parenting, and affective expression in the marriage, such that the relationship between PC depressive symptoms and poorer functioning was attenuated when SC depressive symptoms were at low or average levels. Conclusions: Having a nondepressed SC buffered against negative effects of PC depressive symptoms on certain domains of family, coparenting, and marital functioning. SCs may play a protective role for families of children with cancer.
Background: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. Methods: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. Results: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. Conclusion: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Background: Pre-loss grief (PLG) has been identified as a robust risk factor for Prolonged Grief Disorder, which will be added to the DSM 5-TR. Therefore, identifying treatment targets to reduce PLG is warranted. "Preparedness" has been found to strongly predict PLG. The work is nascent and a consensus has not been reached about how best to assess for preparedness, and no reliable measure of this construct exists. Before examining the relationship between preparedness and PLG, an in depth understanding of how family members define preparedness is warranted. The purpose of this study was to develop a preliminary theoretical framework of preparedness for the loss. Methods: This was achieved through prospective semi-structured interviews with family members of Stage 4 Cancer (N = 16) and Advanced Dementia (N = 24) patients. Findings: The overarching theme related to preparedness for the loss was the need to reduce uncertainty, both before the person passes away (i.e., present certainty) and after the person passes away (i.e., future certainty). Factors associated with the need to establish certainty in the present included, religiosity and spirituality, good relationship quality with the person with the life limiting illness, having access to support, good communication with person with life limiting illness, and acceptance of the impending death. Certainty for the future included, knowing what to expect due to past experience of loss, having plans for life without the person, and social support. Conclusions: This study provides a preliminary framework of preparedness for family members of individuals with life limiting illness.
Purpose: To examine a predictive theoretical model of psychological distress based on the following variables reflected on family caregivers of patients with cancer: the unmet supportive care needs, subjective caregiving burden, social support, and the positive aspects of caregiving. Methods: A cross-sectional descriptive study was conducted on a sample of 484 dyads of patients and their family caregivers. The caregivers completed structured questionnaires designed to measure psychological distress, unmet supportive care needs, subjective caregiving burden, positive aspects of caregiving, and social support. Patients' demographic variables and medical data were collected from a medical record review. We used a structural equation modeling to test the predictive theoretical model. Results: Path analysis results partially supported the proposed model with satisfactory fit indices. Specifically, family caregivers with an increasing number of unmet needs or a heavier caregiving burden were more likely to have more severe psychological distress. Bootstrapping results supported that the caregiving burden and social support were significant mediators. Greater unmet supportive care needs predicted higher psychological distress through increasing caregiving burden. Stronger social support predicted lower psychological distress through decreasing caregiving burden. Positive aspects of caregiving predicted lower caregiving burden through the increasing perceived social support, which in turn eliminated psychological distress. Conclusions: Unmet supportive care needs could cause psychological distress through increasing caregiving burden. The positive aspects of caregiving reduced caregiving burden through increasing social support, which subsequently alleviated psychological distress. Interventions that aim to satisfy supportive care needs, to reduce caregiving burden, and to strengthen social support ties may boost the mental health of family caregivers.
Background: Pediatric cancer diagnosis and treatment can impact the psychological adjustment and quality of life (QOL) of caregivers. Objectives: We examined: (a) the relationship between caregiver QOL and family psychosocial risk, mental health symptoms and distress concurrently, shortly after diagnosis, and six months later; and (b) which of these factors at near diagnosis can predict caregiver QOL six months later, controlling for demographic and child clinical factors. Methods: Participants were 122 caregivers in two Canadian sites. Each completed the Caregiver Quality of Life Cancer Scale, the Psychosocial Assessment Tool (PAT), the Distress Thermometer (DT), and the Hospital Anxiety and Depression Scale (HADS) near diagnosis (T1) and six months later (T2). Clinical and demographic information were also collected. Results: Clinical and demographic factors were not associated with QOL at either T1 or T2. Concurrent analyses (within T1 and T2) indicated the PAT, DT, and anxiety symptoms as significant factors contributing to caregiver QOL. Longitudinally, only T1PAT and depression symptoms significantly predicted caregiver QOL at T2. Family psychosocial risk and caregiver depression symptoms near diagnosis predict caregiver QOL six months later. These results have important implications for supporting caregivers of children with cancer. Highlights: Childhood cancer diagnosis and treatment can negatively impact on the quality of life (QOL) of caregivers of the affected child. High family psychosocial risk and elevated caregiver depression symptoms near the child's cancer diagnosis can predict poor caregiver QOL six months later. Conclusions: Early assessment of family psychosocial risk and caregiver mental health, particularly depression symptoms, can guide psychological support and prevent poor caregiver QOL. Considering the close relationship between the wellbeing of the child and caregiver, addressing caregiver mental health needs can positively impact on the QOL of the caregiver and the child with cancer.
Background: The experience of cancer is highly stressful and potentially traumatic. We assessed the presence of Post‐Traumatic Stress Symptoms (PTSS) in long‐term cancer survivors and their caregivers, while examining the association between PTSS and clinical, demographic and psychological variables in the long term. Methods: In this cross‐sectional study 212 survivor‐family caregiver dyads completed measures of post‐traumatic stress symptoms (PTSS) (Impact of Event Scale), depression and anxiety (Hospital Anxiety Depression Scale). Coping strategies, fatigue, cognitive decline, stressful life events and psychopathological history were also assessed among survivors. Data were analyzed using mixed models, accounting both for individual and dyadic effects. Results: Cancer survivors and their caregivers were assessed after a mean of 6 years after treatment. Twenty per cent of survivors and 35.5% of caregivers had possible posttraumatic stress disorder (PTSD), while 23 patients (11.0%) and 33 caregivers (15.6%) had probable PTSD. Among cancer patients, the severity of post‐traumatic symptoms was associated with an anxious coping style, previous psychopathology and depression (p < 0.001), whereas among caregivers it was associated with depression and having a closer relationship with patients (p < 0.001). Patients’ depression was associated with caregivers’ intrusion symptoms. Conclusions: High levels of cancer‐related PTSS were still present several years after treatment in both survivors and caregivers. Psychopathology may derive from complex interactions among coping, previous disorders and between‐person dynamics.
Background: Chronic lymphocytic leukemia (CLL) is the most common leukemia in adults, and it has been shown to cause considerable symptom burden in both patients and their caregivers. Recently, studies have focused on quality-of-life (QOL) measures and the relationship with health outcomes. However, to date, the breadth of QOL domains and measures is not well represented in the literature, diminishing the ability to form specific questions and to develop a systematic review. Objective: The objective of this scoping review was to investigate and analyze articles related to CLL patient and caregiver physical, psychological, social, and spiritual well-being published between January 1, 2015, and June 15, 2020. These articles will be used to provide an evidence base for the development of an integrative education tool to empower patients and their caregivers following a CLL diagnosis and throughout the continuum of care. Methods: This scoping review considered all studies that addressed physical, psychological, social, and spiritual well-being of patients diagnosed with CLL or their caregivers. A 3-step search strategy was undertaken: (1) an initial limited search of PubMed; (2) an extensive search using all identified keywords and index terms; and (3) a hand search of the reference lists of included articles. This review was limited to studies published in English between January 1, 2015, and June 15, 2020. Reviewers extracted data independently; disagreements that arose between the reviewers were resolved via discussion or with a third reviewer. Results: A total of 5629 articles were screened, 937 full-text publications were reviewed, and 75 relevant articles were identified. Most studies focused on physical well-being. Several review articles discussed treatment algorithms and consideration for treatment of patients with CLL. No articles evaluating the patient/ caregiver relationship were identified, and only a single study was designed to assess caregiver health status. Conclusion: The most commonly evaluated QOL component was physical well-being, whereas only a single article discussed spiritual well-being. Social well-being was discussed in 4 articles. Overall, 8 articles spanned the psychological and physical domains. Inclusion of all 4 QOL components will be beneficial for developing a patient education platform for patients and their caregivers following a diagnosis of CLL and throughout the care continuum.
Backgrounds and Objectives: Little is known about how families respond to pediatric advance care planning. Physicians are concerned that initiating pediatric advance care planning conversations with families is too distressing for families. We examined the effect of family centered pediatric advance care planning intervention for teens with cancer (FACE-TC) advance care planning on families' appraisals of their caregiving, distress, and strain. Methods: In a randomized clinical trial with adolescents with cancer and their families conducted from July 2016 to April 2019 in 4 tertiary pediatric hospitals, adolescents and family dyads were randomly assigned at a 2:1 intervention/control ratio to either the 3 weekly sessions of FACE-TC (Advance Care Planning Survey; Next Steps: Respecting Choices; Five Wishes) or treatment-as-usual. Only the family member was included in this study. Generalized estimating equations assessed the intervention effect measured by Family Appraisal of Caregiving Questionnaire. Results: Families' (n = 126) mean age was 46 years; 83% were female, and 82% were white. FACE-TC families significantly increased positive caregiving appraisals at 3-months postintervention, compared with those in the control group (β = .35; 95% confidence interval [CI] 0.19 to 0.36; P = .03). No significant differences were found between groups for strain (β = -.14; 95% CI = -0.42 to 0.15; P = .35) or distress (β = -.01; CI = -0.35 to 0.32; P = .93). Conclusions: Families benefited from participation in FACE-TC, which resulted in positive appraisals of their caregiving for their child with cancer, while not significantly burdening them with distress or strain. Clinicians can be assured of the tolerability of this family-supported model.
Background: When discussing treatment options and future care, it is important to understand the expectations of patients and family caregivers related to palliative chemotherapy and to identify patterns in patients’ quality of life. The study aims were to evaluate differences in treatment expectations and quality of life between patients with thoracic cancer (non-small-cell lung cancer, small-cell lung cancer and mesothelioma) who were < 70 and ≥ 70 years of age and receiving palliative chemotherapy and to assess family caregivers’ treatment expectations. Methods: A prospective longitudinal study included patients with thoracic cancer receiving outpatient palliative chemotherapy at a university hospital in Denmark and their family caregivers. Patients’ treatment expectations and quality of life were assessed three times during treatment with a survey of treatment expectations and the Functional Assessment of Cancer Therapy – General questionnaire. Family caregivers’ treatment expectations were assessed once. Results: A total of 48 patients and 36 family caregivers participated between 2018 and 2019. No statistically significant age-related differences in treatment expectations and quality of life were identified. 28% of patients aged < 70 years and 7% of those aged ≥70 years expected a cure. Among family caregivers, 36% expected a cure. Across both age groups, mean total quality of life scores significantly decreased from 73.2 at first palliative chemotherapy cycle to 70.5 at third cycle (p = 0.02). No meaningful changes were found in quality of life within either age group. A subgroup analysis found no significant between-group differences in quality of life. Mean physical well-being score for all patients decreased from 20.3 at first cycle to 18.4 at third cycle (p = 0.03) and mean emotional well-being score decreased from 15.4 at first cycle to 14.6 at third cycle (p = 0.04). Conclusion: This study emphasizes the importance of initiating conversations about treatment expectations and paying attention to expectations that may differ by the age of the patient and between patients and family caregivers. Addressing treatment expectations among patients and family caregivers and monitoring quality of life among patients is important in clinical practice.
Objective: To identify priority domains for end-of-life care from the perspectives of AYAs, family caregivers, and clinicians, and to propose candidate quality indicators reflecting priorities. Design, Setting, and Participants: This qualitative study was conducted from December 6, 2018, to January 5, 2021, with no additional follow-up. In-depth interviews were conducted with patients, family caregivers, and clinicians and included a content analysis of resulting transcripts. A multidisciplinary advisory group translated priorities into proposed quality indicators. Interviews were conducted at the Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an AYA cancer support community (lacunaloft.org). Participants included 23 AYAs, 28 caregivers, and 29 clinicians. Exposure: Stage IV or recurrent cancer. Main Outcomes and Measures: Care priorities. Results: Interviews were conducted with 23 patients (mean [SD] age, 29.3 [7.3] years; 12 men [52%]; 18 White participants [78%]), 28 family caregivers (23 women [82%]; 14 White participants [50%]), and 29 clinicians (20 women [69%]; 13 White participants [45%]). Caregivers included 22 parents (79%), 5 spouses or partners (18%), and 1 other family member (4%); the 29 clinicians included 15 physicians (52%), 6 nurses or nurse practitioners (21%), and 8 social workers or psychologists (28%). Interviews identified 7 end-of-life priority domains: attention to physical symptoms, attention to quality of life, psychosocial and spiritual care, communication and decision-making, relationships with clinicians, care and treatment, and independence. Themes were consistent across the AYA age range and participant type. Although some domains were represented in quality indicators developed for adults, unique domains were identified, as well as AYA-specific manifestations of existing domains. For example, quality of life included global quality of life; attainment of life goals, legacy, and meaning; support of personal relationships; and normalcy. Within communication and decision-making, domains included communication early in the disease course, addressing prognosis and what to expect at the end of life, and opportunity for AYAs to hold desired roles in decision-making. Care and treatment domains relevant to cancer therapy, use of life-prolonging measures, and location of death emphasized the need for preference sensitivity rather than a standard path. This finding differs from existing adult indicators that propose that late-life chemotherapy, intensive measures, and hospital death should be rare. Conclusions and Relevance: The findings of this qualitative study suggest that AYAs with cancer have priorities for care at the end of life that are not fully encompassed in existing indicators for adults. Use of new indicators for this young population may better reflect patient- and family-centered experiences of quality care. This qualitative study assesses patient, family, and clinician perspectives on priority domains for end-of-life care for adolescents and young adults w th cancer.
Background: Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions. Aim: We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe. Design: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. Setting/participants: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. Results: A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care. Conclusions: The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
Background and aims: Family caregivers play an important role in assisting their family members with cancer, but their influence on the treatment decision‐making process has not yet been adequately investigated. This exploratory study approached this topic via reconstructive methodology, focusing on assessing patient‐caregiver relationships. Methods: We conducted semi‐structured interviews with 37 mostly elderly cancer patients (median age: 74 years) about the context of their diagnosis, treatment decision, and family support. Additionally, we interviewed 34 caregivers of cancer patients. Of these, 25 were related to patients interviewed. We analyzed the interviews via a multi‐step coding method informed by Grounded Theory methodology toward characterizing patient‐caregiver relationships, the treatment decision‐making process, and the caregivers' role therein. Results: In the majority of cases (86%), patients were being supported by caregivers. We categorized patient‐caregiver relationships in regards to the caregivers' involvement in the therapy decision‐making process. We found patient‐caregiver interaction patterns that indicate the potential of caregivers to decidedly influence the therapy decision‐making process. Yet, only in 38% of cases, a caregiver attended relevant patient‐physician‐consultations. Conclusion: Depending on the nature of the patient‐caregiver relationship, the traditional concept of shared decision‐making, which assumes a dyadic relationship, needs to be extended toward a more dynamic concept in which caregivers should be involved more frequently. This could enable physicians to better understand a patient's reasons for or against a therapy proposal and ensure that the patient's wishes are communicated and considered. On the other hand, strong caregiver‐involvement bears risks of over‐stepping elderly patients' wishes, thus violating patient autonomy.
Background: Most cancer patients' families suffer from maladaptation which increases family distress and caregiving burden. This study was conducted to explore the relationship between these maladaptation indicators, and the sense of coherence (SOC) of family caregivers alongside other family resilience determines among family caregivers of cancer patients. Methods: A total of 104 family caregivers of cancer patients were included in this cross-sectional study. They answered three questionnaires to assess family resilience factors: Family Inventory of Resources for Management (FIRM), Family Crisis Oriented Personal Evaluation Scales (F-COPES), and SOC scale. In addition, family maladaptation factors were determined by two instruments, including Family Distress Index (FDI) and Caregiver Burden Inventory (CBI). Results: The results of this study showed that the FIRM and the SOC together were responsible for 35% and 43% of the variances in FDI and CBI scores, respectively (P < 0.001). "Reframing", the subscale of the F-COPES, significantly predicted the variances of FDI (β = −0.26, P = 0.01) and CBI scores (β = −0.21, P = 0.04). Moreover, "Mastery and health", the subscale of the FIRM, significantly predicted the variances of FDI (β = −0.38, P < 0.01) and CBI scores (β = −0.21, P = 0.02). Conclusions: Family caregiver's SOC alongside other family resilience determinants plays a significant role in alleviating family distress and caregiver burden. It is suggested that palliative care providers consider family caregivers' SOC in developing a psychological intervention plan to improve family resilience in families of cancer patients.
Objectives: Families impacted by paediatric cancer are met with logistical, financial and psychological impacts, with severe acute respiratory syndrome coronavirus two creating additional barriers and stressors for these families. Connected Health (CH) may facilitate cancer care. The objective of the present study was to systematically review CH for families/informal caregivers affected by paediatric cancer. Methods: Using search terms relating to: (1) paediatric cancer, (2) family/caregivers and (3) CH, the databases of PsycINFO, Pubmed, EMBASE and Web of Science were searched. Inclusion criteria included an evaluation of CH technologies for supportive care for families/caregivers affected by paediatric cancer at any stage of treatment or survivorship. Results: Sixteen studies met inclusion criteria. CH was primarily web‐based (n = 6), however smartphone applications (n = 5), telehealth (n = 2) and online groups (n = 3) were utilised. Intervention areas included psycho‐social (n = 6), health and information provision (n = 8) and palliative care (n = 2). Conclusions: While limited studies have evaluated the impact of CH on families living with paediatric cancer, emerging evidence suggests potential benefits. More evidenced‐based interventions are required.
Background: Cancer affects not only the patient but also family members as informal caregivers. In order for family caregivers to achieve balance and improve their caregiving roles, it is essential to identify the beliefs and psychological aspects affecting them. Methods: The present study was carried out qualitatively with a descriptive phenomenological design in 2020. The main participants in this study were selected from one of the major referral centers for cancer patients in West Azerbaijan Province, located in northwestern, Iran. Twenty-two family caregivers were selected through a purposive sampling method. Findings: Data analysis showed that the 3 main themes of “emotional and religious preconceptions,” “feeling committed to caring for beloveds,” and “resilience” played a prominent role in family caregivers. These factors led to caregivers' commitment to and responsibility for care. Holistic care necessitates consideration of all aspects of human life. The results of this study led to an understanding of the complex tendencies and feelings of family caregivers. Conclusions: Based on the results, it was found that care is influenced by beliefs, religious preconceptions, sociocultural, and psychological factors. Identifying these variables helps medical staff share planning, interventions, and counseling with family caregivers and address issues that affect them.
Background: Cancer patients and their family caregivers experience various losses when patients become terminally ill, yet little is known about the grief experienced by patients and caregivers and factors that influence grief as patients approach death. Additionally, few, if any, studies have explored associations between advance care planning (ACP) and grief resolution among cancer patients and caregivers. Methods: To fill this knowledge gap, the current study examined changes in grief over time in patients and their family caregivers and whether changes in patient grief are associated with changes in caregiver grief. We also sought to determine how grief changed following the completion of advance directives. The sample included advanced cancer patients and caregivers (n = 98 dyads) from Coping with Cancer III, a federally funded, multi-site prospective longitudinal study of end-stage cancer care. Participants were interviewed at baseline and at follow-up roughly 2 months later. Results: Results suggest synchrony, whereby changes in patient grief were associated with changes in caregiver grief. We also found that patients who completed a living will (LW) experienced increases in grief, while caregivers of patients who completed a do-not-resuscitate (DNR) order experienced reductions in grief, suggesting that ACP may prompt “grief work” in patients while promoting grief resolution in caregivers.
Objective: The aim of this study was to examine how the burden of caregivers of patients with an advanced oncological illness mediates the relationship between positive aspects of care, depression and anxiety. Methods: Quantitative study with a cross‐sectional design. One hundred informal adult caregivers of patients with advanced oncological illness who attended the pain and palliative care unit or the psychological unit at the Instituto de Cancerologia Clinica las Americas (Medellin, Colombia) completed self‐report assessments including positive aspects of care (PAC), burden and anxiety/depression measured using the HADS (Hospitalized Anxiety Depression Scale). The partial least squares Structural Equation Modelling (PLS‐SEM) approach was selected to validate the hypotheses of the study. Results: Most of the participants were women (86%), with a mean age of 46.52 years (SD=15.05). Most of the participants reported experiencing both PAC and anxiety. They also scored low for burden. PAC exerted a negative effect on Burden, whereas Burden contributed positively to Anxiety and Depression. The indirect impact of PAC on Anxiety and Depression was significant p < .00. Conclusions: Positive aspects of care in advanced cancer caregivers constitutes a protective factor against caregiver's burden, depression and anxiety. Health staff can promote caregivers' adaptation and wellbeing emphasizing these PAC.
Introduction: To date, no study has explored associations between objective stress-related biomarkers (i.e., inflammatory markers, diurnal rhythm of cortisol) and health-related quality of life (HRQOL) in Latina breast cancer survivors and their informal caregivers (i.e., family, friends). Method: This cross-sectional feasibility study assessed saliva C-reactive protein, saliva diurnal cortisol rhythm (cortisol slope), and self-reported HRQOL (psychological, physical, and social domains) in 22 Latina survivor–caregiver dyads. Feasibility was defined as ≥85% samples collected over 2 days (on waking, in afternoon, and in evening). Associations between biomarkers and HRQOL were examined with correlational analyses. Results: Collection of saliva was feasible. Strongest associations were observed between survivor evening cortisol (as well as cortisol slope) and fatigue, a component of physical HRQOL. Discussion: Associations presented may help promote investigations of mechanisms linking stress-related biomarkers and HRQOL in Latina breast cancer survivor–caregiver dyads, which will facilitate development of culturally congruent interventions for this underserved group.
Background: Informal caregivers for patients with head and neck cancer perform complex caregiving tasks on a daily basis, but caregivers' needs are rarely acknowledged or addressed in current healthcare practice. Methods: A thorough review of CINAHL®, MEDLINE®/PubMed®, and PsycINFO® was conducted by the authors. 266 manuscripts were identified, with no time limit. The search was conducted in November2019. In total, 19 articles were included in the review. Throughout the disease trajectory, caregivers' psychological and emotional support needs are consistently high, whereas information needs diminish overtime. Implications for practice: Informal caregivers are imperative in supplementing the continuing care demands of people living with head and neck cancer; however, they are at risk for experiencing caregiving burden. Skill training and psychological support interventions are needed for educating and supporting caregivers.
Background: Family caregiving is common globally, but when a family member needs palliative and end-of-life care, this requires knowledge and expertise in dealing with symptoms, medication, and treatment side effects. Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. Aim: The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Design: This is a qualitative study using thematic analysis of face-to-face interviews at two-time points. Participants: Men living with advanced prostate cancer (n = 23), family caregivers (n = 23), healthcare professionals (n = 12). Findings: Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare. Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’ at home-assessing patient’s symptoms, administering drugs, and providing hands-on care. Conclusion: Home-based care is promoted as an ideal and cost-effective model of care, particularly in Westernised palliative care models. However, in resource-poor contexts, there are significant challenges associated with the implementation of this model. This study revealed the scale of challenges family caregivers, who lack basic training on aspects of caring, face in providing home care unsupported by healthcare professionals.
Background: Perceived spiritual needs may increase when patients with advanced cancer and their family caregivers are confronted with the challenges of physical and psychological distress. Given the intertwined relationships between patients and family caregivers, their interdependence should be considered to understand how perceived spiritual needs affect the quality of life of their own and of their partner. Methods: This study used the Actor-Partner Interdependence Model as the conceptual model to investigate the mutual effects of perceived spiritual needs on the quality of life in patients with advanced cancer and their family caregivers after being admitted to hospice. Findings: This cross-sectional study used the baseline data of a large clinical trial and identified that patients with cancer and their family caregivers perceived similar spiritual needs associated with the community and outlook needs and had fewer unmet spiritual needs. After controlling for partner effects, perceived outlook needs shown in patients significantly predicted their own functional well-being and social/spiritual well-being. Outlook and community needs perceived by family caregivers also significantly predicted their own mental health. Conclusion: Although partner effects were not shown as expected, the findings provide insight into the mutuality of spirituality and demonstrate the necessity of providing timely and ongoing spiritual assessment and care.
Purpose: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008). Methods: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative. Results: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement. Conclusion: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
Background: Carers’ end-of-life caregiving greatly benefits society but little is known about the monetary value of this care. Aim: Within an end-of-life cancer setting: (1) to assess the feasibility and content validity of a post-bereavement measure of hours of care; and (2) to obtain a monetary value of this informal care and identify variation in this value among sub-groups. Design and setting: A census based cross-sectional survey of all cancer deaths from a 2-week period in England collected detailed data on caregiving activity (10 caregiving tasks and the time spent on each). We descriptively analyse the information carers provided in ‘other’ tasks to inform content validity. We assigned a monetary value of caregiving via the proxy good method and examined variation in the value via regression analysis. Results: The majority of carers (89.9%) were able to complete the detailed questions about hours and tasks. Only 153 carers reported engaging in ‘other’ tasks. The monetary value of caregiving at end-of-life was £948.86 per week with social and emotional support and symptom management tasks representing the largest proportion of this monetary valuation. Time of recall did not substantially relate to variation in the monetary value, whereas there was a stronger association for the relationship between the carer and recipient, carer gender and recipient daily living restrictions. Conclusion: The monetary valuation we produce for carers’ work is substantial, for example the weekly UK Carers’ Allowance only amounts to 7% of our estimated value of £948.86 per week. Our research provides further information on subgroup variation, and a valid carer time instrument and method to inform economic evaluation and policy.
Background: Being an informal caregiver (IC) of a cancer patient is often associated with psychological distress. We have recently, in a randomized controlled trial (RCT), demonstrated efficacy of Emotion Regulation Therapy for ICs (ERT-C), evidenced as lower levels of psychological distress. Such efficacy demonstration is important, but a crucial step in improving treatments for the IC population is the identification of moderators (i.e., for whom the treatment works) and mediators (i.e., the drivers of the detected effect). Material and methods: In a sample of 65 psychologically distressed ICs (combining participants who received immediate and delayed treatment in the RCT); we investigated age, gender, and homework completion as moderators of treatment outcome. Proposed mediators were derived from the ERT model and included mindfulness, emotion regulation dysfunction, decentering, and cognitive reappraisal. Results and conclusions: The strongest moderation effect was found for homework completion, predicting improvements on psychological distress. Correlational mediation analyses generally supported the ERT model. However, temporal precedence was only established for the association between decentering and worry, where a bidirectional relation was revealed. Homework thus emerged as an important aspect of ERT-C and, albeit a bidirectional relationship, changes in decentering may precede changes in worry. Future trials should ensure the robustness of these results, hone the specificity of process measures, and further investigate the causal timeline of change.
Background: The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver's burden in Indonesia. Objective: To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA--Indonesian version (CRA-ID) with family caregivers of patients with cancer. Methods: Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured. Results: A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%.Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81. Conclusions: The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia. Implications for Practice: Nurses can use the CRA-ID to measure family caregivers' burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.
Objectives: The aim of this longitudinal study was to evaluate the long-term effects of providing a therapeutic conversation intervention, based on Family Systems Nursing, to family caregivers of a close relative with advanced cancer over the period before and during bereavement. Background: To prevent adverse outcomes, caregivers need ongoing support that begins pre-loss and extends into the post-loss period. Methods: This study employed a one-group pre-test, post-test quasi-experimental design. Twenty-four caregivers participated in two intervention trials conducted over a 42-month period, receiving two intervention sessions pre-loss (Trial 1) and one intervention session post-loss (Trial 2). Results: Significant decreases in anxiety and stress were noted over the three post-loss assessments. The final post-loss stress outcome was significantly lower than the first pre-loss score. For the depression score, there was not a significant change over time within the pre- or post-loss period. Conclusions: The findings provide evidence of decreasing anxiety and stress following the implementation of an extended family nursing intervention for bereaved family caregivers.
Objective: Caregiver resilience in the context of childhood cancer treatment has been described using cross‐sectional and retrospective studies, but little is known about prospective predictors of resilience outcomes. We examined associations of demographics, cancer‐related variables, and intrapersonal and interpersonal factors at diagnosis (family psychosocial risk, perceived social support, and healthcare self‐efficacy) and psychosocial services provided during treatment with caregiver resilience outcomes at the end of treatment. Methods: For a study validating a family psychosocial risk screener, 314 primary caregivers completed the measures at diagnosis of their child (aged 0–17 years) and when cancer treatment ended. Resilience outcomes were ratings of distress, posttraumatic stress, and posttraumatic growth. Multiple regression analyses evaluated the relative contribution of hypothesized predictors. Results: Caregivers endorsed clinically significant distress, moderate posttraumatic growth, and low posttraumatic stress based on norms. Posttraumatic growth was not associated with posttraumatic stress or distress, which were significantly associated with each other. Over and above resilience at diagnosis, family psychosocial risk was associated with resilience at the end of treatment. Perceived social support, healthcare self‐efficacy, and psychosocial services provided demonstrated associations with resilience in univariate analyses, but demographics and cancer‐related variables did not. Conclusions: Resilience and family psychosocial risk at diagnosis were the strongest predictors of caregiver resilience outcomes at the end of the treatment. Intrapersonal and interpersonal predictors were weaker and varied by resilience measure. Consistent with psychosocial standards of care, broad evaluation of caregiver risks, resources, and resilience processes and outcomes is recommended at diagnosis and through the treatment trajectory including the end of treatment.
Background: When a parent of dependent children (<18 years old) is at end of life from cancer, this has a profound impact on the family. Children less prepared for the death of a parent are more susceptive to poorer psychosocial adjustment in later life. There is a lack of understanding from the literature surrounding what support parents require, and how they navigate this end of life experience. Aim: To explore bereaved parents' experience and needs for families when a parent is at end of life from cancer with dependent children. Design: In-depth, semi-structured qualitative interviews were conducted with 21 bereaved mothers and fathers, identified from the general public, a family support service and hospice. Data were analysed thematically. Results: Parents often live in 'parallel worlds' throughout the end of life period. In one world, 'living in the moment', cherishing the ordinariness of family life, remaining hopeful treatment will prolong life, whilst adapting as the illness unfolds. The other world presents as 'intermitted glimpses that death is approaching', shadowed with painful emotional concerns surrounding their children and the future. At the end, death rapidly approaches, characterised as suddenly 'falling off the cliff'; placing significant demands on the well-parent. Conclusions: Amidst challenges, clinicians should provide parents with clear information surrounding a poor prognosis, so families can plan and prepare for parental death. There is a need for healthcare professionals to engage, encourage and equip parents, as they prepare their children throughout the end of life experience for the inevitable death of a parent.
Objectives: This study aimed to explore the lived experiences of family carers in the care of children with cancer. A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Methods: Fourteen interviews were conducted with family members: mothers (n = 9), grandmothers and fathers (n = 5). Fourteen family carers were voluntarily enrolled from a public children's oncology department in Bethlehem in the Occupied Palestinian Territories. Interpretative Phenomenological Analysis (IPA) was used to analyze the data. Findings: Three major themes emerged from the data analysis. The first theme was the caring experience, which included three subthemes: changing priorities over time, information given about children's illness, and parents suffering due to treating irritable children. The second theme was the challenges to effective care, which illustrates the most significant challenges faced during caring, including the effects of family relations and emotional support. The final theme was around the support system; family carers found several resources to support them in their children's care, including other parents' experiences with similar diseases, the hospital environment, and their religious beliefs. Conclusions: This study informs parents and healthcare providers about the daily lived experiences of family carers. Healthcare providers can fulfil a significant role in giving emotional support and relief to family carers. However, they will need continuous practise to equip them with the communication skills they require to deal with the family carers in these difficult situations.
Objective: To examine live hospice discharge prevalence and experiences of families and hospice staff. Hospice eligibility is based on a cancer model where decline and death are predicable. Decline is less predictable for diagnoses such as dementia, frequently resulting in involuntary live hospice discharge. Methods: A mixed-method integration of hospice 2013-17 admission/discharge data, 5 family interviews, hospice discipline-specific focus groups (3 aides, 2 nurses, 1 administrator interview) and a discipline-combined focus group (all 6 staff; each staff participant engaged in two data collection experiences). Results: 5648 hospice admissions occurred between 2013-17; 795 patients experienced live discharge. The most prevalent admitting diagnosis was cancer, the most prevalent live discharge diagnosis was dementia. Family caregiver themes were Attitude and experience with hospice, Discharge experience, and Continued need/desire for hospice following discharge. Staff themes were Discharge circumstances, Regulatory guidelines, and Changing practice to meet regulatory guidelines. Conclusion: Involuntary live hospice discharge precludes patient-centered care due to policy constraints, especially for those with noncancer diagnoses. Families and staff noted the paradox of beneficial hospice care, yet this care resulted in ineligibility for continued hospice services. Practice Implications: Transparent, patient-family-staff communication (including CNAs) facilitates hospice live discharge planning. Hospice service eligibility policy changes are needed.
Objectives: To describe communication regarding cancer patient's end-of-life (EoL) wishes by physicians and family caregivers. Methods: An online questionnaire and telephone-based surveys were performed with physicians and family caregivers respectively in three teaching hospitals in Colombia which had been involved in the EoL care of cancer patients. Results: For 138 deceased patients we obtained responses from physicians and family caregivers. In 32 % physicians reported they spoke to the caregiver and in 17 % with the patient regarding EoL decisions. In most cases lacking a conversation, physicians indicated the treatment option was "clearly the best for the patient" or that it was "not necessary to discuss treatment with the patient". Twenty-six percent of the caregivers indicated that someone from the medical team spoke with the patient about treatment, and in 67% who had a conversation, caregivers felt that the provided information was unclear or incomplete. Physicians and family caregivers were aware if the patient had any advance care directive in 6% and 26% of cases, respectively, with low absolute agreement (34%). Conclusions: There is a lack of open conversation regarding EoL in patients with advanced cancer with their physicians and family caregivers in Colombia. Communication strategies are urgently needed.
Background: Sarcomas are a group of rare and aggressive cancers, which develop in bones and connective tissue throughout the body. Sarcomas account for only 1–2% of all cancers worldwide; however, mortality rates for sarcoma are high with approximately two in four sarcoma patients dying following a diagnosis. Delays in diagnosis, poor management of symptoms, patients’ high symptom loads and high carer burden are all associated with carer distress, which may lead to complications after bereavement. The experience of having a family member referred for palliative care is also distressing for carers, with the realisation that their family member is dying. This study aimed to explore the experiences of bereaved family carers of people diagnosed with sarcoma. Methods: A qualitative descriptive design using a social constructionist framework was adopted. Interviews were conducted with sixteen participants, and thematic analysis was used to identify patterns in the data. Findings: Four overarching themes emerged: beginning the journey; moving through treatment; transitioning to palliative care; and experiencing bereavement. The narratives were coherent and potent, and people reflected on their journeys. Conclusions: Interventions and supports for bereaved carers could include opportunities for counselling to support reflections, supports for developing a narrative such as writing therapy, and preparation for the death of the family member.
When the United States was in the early throes of the COVID-19 pandemic, hospitals and health care centers took many steps to decrease risk of COVID-19 transmission for patients who needed health care unrelated to the new coronavirus. The medical community largely cut off visitor access in hospitals and care centers, also cutting off access for friends and family members of patients who act as primary caregivers and play a critical role in communication of health information and continuity of care for patients. This issue is one that particularly affects people undergoing active cancer treatment, a group of oncologists and a patient advocate noted in a recent article in the Journal of Clinical Oncology (2021; doi: 10.1200/JCO.21.00126). “Previously, most patients arrived to clinic with a companion or even a crew of supportive friends and family that packed the examination room and sent our staff scrambling to pillage extra chairs from adjacent rooms to accommodate everyone. Now, patients arrive alone,” the authors noted in the article. The problem is that these companions and supportive friends provide much more than a familiar face to the patient, explained coauthor, Christine Alewine, MD, PhD, Lasker Clinical Research Scholar in the Laboratory of Molecular Biology at the National Cancer Institute's Center for Cancer Research. “Caregivers are an integral part of a cancer patient's team,” she told Oncology Times. “Care suffers in their absence. While there is a risk that exposure of medical staff to the caregiver could lead to an increased risk of COVID-19 transmission, maybe that risk is less critical than the loss of this care team member.” Here are the lessons Alewine believes the oncology community can learn from this pandemic.
Background: Diagnosis of hematological cancer affects patients and caregivers as a unit. Few studies have focused on the relationship between hematological cancer patients and their caregivers. Objective: To explore (a) the interaction between patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers and (b) perceived changes in lives of patients receiving treatment for hematological cancer in a hematology-oncology clinic and their family caregivers. Methods: We used a qualitative descriptive design with a dyadic approach. The study sample included 11 patients with hematological cancer and 11 family caregivers selected through purposive sampling. In-depth interviews were conducted using a semistructured interview format. Results: As a result of a content analysis, 3 themes emerged: hidden emotions, companionship,and life changes. Both the patients and the family caregivers described coping by hiding their feelings, thoughts, and needs and reducing communication with each other. Dyadmembers described commitment to each other and an increase in confidence. In addition, the patients and the family caregivers experienced changes in their roles and perspectives during the diagnosis and treatment process. Conclusion: Patients with hematological cancer and family caregivers need nurses' support. Nurses should be prepared to provide patient-caregiver--based interventions. Implication for Practices: It is important that nurses take action to strengthen the relationship between patients and their caregivers, particularly with a focus on carrying out interventions to improve communication between them. Nurses can also strengthen dyads' coping by drawing attention to positive developments in their perspectives and relationships.
Objectives: Globally, informal caregivers caring for cancer patients meet challenges within their caregiving role, which significantly influence their quality of life. This qualitative systematic review aimed to analyze how cancer caregiving influence the quality of life of informal caregivers and the management strategies of informal caregivers for their role as cancer caregivers. Methods: Following the enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement, Wanfang database, the China National Knowledge Infrastructure (CNKI), CINAHL, MEDLINE, PubMed, Cochrane Library, PsycARTICLES and PsycINFO, and grey literature in English and Chinese from 1 May 2009 to 31 December 2019 were searched. Quality of included studies was assessed by the Critical Appraisal Skills Programme (2018) Qualitative Checklist and thematic synthesis was conducted. Results: Of the 8,945 studies identified, 6 studies met the inclusion criteria. One analytical theme relating to the QoL of informal caregivers following cancer caregiving was identified: “challenges of caregiving”. In terms of the management strategies to the role of cancer caregivers, two analytical themes were identified: “self-adjustment” and “seeking for formal and informal support”. Conclusions: Cancer caregiving influences informal caregivers’ QoL significantly and informal caregivers develop diverse coping strategies to deal with the difficulties occurred while balancing the relationship between their own lives and caregiving. However, professional and policy support remain inadequate for informal caregivers that require the need for improvement in terms of health care professionals and policymakers.
Introduction: Caring for a significant other during cancer treatment can be demanding. Little is known about the well-being of informal caregivers of patients with colon cancer. This study aims to examine informal caregiver well-being during adjuvant chemotherapy for colon cancer. Material and methods: This exploratory longitudinal, prospective study measured the course of informal caregiver burden (Self-Perceived Pressure of Informal Care), distress (Hospital Anxiety and Depression Scale), health-related quality of life (RAND-36), marital satisfaction (Maudsley Marital Questionnaire), social support (Social Support List – Discrepancies), fatigue (Abbreviated Fatigue Questionnaire), and self-esteem (Caregiver Reaction Assessment) before (T0), during (T1), and after (T2) patients’ treatment. Results: Baseline data of 60 out of 76 eligible dyads (79%) were analyzed. Mean levels of informal caregiver burden and distress improved significantly over time, as did their health-related quality of life and perceived social support. At baseline, 30% and 26.7% of informal caregivers reported moderate-to-high levels of burden and clinically relevant levels of distress, respectively, which changed to 20% and 18.8% at T2. Informal caregiver burden and distress at baseline were the strongest predictors of informal caregiver burden and distress during and following patients’ treatment, respectively. Conclusion: When informal caregivers and patients experience problems before start of adjuvant chemotherapy, problems seem to improve over time. Approximately 20% of informal caregivers remain burdened and distressed after patients’ end of treatment. Paying attention to baseline distress and burden seems indicated, as these were strong predictors of informal caregivers’ well-being during and after treatment.
Background: A child’s cancer affects their entire family and is a source of chronic stress for a sick child, as well as for their parents and siblings. It deprives them of the feeling of security; introduces uncertainty, fear and anxiety; and destabilises their life. It mobilises the family since they have to reconcile the treatment and frequent appointments at the hospital with the hardships of everyday life. The emotional burden they have to deal with is enormous. Recognition of the needs of such a family allows for the implementation of support, psychosocial care and psychoeducation, as well as the provision of reliable information. Patients and Methods: A population survey was conducted between 2015 and 2020. Caregivers of children diagnosed with cancer were invited to participate in the study to assess their problems and needs. Results: All respondents in their legal status were parents of children with cancer. The study included 800 people, where women accounted for 85% and men accounted for 15%. The mean age of the mother was 38.09, SD = 7.25, and the mean age of the father was 41.11, SD = 7.03. The occurrence of problems negatively correlated with both the age of the parents (p < 0.0001) and the level of education (p < 0.0001). Parents who admitted having financial problems more often reported problems of a different kind; moreover, financial problems were more often reported by parents of children who were ill for a longer time (p = 0.01). Conclusions: Parents of children suffering from cancer reported numerous psychological, social and somatic problems. The identification of problems through screening should translate into specific interventions, thus creating support for the families of children with cancer. Promoting coping with difficult emotions and the ability to solve problems when a child is ill has a positive effect on the functioning of the family.
Background: Although death is not an uncommon outcome for cancer patients who are admitted to the hospital, there are few inpatient interventions in oncology designed to create a personalized, compassionate end-of-life (EOL) experience for patients and families. The 3 Wishes Project (3WP) is a program where clinicians implement final wishes for dying patients. 3WP has been shown to be effective at improving the EOL experience for family members of patients who die in the intensive care unit but has not been evaluated on an oncology specific ward. Research Objectives: To implement the 3WP on an oncology ward and evaluate its influence on family members' experience of their loved one's EOL. Methods: When a patient's probability of dying is greater than 95% or if the patient will be transitioned to hospice on this oncology ward, patients and families are invited to participate in the 3WP. Wishes are elicited, implemented, documented, and categorized. Semi-structured qualitative interviews were conducted with eleven family members of cancer patients who participated in the 3WP. Interviews were digitally recorded, transcribed, and analyzed using content analysis. Results: During a course of 20 months, 144 wishes were implemented for 42 cancer patients and their families, at an average cost of $56. The majority (63%) of the 144 wishes were to humanize the environment. The overarching theme identified through the analysis of transcripts from the family interviews was that 3WP facilitates three transitions at the EOL: the transition from multiple hospital admissions to the final admission, the transition of the family member from a primary caregiver role to a family member role, and the transition from a focus on the present to a focus on legacy. Conclusion: 3WP is an intervention that can be implemented on the oncology ward to help facilitate key transitions that improve the EOL experience for families of dying cancer patients.
Purpose: We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods: A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results: Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001). Conclusions: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.
Objective: Ovarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease. Methods: Qualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers. Results: Nine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment‐related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and “survivor guilt.” Conclusions: Our results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.
Background: The COVID-19 pandemic has made it difficult for many cancer survivors and their caregivers to access support from providers and informal networks. This may be particularly true for LGBTQ+ groups, who are under-represented in oncology and palliative care research and often overlooked in clinical oncology and palliative care. Research Objectives: We sought to better understand how the pandemic is affecting LGBTQ+ cancer survivors' and caregivers' access to and perceptions of formal and informal support. Methods: Qualitative data were collected via open-ended survey items, interviews, and a focus group with LGBTQ+ cancer survivors and caregivers (n = 19). Questions assessed their perceptions of the impact of COVID-19 on support, including specific challenges for LGBTQ+ survivors and their caregivers. Interview and focus group audio data were transcribed, collated with survey responses, descriptively coded, and summarized. Results: Participants included 11 survivors and 8 caregivers (1 was both) aged 21-81 (M = 41.9); 15 were female, 3 male, and 1 nonbinary; 3 were transgender; 17 were LGBTQ+ (including 4 bisexual, 2 pansexual and 2 queer) and 2 were heterosexual (both caregiving parents). Participants described numerous concerns: 1) anxiety about inclusive care being seen as something "extra"; 2) decreased visibility; 3) potential discrimination without caregiver advocacy during visits; 4) decreased communication with providers; 5) lost opportunities for community connection; 6) lack of relevant support groups and resources; 7) a care landscape changing without meaningful input from LGBTQ+ groups. Conclusion: The pandemic may exacerbate or create new unmet support needs for LGBTQ+ cancer survivors and caregivers. Implications for Research, Policy, or Practice Providers and organizations serving survivors and caregivers should be aware that minority cohorts, including LGBTQ+ survivors and caregivers, may experience increased isolation and marginalization during the pandemic. Their feedback should be actively solicited and incorporated into pandemic-related planning to inform care.
Objective: The objective of the study is to assess the unmet needs of cancer caregivers and to identify the possible predictors of their supportive care needs in China. Methods: This multicenter, cross-sectional study enrolled 449 cancer patients' family caregivers' dyads. Patients provided general information and Karnofsky performance status (KPS); caregivers provided general information and completed a survey of Chinese version of the Supportive Care Needs Survey-Partners and Caregivers Scale. The independent samples t-test, one-way analysis of variance, and multiple stepwise regression were used to analyze the factors that influence the needs of caregivers. Results: A proportion of caregivers who had no needs were 5.6%. A proportion of caregivers with ≥ 5 moderate or high unmet needs and with ≥ 10 moderate or high unmet needs were 77.7% and 63.2%, respectively. Healthcare services and information needs and communication and relationship needs were the most prominent areas of caregivers' unmet needs. The item "Finding out about financial support and government benefits for you and/or the person with cancer" was the highest level of unmet needs at 78.6%. The level of unmet needs was related to the patient's physical function (KPS score), caregiver's educational levels, financial burden of healthcare, as well as the level of burden related to caregiving (working status, caring for others, caregiving experience, and total caregiving time). Conclusions: The level of unmet needs of family caregivers of cancer patients in China was higher. In clinical practice, more attention should be paid to family caregivers who take care of the patient with poor physical function, those who are highly educated, faced with higher financial burden of healthcare, and are currently working, as well as those who need to take care of others, spend more time caregiving, and have no caregiving experience.
Background: Advanced cancer affects the emotional and physical well-being of both patients and family caregivers in profound ways and is experienced both dyadically and individually. Dyadic interventions address the concerns of both members of the dyad. A critical gap exists in advanced cancer research, which is a failure of goals research and dyadic research to fully account for the reciprocal and synergistic effects of patients’ and caregivers’ individual perspectives, and those they share. Aim: We describe the feasibility and acceptability of the Me in We dyadic intervention, which is aimed at facilitating communication and goals-sharing among caregiver and patient dyads while integrating family context and individual/shared perspectives. Design: Pilot study of a participant-generated goals communication intervention, guided by multiple goals theory, with 13 patient-caregiver dyads over two sessions. Setting/participants: Patients with advanced cancer and their self-identified family caregivers were recruited from an academic cancer center. Dyads did not have to live together, but both had to consent to participate and all participants had to speak and read English and be at least 18 years or age. Results: Of those approached, 54.8% dyads agreed to participate and completed both sessions. Participants generated and openly discussed their personal and shared goals and experienced positive emotions during the sessions. Conclusions: This intervention showed feasibility and acceptability using participant-generated goals as personalized points of communication for advanced cancer dyads. This model shows promise as a communication intervention for dyads in discussing and working towards individual and shared goals when facing life-limiting or end-of-life cancer.
Background: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians (eTRIO) and (2) patients with cancer and caregivers (eTRIO-pc). Methods and analysis: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention (eTRIO) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient–caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient–caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician–patient–caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient–caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention. Ethics and dissemination: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules.Trial registration numberACTRN12619001507178.
Background: Although cancer and HIV/AIDS are common causes of death in Vietnam, limited data exist on their palliative care needs. As palliative care becomes part of Universal Health Coverage, evidence is needed to scale up appropriate care. Objectives: To elicit from people with cancer or HIV/AIDS in Vietnam, and their caregivers, the specific multidimensional symptoms and concerns that cause serious health-related suffering. Methods: Semistructured, qualitative, in-depth interviews were conducted with stage III or IV cancer patients, people with HIV/AIDS, and their caregivers at three cancer treatment centers and two HIV/AIDS treatment centers in northern, central, and southern Vietnam. Interviews were analyzed using thematic analysis. Results: Sixty people were interviewed (21 cancer patients, 20 people with HIV/AIDS, 19 caregivers). Pain and other physical symptoms severely impacted their daily lives. Psychological distress-including sadness, depression, worry, and a feeling of having no future-was mentioned frequently, and it was exacerbated by disease progression and by social problems such as financial difficulties and, among people with HIV/AIDS, stigma. Caregivers also suffered physically and psychosocially. Spirituality emerged as a source of strength for patients. Findings: highlighted patients' and family caregivers' desire for more information about diagnosis, prognosis, and treatment, a shift toward individual decision-making. Conclusion: The findings demonstrate common, multidimensional, and severe suffering among people living with cancer or HIV/AIDS and their caregivers in Vietnam. These qualitative data should guide development of optimum clinical assessment tools and palliative care services for these populations.
OBJECTIVES: Assess whether frequently‐used claims‐based end‐of‐life (EOL) measures are associated with higher ratings of care quality. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: Deceased fee‐for‐service Medicare beneficiaries with cancer who underwent chemotherapy during July 2016 to January 2017 and died within 12 months and their caregiver respondents to an after‐death survey (n = 2,559). MEASUREMENTS: We examined claims‐based measures of EOL care: chemotherapy 14 days or more before death; inpatient admissions, intensive care unit (ICU) use, and emergency department (ED) visits 30 days or more before death; hospice election and the timing of election before death. Primary outcomes are family ratings of "excellent" care in the last month of life and reports that hospice care began "at the right time." Associations were assessed with logistic regression, adjusted by patient characteristics. RESULTS: Family rated EOL care as excellent less often, if within 30 days before death the cancer patient had inpatient admissions (1 hospitalization = 41.5% vs 51.5% none, adjusted difference −10.1 percentage points), ICU use (38.6% for any ICU use vs 47.4% none; adjusted difference −8.8 percentage points), ED visits (41.0% 1 visit vs 51.6% no visits; adjusted difference −10.6 percentage points), or elected hospice within 7 days before death. Among hospice enrollees, family more often reported that hospice began at the right time if it started at least 7 days before death (hospice 1–2 days before death 60.2% vs hospice 7–13 days 74.9%; adjusted difference +14.7 percentage points). CONCLUSIONS: Claims‐based measures of EOL care for cancer patients that reflect avoidance of hospital‐based care and earlier hospice enrollment are associated with higher ratings of care quality by bereaved family members.
Objectives: 1. Analyze 1-4 aspects of bereavement that have been impacted by COVID-19 for family caregivers of advanced cancer hospice patients. 2. Evaluate the strategies implemented by family caregivers to overcome isolation and maintain connectedness during the Coronavirus pandemic. Background: As Coronavirus has spread to the US, it has changed family caregivers' hospice experiences including bereavement. To examine the impact of a global pandemic on connectedness and isolation in bereavement among hospice family caregivers using automated phone diaries. Aim: We examined phone diaries of bereaved hospice family caregivers of cancer patients from a larger multi-site longitudinal study for COVID and non-COVID related references to isolation and connectedness. Methods: Participants were asked to complete daily phone diaries through an automated system from the time they consented to 6 months after the patient's death. Recordings were selected between March 13 and May 15, 2020 from bereaved caregivers. Summative content analysis using deductive codes was conducted to examine diaries for physical/social isolation and connection. Isolation was defined as having no other person in close physical or social contact during bereavement, while connection was defined as feeling attached to others during bereavement. Results: Bereaved caregivers' diaries (N=6; bereavement range=2-7 months) were analyzed. Each caregiver completed audio diaries over the bereavement period (range=1 to 42). Of the 59 diaries, 32 (54.24%) made reference to the coronavirus pandemic. Coronavirus references were mentioned by all 6 participants. COVID-related connection was identified 15 times (25.42%), while COVID-related isolation was identified 32 times (54.24%). Non-COVID related connection was identified 20 times (62.5%), while non-COVID related isolation was coded only twice (13.33%). Conclusions and implications: Findings from this study suggest COVID-related social isolation was integral to the bereavement experiences of family caregivers. However, despite the pandemic, caregivers expressed maintaining connectedness to others. This study has implications for hospice support services for bereaved caregivers during the pandemic.
Background: Recognized disparities in quality of end‐of‐life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods: A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i‐CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results: Of 1,683 potential participants, 914 i‐CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect "always" or "most of the time"; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion: This is the first study assessing quality of care for dying cancer patients from the bereaved relatives' perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice: Previous studies have shown that bereaved relatives' views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement. Disparities exist in the quality of end‐of‐life care. This article assesses the quality of care for dying cancer patients, as perceived by bereaved relatives, within hospitals in seven European and South American countries.
Background: Studies indicate that patients' and caregivers' responses to illness are interdependent; each person affects the other. Existing evidence reinforces the need to recognize family caregivers as equal recipients of care and support. Objectives: This evidence-based pilot study evaluated the feasibility and preliminary efficacy of the nurse-guided, psychoeducational, familybased FOCUS program intervention at a local oncology outpatient clinic. Methods: 30 patient-caregiver dyads were recruited from a local oncology clinic. Intervention delivery occurred using home visits and telephone calls. Self-administered questionnaires were used to assess participants' self-efficacy, quality of life (QOL), and coping pre- and postintervention, and intervention satisfaction postintervention. Three tailored psychosocial education sessions were held during a 6- to 9-week period. Findings: Significant changes in outcomes were found, including increased self-efficacy in both patients and caregivers, higher QOL in caregivers, and decreased use of substances for coping in patients. There was a trend for patients' emotional well-being to improve over time; other aspects of QOL showed little change. There were no significant changes in caregivers' coping.
Objective: A new diagnosis of pediatric cancer may disrupt family functioning. The current study aimed to describe changes in family rules and routines during the first year of pediatric cancer treatment, and to explore associations with demographics, illness factors, and caregiver distress. Methods: This exploratory mixed‐methods, cross‐sectional study examined 44 primary caregivers of youth in treatment for a new cancer diagnosis in 2019 and 2020, before the onset of the COVID‐19 pandemic. Caregivers completed validated questionnaires assessing demographic and child illness characteristics, psychosocial distress, and cancer‐related stressors, and participated in a semi‐structured interview about family rules and routines. Results: Caregivers reported changes in bedtime, mealtime, and school routines, relaxed behavioral expectations and rules around screen time, and new rules and routines around treatment, medications, and infection control. Caregivers with elevated levels of psychosocial distress reported more changed routines than caregivers with low levels of psychosocial distress. Caregivers who endorsed more cancer‐related stressors reported more new rules and routines than those who reported fewer cancer‐related stressors. Demographic and illness factors were not significantly associated with the number of changed, new, or stable family rules and routines. Conclusions: Families may relax rules and routines during the first several months of diagnosis, and this may be related to side effects of treatment and limited caregiver capacity. The long‐term impact of changes in family rules and routines during cancer treatment warrants further study given that accommodating parenting strategies have been associated with adverse short‐ and long‐term child health and behavior outcomes.
Objective: Identify the knowledge of family members of children and adolescents with cancer about their legal rights, difficulties, and concessions to ensure them. Methods: Quantitative study, survey type, of intersectional design. A questionnaire drawn up by the researchers was applied in order to characterize the minor and their family and also to identify the family's knowledge about legal rights. Descriptive statistics were used to analyze data. Results: 61 family members who participated know some more rights to the detriment of others and are especially motivated to search for information when negative impacts on the financial life increase, with repercussions beyond family health. Conclusion: the studied population requires more information and demands knowledge about some rights guaranteed by law. Guidance on rights empowers the family and guarantees the necessary care, searching to have an intersectoral action qualify care and assist in restructuring family dynamics to deal with chronic conditions.
Objective: The transition from active cancer treatment to survivorship represents a period of uncertainty for youth and their families, but factors associated with adaptation during this period are understudied. We evaluated associations among cancer and treatment‐related variables, family factors (family functioning, caregiver health‐related quality of life [HRQL], and caregiver distress), and patient HRQL after treatment completion. We assessed the indirect effects of neurocognitive difficulties on youth HRQL through family factors. Methods: One hundred fifty‐four caregivers (of patients’ ages 0–18 years) and 52 youth (ages 7–18 years) completed questionnaires assessing family factors, neurocognitive difficulties, and HRQL for patients within 6 months following treatment completion. Electronic health records were reviewed for cancer and treatment‐related information. Bootstrapping analyses assessed whether neurocognitive function had indirect effects on HRQL through family factors. Results: Family factors were associated with self‐ and caregiver reports of children's HRQL. Controlling for demographic, cancer, and treatment covariates, caregiver reports of their child's neurocognitive difficulties had an indirect effect on their reports of child physical HRQL through family functioning. Caregiver reports of their child's neurocognitive difficulties indirectly related to caregiver reports of child psychosocial HRQL through family functioning and caregiver HRQL. Indirect effects for self‐reported neurocognitive difficulties and HRQL were not supported. Conclusions: Findings highlight the need for routine psychosocial screening for youth and caregiver reports of family adjustment and HRQL during the transition off treatment. Providers are encouraged to offer interventions matched to specific needs for families at risk for poor family functioning to improve patient outcomes as they transition off treatment.
Background: Cognitive prognostic awareness (PA) and emotional preparedness for a loved one's death are distinct but related phenomena. However, the distinction between these two concepts has not been studied in family caregivers. Objective: To examine whether these two concepts are distinct by comparing their evolution and predictors over cancer patients' last year. Methods: Agreement between emotional preparedness for death and cognitive PA was longitudinally evaluated for 309 family caregivers by percentages and kappa coefficients. Predictors of the two outcomes were evaluated by multivariate logistic regression models with the generalized estimating equation. Results: Agreement between family caregivers' emotional preparedness for death and cognitive PA decreased slightly (54.73%–43.64%) from 181–365 to 1–30 days before the patient's death, with kappa values (95% confidence interval) from −0.060 (−0.123 to 0.003) to 0.050 (−0.074 to 0.174), indicating poor agreement. Participants were more likely to report adequate emotional preparedness for death if they had financial sufficiency, more contact/communication with the patient, lower caregiving burden, and stronger perceived social support. Family caregivers were more likely to have accurate PA if they were 56–65 years old, the patient's adult child, and had more contact/communication with the patient and greater subjective caregiving burden. Conclusions/Implications: Family caregivers' emotional preparedness for death and cognitive PA were distinct, as supported by their poor agreement, lack of reciprocal associations, and two different sets of predictors. Health care professionals should facilitate family caregivers' accurate PA and cultivate their emotional preparedness for death by enhancing patient-family contact/communication and easing their caregiving burden to improve quality of end-of-life care.
Background: Understanding challenges of family caregivers within specific palliative care contexts is needed. Objective: To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care. Methods: We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States. Results: Caregiver worry and difficulty managing side effects or symptoms other than pain, constipation, and shortness of breath were most common. "Financial concerns" was cited most as a "top 3" problem. Almost half of caregivers reported "other" problems, including family members, patient physical function, care coordination, and patient emotional state. Conclusions: The most common and most challenging problems of family caregivers of cancer patients receiving outpatient palliative care may differ from those experienced in other serious illness care contexts. Comparative studies on caregiver problems across the cancer care continuum can help develop and refine interventions.
Background: Providing care for patients with dementia can negatively influence the physical health and health behaviours of family caregivers. A better understanding of the factors associated with health check-up and cancer screening participation is vital for developing effective interventions. Thus, this study aimed to identify factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Methods: This was a cross-sectional study that analysed the data of 2,414 family caregivers of patients with dementia collected by the Korea Community Health Survey in 2017. A binomial logistic regression analysis was performed to identify demographic, socioeconomic, and health status factors associated with health check-up and cancer screening participation among family caregivers of patients with dementia. Results: Health check-up and cancer screening rates among family caregivers of patients with dementia were 68.7% and 61.4%, respectively, which were significantly lower than the rates for individuals who were not caregivers of patients with dementia. Those with lower education levels had lower odds ratios (OR) for both health check-up (OR: 0.60) and cancer screening (OR: 0.59) participation. In addition, symptoms of depression were associated with lower participation (health check-up OR: 0.67; cancer screening OR: 0.65). Conclusions: More targeted disease prevention and management strategies must be developed for family caregivers of patients with dementia, particularly those with depressive symptoms and lower education levels.
Background: Assessing patient and caregiver experiences with care is central to improving care quality. The authors assessed variations in the experiences of advanced cancer patients and their caregivers with physician communication and care coordination by patient and caregiver factors. Methods: The authors surveyed 600 patients with a stage IV solid malignancy and 346 caregivers every 3 months for more than 2 years. Patients entered the cohort any time during their stage IV trajectory. The analytic sample was restricted to patient‐caregiver dyads (n = 299). Each survey assessed patients' experiences with physician communication and care coordination; patients' symptom burden; caregivers' quality of life; and patients' and caregivers' anxiety, financial difficulties, and perceptions of treatment goals. An actor‐partner interdependence framework was used for analysis. Results: Patients reported better physician communication (average marginal effect [AME], 6.04; 95% confidence interval [CI], 3.82 to 8.26) and care coordination (AME, 8.96; 95% CI, 6.94 to 10.97) than their caregivers. Patients reported worse care coordination when they (AME, –0.56; 95% CI, –1.07 to –0.05) or their caregivers (AME, –0.58; 95% CI, –0.97 to –0.19) were more anxious. Caregivers reported worse care coordination when they were anxious (AME, –1.62; 95% CI, –2.02 to –1.23) and experienced financial difficulties (AME, –2.31; 95% CI, –3.77 to –0.86). Correct understanding of the treatment goal (vs being uncertain) was associated with caregivers reporting physician communication as better (AME, 3.67; 95% CI, 0.49 to 6.86) but with patients reporting it as worse (AME, –3.29; 95% CI, –6.45 to –0.14). Conclusions: Patients' and caregivers' reports of physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. These findings may have implications for improving patients' and caregivers' reported experiences with health care practitioners. Reports from patients with advanced cancer and their caregivers about physician communication and care coordination vary with aspects of their own and each other's well‐being and with their perceptions of treatment goals. Addressing the well‐being of both members of the dyad and reducing caregivers' uncertainty regarding treatment goals may improve reported experiences with health care providers.
Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.
Introduction: Spirituality is a multidimensional aspect of human experience. In the context of palliative care, it is an individual resource that can be used to cope with illness and to assign new meanings to suffering. Qualitative studies that aim to investigate the experience of spirituality and the needs of family caregivers in this context are rare. Objective: This meta‐synthesis aimed to synthesise qualitative studies on the experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care. Methods: A systematic review was performed in six databases, and 14 studies were included in this meta‐synthesis. Results: The results are presented as a thematic synthesis divided into two analytical themes: (1) The interweaving of spirituality with end‐of‐life care and (2) The dimensions of suffering and spirituality in the dying process of the loved one. Each analytical theme is explained by two descriptive themes. The results showed that family caregivers express their spirituality in a multidimensional way, giving meaning to the care provided and reassessing the meanings of their lives and their suffering. Conclusion: Investigating the suffering and spiritual needs of family members in this context may be of value to inform comprehensive and multi‐professional psychosocial care.
Introduction: At the end of life, patients with advanced cancer and their informal caregivers may confront multiple existential concerns. Despite the strong potential to alleviate existential distress through psychosocial interventions, existential distress and its impact on healthcare outcomes have not yet been studied systematically. We aim to investigate the frequency, longitudinal trajectory and predictive impact of existential distress on end-of-life outcomes. We further aim to determine patients’ and caregivers’ specific need for and utilisation of psychosocial support for existential distress. Methods: This longitudinal cohort study will consecutively recruit 500 patients with advanced cancer and 500 caregivers from oncological outpatient and inpatient clinics. Participants will complete self-report questionnaires (sociodemographic and disease-related characteristics, existential distress, end-of-life outcomes, resources and support needs) at five points of assessment (at baseline and after 3, 6, 9 and 12 months). At baseline and 6-month follow-up, we will conduct structured diagnostic interviews to assess mental disorders. Statistical analyses will include descriptive statistics to determine the prevalence of existential distress, mental disorders and end-of-life outcomes; multiple linear and logistic regression analyses to calculate the predictive impact of existential distress on end-of-life outcomes; and growth mixture models to analyse longitudinal trajectories of existential distress. Discussion: This study will provide comprehensive knowledge about patients’ and caregivers’ existential concerns. The longitudinal empirical data will allow for conclusions concerning the frequency and course of existential distress throughout 1 year. This important extension of existing cross-sectional research will contribute to further develop targeted psychosocial interventions. Profiles of existential distress may be applied by clinicians from multiple professions and help to address existential concerns effectively. Ethics and dissemination: The study was approved by the institutional research ethics committee (reference number LPEK-0177). Results will be presented at scientific conferences and published in peer-reviewed journals. Other forms of dissemination will include sharing results on the psychometric properties of the structured demoralisation interview with international research groups and communication with healthcare professionals providing psychosocial treatment for patients and caregivers. Following scientific standards, our progress will be regularly updated on ClinicalTrials.gov.Trial registration numberNCT04600206.
Introduction: The Carer Support Unit (CSU) of the Central Coast Local Health District (CCLHD), NSW, Australia, developed, trialled and implemented a Carer Readiness Tool (CRT) to help carers gauge their readiness to care at home, highlight to hospital staff areas for additional support for carers, and provide evidence of carer engagement in discharge planning. Methods: A rigorous co-design process was followed with carer consultation at key milestones in development of the CRT. The tool was piloted in two cancer/chronic renal disease inpatient units commencing November 2019. Results: The CRT was well-received by carers who appreciated the opportunity to complete the tool in their own time, not in front of the patient. Positive feedback was received from clinicians, including the breadth of the CRT’s content which contributed to better discharge planning. The need to manually incorporate a hard copy form into the electronic medical record is a limitation of the CRT. Conclusion: The CRT is context-specific and fit for purpose. During the development of the CRT, the project team focused on the face validity and usefulness of the tool. The next stage of the project will be formal evaluation of the tool to measure its impact.
Objectives: 1. Identify the challenges and trade-offs for family members assuming a primary caregiving role to patients with cancer nearing the end of life in India. 2. Consider strategies for supporting family members assuming a primary palliative caregiving role in India. Background As the population on the Indian subcontinent is aging, so too is the incidence of cancer and the need for access to palliative care. Research Objectives Identify provider perspectives on empowering patient family members to assume a palliative caregiving role. Methods: This is a secondary analysis from the PC-PAICE (Palliative Care- Promoting Access & International Cancer Experience) study where we captured the perspectives of 44 interdisciplinary providers from 7 geographically diverse palliative care sites throughout India using a semi-structured interview guide. We identified emergent themes using qualitative content analysis methods with team consensus. Results: Theme 1: Challenge: Cultural beliefs exist that handing off or sharing any primary caregiving is a "sin" and "if they don't take care of the patient then they have done some mistake." Theme 2: Trade-off: Caregivers are overwhelmed with navigating the expectation to take on the caregiver role, when they feasibly cannot, given financial and time constraints. Theme 3: Strategies: Facilitate caregiver buy-in to the idea of palliative care includes linking caregivers to financial resources (e.g. NGO sponsored income-earning opportunities "conduct rehabilitation camps where they teach the patient or the family to make some products"), connecting caregivers to mental health support, and working with caregivers in accommodating other constraints. Conclusion: In India, family members are already primed with the expectation to assume the role of palliative caregiver; this expectation in the face of financial constraints creates a challenging situation for caregivers. Implications for Research, Policy, or Practice: Striking the right balance of what family caregivers in India take on requires acknowledging the trade-offs they might make in other parts of their lives, empowering them through training and linkage to resources, and facilitating a cultural shift to accept palliative care or help from others. Future work should explore these provider themes in interviews with caregivers and patients themselves.
Background: Young adults are increasingly taking on caregiving roles in the United States, and cancer caregivers often experience a greater burden than other caregivers. An unexpected caregiving role may disrupt caregiver employment, leading to lost earning potential and workforce re-entry challenges. Methods: We examined caregiving employment among young adult caregivers (i.e., family or friends) using the 2015 Behavioral Risk Factor Surveillance System (BRFSS), which included caregiving, employment, and sociodemographic variables. Respondents’ ages varied between 18 and 39, and they were categorized as non-caregivers (n = 16,009), other caregivers (n = 3512), and cancer caregivers (n = 325). Current employment was compared using Poisson regressions to estimate adjusted incidence rate ratios (aIRR) and 95% confidence intervals (95% CI), including gender-stratified models. We estimated employment by cancer caregiving intensity (low, moderate, high). Results: Cancer caregivers at all other income levels were more likely to be employed than those earning below USD 20,000 (aIRR ranged: 1.88–2.10, all p < 0.015). Female cancer caregivers who were 25–29 (aIRR = 0.71, 95% CI = 0.51–1.00) and single (aIRR = 0.70, 95% CI = 0.52–0.95) were less likely to be employed than their counterparts. College-educated males were 19% less likely to be employed than high school-educated caregivers (95% CI = 0.68–0.98). Conclusions: Evaluating caregiver employment goals and personal financial situations may help identify those at risk for employment detriments, especially among females, those with lower educational attainment, and those earning below USD 20,000 annually.
Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use. Methods: An electronic caregiver health survey, first developed via cognitive interviewing methods of hematopoietic cell transplantation caregivers, was distributed nationally (in the United States) by patient advocacy organizations to family caregivers of hematopoietic cell transplantation patients. It was used to assess self-reported caregiver demographics, caregiving characteristics, depression and anxiety with the Patient Health Questionnaire–4, coping with the Brief COPE, and caregiver portal use to manage care recipient’s and their own health. Results: We found that 77% of respondents (720/937) accessed electronic health record patient portals for their care recipients, themselves, or both. Multivariate models indicated use of care recipient electronic health record portals by caregivers was more likely with young, White, married, low-income caregivers caring for a parent, residing with the care recipient, and experiencing more caregiver depression. Caregiver use of their own electronic health record portal was more likely with young, White, high-income caregivers caring for a parent and experiencing chronic medical conditions of their own. Partially due to multicollinearity, anxiety and coping did not contribute independently to this model. Conclusions: Findings from the survey could open avenues for future research into caregiver use of technology for informational support or intervention, including wearables and mobile health. International Registered Report Identifier (IRRID): RR2-10.2196/4918
Informal caregivers (referred to as caregivers within this article) play a significant part in enabling community-based models of cancer care and survivorship, whereby patients manage much of their disease and treatment outside of clinical settings. Caregivers are fundamental to healthcare in Australia, with a replacement value of $77.9 billion. Caregivers are a highly important group as they allow people diagnosed with cancer to remain at home and out of hospitals for longer than would have been possible without the caregivers involvement. [...]impacts on quality of life, a lack of sleep, reduced time for themselves and impacts on their own relationships can contribute to caregivers' levels of burden and distress. Given the experience of care provision, it is not surprising that cancer caregivers report high levels of anxiety, distress and burden. However, it is also important to acknowledge that many caregivers are able to identify positive aspects to the role, including allowing the person with cancer to remain home for longer and spending time together. The role of the general practice team The general practice team - including GPs, practice nurses, allied health professionals and administrative staff - is ideally positioned to support cancer caregivers. There are three key barriers to identifying and supporting caregivers in primary care. First, taking on the care of another person is often gradual, and it is hard to recognise the commencement of caregiving. Second, as the health of the person with cancer deteriorates, the caring role becomes all-encompassing and caregivers are unable to manage their own needs and supports. Finally, there is ambiguity regarding the legitimacy of caregiver needs. Health professionals have noted that caregivers can stand on the sidelines and be outsiders, with health professionals facing their own challenges to incorporate caregivers into the unit of care. There are two key ways in which GPs and others in the primary healthcare team can deliver support for caregivers. Acknowledging and integrating caregivers as part of the care team As caregivers are not explicitly involved in the relationship between the patient and healthcare provider, they can be rarely invited to participate. Given that the oncology team - including oncologists, hospital-based specialists, nurses and allied health professionals - can be focused on the patient's physical and mental health, the GP is someone who is well positioned to be able to check on the caregiver's physical and mental health.
Background: Many family caregivers of patients with cancer feel guilty about self-care. A meaningful relationship with patients reduces such negative feelings and functions as self-care for family caregivers. Moreover, handholding improves autonomic functions in non-cancer patients. However, the effects of handholding on both patients with cancer and family caregivers remain unknown. Methods: We evaluated the effects of handholding on heart rate variability (HRV) in patients with cancer and their family caregivers. This randomized crossover study divided patients with cancer and their family caregivers into two trial groups: Handholding trial (the family caregiver holds the patient’s hand for five minutes) and Beside trial (the family caregiver stays beside the patient without holding their hand). The study included 37 pairs of patients with cancer who received treatment in the cancer department of a university hospital in Japan and their family caregivers (n = 74). The primary end-point was the change in HRV before and during the intervention. Results: The median performance status of the patients was 3. An interaction was observed between trials in the standard deviation of the normal-to-normal interval (SDNN) of HRV for family caregivers (F = 7.669; p = 0.006), and a significant difference in time course was observed between the trials (before p = 0.351; during p = 0.003). No interaction was observed between trials in the SDNN for patients (F = 0.331; p = 0.566). Only a main effect in time course (F = 6.254; p = 0.014) was observed. SDNN increased significantly during the intervention in both trials (Handholding trial: p = 0.002, Beside trial: p = 0.049). Conclusions: Handholding improves autonomic functions of family caregivers and may function as self-care for family caregivers. Trial registration: UMIN000020557. Registered on January 15, 2016.
Objective: To evaluate the effect of an educational intervention on family caregivers of adults with cancer who are in the postoperative period of oncological surgery, to strengthen the competence of home care and reduce overload. Method: This was a quasi-experimental quantitative approach with intervention group and control group; 290 family caregivers of patients undergoing surgery were included, educational intervention was applied from admission to six weeks after discharge, measurement was made before and after competence for home care and care overload. Results: In the group intervened, a positive and statistically significant impact was obtained in the competence for home care and decreased overload. Conclusions: The educational intervention is a strategy that increases skills for care at home, and reduces the burden on caregivers of people with cancer undergoing surgery.
Background: Lung cancer as a stressful event profoundly impacts the entire family, especially patients and their family caregivers. Methods: This study uses a dyadic analysis approach to explore the dyadic effects of family functioning on the quality of life (QoL), and whether resilience acts as a mediator in advanced lung cancer patient-caregiver dyads. This was a cross-sectional study, and 287 dyads of advanced lung cancer patients and their caregivers were enrolled. Family-functioning, resilience, and QoL were assessed by the General Functioning subscale of the Family Assessment Device (FAD), the 10-item Connor-Davidson Resilience Scale, and the Short Form-8 (SF-8) Health Survey, respectively. Data were analyzed using the actor-partner interdependence mediation model. Results: This study found that, for patients and caregivers, resilience mediates the actor effects of family-functioning on QoL. That is, family-functioning was positively related to their resilience, which improved QoL. Another important finding is that caregivers' family-functioning had significant indirect effects on patients' QoL through their resilience. Positive family functioning perceived by patients and caregivers can improve their QoL by developing their own resilience. Furthermore, family-functioning perceived by caregivers can also improve patients' QoL through their resilience. Medical staff should identify vulnerable patients and caregivers with poorer family-functioning and resilience, and make focused intervention to improve the QoL of both lung cancer patients and their family caregivers. Conclusions: Positive family functioning perceived by patient-caregiver dyads can improve their QoL by developing their resilience. Family-functioning perceived by caregivers can also improve patients' QoL through their resilience.
Objectives: The aims of this study were to verify actor and partner effects, by examining the effects of family resilience on post-traumatic stress symptoms (PTSS) among Chinese breast cancer patients and their primary family caregivers. Methods: In this cross-sectional study, 104 breast cancer patients (age range 20–75, Mean = 47, Standard Deviation = 10), and their principal caregivers (n = 104), were recruited from a comprehensive cancer center of a public hospital in China. The patients and their caregivers self-reported sociodemographic, family resilience, and PTSS factors. The actor-partner interdependence model were adopted to examine whether the patients and caregivers' perceived family resilience could contribute to their own ("actor effect") and each other's ("partner effect") PTSS. Results: There were significant correlations between patients' and caregivers' shortened Chinese version of Family Resilience Assessment Scale scores (r = 0.58, p < 0.01) and Post-traumatic Stress Disorder Checklist-Civilian Version scores (r = 0.69, p < 0.01). Caregivers' perceived family resilience was negatively related to their PTSS (actor effect), and the patients' PTSS (partner effect). However, the patients' perceived family resilience was not significantly related to their or the caregivers' PTSS. The primary caregivers' perceived family resilience had both actor and partner effects on patient/caregiver PTSS within the first year of breast cancer diagnosis. Conclusions: Family-based interventions should be designed to enhance family resilience to decrease PTSS within families dealing with cancer patients. Supportive care should focus on the primary family caregivers within the first year of breast cancer diagnosis.
Background: Understanding the determinants of the intensity of informal care may assist policy makers in the identification of supports for informal caregivers. Little is known about the utilization of informal care throughout the palliative care trajectory. Aim: The purpose of this study was to analyze the intensity and determinants of the use of informal care among cancer patients over the palliative care trajectory. Design: This was a longitudinal, prospective cohort design conducted in Canada. Regression analysis using instrumental variables was applied. Setting/participants: From November 2013 to August 2017, a total of 273 caregivers of cancer patients were interviewed biweekly over the course of the care recipient’s palliative care trajectory. The outcome was the number of hours of informal care provided by unpaid caregivers, that is, hours of informal care. Results: The number of hours of informal care increased as patients approached death. Home-based nursing care complemented, and hence, increased the provision of informal care. Patients living alone and caregivers who were employed were associated with the provision of fewer hours of informal care. Spousal caregivers provided more hours of informal care. Patient’s age, sex, and marital status, and caregiver’s age, sex, marital status, and education were associated with the number of hours of informal care. Conclusions: The intensity of informal care was determined by predisposing, enabling, and needs-based factors. This study provides a reference for the planning and targeting of supports for the provision of informal care.
Purpose: The purpose of this study was to examine the knowledge, caregiving performance, stress levels, and mental health of family caregivers of terminal cancer patients with delirium, insofar as these characteristics are relevant for delirium. Methods: Between May 1, 2019, and June 1, 2020, 96 family caregivers of terminal cancer patients with delirium completed a structured survey, the results of which were analyzed. Results: The average correct answer rate for delirium-related knowledge was 53.2% across all subcategories, which included knowledge of causes (41.5%), symptoms (65.4%), and caregiving (51.7%). The average score for family caregivers' performance of caregiving for delirium was 2.60 ±0.5, with subcategories including caregiving for patients without delirium (2.16±0.95), caregiving for patients with delirium (2.84±1.01), and stress related to caregiving for delirium (39.88±16.55), as well as categories such as patient-related caregiving (44.32±28.98), duty-related caregiving (44.21±30.15), and interpersonal relationship-related caregiving (22.35±25.03). For mental health, the average score among family caregivers was 1.96± 0.70, with the highest score being for the category of additional items (2.28±0.84). Family caregivers of patients with hyperactive delirium as the delirium subtype had higher scores for caregiving performance than caregivers of patients with mixed delirium. Conclusion: Scores for the delirium-related knowledge and caregiving performance of family caregivers were low, while their caregiving stress levels were high due to their lack of knowledge and experience. This indicates the importance of delirium-related education for family members of patients with delirium and the necessity of developing nursing intervention programs to help manage stress and promote mental health among family caregivers.
Background: In cancers with a chronic phase, patients and family caregivers face difficult decisions such as whether to start a novel therapy, whether to enroll in a clinical trial, and when to stop treatment. These decisions are complex, require an understanding of uncertainty, and necessitate the consideration of patients’ informed preferences. For some cancers, such as medullary thyroid carcinoma, these decisions may also involve significant out-of-pocket costs and effects on family members. Providers have expressed a need for web-based interventions that can be delivered between consultations to provide education and prepare patients and families to discuss these decisions. To ensure that these tools are effective, usable, and understandable, studies are needed to identify patients’, families’, and providers’ decision-making needs and optimal design strategies for a web-based patient decision aid. Objective: Following the international guidelines for the development of a web-based patient decision aid, the objectives of this study are to engage potential users to guide development; review the existing literature and available tools; assess users’ decision-making experiences, needs, and design recommendations; and identify shared decision-making approaches to address each need. Methods: This study used the decisional needs assessment approach, which included creating a stakeholder advisory panel, mapping decision pathways, conducting an environmental scan of existing materials, and administering a decisional needs assessment questionnaire. Thematic analyses identified current decision-making pathways, unmet decision-making needs, and decision support strategies for meeting each need. Results: The stakeholders reported wide heterogeneity in decision timing and pathways. Relevant existing materials included 2 systematic reviews, 9 additional papers, and multiple educational websites, but none of these met the criteria for a patient decision aid. Patients and family members (n=54) emphasized the need for plain language (46/54, 85%), shared decision making (45/54, 83%), and help with family discussions (39/54, 72%). Additional needs included information about uncertainty, lived experience, and costs. Providers (n=10) reported needing interventions that address misinformation (9/10, 90%), foster realistic expectations (9/10, 90%), and address mistrust in clinical trials (5/10, 50%). Additional needs included provider tools that support shared decision making. Both groups recommended designing a web-based patient decision aid that can be tailored to (64/64, 100%) and delivered on a hospital website (53/64, 83%), focuses on quality of life (45/64, 70%), and provides step-by-step guidance (43/64, 67%). The study team identified best practices to meet each need, which are presented in the proposed decision support design guide. Conclusions: Patients, families, and providers report multifaceted decision support needs during the chronic phase of cancer. Web-based patient decision aids that provide tailored support over time and explicitly address uncertainty, quality of life, realistic expectations, and effects on families are needed.
Objectives: We examined patient and informal caregiver unmet needs to identify areas for targeted supportive care interventions and programs to enhance both patient and informal caregiver experience. Data Sources: A total of 30 patients who underwent ostomy surgeries for bladder or colorectal cancers and 13 informal caregivers participated in the study. Patients were enrolled at the Icahn School of Medicine at Mount Sinai between 2017 and 2018. Qualitative data were collected by individual interviews, audiotaped, and transcribed verbatim. Transcribed data were iteratively analyzed using Atlas.ti to explore patient and caregiver unmet needs. Results: Patients and informal caregivers reported having insufficient psychological preparation for ostomy surgeries, and very limited hands-on training on stoma care and utility of stomal appliances. Unmet psychological needs related to depression, anxiety, and distress caused by changes in body image and sexual, urinary, and bowel function were reported. Patients and caregivers also reported significant patient medical needs in the acute postoperative period including pain, fatigue, sleep disturbance, inflammation, and complications resulting in hospital readmissions. Colorectal cancer patients specifically experienced significant challenges with changes in diet and nutrition that contributed to ostomy care burden. Both patients and caregivers recommended seeking psychological and social support to enhance both patient and caregiver emotional adjustment to life after ostomies. Conclusion: Meeting patient and informal caregiver unmet informational and supportive care needs is imperative to improve their quality of life and adjustment. Implications for Nursing Practice: An effective supportive care plan should be designed and utilized in clinical care to improve ostomy patients’ and caregivers’ outcomes.
Background: Preparing family caregivers for a patient's death is an integral component of quality end-of-life care, but temporal changes in emotional preparedness for death and its associations with caregivers' psychological well-being or quality of life (QOL) while providing end-of-life caregiving are under-researched. Our study was conducted to fill this gap. Methods: For this prospective, longitudinal study, the course of changes in adequate emotional preparedness for death and its associations with severe depressive symptoms and QOL were examined on 309 consecutive caregivers of terminally ill cancer patients by univariate and multivariate generalized estimating equation analyses, respectively. Results: Prevalence of adequate emotional preparedness for death was 57.2%, 61.3%, 54.4%, and 46.0% at 181-365, 91-180, 31-90, and 1-30 days before the patient's death, respectively, without significant changes as the patient's death approached. Adequate emotional preparedness for death was associated with caregivers' lower likelihood of severe depressive symptoms (adjusted odds ratio [95% CI]: 0.23 [0.16, 0.32], P < 0.001) but with their better QOL (adjusted β [95% CI]: 7.65 [6.38, 8.92], P < 0.001) in the patient's last year. Conclusions: Without active, effective clinical interventions to promote caregivers' emotional preparedness for death, they cannot automatically become more prepared for the patient's death over time. Adequate emotional preparedness for the patient's death benefits caregivers by its associations with a lower likelihood of depressive symptoms and better QOL. Supportive programs for caregivers of terminally ill cancer patients should focus on not only enhancing caregiving skills but also cultivating emotional preparedness for their relative's death to promote their psychological well-being and QOL.
Purpose: The purposes of this study were to determine whether there were differences in the cancer pain experience between patients and family caregivers (FCGs) and to explore the associated factors that influence cancer pain experience congruence. Methods: A multicenter cross-sectional study was conducted. A total of 410 patient-family caregiver dyads completed face-to-face surveys, including information about basic characteristics, the Patient Pain Questionnaire (PPQ), and the Family Pain Questionnaire (FPQ). The difference in cancer pain experience between patients and family caregivers was analyzed using a paired t test. Indicators for the congruence of cancer pain experience were analyzed using the chi-square test and two independent-sample t tests for bivariate analysis and multivariate binary logistic regression analysis. Results: Of the patients, 57.1% were men, and 60.7% perceived moderate performance status. The majority of the family caregivers was female (54.9%). The mean (SD) score on the pain experience subscale was 4.82 (1.66) for 410 patients and 5.02 (1.66) for 410 family caregivers. The difference was significant (P < 0.01). Additionally, 87 (21.2%) dyads were in the congruent group, and 323 (78.8%) dyads were in the incongruent group. Patients' self-perceived moderate performance status (OR = 2.983, P < 0.01) and family caregivers' pain knowledge (OR = 1.171, P < 0.05) were the main factors influencing the congruence of cancer pain experience. Conclusion: The findings of this study indicate that family caregivers reported significantly worse cancer pain experiences than patients. Family caregivers' pain knowledge was a primary influencing factor. It is suggested that educational interventions aimed at teaching family caregivers and patients how to communicate their pain experience and improving the knowledge of family members regarding pain and its management may help in aligning their perceptions and thereby contribute to better quality of life and pain management outcomes.
Purpose: To compare the anxiety, depression and explore their relationship to quality of life (QoL) among adult acute leukemia (AL) patients and family caregivers (FCs) in China. Methods: A multicenter cross-sectional study was conducted from April 2017 to January 2018. The sample comprised 207 dyads of adult AL patients and FCs. The participants were required to complete socio-demographic information and the Hospital Anxiety and Depression Scale (HADS). The Functional Assessment of Cancer Therapy-Leukemia (FACT-Leu, only for patients) and MOS 36-item Short-Form Health Survey (SF-36, only for FCs) were used to measure QoL. Results: The mean scores of anxiety and depression for AL patients were 7.89 ± 3.85 and 7.18 ± 4.23, respectively. For FCs, the mean scores of anxiety and depression were 9.96 ± 3.73 and 8.64 ± 3.74. In this study, adult AL Patients' sex, patients' depression score, whether patients achieving a CR or not, education, FCs' depression score, patients' social/family well-being and emotional well-being were significantly associated with patients' anxiety or depression (p < 0.05). For FCs, depression was significantly related to the physical component summary (β = 0.127, p = 0.008). There were significant differences in anxiety (t = − 5.92, p < 0.001) and depression (t = − 4.19, p < 0.001) between patients and FCs. Conclusions: AL patients' FCs showed higher score of anxiety and depression than that of patients. The psychological health may have a potential relationship between AL patients and their FCs. Healthcare professionals can conduct family-center interventions to improve mental health and QoL of AL patients and FCs.
Background: Effective communication in support of clinical decision-making is central to the pediatric cancer care experience for families. A new laboratory derived pharmacogenetic test (LDT) that can diagnose difficult-to-treat brain cancers has been developed to stratify children based on their ability to respond to available treatment; however, the potential implementation of the LDT may make effective communication challenging since it can potentially remove the option for curative treatment in those children identified as non-responders, i.e. those with a catastrophic diagnosis. Objective: We solicited the perspectives of parents of children with difficult-to-treat brain cancer on communication preferences surrounding the potential implementation of the LDT in standard care using deliberative stakeholder consultations. Methods: Eight bereaved parents of children who succumbed to difficult-to-treat brain cancer, and four parents of children currently undergoing treatment for similar cancers attended separate small-group deliberative consultations – a stakeholder engagement method that enables the co-creation of recommendations following the consideration of competing arguments and diverse opinions of parents with different experiences. In the small-group consultations (Phase I), parents discussed four questions about potential communication issues that may arise with the LDT in practice. In Phase II, a total of five parents from both stakeholder groups (4 bereaved and 1 in current treatment) attended a consultation, known as the 'mixed' consultation, with the purpose of co-developing concrete recommendations for implementation of the LDT. Results: Explaining the risks, benefits, and accuracy of the LDT were considered essential to parents. Once an LDT-based diagnosis/prognosis can be made, parents valued honesty, empathy, and clarity in communication. Parents also requested that all results and treatment options be presented to them in measured doses, and in an unbiased manner over the course of several meetings. This communication strategy allowed sufficient time to understand and accept the diagnosis/prognosis, particularly if it was catastrophic. Continuous access to the appropriate psychological and social support or counselling at and post-diagnosis was also strongly recommended. Conclusions: Deliberants co-created family-centered recommendations surrounding communication issues of the LDT, providing guidance to pediatric oncologists that could implement the test in practice.
Background: Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. Methods: To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Findings: Seven themes describing caregivers' comfort needs were identified, including the need to understand , need for self-efficacy , need to derive meaning , need for informal support , need for formal support , need for resources , and need for self-care. Conclusions: Findings have clear implications for palliative nursing, as they directly address cancer family caregivers' needs in 5 of the 8 domains of care delineated by the National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers' needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.
Background: Patients receiving novel treatments like immune checkpoint inhibitor therapy (ICI or immunotherapy) to treat their cancer require comprehensive information so they know what to expect and to encourage the identification and reporting of possible side-effects. Videos using patient stories can be reassuring and an effective method for conveying health information. Objective: The objective of this study was to use a co-design process to develop video resources about immunotherapy to identify a) the key informational and supportive care needs of patients and family carers and b) topics clinicians recommended be addressed during pre-treatment nurse-led education. Patient involvement: Experience Based Co-design (EBCD) provided the framework for video development, to facilitate patient and carer involvement in every stage of research design and implementation, and video design and development. Methods: Data were collected and used in four stages: 1) qualitative interviews, 2) co-design workshop, 3) filming plan and 4) feedback and editing. Results: Thirty-five individuals contributed to the development of a suite of five videos called “Immunotherapy: What to Expect”. Videos covered general treatment information, preparation for infusion, potential side-effects, balancing lifestyle with treatment and seeking support. Video run time ranges from 6 to 15 min. Discussion: The EBCD process ensured that videos were developed to meet patient and carer identified needs associated with commencing and managing ICI therapy. The structure of EBCD in facilitating patient and carer involvement throughout the research and video development process ensured transparency throughout the project, and continuity of message, scope and outcomes. Practical Value: EBCD is a useful framework for developing patient-centred health resources. The videos developed are now available for patients and carers via YouTube, and provide education and support tailored to this groups’ needs regarding ICI therapy for cancer.
Current national COVID‐19 vaccination guidelines and recommendations focus vaccine guidance on patients with cancer. In this COVID‐19 vaccination race, “cocoon vaccination” strategies which include informal caregivers and household contacts as priority groups for SARS‐CoV‐2 vaccination could be an additional strategy used to protect patients with cancer who may have limited immune responses to current vaccinations. Medical systems specializing in cancer care should support education and vaccination campaigns which target informal caregivers and household contacts in addition to cancer patients.
Background: This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. Methods: A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Findings: Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity. Together they form the framing theme: being co-afflicted. Conclusions: The characteristics of informal caregivers are shown to be similar to those of people with codependency, motivating development of targeted interventions from this perspective.
Background: Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods: Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion: This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1
Context: Psychosocial behavioral interventions (PBIs) that target patients with cancer and their caregivers face challenges in participant enrollment and retention. Objectives: 1) Describe characteristics of the patient-caregiver PBI studies; 2) examine participant enrollment and retention rates; 3) identify factors influencing participant enrollment and retention rates; and 4) explore the strategies to promote enrollment and retention rates. Methods: We identified randomized controlled trials that tested PBIs among adult patients with cancer and caregivers in five electronic databases. We conducted narrative and quantitative analyses to synthesize our findings. Results: Among 55 qualified studies reviewed, most tested the efficacy of PBIs (n = 42) and used two study arms (n = 48). In-person meeting was the most common PBI delivery mode. The primary outcomes included quality of life, physical health, and symptoms. The average of enrollment rates of patient-caregiver dyads was 33% across studies (range 8%–100%; median = 23%). The average retention rate at the end of follow-ups was 69% (range 16%–100%; median = 70%). The number of study arms, recruitment method, type of patient-caregiver relationship, and intervention duration influenced enrollment rates. Study design (efficacy vs. pilot), follow-up duration, mode of delivery, type of relationship, and intervention duration influenced retention rates. Sixteen studies reported retention strategies, including providing money/gift cards upon study completion and/or after follow-up survey, and excluding patients with advanced cancer. Conclusion: Researchers need to incorporate effective strategies to optimize enrollment and retention in patient-caregiver PBI trials. Researchers need to report detailed study processes and PBI information to improve research transparency and increase consistency.
Objective: To correlate caring ability with overburden, stress and coping of urban and rural family caregivers of patients undergoing cancer treatment. Method: Crosssectional study, carried out in a referral hospital for cancer treatment, with urban and rural caregivers who responded the following instruments: questionnaire of sociodemographic characterization of the caregiver and the care provided, Perceived Stress scale, Burden Interview scale and Brief COPE. Pearson’s correlation test was used for statistical analysis, with a significance level ≤5%. Results: A total of 163 urban caregivers and 59 rural caregivers participated in the study. Between the caring ability and stress, a negative and moderate correlation was found in rural caregivers. In the relationship between the caring ability and the overburden, there was a statistically significant correlation in urban caregivers in the interpersonal relationship and perception of self-efficacy factor. Between coping and the caring ability, a positive and moderate correlation was identified in coping focused on the problem in the knowledge dimension in urban caregivers. Conclusion: Urban caregivers had greater intensity of overburden and coping focused on the problem in relation to the caring ability.
Background: Family caregivers’ role in cancer and stroke care is overly burdensome. Studies have considered burden and predictors of burden but the influence of caregiving burden on health - promoting behaviours among cancer and stroke family caregivers in Nigeria is scarce. The purpose of this study was to determine the influence of caregivers’ perceptions of burden and health-promoting behaviours on informal caregivers of cancer/ stroke patients attending tertiary care facilities in South- South Nigeria. Methods: A descriptive cross-sectional survey was employed among 410 purposively selected cancer/ stroke patients’ family caregivers in tertiary care facilities, South- South Nigeria. A standardized Zarit burden interview scale and structured questionnaire were used to measure burden and determine health-promoting behaviours respectively. Descriptive (means, standard deviation and percentages) and inferential (ANOVA) statistics with a Fisher’s protected t- test at 0.05 level of significance were used for data analysis. Results: The respondents experienced severe (F= 14.02; P= 0.810) burden in caregiving to cancer/ stroke patients. The influence of health- promoting behaviours (primary, secondary and tertiary preventions) among caregivers of cancer/ stroke is significantly high in the tertiary care facilities, South-South, Nigeria. Conclusions: aregivers of cancer and stroke patients experienced severe levels of burden and health-promoting-behaviours in terms of prevention at the primary, secondary and tertiary activities were significantly high among respondents. This calls for knowledge mobilization and dissemination in Nigeria and beyond.
Background: Pain is a major concern among patients with advanced cancer and their family caregivers. Evidence suggests that pain coping skills training interventions can improve outcomes, however they have rarely been tested in this population. Aim: To test the efficacy of a caregiver-guided pain coping skills training intervention. The primary outcome was caregiver self-efficacy for helping the patient manage pain. Design: A randomized controlled trial compared the intervention to an enhanced treatment-as-usual control. Dyads in both conditions received pain education, and those in the intervention received three sessions of pain coping skills training. Caregiver outcomes (self-efficacy; caregiver strain, caregiving satisfaction, psychological distress) and patient outcomes (self-efficacy, pain intensity and interference, psychological distress) were collected at baseline and post-intervention. Setting/participants: Two hundred two patients with stage III–IV cancer and pain and their family caregivers were enrolled from four outpatient oncology clinics and a free-standing hospice/palliative care organization. Results: Compared to those in the control arm, caregivers in the intervention reported significant increases in caregiving satisfaction (p < 0.01) and decreased anxiety (p = 0.04). In both conditions, caregivers reported improvements in self-efficacy, and patients reported improvements in self-efficacy, pain severity and interference, and psychological distress. Conclusions: This is the first study to test a pain coping skills intervention targeted to patients and caregivers facing advanced cancer. Findings suggest that pain education provides benefits for patients and caregivers, and coping skills training may be beneficial for caregivers. Further research is needed to optimize the benefits of education and pain coping skills training for improving cancer pain outcomes. Trial registration: ClinicalTrials.gov NCT02430467, Caregiver-Guided Pain Management Training in Palliative Care
Background: Oncology nurses play a key role in supporting caregivers through education and training in both inpatient and outpatient settings. This article describes the learning preferences of informal caregivers of adult care recipients. Caregiver respondents preferred multiple training methods, with most endorsing in-person instruction, online video instruction, and reading materials. AT A GLANCE: Caregivers are often underprepared for the care they provide. Oncology nurses have been known as trusted sources of information and education for patients and caregivers. Efforts should be undertaken to extend learning beyond clinical encounters and consider caregiver preferences in learning
Objective: As the number of informal caregivers and their caregiving responsibilities increase, this study aims at evaluating caregiver distress, quality of life (QoL) and their predictors in informal caregivers of cancer patients during active treatment and follow‐up. Methods: This cross‐sectional descriptive study targeted primary caregivers of patients with different cancer diagnoses. Caregiver‐reported outcomes were measured by the Caregiver Risk Screen (CRS), Distress Thermometer (DT) and Caregiver Quality of Life Index—Cancer (CQOLC). Results: Caregivers (n = 1580) experienced a low‐to‐moderate risk of caregiver distress and a moderate QoL during both treatment and follow‐up. About 13% reported a high caregiver risk and 20% reported severe distress. There was a strong and significant correlation between caregiver distress and caregivers' QoL (0.793). Predictive factors for higher distress and poorer QoL were: fewer emotional and practical resources, being female, non‐spousal relationship or not living together (p < 0.05). Caregivers of patients with head‐and‐neck, skin, lung and brain cancers reported the highest distress and lowest QoL. Conclusion: Caregiver distress is highly variable, but a minority of caregivers is at high risk for caregiver distress. Professional caregivers play an important role at supporting caregivers and detecting high‐risk caregivers.
Background: Care in the home is increasingly complex, with family caregivers now expected to take on aspects of care previously managed by nurses and other health professionals. Method: In a national sample of caregivers of older adults, we examined predictors and outcomes of level of care (low, medium, high) based on caregiving hours and counts of activities of daily living (ADLs) and instrumental ADLs supported. Results: Characteristics associated with high level of care include Hispanic or “other” race/ethnicity, being unemployed, and specific care recipient conditions (e.g., Alzheimer's disease/dementia, cancer, mobility limitations). High compared to low level of care is also associated with caregiving difficulty and unmet needs. Conclusions: These findings underscore the need for targeted interventions and nursing research to further understand the features and dynamics of care complexity. Such research can inform family-centered interventions, health care system redesign, and health policies to support family caregivers of older adults engaged in complex care.
Background: Caregiver burden is frequently studied cross-sectionally, but longitudinal studies on family caregiver burden during active cancer treatment are lacking. The goals of this study were to characterize trajectories of caregivers' burden during a 6-month active treatment period, and to examine which predictors are associated with their burden. Methods: This study was a secondary analysis of data from a prospective study. A sample of 112 family caregivers of patients receiving cancer treatment were assessed at three time points (the initiation of new treatment regimen, 3-, and 6-month follow-up). Caregivers completed measures: Caregiver Reaction Assessment and Mutuality Scale of the Family Care Inventory. Data were analyzed using latent growth curve modeling. Results: The two highest burdens were subdomains related to disrupted schedule and financial problems. Models showed a decline in schedule burden over time, yet total burden and other subscales (financial problems, health problems, and lack of family support and self-esteem) remained relatively stable. In multivariate analysis, mutuality, the relationship quality between patients and caregivers was inversely related to burden at baseline. Being a spouse, a sole caregiver and lower income were related to higher burden over time. Our findings confirmed significant determinants of caregiver burden over the course of active treatment. It is important for health care providers to be attentive to vulnerable caregivers who are at higher risk of elevated burden over time. Conclusions: Considering the multidimensional nature of caregiver burden, early assessment and tailored support programs may be effective by focusing on patient-caregiver relationships, caregiving roles, and income. • Latent growth modeling is useful for examining baseline levels and changes of caregiver burden. • Patterns over time and factors that influence burden differ, based on each burden dimension. • Caregivers who are spouses, sole caregivers, and have lower income were more at risk for higher burden over time.
Aim: Informal caregivers of cancer patients have extensive burdens. They are susceptible for deterioration of their quality of life (QOL). We aimed to assess caregiver burden and QOL of family caregivers of cancer patients receiving chemotherapy admitted in the ward/intensive care unit/high-dependency unit. Materials and Methods: This prospective observational study including 178 caregivers was carried out in a tertiary care hospital. The assessment of caregiving burden was done using the Zarit Burden Interview and its impact on QOL using the WHO BREF QOL questionnaire. Results: The mean age and mean Zarit Burden score of caregivers were 38.98 ± 10.53 and 30.697 ± 8.96, respectively. Of the total, 70.22% of caregivers reported mild-to-moderate burden and 21.38% reported moderate-to-severe burden. On assessment of QOL WHO BREF, the mean general score was 5.79 ± 1.84, physical health score was 49.65 ± 16.07, psychological health 51.85 ± 20.43, social relations 59.38 ± 21.43, and environmental 58.73 ± 17.51. The QOL scores were slightly better in mild-to-moderate burden compared to moderate-to-severe burden but not statistically significant except for social relations (P = 0.053). We did not find any difference in burden scores or QOL between male and female caregivers. Conclusion: Mild-to-moderate burden was seen in 70.22% of caregivers and 21.38% had moderate-to-severe burden.
Background: The responsibility of caring for patients with advanced cancer in sub-Saharan Africa is mostly shouldered by family members because of paucity of institutional facilities. There is a growing concern that the number of women needing treatment for advanced breast cancer is rising at an unprecedented rate in Nigeria. Aim: To assess the caregiver burden and its associated factors amongst family caregivers of women with advanced breast cancer. Setting: The study was conducted at the radiation oncology clinic of the University College Hospital, Ibadan, Nigeria. Methods: A cross-sectional descriptive study was conducted amongst 157 eligible family caregivers of women with advanced breast cancer. The family caregivers completed an interviewer-administered questionnaire, which included the socio-demographic data, the caregiving process and the Zarit Burden Interview (ZBI). Logistic regression was used to identify factors, and ethical approval was obtained. Results: Over half (53%) of the respondents were males with spousal caregivers dominantly constituting 27.4% of all respondents, closely followed by daughters (25.5%) of the care recipients. The mean ZBI score was 29.84 ± 13.9. Most (72%) of the caregivers experienced burden. Factors associated with caregiver burden were previous hospitalisation of the care recipient (odds ratio [OR] = 3.74, confidence interval [CI]: 1.67 to 8.38) and perceived dysfunction in patients activities of daily living (OR = 2.57, CI: 1.14 to 5.78). Conclusion: Family caregivers of women with advanced breast cancer experience burden of care. Recognition of this vulnerable population and the care recipient as a dyad is a sine qua non in mitigating the burden associated with their caregiving role.
Introduction: Besides affecting physical health, Oropharyngeal Dysphagia (OD) entails limitations in daily activities and social participation for both patients and their informal caregivers. The identification of OD-related needs is crucial for designing appropriate person-centered interventions. Aims: To explore and map the literature investigating the care needs related to OD management of adult persons with OD and their informal caregivers during the last 20 years. Methods: A scoping review was conducted and reported following PRISMA guidelines. Five electronic databases and reference lists of eligible publications were searched for original works in English or Italian, published between January 2000 and February 2021. Two independent raters assessed studies’ eligibility and extracted data; a third rater resolved disagreements. Extracted care needs were analyzed using a Best fit framework synthesis approach. Results: Out of 2,534 records preliminarily identified, 15 studies were included in the review and 266 care needs were extracted. All studies were conducted in Western countries. Research methods primarily consisted of qualitative interviews and focus groups (14 studies, 93.3%); head and neck cancer was the most frequent cause of patients’ dysphagia (8 studies, 53.3%); caregivers’ perspective was seldom investigated (5 studies, 33.3%). Both patients and caregivers primarily reported social (N = 77; 28.9%) and practical (N = 67; 25.2%) needs, followed by informational (N = 55; 20.7%) and psychological (N = 54; 20.3%) ones. Only patients reported physical needs (N = 13; 4.9%), while spiritual needs were not cited. Conclusions: The recurrence of personal and social needs besides physical ones highlighted the manifold impact of OD on patients’ and caregivers’ lives. Larger and more focused studies are required in order to design tools and interventions tailored to patients’ and caregivers’ needs.
Background: Fatigue interference with activities, mood, and cognition is one of the most prevalent and bothersome concerns of advanced gastrointestinal (GI) cancer patients. As fatigue interferes with patient functioning, family caregivers often report feeling burdened by increasing responsibilities. Evidence-based interventions jointly addressing cancer patient fatigue interference and caregiver burden are lacking. In pilot studies, acceptance and commitment therapy (ACT) has shown promise for addressing symptom-related suffering in cancer patients. The current pilot trial seeks to test a novel, dyadic ACT intervention for both advanced GI cancer patients with moderate-to-severe fatigue interference and their family caregivers with significant caregiving burden or distress. Methods: A minimum of 40 patient-caregiver dyads will be randomly assigned to either the ACT intervention or an education/support control condition. Dyads in both conditions attend six weekly 50-min telephone sessions. Outcomes are assessed at baseline as well as 2 weeks and 3 months post-intervention. We will evaluate the feasibility, acceptability, and preliminary efficacy of ACT for improving patient fatigue interference and caregiver burden. Secondary outcomes include patient sleep interference and patient and caregiver engagement in daily activities, psychological flexibility, and quality of life. We will also explore the effects of ACT on patient and caregiver physical and mental health service use. Discussion: Findings will inform a large-scale trial of intervention efficacy. Results will also lay the groundwork for further novel applications of ACT to symptom interference with functioning and caregiver burden in advanced cancer. Trial Registration ClinicalTrials.gov, NCT04010227. Registered 8 July 2019.
Background: Relatives' participation in the care of patients with cancer in hospital is essential to both patients and relatives. Although the meaning of relatives' participation has been recognized, knowledge about how patients experience this participation is rare. Aims: To describe the experiences of patients with cancer of the realization of relatives' participation in the hospital care. Materials & Methods: A qualitative study with semi‐structured interviews of patients with cancer (n=21) were conducted. Data was analyzed using inductive thematic analysis. Results: Three main themes were identified among patients' experiences: Relative as part of the patient's care, Relative supporting patient's coping process, and Hospital enabling or preventing relatives' participation. The relatives were available for patients in seeking information and in the decision‐making process. They helped with the daily needs of the patient, and supported patients emotionally and by managing everyday life at home. The behavior and attitudes of the healthcare professionals and the special nature of the hospital played a central role in the experiences. Conclusion: The role of relatives is an important part of the coping process and care of patients with cancer in the hospital.
Objectives and Method: In this study, the authors examined cancer family caregivers' life experience and the meaning of leisure, focusing on their difficulties and the role of leisure. Findings: We found four main themes related to cancer family caregivers' life and leisure experiences: stressors, adapting, the need of leisure, and leisure experiences. Our results showed that the caregivers experienced high levels of psychological and physical stress and conflicts while caring for cancer patients, resulting in a poor quality of life. They believed that leisure activity is necessary and can improve their quality of life; however, they felt a sense of guilt while engaging in personal activities.
Study objective: To investigate the association between family cancer caregivers’ unmet daily needs and emotional states of depression, anxiety and stress across their care recipient’s treatment phases. Method: A cross-sectional study design and self-report questionnaires were used. Family caregivers (N = 237) of cancer patients in ambulatory cancer clinics were recruited from May to December 2017, and completed a sociodemographic and medical questionnaire, the Depression Anxiety Stress Scale and Needs Assessment of Family Caregivers-Cancer Scale. Hierarchical linear regression was conducted to examine the influence of each predictor (sociodemographic variables, unmet personal care and role management needs, cancer treatment phase) on the Depression Anxiety Stress Scale total score, depression subscale, anxiety subscale, and the stress subscale. Results: Family caregivers’ unmet daily activity needs, in particular higher unmet personal care needs, during the intermediate phase (6–9 months), were significantly associated (ps<0.05) with overall distress (b = 4.93) and stress (b = 2.26). In the chronic treatment phase (>9 months), the significant association of unmet personal care needs was with overall distress (b = 5.91), anxiety (b = 1.97) and stress (b = 2.53). After completing treatment, unmet role management needs were only significantly associated with stress (b = -1.59). Caregivers’ higher depression was also associated with greater unmet role management needs, regardless of treatment phases. Conclusions: Intermediate and chronic cancer treatment phases were identified as having greatest effect on caregivers’ unmet daily activity needs and emotions. Unmet personal care needs played the major effect on overall negative emotional states in the intermediate treatment phase and stress in the chronic treatment phase. Close attention to caregivers needs in intermediate and chronic treatment phases, would be highly beneficial in alleviating negative emotional disturbances.
Background: Family caregivers of patients with cancer undergoing radiation therapy experience significant distress and challenges related to high symptom burden and complex care demands. This is particularly true for caregivers of patients with head and neck, esophageal, anal, rectal, and lung cancers, who are often receiving combined-modality treatment and may have tracheostomy tubes, gastrostomy tubes, or colostomies/ileostomies. This study aims to evaluate a simulation-based nursing intervention to provide information, support, and training to caregivers during radiation therapy. Methods: This randomized controlled trial will include a sample of 180 patients and their family caregivers. Caregivers assigned to the control group will receive usual care and an informational booklet from the National Cancer Institute (NCI). Those in the intervention group will receive usual care, the NCI booklet, and three meetings with a nurse interventionist during radiation treatment followed by a booster call two weeks posttreatment. Intervention sessions focus on themes consistent with the trajectory of radiation therapy: the patient experience/needs, the caregiver experience and dyad communication, and transition to survivorship. Outcomes are measured at baseline, end of treatment (T2), and 4 (T3) and 20 (T4) weeks posttreatment, with the primary outcome being caregiver anxiety at T4. Discussion: This trial is innovative in its use of simulation in a psychoeducational intervention for family caregivers. The intervention is administered at point-of-care and aimed at feasibility for integration into clinical practice. Patient quality of life and healthcare utilization measures will assess how providing support and training to the caregiver may impact patient outcomes. Trial registration: The trial was registered on 08/14/2019 at ClinicalTrials.gov (identifier NCT04055948).
Background: Parenting a child with cancer creates numerous additional care demands that may lead to increased difficulties in balancing work and family responsibilities. Still, there is limited knowledge of how parents cope with both parenthood and paid work after a child's cancer diagnosis. The aim of the study was to explore mothers' and fathers' experiences of balancing the dual roles of work and parenthood following a child's cancer diagnosis. Method: Nine focus groups with in total 32 parents of children with cancer in Sweden were conducted. The data was analysed using qualitative content analysis. Results: Three categories were identified: Shifts in the importance of the parent role and the work role, Influence of context and conditions on the balance of roles, and Long-term unbalance of roles. Parents expressed an increased appreciation of time spent with family, but also emphasized the importance of work to counterbalance the sometimes overwhelming parenting demands. The pre-existing financial situation, work situation, and employer behaviour were important factors influencing the parents' ability to balance work and family. Traditional gender roles influenced how couples divided responsibilities and reflected on their experiences. Mothers and fathers were also met with different expectations, which highlights the need for the healthcare to consider their communication with caregivers. Importantly, the parents expressed how the child's illness affected their ability to balance work and family for a long time, while the understanding and support from others had steadily declined. Conclusions: Enabling parents to care for their ill child without sacrificing their own career is of utmost importance, and future research should focus on identifying which factors facilitate for parents to achieve a sustainable work-life balance.
Introduction: Cancer is a major life-threatening disease and has an impact on both patients and their family members. Caring for cancer patients may lead to several levels of stress which may affect their own health as well as their quality of life. Aim: To assess the perceived stress and burden of family caregivers of head and neck cancer patients (HNC) attending cancer care centre at a tertiary care centre, Tamil Nadu. Objectives: To assess the perceived stress and the burden among caregivers of patients with head and neck cancer using the Perceived Stress Scale (PSS) and Caregiver Strain Index (CSI) respectively. Materials and Method: A Cross-sectional study was carried out for a period of three months among the caregivers of head and neck cancer patients at a cancer care centre, Madurai. A total of 200 caregivers were selected by Convenience sampling method. Data was collected using a pretested, self-structured, closed-ended questionnaire by face to face interview method. Results: The study population consisted of Caregivers aged 21-60 years, mostly females (80%), spouses (54%), employed (57%) and uneducated (66%). Most of the caregivers were from lower socioeconomic status (66%) and those who are providing care for 1 to 6 months were more in number. In this study, 82% of caregivers reported high caregiver burden (CSI ≥7) and 67% of caregivers reported high stress (PSS ≥ 26 - 40). Conclusion: Caregivers are experiencing significant burden, particularly with respect to their physical and psychological well-being, economic circumstances, social and personal relationships.
The article presents a study which analyzed the effects of advanced care planning interventions like the Family-Centered Advance Care Planning for Teens with Cancer (FACE-TC) on families' evaluation of their experiences in familial distress and caregiving. FACE-TC is recognized by the National Cancer Institute. Allso cited is the importance of pediatric palliative care in addressing the patients' and families' goals and values during serious illnesses.
Background: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. Methods: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. Results: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. Conclusions: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.
Background: Between 2000 and 2020, Europe experienced an annual net arrival of approximately 1.6 million immigrants per year. While having lower mortality rates, in the setting of severe diseases, immigrants bear a greater cancer-related burden due to linguistic and cultural barriers and socio-economic conditions. Professionals face a two-fold task: managing clinical conditions while considering the social, economic, cultural, and spiritual sphere of patients and their families. In this regard, little is known about the care provision to low-income immigrant cancer patients in real contexts. Aim: To investigate the perspective of professionals, family members, and stakeholders on the caring process of low-income immigrant cancer patients at the end of life. Design: A Constructivist Grounded Theory study. Setting/participants: The study, conducted at a Hospital in Northern Italy, involved 27 participants among health professionals, family caregivers, and other stakeholders who had recently accompanied immigrant cancer patients in their terminal phase of illness. Results: Findings evidenced that professionals feel they were not adequately trained to cope with immigrant cancer patients, nonetheless, they were highly committed in providing the best care they could, rushing against the (short) time the patients have left. Analyses evidenced four main categories: "providing and receiving hospitality," "understanding each other," "addressing diversity," and "around the patient," which we conceptualized under the core category "Achieve the best while rushing against time." Conclusions: The model reveals the activation of empathic and compassionate behavior by professionals. It evidences the need for empowering professionals with cultural competencies by employing interpreters and specific training programs.
Background: Caregiving for childhood cancer survivors may be burdensome for caregivers and affect their physical health and health behaviors. However, studies examining health behaviors in caregivers of childhood cancer survivors are scarce. This study aimed to examine health behaviors of caregivers of childhood cancer survivors by comparing them with those of the general population, and analyze associated factors. Methods: This study included 326 caregivers of childhood cancer survivors recruited from 3 major hospitals in South Korea and 1304 controls from the Korean National Health and Nutritional Examination Survey matched for age, sex, and education level. We compared health behaviors between the two groups by using conditional logistic regression analyses, and investigated factors associated with unhealthy behaviors in caregivers by using multiple logistic regression analyses. Results: Caregivers were less likely to be physically inactive (aOR: 0.69, 95% CI: 0.51, 0.92) compared to controls, and this was more evident in women (aOR: 0.65, 95% CI: 0.45, 0.94). However, caregivers were more likely to be binge drinkers (aOR: 2.26, 95% CI: 1.73, 2.97), especially if they were men (aOR: 13.59, 95% CI: 8.09, 22.82). Factors associated with unhealthy behaviors in caregivers differed by the type of behavior. Current smoking risk was lower in female caregivers and in those with more comorbidities. Increasing age, female sex, higher education level, and lower household income were associated with lower risk of binge drinking. Higher household income and anxiety were associated with lower risk of physical inactivity, while depression was associated with higher risk of physical inactivity. Conclusions: Caregivers of childhood cancer survivors were more likely to engage in binge drinking, but less likely to be physically inactive. Strategies to promote adherence to desirable health behaviors in caregivers are needed with consideration of their socioeconomic and clinical factors, such as number of comorbidities.
Purpose Relatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers. Methods Responses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB). We assessed relationships between CGB and demographic variables, ADLs/IADLs, and level of care. Multivariable logistic regression determined which ADLs and IADLs were associated with high CGB. Results Over 75% of caregivers were female and 97% identified as African American. Mean age was 52.6 years. Fifty-six percent were employed outside the home, and 90% were related to the survivor. Caregivers averaged 35.7 h/week providing care, assisting with on average 2.8 ADLs and 5.0 IADLs. Despite the many hours and activities reported, no caregivers rated CGB as severe; only 4% rated it moderate to severe. ADLs associated with the top quartile of CGB were feeding and toileting; IADLs were finances, telephoning, housework, and medications. Conclusions Caregivers for African American cancer survivors provide many hours of care, yet most describe their CGB as low. Although ADL assistance is often available through the healthcare system, assistance with IADLs presents an opportunity to lessen the burden for these caregivers and their care recipients. Implications for Cancer Survivors African American cancer survivors receive much care from informal family caregivers, who assist with multiple ADLs and IADLs. Formal IADL assistance programs, similar to those available for ADLs, would benefit both survivors and caregivers.
Purpose Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children. Methods We conducted semi-structured interviews with 39 midlife parent and adult child caregivers of patients with leukemia or lymphoma. Using a family systems theory lens, we conducted a thematic analysis using the constant comparative method to identify how caregiving impacts the larger family system. Results Caregivers ranged from age 30 to 64 (M= 43). They described four ways that caregiving impacted themselves and the larger family system: (1)disruption of home life, (2)emotional (dis)connection, (3)juggling competing roles, and (4)developing resiliency and intimacy. Perspectives within each category differed based on their relational role to the patient or in the broader family. Conclusions Themes identify ways to provide support to both caregiver types. Support care resources could help families navigate gains and losses impacting the family system after a blood cancer diagnosis. Both caregiver types described experiencing (and/or their family experiencing) a loss in relational connection, feeling alone, and members distancing themselves. Both caregiver types also described gains in family functioning, like strengthened bonds and togetherness. Findings validate the need for family-centered support with key areas to address for healthy family functioning.
Palliative care, which is more than just terminal care, is still unknown in most parts of India. This narrative highlights how early integration of palliative medicine can help the patient and their family to make the most of their time together. Besides, excellent clinical acumen is required while looking after the sickest and the most critical patients, proper communication skills, and an ethical and holistic approach enables a good doctor-patient relationship. Good pain relief, symptom control, attention to nursing issues, providing information sensitively to empower patients and families for joint decision making, and advance care planning can help bring about a decent death and bereavement. Healing is brought about not only for the caregivers but also for the healthcare professionals.
Stress associated with caring for a mentally ill spouse can adversely affect the health status of caregivers and their children. Adding to the stress of caregiving is the stigma often placed against spouses and children of people with mental illness. Contrary to mental illness, many physical disorders such as cancer may be less stigmatized (expect pulmonary cancer). In this study, we measured externalized and internalized stigma, as well as psychological (depressive symptoms and stressful life events) and physiological (basal salivary cortisol levels) markers of stress in 115 spouses and 154 children of parents suffering from major depressive disorder, cancer, or no illness (control group). The results show that spouses and children from families with parental depression present significantly more externalized stigma than spouses and children from families with parental cancer or no illness, although we find no group differences on internalized stigma. The analysis did not show a significant group difference either for spouses or their children on depressive symptomatology, although spouses from the parental depression group reported greater work/family stress. Finally, we found that although for both spouses children the awakening cortisol response was greater on weekdays than on weekend days, salivary cortisol levels did not differ between groups. Bayes factor calculated on the null result for cortisol levels was greater than 100, providing strong evidence for the null hypothesis H0. Altogether, these results suggest an impact of stigma toward mental health disorder on psychological markers of stress but no impact of stigma on physiological markers of stress. We suggest that these results may be due to the characteristics of the families who participated in the present study.
Aim: This study was conducted to investigate the relationships between caregiving stress, mental health and physical health in family caregivers of adult patients with cancer at a University Teaching Hospital in Jeddah city, Saudi Arabia.; Methods: A cross-sectional correlational study was carried out with a convenience sample of 160 family caregivers of adult patients with cancer. Data were collected using a self-administered questionnaire including the Modified Caregiver Strain Index, the DUKE Health Profile and sociodemographic items. The data were analysed using the Statistical Package for the Social Sciences (SPSS). Descriptive and inferential statistics and correlations were performed.; Results: Participants experienced a certain level of caregiving stress (M = 9.01, SD = 5.645). Many factors were found to be correlated to higher caregiving stress in this study. Caregiving stress showed significant moderate negative correlations with mental and physical health (p < 0.01). Statistically significant differences were found between age, gender, nationality, education, monthly income, and caregiving stress or DUKE Health Profile scores (p < 0.05).; Conclusions: Caregiving stress affects family caregivers' mental and physical health. Such stress can disrupt the caregiving performance of family caregivers. Discovering the causes of caregiving stress among the family caregivers of adult patients with cancer may help to determine the main elements affecting patient care and can assist oncology nurses in providing support and services to caregivers. Educational strategies/intervention programs in the hospitals may be required to reduce caregiving stress levels and improve the health and well-being of family caregivers of adult patients with cancer.
OBJECTIVES: To examine relationships in mindfulness and illness acceptance and psychosocial functioning in patients with metastatic breast cancer and their family caregivers. SAMPLE & SETTING: 33 dyads from an academic cancer center in the United States. METHODS & VARIABLES: Participants completed questionnaires on mindfulness, illness acceptance, relationship quality, anxiety, and depressive symptoms. Dyadic, cross-sectional data were analyzed using actor-partner interdependence models. RESULTS: Greater nonjudging, acting with awareness, and illness acceptance among caregivers were associated with patients' and caregivers' perceptions of better relationship quality. Higher levels of these processes were associated with reduced anxiety and depressive symptoms in patients and caregivers. IMPLICATIONS FOR NURSING: Aspects of mindfulness and illness acceptance in dyads confer benefits that are primarily intrapersonal in nature. Nurses may consider introducing mindfulness and acceptance-based interventions to patients and caregivers with adjustment difficulties.
Context. In end-of-life care, rehabilitation for patients with cancer is considered to be an important means for improving patients' quality of death and dying. Objectives. To determine whether the provision of rehabilitation for patients with cancer in palliative care units is associated with the achievement of a good death. Methods. This study involved a cross-sectional, anonymous, and self-report questionnaire survey of families of patients with cancer who died in palliative care units in Japan. We evaluated the short version of Good Death Inventory (GDI) on a seven-point scale. A logistic regression model was used to calculate the propensity score. Covariates included in this model were survey year, patients' characteristics, and families' characteristics. The associations between rehabilitation and GDI were tested using trend tests after propensity score matching adjustment. Results. Of the 1965 family caregivers who received the questionnaires, available data were obtained from 1008 respondents (51.2%). Among them, 285 (28.2%) cases received rehabilitation in palliative care units. There was no difference in total GDI score between the groups with and without rehabilitation. In exploratory analyses, patients receiving rehabilitation were significantly more likely to feel maintaining hope and pleasure (mean 4.50 [SE 0.10] vs. 4.05 [0.11], respectively; effect size [ES] 0.31; P = 0.003), good relationships with medical staff (mean 5.67 [SE 0.07] vs. 5.43 [0.09], respectively; ES 0.22; P = 0.035), and being respected as an individual (mean 6.08 [SE 0.06] vs. 5.90 [0.07], respectively; ES 0.19; P = 0.049) compared with patients not receiving rehabilitation. Conclusion. Rehabilitation in palliative care units may contribute to several domains of quality of death and dying, particularly maintaining hope and pleasure. Further research is needed to investigate whether palliative rehabilitation contributes to the achievement of a good death.
Purpose: Patients with cancer often experience a reduced ability to eat. This can have psychosocial consequences for both patients and informal caregivers. Current literature is mainly focused on patients with end stage advanced disease and cancer cachexia. This qualitative study provides new insights in the field of Psycho Oncology by exploring psychosocial consequences of a reduced ability to eat in patients in different stages of the disease and in recovery and remission. Method: Semi-structured interviews (n = 26) were conducted in patients with head and neck, lung cancer or lymphoma. Patients' informal caregivers participated in 12 interviews. All interviews were recorded, transcribed and thematically analysed using Atlas.ti. Results: Four themes emerged related to psychosocial consequences of a reduced ability to eat: struggle with eating, high sense of responsibility, misunderstanding by social environment and social consequences. Emotions mentioned by patients and informal caregivers were: anger, anxiety, disappointment, grief and sadness, guilt, powerlessness and shame. The theme social consequences was related to: less pleasure experienced and the social strategies: adjust, search for alternatives and avoid. Conclusion: Patients with cancer and their informal caregivers experience a wide range of psychosocial consequences of reduced ability to eat during all phases of the disease trajectory and in recovery and remission. It is important to recognise and acknowledge this struggle to optimise future care.
Background: Cancer patients who undergo allogeneic hematopoietic stem cell transplantation are among the most medically fragile patient populations with extreme demands for caregivers. Indeed, with earlier hospital discharges, the demands placed on caregivers continue to intensify. Moreover, an increased number of allogeneic hematopoietic stem cell transplantations are being performed worldwide, and this expensive procedure has significant economic consequences. Thus, the health and well-being of family caregivers have attracted widespread attention. Mobile health technology has been shown to deliver flexible, and time- and cost-sparing interventions to support family caregivers across the care trajectory. Objective: This protocol aims to leverage technology to deliver a novel caregiver-facing mobile health intervention named Roadmap 2.0. We will evaluate the effectiveness of Roadmap 2.0 in family caregivers of patients undergoing hematopoietic stem cell transplantation. Methods: The Roadmap 2.0 intervention will consist of a mobile randomized trial comparing a positive psychology intervention arm with a control arm in family caregiver-patient dyads. The primary outcome will be caregiver health-related quality of life, as assessed by the PROMIS Global Health scale at day 120 post-transplant. Secondary outcomes will include other PROMIS caregiver- and patient-reported outcomes, including companionship, self-efficacy for managing symptoms, self-efficacy for managing daily activities, positive affect and well-being, sleep disturbance, depression, and anxiety. Semistructured qualitative interviews will be conducted among participants at the completion of the study. We will also measure objective physiological markers (eg, sleep, activity, heart rate) through wearable wrist sensors and health care utilization data through electronic health records. Results: We plan to enroll 166 family caregiver-patient dyads for the full data analysis. The study has received Institutional Review Board approval as well as Code Review and Information Assurance approval from our health information technology services. Owing to the COVID-19 pandemic, the study has been briefly put on hold. However, recruitment began in August 2020. We have converted all recruitment, enrollment, and onboarding processes to be conducted remotely through video telehealth. Consent will be obtained electronically through the Roadmap 2.0 app. Conclusions: This mobile randomized trial will determine if positive psychology-based activities delivered through mobile health technology can improve caregiver health-related quality of life over a 16-week study period. This study will provide additional data on the effects of wearable wrist sensors on caregiver and patient self-report outcomes.
Background: Cancer pain management at home is a complicated and multidimensional experience that affects the foundational aspects of patients and their families' lives. Understanding the pain relief process and the outcomes of palliative care at home is essential for designing programs to improve the quality of life of patients and their families. Objective: To explore family caregivers and patients' experiences of pain management at home and develop a substantive theory. Design: The study was carried out using a grounded theory methodology. Setting/Participants: Twenty patients and 32 family caregivers were recruited from Oncology wards and palliative medicine clinics in the hospitals affiliated to Iran University of Medical Sciences using Purposeful and theoretical sampling. Results: The core category in this study was "pain relief with the least harm." Other categories were formed around the core category including "pain assessment, determining the severity of pain, using hierarchical approaches to pain relief, assessing the results of applied approaches, determining the range of effectiveness, and barriers and facilitators of pain relief." The substantive theory emerged from these categories was "Pain management process in cancer patients at home: Causing the least harm" that explains the stages of applying hierarchical approaches to pain relief, family care givers try to make decisions in a way that maximize pain relief and minimize damage to the patient. Along with using a hierarchical pattern, the process is featured with a circular pattern at broader perspective, which reflects dynamism of the process. Conclusion: The inferred categories and theory can expand knowledge and awareness about the stages of pain relief process, the pattern of using pain relief approaches, and the barriers and facilitators of pain relief process at home. Health-care professionals may use these findings to assess the knowledge, skill, capability, problems, and needs of family caregivers and patients and develop supportive and educational programs to improve the efficiency of pain relief process at home and improve the patients' quality of life.
OBJECTIVE This study aimed to investigate the preparedness of individuals providing care for cancer patients. METHODS This cross-sectional descriptive study was carried out with 203 Turkish cancer family caregivers in January-March 2019. The person who spent the longest time with the patient was chosen as the caregiver. The data were collected through face-to-face interviews with the "Caregiver Introductory Form" and "Preparedness Scale of the Family Care Inventory". The scale consisted of eight items, the total score range is 0-32. Higher scores indicate that the caregiver feels more prepared for their role. Data were evaluated by independent groups t-test and one-way analysis of variance test. RESULTS The average age of caregivers was 46.86 +/- 13.8; most of them were female (64.5%). Caregivers' mean score of preparedness to provide care was 27.03 +/- 6.05. Caregivers' with moderate economic status were more ready to provide care than those with poor economic status (p<0.05). Caregivers who provided care for their patients for less than a year were more ready to provide care compared to those who cared for the patients for one to five years. Likewise, those who provided care for the patients for six to ten years were more ready to provide care than those who provided care for one to five years (p<0.05). CONCLUSION Caregivers with a modest economic status, those with less than one year of caregiving experience, and those with over five years of caregiving experience feel more ready to provide care.
Background Limited comprehension of the concept of palliative care and misconceptions about it are barriers to meaningful utilisation of palliative care programs. As caregivers play an integral role for patients with terminal illness, it is necessary to assess their perceptions and attitudes towards the palliative care approach. Method A cross-sectional survey was conducted. Data was collected from the Aga Khan Hospital in-patient and out-patient departments and home-based palliative care services. All adult caregivers who met the inclusion criteria and consented, completed a questionnaire till the sample size was reached. Univariate and multivariate multivariable analysis was done and results were reported as crude prevalence's, crude and adjusted prevalence ratios with 95% confidence intervals using Cox-proportional hazard algorithm. Mean difference of knowledge and attitude scores by caregiver variables were assessed using one-way ANOVA. SPSS version 18 was used and a p-value of less than 5% was treated as significant. Results Out of 250 caregivers more than 60% were 40 years or less, majority were males and at least graduates. Approximately 70% of the respondents agreed with the statement that the person suffering from cancer should be informed about the diagnosis and disease progression. About 45% (95% C.I.: 39.03, 51.37%) of the study respondents had enhanced understanding about palliative care. Individuals under 40 years old, those with an education level of at least grade 10, children or relatives were found to have significantly more enhanced knowledge about palliative care. The majority believed that the patient should be informed about the diagnosis and should be facilitated to carry out routine activities and fulfill their wishes. Conclusion Nearly half of the caregivers had enhanced understanding of the palliative care approach. They showed consistent understanding of two foundational aspects indicating correct knowledge across age groups, gender, education level, and relationship with the patient. Firstly, that palliative care should be offered to everyone suffering from a terminal illness and, secondly, that this approach encompasses not just physical, but also psychological and social needs of the patient and the family. These findings will help inform the establishment of a palliative care program that fills the gaps in comprehension and knowledge of caregivers.
Introduction: Cancer has been most feared among all the significantly increasing chronic diseases, and is widely assumed to be fatal. The quality of life (QOL) of the patient pertaining to physical, psychological, social, and spiritual well-being is altered, which ultimately affects the QOL of the family caregivers. The study was conducted to assess the QOL among family caregivers of cancer patients and how cancer changes and alters the vision about life for the patient as well as the family caregivers. Objective: The objective was to assess the QOL among family caregivers of the cancer patients. Methodology: A cross-sectional, questionnaire-based study was conducted after the protocol was approved by the institutional ethics committee and obtaining written informed consent from the participants. Two sets of validated questionnaire were used to assess the awareness and QOL of the family caregivers of the cancer patients. The filled questionnaires were received from the participants, and data were analyzed using descriptive statistics. Results: Nearly 74% (148/200) of the participants responded, with majority of the caregivers being females (71.62%). Majority (72.9%) expressed that cancer cannot spread from one person to another and were positive (70.9%) toward cancer cure. The caregivers (76.3%) opined that the diagnosis of cancer should be informed to the family members. Approximately 50% of the participants were aware that environmental toxins and tobacco would predispose to cancer. Although most of them (87.8%) believed that the cancer treatment cause ill effects, they (93.2%) were satisfied with the hospital facilities. Among the QOL parameters, most of the participants had complaint of decreased general physical health, difficulty to cope, reduced concentration, anguish over the first treatment, disease, and interference in household activities. Among the spiritual parameters, the participants expressed sufficient support from religious activities, prayer, and general spiritual well-being. Conclusion: Majority of the caregivers had awareness regarding the cancer and carcinogens from the environmental toxins. The QOL among caregivers of cancer patients is affected in all dimensions of life, with more emphasis on the social and psychological dimensions.
Background: While clinical pathways have been widely adopted to decrease variation in cancer treatment patterns, they do not always incorporate patient and family caregiver perspectives. We identified shared patient and family caregiver considerations influencing treatment preferences/decision making to inform development of a shared decision pathway. Methods: We conducted qualitative interviews with women who completed initial definitive treatment for stage I–III breast cancer and their family caregivers. As part of a broader interview, we asked participants what they considered when choosing a treatment option for themselves/their loved one. We coded transcribed interviews, analyzed patient and family caregiver datasets separately, and compared findings. Findings Patients' (n = 22) mean age was 55.7 years, whereas family caregivers' (n = 20) mean age was 59.5 years, with most (65%) being patients' spouses/partners. Considerations reported by both groups included cancer status, treatment issues, physical/psychosocial/family consequences, and provider/health care system issues. Data revealed three key tensions that arise during treatment decision making: (1) having enough information to set expectations but not so much as to be overwhelming; (2) balancing the highest likelihood of cure with potential physical/emotional/social/financial consequences of the chosen treatment; and (3) wanting to make data-driven decisions while having a personalized treatment plan. Discussion: Patients and family caregivers identified several considerations of shared relevance reflecting different perspectives. Efforts to balance considerations can produce tensions that may contribute to decision regret if unaddressed. Conclusion: Clinical pathways can increase exposure to decision regret if treatment options are selected without consideration of patients' priorities. A shared decision pathway that incorporates patient-centeredness could facilitate satisfactory decision making. Plain Language Summary: A clinical pathway is a tool used by doctors and nurses to help them plan how they will take care of patients. Clinical pathways do not always include what is important to patients and their families. We spoke with patients with breast cancer and their family members. We wanted to learn what is important to them when they are making decisions about how the patient will be treated for cancer. They reported thinking about the kind of cancer the patient had and about pros and cons of different treatment choices. They also thought about how much is known about different treatment choices. Other patients' stories were important. Patients and family members wanted to know how a treatment would affect their bodies, feelings, normal roles in life, and families. They also thought about their relationship with their doctors and nurses and about how they would pay for their care. It was seen as hard to balance these things when making decisions. Patients and family members wanted to make decisions they would be happy with later. We will use this information to create a new clinical pathway. This tool will help patients with breast cancer, family members, doctors, and nurses work together to make the best decisions about the patient's cancer.
Purpose: Cancer and its treatment can affect quality of life (QOL) in cancer patient and family caregiver dyads. However, the factors influencing dyad QOL remain inconclusive. Our study was designed to (i) assess dyads’ QOL, and examine the relationship between the QOL of cancer patients and that of their family caregivers, and (ii) investigate factors that may modify this relationship. Methods: Participants comprised 641 cancer patient-family caregiver dyads. Four types of variables were collected as potential influencing factors, including cancer patient–related variables, family caregiver–related variables, family-related variables, and symptom distress–related variables. Results: Generally, family caregivers reported better QOL than cancer patients did. The effect sizes of the correlation (r) between cancer patients’ QOL and those of their family caregivers ranged from 0.08 to 0.27. Various variables influencing the QOL correlations between cancer patients and family caregivers were identified, including cancer patient–related variables (e.g., age, gender, marital status, understanding of the disease, cancer type and treatment); family caregiver–related variables (e.g., being the spouse or offspring of a patient, duration in their role as a family caregiver, understanding of the disease, and amount of time spent on caregiving each day); family-related variables (e.g., cancer patient enjoyed a good relationship with family pre-cancer diagnosis, family was experiencing serious or mild financial burden due to cancer treatment); and symptom stress–related variables (anxiety and depression). Conclusions: Study findings draw attention to QOL and its related factors in cancer patient-family caregiver dyads. This will benefit the development of interventions to improve dyad QOL.
Background: Sleep disorders are commonly experienced by community caregivers for persons with cancer, with at least 72% reporting moderate to severe disorders. A consequence of this condition, which is associated with the presence of overload in the caregiver, is the increased risk of clinical depression. The aim of this study is to evaluate the effects of music on the sleep quality achieved by informal caregivers for cancer patients receiving home palliative care. In addition, we will assess the influence of specific variables that could modify these effects, analyse the correlates related to nocturnal wakefulness and consider the diurnal consequences according to the sleep characteristics identified. Methods: This single-blind, multicentre, randomised clinical trial will focus on informal providers of care for cancer patients. Two samples of 40 caregivers will be recruited. The first, intervention, group will receive seven music-based sessions. The control group will be masked with seven sessions of therapeutic education (reinforcing previous sessions). Outcomes will be evaluated using the Pittsburgh Sleep Quality Index, a triaxial accelerometer, EuroQol-5D-5L, the Caregiver Strain Index, the Epworth Sleepiness Scale and the Client Satisfaction Questionnaire. The caregivers' satisfaction with the intervention performed will also be examined. Discussion: This study is expected to extend our understanding of the efficacy of music therapy in enhancing the sleep quality of caregivers for patients receiving home palliative care. To our knowledge, no reliable scientific investigations of this subject have previously been undertaken. Music is believed to benefit certain aspects of sleep, but this has yet to be proven and, according to a Cochrane review, high-quality research in this field is necessary. One of the main strengths of our study, which heightens the quality of the randomised clinical trial design, is the objective assessment of physical activity by accelerometry and the use of both objective and subjective measures of sleep in caregivers. Music therapy for the caregivers addressed in this study is complementary, readily applicable, provokes no harmful side effects and may produce significant benefits.
Objective To determine the level and influencing factors of informal caregiver burden in gynaecological oncology inpatients receiving chemotherapy. Methods This cross-sectional study enrolled gynaecological oncology patients and their informal caregivers between May 2018 and November 2018 and measured the caregivers' burden using the Caregiver Burden Inventory. The influencing factors were evaluated with univariate regression analysis and multivariate linear stepwise regression analysis. Results A total of 138 patients and their informal caregivers completed the questionnaire. The mean +/- SD total informal caregiver burden score was 53.18 +/- 10.97. The highest mean +/- SD score was recorded in the dimension of time-dependent burden (14.28 +/- 2.74), followed by developmental burden (13.65 +/- 2.15), physical burden (10.52 +/- 2.07), social burden (7.61 +/- 2.58) and emotional burden (7.12 +/- 1.43). Multivariate analysis showed that the informal caregiver's sex, relationship to the patient, daily duration of care, presence of chronic health problems and the duration of the patient's disease were factors influencing the level of caregiver burden. Conclusions The informal caregivers of gynaecological cancer patients hospitalized for chemotherapy experience a moderate level of burden. Nursing measures should be considered to reduce informal caregiver burden and improve the quality of lives of both patients and their caregivers.
Background: Most terminally ill cancer patients prefer to die at home, but a majority die in institutional settings. Research questions about this discrepancy have not been fully answered. This study applies artificial intelligence and machine learning techniques to explore the complex network of factors and the cause-effect relationships affecting the place of death, with the ultimate aim of developing policies favouring home-based end-of-life care. Methods: A data mining algorithm and a causal probabilistic model for data analysis were developed with information derived from expert knowledge that was merged with data from 116 deceased cancer patients in southern Switzerland. This data set was obtained via a retrospective clinical chart review. Results: Dependencies of disease and treatment-related decisions demonstrate an influence on the place of death of 13%. Anticancer treatment in advanced disease prevents or delays communication about the end of life between oncologists, patients and families. Unknown preferences for the place of death represent a great barrier to a home death. A further barrier is the limited availability of family caregivers for terminal home care. The family's preference for the last place of care has a high impact on the place of death of 51%, while the influence of the patient's preference is low, at 14%. Approximately one-third of family systems can be empowered by health care professionals to provide home care through open end-of-life communication and good symptom management. Such intervention has an influence on the place of death of 17%. If families express a convincing preference for home care, the involvement of a specialist palliative home care service can increase the probability of home deaths by 24%. Conclusion: Concerning death at home, open communication about death and dying is essential. Furthermore, for the patient preference for home care to be respected, the family's decision for the last place of care seems to be key. The early initiation of family-centred palliative care and the provision of specialist palliative home care for patients who wish to die at home are suggested.
Cancer is a chronic and life-threatening disease that causes complications to the patients diagnosed with it as well as to those who were taking care of them; i.e. the caregivers who normally are family members of the patient. Cancer caregivers experience burden and stress during the period of caregiving which contributes to their quality of life (QOL). However, there is scarce literature on the QOL of gastrointestinal cancer caregivers in the local population. The purpose of this study is, therefore, to determine the health-related quality of life (HRQOL) of male and female caregivers and identify contributing factors to their caregiving. This cross-sectional study was conducted in three major tertiary government hospitals in the Klang Valley. Systematic random sampling was used to recruit the main caregivers of gastrointestinal cancer patients. The inclusion criteria for the caregivers were respondents aged 18 and above, Malaysian, able to understand and read Bahasa Melayu, free from any diagnosed cancer. A total of 323 respondents completed the validated questionnaire on HRQOL from October 2017 to April 2018. Data were analysed using independent t-test and chi-square tests. In the sample population, the majority of patients were females compared to males (68.1% vs 31.9%). The mean HRQOL score for females was 77.66 (SD=21.36) while the mean HRQOL for males was 85.52 (SD=21.16). Data shows that males had a better quality of life in comparison to females. The HRQOL scores were significantly different according to gender, t=3.09, mean difference=7.85(SD=2.54), 95%Cl 2.85,12.85. p value=0.002. Factors that were significantly different between males and females were: relationship between the caregiver and the patient (p-value=0.001); education level (p value=0.019); employment status (p value=<0.001), marital status (p value=0.048), household income (p value=0.021) and presence of disease (p value=0.015). These findings indicate that gender affects caregiving. This implies that health care providers should acknowledge the role of gender in caregiving. This is also a significant factor to guide policymakers in improving the existing healthcare system for caregivers.
Study aims: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. Design & methods:This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). Results: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. Conclusions: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life. • Many spouses appeared to be weathering the stressors of end-of-life caregiving well. • 1 in 4 spouse/partner caregivers exhibited significant health problems. • Better active coping may help spouses adapt to caregiver role and preserve health. • Coping style and health during the caregiving period may impact the grief process. • Caregiving and bereavement should not be considered as isolated life phases.
Objective Insomnia is a common, distressing, and impairing psychological outcome experienced by informal caregivers (ICs) of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) and acupuncture both have known benefits for patients with cancer, but such benefits have yet to be evaluated among ICs. The purpose of the present study was to evaluate the feasibility, acceptability and preliminary effects of CBT-I and acupuncture among ICs with moderate or greater levels of insomnia. Method Participants were randomized to eight sessions of CBT-I or ten sessions of acupuncture. Results Results highlighted challenges of identifying interested and eligible ICs and the impact of perception of intervention on retention and likely ultimately outcome. Significance of the results Findings suggest preliminary support for non-pharmacological interventions to treat insomnia in ICs and emphasize the importance of matching treatment modality to the preferences and needs of ICs.
Background Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes. Aim We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes. Design/participants Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore. Results Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem. Conclusion Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
INTRODUCTION We aimed to examine the relative importance of medical and psychosocial needs of Asian breast cancer patients and their caregivers, and to identify the determinants of quality of life (QoL) at the time of diagnosis. METHODS This is a prospective observational study of the perceived needs and QoL of 99 dyads of breast cancer patients and their caregivers at diagnosis. A self-administered questionnaire was used to measure the perceived importance of medical and psychosocial support needs. Short Form-36 health survey (SF-36) version 2 was used to measure QoL. We also collected patient and caregiver demographic profiles and disease-specific information. Descriptive analysis of perceived needs was performed. SF-36 scores for eight domains and composite scores were calculated. Bivariate analysis and linear regression were performed to identify significant independent predictors of QoL of patients and caregivers. RESULTS The mean ages of the patients and caregivers were 56.5 years and 51.7 years, respectively. To have family around (73%), prompt information about treatment and treatment options, including side effects (71%), and prompt treatment for side effects (71%) were the top three needs among patients and their caregivers. Supportive nurses and prompt treatment for side effects positively improved patients' social functioning and bodily pain scores. Stage of disease, age, education and ethnicity also influenced QoL. Only the presence of chronic disease influenced caregivers' physical functioning and role-physical scores. CONCLUSION Patients and caregivers have similar perceptions of needs at diagnosis. A supportive healthcare team can positively influence patients' QoL, highlighting the importance of tailoring support according to needs.
Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients' discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present ('being there') which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones' wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
Background In a recent trial, a 6-session intervention (BMT-CARE) integrating medical information with cognitive-behavioral strategies improved quality of life (QOL), mood, coping skills, and self-efficacy for family/friend caregivers of hematopoietic stem cell transplantation (HCT) recipients. This study examined whether improvements in coping and self-efficacy mediated the intervention effects on QOL and mood. Methods From December 2017 to April 2019, 100 caregivers of HCT recipients were enrolled into a randomized clinical trial of BMT-CARE versus usual care. Caregivers completed self-report measures of QOL (CareGiver Oncology Quality of Life questionnaire), depression and anxiety symptoms (Hospital Anxiety and Depression Scale), coping skills (Measure of Current Status), and self-efficacy (Cancer Self-Efficacy Scale-Transplant) at enrollment (before HCT) and 60 days after HCT. Causal mediation regression models were used to examine whether changes in coping and self-efficacy mediated intervention effects on QOL as well as depression and anxiety symptoms. Results Improvements in 60-day QOL in patients assigned to BMT-CARE were partially mediated by improved coping and self-efficacy (indirect effect, 6.93; SE, 1.85; 95% CI, 3.71-11.05). Similarly, reductions in 60-day depression and anxiety symptoms were partially mediated by improved coping and self-efficacy (indirect effect for depression, -1.19; SE, 0.42; 95% CI, -2.23 to -0.53; indirect effect for anxiety, -1.46; SE, 0.55; 95% CI, -2.52 to -0.43). Combined improvements in coping and self-efficacy accounted for 67%, 80%, and 39% of the total intervention effects on QOL and depression and anxiety symptoms, respectively. Conclusions Coping and self-efficacy are essential components of a brief psychosocial intervention that improves QOL and mood for caregivers of HCT recipients during the acute recovery period. LAY SUMMARY A 6-session program (BMT-CARE) focused on providing medical information, caregiving skills, and self-care and coping strategies has been previously reported to improve the quality of life and mood of caregivers of hematopoietic stem cell transplantation recipients in comparison with caregivers who receive care as usual. Using statistical models, this study suggests that learning coping skills and improving self-efficacy are the most essential components of this program that likely lead to better quality of life and mood for caregivers.
Background: Family caregivers (FCGs) play a key role in the plan of care provision for long-term cancer survivors, yet few studies have been conducted on the impact of long-term caregiving on FCGs and their employment patterns. This study aims to further our understanding of the effect that caregiving role has on FCGs by identifying what cancer-related characteristics influence reduction of employment hours among FCGs in the post-treatment phase in China.; Methods: A total of 1155 cancer survivors participated in this study. Patients reported changes in the employment patterns of their FCGs. Descriptive analysis looked at demographic and cancer-related characteristics of cancer survivors and types of FCGs' employment changes in both primary- and post-treatment phases. Chi-square test was used to statistically test the association between survivors' characteristics and changes in FCGs' hours of labor force work in post-treatment phase. Separate multivariable logistic regression models were used to examine the relationship between cancer-related characteristics of participants and employment reduction patterns among FCGs in post-treatment phase while controlling for demographic factors.; Results: In the primary-treatment phase, 45.6% of all FCGs reduced their working hours and 17.4% stopped working altogether. In the post-treatment phase, 25.2% of FCGs worked fewer hours and 6.6% left the workforce completely. The results show that a higher probability of change in employment hours among FCGs is associated with the following patient characteristics: having comorbidities, receiving chemotherapy treatment, limited ability to perform physical tasks, limited ability to perform mental tasks, and diagnosis of stage II of cancer.; Conclusions: Care for cancer patients in both primary- and post- treatment phases may have substantial impacts on hours of formal employment of Chinese FCGs. Interventions helping FCGs balance caregiving duties with labor force work are warranted.
Background Supportive care interventions have demonstrated benefits for both informal and/or family cancer caregivers and their patients, but uptake generally is poor. To the authors' knowledge, little is known regarding the availability of supportive care services in community oncology practices, as well as engagement practices to connect caregivers with these services. Methods Questions from the National Cancer Institute Community Oncology Research Program (NCORP)'s 2017 Landscape Survey examined caregiver engagement practices (ie, caregiver identification, needs assessment, and supportive care service availability). Logistic regression was used to assess the relationship between the caregiver engagement outcomes and practice group characteristics. Results A total of 204 practice groups responded to each of the primary outcome questions. Only 40.2% of practice groups endorsed having a process with which to systematically identify and document caregivers, although approximately 76% were routinely using assessment tools to identify caregiver needs and approximately 63.7% had supportive care services available to caregivers. Caregiver identification was more common in sites affiliated with a critical access hospital (odds ratio [OR], 2.44; P = .013), and assessments were less common in safety-net practices (OR, 0.41; P = .013). Supportive care services were more commonly available in the Western region of the United States, in practices with inpatient services (OR, 2.96; P = .012), and in practices affiliated with a critical access hospital (OR, 3.31; P = .010). Conclusions Although many practice groups provide supportive care services, fewer than one-half systematically identify and document informal cancer caregivers. Expanding fundamental engagement practices such as caregiver identification, assessment, and service provision will be critical to support recent calls to improve caregivers' well-being and skills to perform caregiving tasks.
The young triathlete with brain metastases has rapidly become debilitated. But his wife, a cancer survivor, has a sagelike calm, born in part of experience volunteering with dying children. Her husband — and his oncologist — are fortunate to have such a caregiver.
Objective: To describe caregiver and patient characteristics that are associated with negative and positive reactions in family caregivers (FCs) of cancer outpatients. Methods: A total of 194 FCs completed the Caregiver Reaction Assessment (CRA) scale 6 months after start of new treatment in patients with breast, ovarian, colorectal, or head and neck cancer. Linear regression models were used to examine which caregiver characteristics (i.e. demographic, self‐efficacy and social support) and patient characteristics (i.e. clinical, symptoms) were associated with each of the CRA subscales (caregiver esteem, lack of family support, and impact on health, schedule and finances). Results: Less social support was significantly associated with poorer scores on all subscales (B −0.01/0.01). Also, poorer scores on one or more of the CRA subscales were reported by FCs who had lower self‐efficacy (B −0.02), a higher level of education (primary B 0.42, secondary B 0.22), more medical conditions (B 0.06), and were female (B 0.20), and by FCs of patients with colorectal (B 0.45) or head and neck cancer (B 0.27), and those who reported a higher symptom burden (B 0.28/0.49). Conclusion: Both caregiver and patient factors were associated with reactions in FCs of cancer outpatients. This information can be used by healthcare personnel to identify FCs who need additional support (e.g. counselling), and to increase focus on strengths and assets within the caregivers (e.g. support groups).
Background: Cancer is a devastating and debilitating chronic disease that affects both patients and family members. Available evidence has confirmed that the care of chronically ill relatives by family members can be very challenging. This is because caregiving of cancer patients often presents a high level of burden on the caregivers. Consequently, this leads to a necessity to adopt coping mechanisms to cushion the effect of the burden experienced during caregiving.; Aim: To determine the burden experienced and coping strategies among caregivers of advanced cancer patients attending University of Calabar Teaching Hospital (UCTH), Cross River State, Nigeria.; Methods: The study adopted a descriptive cross-sectional study design and the study population included informal family caregivers providing services to histologically diagnosed advanced cancer patients receiving treatment at the UCTH at the time of this survey. A researcher-developed structured questionnaire, a 22-item standardized validated Zarit Burden Interview (ZBI) and a modified 17-item Coping Orientation to Problems Experienced (COPE) Inventory were used to collect data from 250 eligible informal caregivers who were selected with regard to caregiver's characteristics, caregivers' level of burden and caregiver's coping strategies, respectively. Data gathered from the respondents were collated, coded and analyzed using Statistical Package for Social Sciences (SPSS version 24.0) software and Predictive Analytical Software (PAS version 19.0). Chi-square was used to test for association between categorical variables at the 0.05 level of significance. The results are presented in tables and charts.; Results: The respondents consisted of more females 132 (62.86%) than males 78 (37.14%). The majority of respondents (46.2%) were aged between 31-50 years with a mean age of 35.9 ± 18.1 years. The assessment of burden level revealed that 97 caregivers (46.19%) experienced severe burden, 37 (17.62%) experienced trivial or no burden, while 76 (36.2%) perceived moderate burden. The coping strategies used by caregivers to ease the level of burden experienced during caregiving included; acceptance, reprioritization, appreciation, family, positive self-view and empathy. Also, it was documented that there was a strong association between caregivers' level of burden and coping strategies ( P = 0.030). Findings also showed that age ( P = 0.000), sex ( P = 0.000), educational status ( P = 0.000), functional ability ( P = 0.000), duration of care ( P = 0.000), desire to continue caregiving ( P = 0.000) and type of cancer ( P = 0.000) were statistically significantly associated with caregivers' coping strategies.; Conclusion: There is great recognition of the role of informal caregivers in improving the health of their relatives and family members who are chronically ill. It was recommended that support groups in collaboration with health care providers should organize a symposium for informal caregivers on the intricacies of caregiving in chronically ill patients. This would create a platform for experience sharing, information dissemination and health care professional-caregiver interaction to enhance positive caregiving outcomes.
Purpose: Family members are a part of the team to improve the outcomes of the person with cancer. Families require support and information to optimise their care, however, their needs are often unacknowledged and within clinical areas there is a lack of family focused interventions. Studies highlight families' needs but lack a family representation. The aim was to explore research with family as the unit-of-care during cancer treatment. Method: The Pickering systematic quantitative literature review method; a 15-step process from searching, database development and analysis was followed. Research published 2008-2019 within databases: MEDLINE, SCOPUS, PsycINFO, Cochrane, CINAHL; key words, 'family* or caregiver*, and cancer*, neoplasm* and coping*, distress* in November 2019. Quality assessment completed using Mixed Methods Appraisal Tool, descriptive quantitative analysis and thematic analysis. Results: Studies involving patients and family members were included in the review (N = 73). The analysis identified participants had a mean age of 58 years and primarily lung, breast or prostate cancer. Over 80% were from America and European countries; 93% had a dyad sample, quantitative studies (76%). There was eight intervention studies between four to sixteen weeks long, focused on family wellbeing. Themes described the impact of cancer on the whole family, the importance of communication between family members, and resources for family members. Conclusion: The review identified four main scales and optimum intervention styles. Family research in the adult cancer needs to focus on intervention studies, increase international focus and inclusion of other family members such as children, friends and older adults.
Objective: To describe how young adult cancer caregivers (YACC) use social media for social support during a cancer experience. Methods: Eligible YACC were 18 to 39 years, used Facebook and/or Instagram at least once per week, and cared for an adult cancer patient diagnosed 6 months to 5 years prior (N = 34). Recruitment of a cross-sectional sample occurred through oncology clinics in Utah and online advertising by caregiving and cancer organizations from September 2017 to June 2018. Semi-structured telephone interviews were recorded, transcribed, iteratively coded, and qualitatively analyzed, yielding four categories concerning how YACC use social media. Results: Caregivers were most commonly spouses aged 29 years on average (range 21-38); cancer patients were 37 years (range 19-76). Analysis yielded four distinct yet related categories: Category 1: Posting about cancer on social media often begins as a strategy for YACC to efficiently provide updates about the cancer patient. Category 2: Caregivers who actively post on social media experience a variety of different functional social supports to which they otherwise would not have access. Category 3: Posting about cancer online presents an opportunity for negative consequences. Category 4: Potential for negative consequences influences how some caregivers use social media. Conclusions: Supportive services, including social media-based supports, are needed for YACC in formats that are convenient for them as they balance their caretaking duties with their daily lives.
Objectives Describe the psychosocial impact of being a cancer survivor caring for a spouse with an advanced cancer diagnosis. Compare the psychosocial outcomes of those experiencing dual roles of cancer survivor and cancer family caregiver. Importance. As early detection and treatment improves, more people become cancer survivors, making it increasingly common that survivors eventually care for a spouse also diagnosed with cancer. Understanding these relationships is crucial to understanding patient-caregiver dynamics. Objective(s). Describe the impact of advanced cancer caregivers' personal history of cancer on their own and the patients' psychosocial outcomes using quantitative and qualitative methods. Method(s). Eighty-eight advanced cancer patients and their spouse caregivers completed questionnaires. Caregivers also completed a brief qualitative interview about coping strategies. Data from dyads including caregivers with and without a personal history of cancer were compared. Results. Eleven caregivers were cancer survivors. These caregivers were mostly white (n¼10), 64 years old on average, and married for 30 years (SD¼9.32). There were no significant differences in demographics, anxiety, or depression between survivors and non-survivors. Survivors reported higher preparedness for caregiving than non-survivors (t¼2.479, p¼.01). Patients whose caregivers were survivors reported higher depression symptoms than patients whose caregivers were not survivors (B¼2.371, SE¼1.009, t¼2.349, p¼.021). During interviews, only 3 survivor caregivers referenced their own cancer. Survivor caregivers did, however, report drawing upon shared cancer experiences from other family members and support groups as a coping strategy. Conclusion(s). Caregivers' personal cancer history may give them tools to prepare for caring for a spouse with cancer. However, they may prefer to focus on the patient rather than their own past experiences. Patients with a survivor caregiver may report higher levels of depression because of their own prior experience with cancer as a caregiver. Caregivers also reported not speaking with the patient about their own cancer experience, suggesting avoidance and/or a desire to avoid upsetting the patient by bringing up their own concerns. Impact. Cancer survivorship may impact caregiving for others with a cancer diagnosis. More research is needed to understand this relationship.
Cancer is a disease that impacts not only the patient but also affects the entire family. Family members experience high levels of distress. Therefore, screening for cancer-specific distress among family members of people with cancer is important but relatively unexplored. This cross-sectional study aims to analyze the psychometric properties of a screening tool for family members of people with cancer. We examined the usefulness of the emotional thermometers burden version (ET-BV) in detecting caregiver emotional distress. The ET-BV is a simple multidomain visual analogue scale distributed in two major domains: "emotional upset" and "impact." A total of 364 cancer patients' family members completed the ET-BV and Brief Symptom Inventory. Analyses were aimed to examine the diagnostic accuracy (receiver operating characteristic) of the ET-BV. A fair to good diagnostic accuracy was achieved for ET-BV. For emotional upset thermometers, a cutoff of ≥5 was determined and for impact thermometers, a cutoff of ≥4 was established. ET-BV seems to be a useful, quick, and simple tool for distress screening in family members of people with cancer. A revision of a specific thermometer is discussed in order to increase ET screening performance and clinical utility.
This study aim to explore how adult patients admitted to an oncology ward experience video-consulted rounds with caregivers as a mean for family involvement. The methodological framework for the study was Interpretative phenomenological analysis. Participant observations during video-consulted rounds and semi-structured interviews were conducted between November 2018 and March 2019 at the Department of Oncology, Odense University Hospital, Denmark. 15 patients participated in the study. Overall, patients experienced video-consulted rounds as a satisfactory way of involving their families in rounds while also creating a sense of presence and comfort. Appropriate positioning of stakeholders could influence the experience of virtual rounds. Limitations included the lack of physical care from caregivers, specifically when patients discussed serious matters with health care professionals. Furthermore, patients experienced challenges in reading body language when communicating virtually with their families. The study provides important knowledge regarding patients' experiences with video-consulted rounds with caregivers. In concordance with patients' experiences, video-consulted rounds can offer a family centered way to involve caregivers in patient rounds. However, there should be awareness in regard to how the technology is used and to which context it is applied. • Caregivers involvement in patient rounds is pivotal, yet challenged. • Video consulted rounds with caregivers is valued by patients with cancer. • Video consulted rounds offer a family centered approach in patient care. • Reflected use of the video technology is required for optimum use.
Background: Inadequately managed pain is a serious problem for patients with cancer and those who care for them. Smart health systems can help with remote symptom monitoring and management, but they must be designed with meaningful end-user input.; Objective: This study aims to understand the experience of managing cancer pain at home from the perspective of both patients and family caregivers to inform design of the Behavioral and Environmental Sensing and Intervention for Cancer (BESI-C) smart health system.; Methods: This was a descriptive pilot study using a multimethod approach. Dyads of patients with cancer and difficult pain and their primary family caregivers were recruited from an outpatient oncology clinic. The participant interviews consisted of (1) open-ended questions to explore the overall experience of cancer pain at home, (2) ranking of variables on a Likert-type scale (0, no impact; 5, most impact) that may influence cancer pain at home, and (3) feedback regarding BESI-C system prototypes. Qualitative data were analyzed using a descriptive approach to identity patterns and key themes. Quantitative data were analyzed using SPSS; basic descriptive statistics and independent sample t tests were run.; Results: Our sample (n=22; 10 patient-caregiver dyads and 2 patients) uniformly described the experience of managing cancer pain at home as stressful and difficult. Key themes included (1) unpredictability of pain episodes; (2) impact of pain on daily life, especially the negative impact on sleep, activity, and social interactions; and (3) concerns regarding medications. Overall, taking pain medication was rated as the category with the highest impact on a patient's pain (=4.79), followed by the categories of wellness (=3.60; sleep quality and quantity, physical activity, mood and oral intake) and interaction (=2.69; busyness of home, social or interpersonal interactions, physical closeness or proximity to others, and emotional closeness and connection to others). The category related to environmental factors (temperature, humidity, noise, and light) was rated with the lowest overall impact (=2.51). Patients and family caregivers expressed receptivity to the concept of BESI-C and reported a preference for using a wearable sensor (smart watch) to capture data related to the abrupt onset of difficult cancer pain.; Conclusions: Smart health systems to support cancer pain management should (1) account for the experience of both the patient and the caregiver, (2) prioritize passive monitoring of physiological and environmental variables to reduce burden, and (3) include functionality that can monitor and track medication intake and efficacy; wellness variables, such as sleep quality and quantity, physical activity, mood, and oral intake; and levels of social interaction and engagement. Systems must consider privacy and data sharing concerns and incorporate feasible strategies to capture and characterize rapid-onset symptoms.
Aims To review the characteristics and effectiveness of psychosocial interventions on quality of life of adult people with cancer and their family caregivers. Design A systematic review using PRISMA guidelines. Methods Seven databases were searched from 2009–2019 using key terms. Included studies were assessed using the Quality Assessment Tool for Quantitative Studies. Results 1909 studies were retrieved with 12 studies included, involving 3,390 patients/caregivers. Interventions aimed to improve communication, behaviour change and setting short‐term goals. Duration of interventions varied from 4–17 weeks. Highest benefit was gained from telephone interventions. Interventions based on interpersonal counselling appeared more effective than other approaches. Studies predominantly focused on psychological, physical and social domains of quality of life. Spiritual well‐being received relatively little attention. A paradigm shift is needed to develop psychosocial interventions that incorporate spiritual well‐being. More research is needed in developing countries.
Objective: To examine the characteristics of interventions to support family caregivers of patients with advanced cancer. Methods: Five databases (CINAHL, Medline, PsycINFO, Web of Science, and the Cochrane Library) were searched for English language articles of intervention studies utilizing randomized controlled trials or quasi-experimental designs, reporting caregiver-related outcomes of interventions for family caregivers caring for patients with advanced cancer at home. Results: A total of 11 studies met the inclusion criteria. Based on these studies, the types of interventions were categorized into psychosocial, educational, or both. The characteristics of interventions varied. Most interventions demonstrated statistically significant results of reducing psychological distress and caregiving burden and improving quality of life, self-efficacy, and competence for caregiving. However, there was inconsistency in the use of measures. Conclusions: Most studies showed positive effects of the interventions on caregiver-specific outcomes, yet direct comparisons of the effectiveness were limited. There is a lack of research aimed to support family caregivers' physical health. Practice Implications: Given caregivers' needs to maintain their wellbeing and the positive effects of support for them, research examining long-term efficacy of interventions and measuring objective health outcomes with rigorous quality of studies is still needed for better outcomes for family caregivers of patients with advanced cancer.
Background: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs. Methods: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records. Results: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs. Conclusion: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.
Intimate partners and other informal caregivers provide unpaid tangible, emotional, and decision-making support for patients with cancer, but relatively little research has investigated the cancer experiences of sexual minority women (SMW) with cancer and their partners/caregivers. This review addressed 4 central questions: 1) What social support do SMW with cancer receive from partners/caregivers? 2) What effect does cancer have on intimate partnerships or caregiving relationships of SMW with cancer? 3) What effects does cancer have on partners/caregivers of SMW with cancer? 4) What interventions exist to support partners/caregivers of SMW or to strengthen the patient-caregiver relationship? This systematic review, conducted in 2018 and updated in 2020, was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Two independent coders screened abstracts and articles. In total, 550 unique records were screened; 42 articles were assessed for eligibility, and 18 were included in a qualitative synthesis. Most studies were U.S.-based, involved breast cancer, included intimate partners, had primarily white/Caucasian samples, and were cross-sectional. Sexual minority female participants reported that partners/caregivers often provide important social support, including emotional support, decision-making support, and tangible support. Effects of cancer on relationships with partners/caregivers were mixed, with some studies finding relationships remained stable and others finding cancer either increased closeness or disrupted relationships. Participants reported partners/caregivers often experience distress and may experience discrimination, discomfort disclosing sexual orientation, and a lack of sexual minority-friendly services. No studies involved an intervention targeting partners/caregivers or the dyadic relationship. More work is needed to understand SMW with cancers other than breast cancer, and future work should include more racially, ethnically, and economically diverse samples. Longitudinal research will allow an examination of patterns of mutual influence and change in relationships. These steps will enable the development of interventions to support SMW with cancer and people close to them. • This review synthesized 18 articles about sexual minority women and cancer. • Partners/caregivers often provide crucial social support to sexual minority women. • Effects of cancer on relationships with partners/caregivers were mixed. • Partners/caregivers may experience distress and discrimination. • More work is needed in diverse samples and in cancers other than breast cancer.
Spirituality is a critical resource for family caregivers of patients with cancer. However, studies on spirituality are hampered because measures of spirituality lack consistency and have not been validated in cancer caregivers. This study examined the validity of the Spiritual Perspective Scale (SPS) among cancer caregivers and explored whether measurement bias may influence differences in spirituality across caregiver and patient characteristics. In this secondary analysis, 124 caregivers of cancer patients were used to evaluate the validity of the 10‐item SPS. A multiple indicators multiple causes model was applied to explore differences in the association between a latent spirituality factor and characteristics of caregivers and patients. Overall reliability of the SPS was adequate (Cronbach's α =.95). The SPS scores were predictive of higher meaning and purpose (r =.32, p =.004) and lower depression (r = −.22, p =.046) at 3‐month follow‐up. Construct validity of the SPS with a single‐factor structure was supported in cancer caregivers. Adjusting for a direct effect of race did not alter the pattern of results, and caregivers who were older, female, ethnic minorities, less‐educated, affiliated with a religion, and who provided care to another individual in addition to the patient had greater levels of spirituality. This study provides evidence for psychometric validation of the SPS in cancer caregivers. Understanding differences in caregivers' spirituality by using the SPS with psychometrically acceptable properties and minimal measurement bias deserves more attention to optimize spirituality assessment and support in cancer caregiving.
Background: The prognosis of patients with brain tumors is widely varying. Psychooncologic need and depression are high among these patients and their family caregivers. However, the need for counselling and need for referral to psychooncology care is often underestimated.; Methods: We performed a single-institution cross-sectional study to evaluate psychooncologic need, depression and information need in both patients and their family caregivers. The Hornheider Screening Instrument (HSI) and the Patient Health Questionnaire (PHQ-9) were used to evaluate psychooncologic need and depression, and a study-specific questionnaire was developed to evaluate information need. Multivariable analyses were performed to detect correlations.; Results: A total of 444 patients and their family caregivers were approached to participate, with a survey completion rate of 35.4%. More than half of the patients and family caregivers were in need for referral to psychooncology care and 31.9% of patients suffered from clinically relevant depression. In multivariable analysis, psychooncologic need were positively associated with mild (odds ratio, OR, 7.077; 95% confidence interval, CI, 2.263-22.137; p = 0.001) or moderate to severe (OR 149.27, 95% CI 26.690-737.20; p < 0.001) depression. Patient information need was associated with depression (OR 3.007, 95% CI 1.175-7.695; p = 0.022).; Conclusions: Unmet counselling need in brain tumor patients and their family caregivers associate to high psychooncologic need and depression. Adequate information may decrease the need for referral to psychooncology care and treatment of depression in these patients. Future studies should further explore these relations to promote development of supportive structures.
Purpose of Review: Cancer impacts the whole family and relational system, not just the individual with the diagnosis. The present article identifies and reviews publications in the field of family therapy and cancer since 2019, to describe the theoretical models and techniques applied, and the outcomes achieved.; Recent Findings: A search of databases and grey literature led to the identification of five articles from four studies. Four papers described primary research and one summarized a case example. Papers were published by teams in the USA, Sweden and Iceland. Each article described the benefits of adopting a family therapy approach on outcomes such as family communication, bereavement and decreased carer burden. Four papers described specialist family therapists delivering the interventions, and one used oncology nurses drawing on the theories and techniques of family therapy.; Summary: The rarity of family therapy publications in the past year reflects the individual-level approach to cancer which permeates both medicine and talking therapies. The utility of family therapy could be further surfaced through more large-scale studies which thoroughly describe the unique theoretical basis and techniques, alongside outcomes for multiple people within the family system.
Background: Despite the risk for developing mental disorders, most of advanced cancer patients' family caregivers undergo a resilient process throughout the caregiving period. Research on resilience in caregivers of advanced cancer patients is scarce and further hindered by the lack of a univocal definition and a theoretical framework.; Objectives: To provide clarity on the concept of resilience by proposing an integrative view that can support health care professionals and researchers in conducting and interpreting research on resilience.; Methods: The review process was inspired by the hermeneutic methodology: a cyclic review process, consisting of repeated searching and analysing until data saturation is reached and focussed on achieving a deeper understanding of ill-defined concepts. The definitions from eighteen reviews on resilience and the theoretical frameworks from eight concept analyses were analysed. The composing elements of resilience were listed and compared.; Results: The American Psychological Association's definition of resilience and Bonanno's theoretical framework are suggested to guide further research on resilience. Moreover, four knowledge gaps were uncovered: (1) How do resilience resources interact? (2) What are the key predictors for a resilient trajectory? (3) How do the resilient trajectories evolve across the caregiving period? And (4) how does the patient's nearing death influence the caregiver's resilience?; Conclusion: To address flaws in conceptualisation and the resulting gaps in knowledge, we suggest a definition and a theoretical framework that are suited to allow heterogeneity in the field, but enables the development of sound interventions, as well as facilitate the interpretation of intervention effectiveness.
Family caregivers are critical sources of support to cancer survivors, but they also need to cope with the distress brought by the caregiving process. This study ascertained the resilience levels of the family caregivers of cancer survivors and then examined the relations between resilience, caregiver burden, and quality of life. This descriptive cross-sectional study was conducted between June and October 2019. The participants were recruited from the oncology ward of a hospital in Turkey. The Connor-Davidson Resilience Scale, Zarit Burden Interview, and Caregiver Quality of Life Index- Cancer were used to collect data from 210 family caregivers of cancer survivors. The caregivers reported low levels of resilience (49.63 ± 16.30, range = 0–100), which we found to be associated with great caregiver burden (range = −0.39 to −0.63, all P < 0.01 or 0.05) and poor quality of life (range = 0.31–0.75, all P < 0.01 or 0.05). The findings showed that resilience negatively mediated the caregiver burden (β = 0.203; 95% CI, - 0.374–0.018) and positively predicted the QoL (β = 0.431; 95% CI, 0.683–0.207). The total effects of CDRS on burden and QoL were 0.203 (CI = - 0.374–0.018) and 0.431 (CI = - 0.683–0.207) respectively. The present findings underscore the direct and indirect predicting role of resilience on QoL and caregiver burden. The family caregivers reported low levels of resilience, which in turn was associated with greater caregiver burden and poorer QoL. • The findings underscore the significant influence of resilience on caregiver burden and quality of life. • The findings clearly show that resilience is a significant contributor to the quality of life and caregiver burden of FCs. • FCs reported low levels of resilience, which in turn was associated with greater caregiver burden and poorer quality of life.
Objectives: This study aimed to assess the relationship between sociodemographic, clinical, and psychological variables with quality of life (QoL) and the moderating role of caregivers' age and caregiving duration in caregivers of patients with Multiple Myeloma. Method: The sample included 118 caregivers who completed questionnaires that assessed psychological morbidity, satisfaction with social support, coping, burden, unmet needs, and QoL. Results: High psychological morbidity, burden and information, financial and emotional unmet needs were associated with lower QoL, while higher satisfaction with social support and more effective use of coping strategies were associated with better QoL. Women caregivers reported more satisfaction with social support and those who did not choose to care reported greater financial unmet needs and more use of coping strategies. The relationship between caregivers' psychological morbidity/social support and QoL was mediated by emotional needs and double mediated by coping and burden. The caregivers' age moderated the relationship between psychological morbidity/social support and emotional needs. Conclusion: Interventions to support the caregiver's emotional needs to promote their QoL are needed. These should be particularly tailored for older caregivers reporting greater psychological morbidity and younger caregivers less satisfied with their social support, as they have a negative indirect impact on their QoL.
The cancer caregiving experience is multifaceted and dynamic across different phases of the cancer care continuum. This longitudinal study examined the trajectories of CQOL and caregiver emotional distress across the first year post-diagnosis. Participants were 111 caregivers of newly diagnosed patients who completed baseline, 6-month, and 12-month follow-ups. Trajectories of CQOL, CQOL domains, caregiver depression, anxiety, and stress, were estimated using linear and quadratic mixed models. The trajectory of overall CQOL followed an inverse U-shape trend, while caregiver depression, anxiety, and stress remained stable. For CQOL domains, physical/practical needs followed a gradual trend of improvement, while social support followed an inverse U-shape trend; caregiver burden, emotional reactivity, and responsibility/duty remained stable. The multidimensional needs of caregivers of newly diagnosed patients appeared to follow different trajectories across the first year post-diagnosis. While most CQOL domains remained stable, caregivers may experience adjustment difficulties in terms of relational concerns and social support.
Background: Cancer has a major impact on the lives of family caregivers, including their health and quality of life (QOL). However, little is known about the QOL of family caregivers of adult cancer patients in Ethiopia. This study aimed to assess the QOL and associated factors among primary family caregivers of adult cancer patients in Addis Ababa, Ethiopia.; Methods: In this cross-sectional study, 291 family caregivers completed the survey in the Amharic language. The Caregiver Quality of Life Index-Cancer (CQOLC) was used to measure QOL of family caregivers. Descriptive and linear regression analyses were conducted using SPSS version 23.; Results: The mean age of the family caregivers was 37.04±11.47 years and 51.5% were male. The mean score of QOL was 82.23 (±16.21). Not being employed in private sector ( β = -0.128; CI=-7.82, -0.45; p = 0.028), having family monthly income less than 16 USD ( β = 0.132; CI=0.87, 10.88; p = 0.021) and not having family monthly income greater than 64 USD ( β = -0.128; CI= -10.43, -0.66; p = 0.026), being spouse ( β = 0.179; CI: 1.34, 11.99; p = 0.019) and not residing in urban areas ( β = -0.139; CI: -10.53, -0.96; p = 0.019) were negatively associated with the QOL of the family caregiver and explained 8.7% of the variation ( R 2 =0.087; p =0.000).; Conclusion: Our findings identified factors such as occupation, income, relationship with the patient, and place of residence that negatively associated with the QOL of family caregivers. Targeted interventions such as social and economic support and bringing the care to the patient's residence place are needed to improve the QOL of family caregivers of adult cancer patients.
PURPOSE: Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era. METHODS: This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes. RESULTS: Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8%, were predominantly women; 10 of 13 (76.9%) were educated, 10 of 13 (76.9%) had graduated from college; and of modest means, six of 13 (46.2%) had household incomes < $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self-care. CONCLUSION: This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just-in-time information availability or dedicated caregiver check-ins may provide relief within the stress of caregiving.
Purpose of Review: Informal caregivers of individuals affected by cancer undertake a range of activities and responsibilities throughout the course of the cancer care trajectory. This role is often undertaken alongside employment and other caring roles and can contribute to caregiver burden, which may be ameliorated through psychosocial intervention.; Recent Findings: Fifteen new studies investigating the potential of psychosocial interventions for reducing caregiver burden were identified from the period January 2019 to February 2020. Studies were mostly quasi-experimental or randomised controlled trials (RCTs). Psychoeducation was the main intervention identified, though content varied, psychoeducation was associated with improvements in burden, quality of life (QoL) domains and psychological symptoms for caregivers. A small number of counselling/therapeutic interventions suggest that caregivers supporting patients with advanced cancer or cancers with high symptom burden may experience reduced psychological symptoms and QoL benefits. There was a paucity of evidence for other psychosocial interventions (e.g. mindfulness, acceptance and commitment therapy) and methodological quality was variable across all intervention types.; Summary: Psychosocial interventions may help to reduce burden for informal caregivers of individuals affected by cancer, though there remains a need for rigorously designed, multicentred RCTs and to examine the long-term impact of psychosocial interventions for caregivers.
Objectives: While both patients and informal caregivers report high levels of cancer-related distress, supportive care needs of relatives are often not taken into account and little is known about mutual perception of distress within couples. Therefore, we aimed to investigate distress in female patients with breast cancer and their male partners as well as supportive care needs in partners.; Methods: In this cross-sectional study, we recruited women with breast cancer during primary cancer care and their male partners, obtained information on mental distress and supportive care needs through visual analog scales for four mood domains and the Short Form of Supportive Care Needs Survey (SCNS-SF34).; Results: Among 250 eligible patients with breast cancer, 102 patients (40.8%) and their male partners participated. Partners reported higher levels of distress ( p = 0.02), whereas patients (self-assessment) indicated stronger needs for help ( p < 0.001). Men with higher levels of distress were younger ( p < 0.001), and reported a shorter relationship duration ( p = 0.001) compared to partners with lower distress. Partners overestimated distress, anxiety, depression, and need for help in the patient. Patients overestimated partners need for help. The majority of partners (78%) reported at least one unmet need, most frequently related to the health system and information domain.; Conclusion: A systematic distress and needs assessment for women with breast cancer and their male partners is mandatory. The provision of optimal supportive care depends on protocols that include not only psychosocial care for patients but also procedures for managing distress and needs for partners including individual and couple-based interventions.
Purpose: This study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input. Methods: We made minor wording modifications to the Patient FACT-G to enable caregivers to report how the illness affected their overall quality of life (QOL) and well-being on four subscales (physical, social, emotional, functional). We tested the acceptability, precision, factor structure, reliability and validity of the Caregiver FACT-G among partners of prostate cancer patients (N = 263) and caregivers (spouses, siblings, adult children) of patients with advanced cancer (breast, lung, colorectal, prostate) (N = 484) using data from two Randomized Clinical Trials (RCTs). Results: With a factor structure similar to the Patient FACT-G, Caregiver FACT-G was acceptable and precise in measuring caregiver QOL, with high inter-factor correlations and internal consistency reliability (Cronbach's alphas 0.81–0.91). The Caregiver FACT-G had strong convergent validity demonstrated by significant positive correlations with caregiver self-efficacy (0.25–0.63), dyadic communication (0.18–0.51), and social support (0.18–0.54) in both samples. It also had strong discriminant validity evidenced by significant inverse correlations with negative appraisal of caregiving (− 0.37 to − 0.69), uncertainty (− 0.28 to − 0.53), hopelessness (− 0.25 to − 0.60), and avoidant coping (− 0.26 to − 0.58) in both samples. Caregivers' baseline FACT-G scores were significantly associated with their physical (0.23) and mental well-being (0.54; 4-month follow-up) and their depression (− 0.69; 3-month follow-up), indicating strong predictive validity. Conclusion: This is the first study evaluating the psychometric properties of the Caregiver FACT-G. More psychometric testing is warranted, especially among caregivers of diverse sociocultural backgrounds.
Background: Older adults undergoing cancer surgery are at greater risk for poor postoperative outcomes. Caregivers also endure significant burden. Participation in perioperative physical activity may improve physical functioning and enhance overall well-being for both patients and caregivers. In this study, we assessed the feasibility of a personalized telehealth intervention to enhance physical activity for older (≥ 65 years) gastrointestinal (GI) and lung cancer surgery patients/caregivers. Methods: Participants completed four telehealth sessions with physical therapy/occupational therapy (PT/OT) before surgery and up to 2 weeks post-discharge. Outcomes included preop geriatric assessment, functional measures, and validated measures for symptoms and psychological distress. Pre/post-intervention trends/trajectories for outcomes were explored. Results: Thirty-four patient/caregiver dyads (16, GI; 18, lung) were included. Accrual rate was 76% over 8 months; retention rate was 88% over 2 months. Median for postop of a 6-min walk test, timed up and go, and short physical performance battery test scores improved from baseline to postop. Participant satisfaction scores were high. Conclusion: Our conceptually based, personalized, multimodal, telehealth perioperative physical activity intervention for older patient/caregiver dyads is feasible and acceptable. It offers an opportunity to improve postoperative outcomes by promoting functional recovery through telehealth, behavior change, and self-monitoring approaches. Trial Registration: ClinicalTrials.gov Identifier: NCT03267524.
Background: Few studies have engaged patients and caregivers in interventions to alleviate financial hardship. We collaborated with Consumer Education and Training Services (CENTS), Patient Advocate Foundation (PAF), and Family Reach (FR) to assess the feasibility of enrolling patient-caregiver dyads in a program that provides financial counseling, insurance navigation, and assistance with medical and cost of living expenses.; Methods: Patients with solid tumors aged ≥18 years and their primary caregiver received a financial education video, monthly contact with a CENTS counselor and PAF case manager for 6 months, and referral to FR for help with unpaid cost of living bills (eg, transportation or housing). Patient financial hardship and caregiver burden were measured using the Comprehensive Score for Financial Toxicity-Patient-Reported Outcomes (COST-PRO) and Caregiver Strain Index (CSI) measures, respectively, at baseline and follow-up.; Results: Thirty patients (median age, 59.5 years; 40% commercially insured) and 18 caregivers (67% spouses) consented (78% dyad participation rate). Many participants faced cancer-related financial hardships prior to enrollment, such as work change or loss (45% of patients; 39% of caregivers) and debt (64% of patients); 39% of caregivers reported high levels of financial burden at enrollment. Subjects received $11,000 in assistance (mean, $772 per household); 66% of subjects with income ≤$50,000 received cost-of-living assistance. COST-PRO and CSI scores did not change significantly.; Conclusions: Patient-caregiver dyads were willing to participate in a financial navigation program that addresses various financial issues, particularly cost of living expenses in lower income participants. Future work should address financial concerns at diagnosis and determine whether doing so improves patient and caregiver outcomes.
Background: Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long‐term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated. Methods: Family cancer caregivers completed prospective, longitudinal surveys 2, 5, and 8 years after diagnosis (n = 633). Early caregiving characteristics and demographics were measured at 2 years. Caregiver status (former caregivers–remission, current caregivers, and bereaved caregivers) and unmet needs were measured at 3 assessments. Results: Caregivers' unmet needs at 8 years were attributable to the passages of the caregiving status as their patients' illness trajectory diverged from the initial state of receiving care. Specifically, either prolonged caregiving or having a break from caregiving followed by bereavement during long‐term survivorship was related to various domains of unmet needs at 8 years (t > 2.35, P <.02). Early perceived caregiving stress also predicted all domains of unmet needs at 8 years (t > 2.50, P <.02). Unmet needs at 8 years were the highest across the 3 assessment time points (F > 37.51, P <.001). Conclusions: The caregiving status trajectory over 8 years was a substantial predictor of family caregivers' unmet needs at the 8‐year mark. Findings provide guidance for the development of evidence‐based programs and patient/caregiver‐centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their patients. Caregivers' unmet needs are attributable to the caregiving status over 8 years as their patients' illness trajectory diverges from receiving care. Findings provide guidance for the development of evidence‐based programs and patient/caregiver‐centered care policies to reduce the unmet needs of family caregivers, which reflect the diverse trajectories of cancer caregivership, many years after the diagnosis of their relatives.
This pilot study aimed to assess the feasibility and possible effects of the "PalliActive Caregivers," nursing intervention, on the uncertainty in illness and quality of life of family caregivers of patients with cancer receiving palliative care. This pilot study used a randomized controlled design. The participants were 80 family caregivers. The experimental group received the novel "PalliActive Caregivers" intervention. Data were collected using a sociodemographic form, the Uncertainty in Illness Scale, the Quality of Life scale, and an Intervention satisfaction questionnaire. The caregivers who received the intervention "PalliActive Caregivers" reported a high degree of satisfaction (9.74 on a 10-point scale). The intervention showed a significant decrease in uncertainty regarding illness in the experimental group (P = .009), as well as a significant decrease in the psychological well-being of quality of life within the experimental and control groups, before and after the intervention (P = .013, P = .010). It is recommended that future studies using the "PalliActive Caregivers" intervention examine the effects on other variables such as the burden of patient's symptoms, caregiver burden and rewards, self-efficacy in symptom management, competence, unmet needs, and satisfaction with care.
Background Education plays an important role in cancer symptom management for patients and their families. With the advancement of information and communication technology, there may be additional evidence for the use of mobile apps to support patient and family education. Purpose The purpose of this review was to explore and synthesize scientific literature about cancer symptom management mobile apps that can be used by patients and their families. Methods This review adopted a scoping review study framework, using electronic databases including EBSCO, PubMed, ProQuest, Science Direct, and Google Scholar using search keywords: ‘caregiver family’, ‘mobile application’, ‘symptom management’ and ‘palliative care’. Of a total of 2633 papers found, 11 papers were selected. Findings Assessment tools are a major co