"Being an informal caregiver - strengthening resources": mixed methods evaluation of a psychoeducational intervention supporting informal caregivers in palliative care.

BACKGROUND: Informal caregivers are key support for patients with progressive incurable diseases. However, their own needs often remain unmet. Therefore, we developed, manualised and implemented the intervention "Being an informal caregiver - strengthening resources" aiming to support and empower informal caregivers by addressing relevant information-related, physical, psychological and social needs. METHODS: In this pilot study, we evaluated the acceptance and experiences with this psychoeducational intervention. The study was conducted over two years (2019-2021). Informal caregivers were recruited from the University Medical Centre Hamburg-Eppendorf and the metropolitan region of Hamburg, Germany. The intervention was aimed at adult persons who identified themselves as an informal caregiver to an adult patient with a progressive incurable cancer and non-cancer disease. For the evaluation we used a mixed methods approach, combining a longitudinal questionnaire survey (pre-intervention, after each module, 3-months follow-up) and semi-structured interviews post-intervention. Quantitative data were analysed using descriptive statistics and a paired t-Test, interviews were analysed based on the qualitative content analysis according to Mayring. Results were triangulated using a convergent triangulation design. RESULTS: Of 31 informal caregivers who received the intervention, 25 returned the follow-up questionnaire and 20 informal caregivers were interviewed. Triangulated results showed a high satisfaction with the implementation of the intervention. Of a broad range of subjective benefits, gaining knowledge, self-awareness and self-efficacy were most apparent. Informal caregivers reported improved preparedness, awareness of own needs as well as confidence regarding handling own emotions and interacting with the ill person. However, implementing the learned skills into daily life can be challenging due to internal and external factors. Motivations and challenges for participating as well as potential for improvement were identified. CONCLUSIONS: This pilot study showed an overall positive evaluation and several subjective benefits of the psychoeducational intervention "Being an informal caregiver - strengthening resources". Further research is needed to measure the efficacy of this intervention on informal caregivers' outcomes. Therefore, a multicentre randomized prospective study is planned.

Development and validation of a patient reported experience measure for experimental cancer medicines (PREM-ECM) and their carers (PREM-ECM-Carer).

BACKGROUND: Our aim was to develop a validated Patient Reported Experience Measure (PREM) to capture patient and carer experience during participation in experimental cancer medicine trials (ECM): called PREM-ECM. METHODS: Mixed method design, consisting of four stages. Questionnaire items were produced for both patients and carers using interviews, focus groups, and cognitive interviews with patients and carers separately. For both patient and carer PREMs, a cross-sectional questionnaire study was conducted to identify final items for inclusion using hierarchical item reduction and Rasch analysis. Questionnaire validity and reliability were assessed, including administration feasibility. RESULTS: Initial interview participants suggested the need for three PREMs, two specific to patients: (i) a 'prior' questionnaire that captured experiences of trial introduction, screening, consenting, and early trial experience (< 6 weeks post consent); and (ii) 'on-trial' that captured experiences of ongoing consent and trial participation; and (iii) a PREM specific for carers. The draft 25-item 'prior' questionnaire was completed by 162 patients and 162 patients completed the draft 35-item 'on-trial' questionnaire. Hierarchical and Rasch analysis produced a 14-item 'prior' list and a 15-item list for 'on-trial'. Both patient PREM's demonstrated a good fit to the Rasch model following Bonferroni correction (X2p = 0.008). The carer 34-draft item questionnaire was completed by 102 participants. Hierarchical and Rasch analysis produced a 13-item list for PREM-ECM-Carer, with good fit to the Rasch model ( X2p = 0.62). The pilot testing demonstrated the feasibility of all the PREMs in capturing patient and caregiver experiences in routine clinical settings. CONCLUSIONS: The three PREM-ECM questionnaires will be the first validated experience measures for ECM trial patients and their carers. These questionnaires may be used to assess patients' and their carers' experiences of ECM and enable robust comparisons across cancer trial units highlighting areas for service improvement.

The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Effects of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in patients with primary brain tumor and their caregivers: a randomized controlled trial.

PURPOSE: This study aimed to examine the effect of dependent care theory-based post-surgical home care intervention on self-care, symptoms, and caregiver burden in primary brain tumor patients and their caregivers. METHODS: A parallel-group randomized controlled trial was conducted with patients who underwent surgery for a primary brain tumor between March 2019 and January 2020 in a tertiary hospital and with caregivers who cared for them at home. Eligible patients and caregivers were determined by block randomization. Outcome measures included validated measures of self-care agency (Self-Care Agency Scale), symptoms and interference by symptoms (MD Anderson Symptom Inventory Brain Tumor-Turkish Form), and caregiver burden (Caregiver Burden Scale). Two-way analysis of variance was used in repeated measurements from general linear models compared to scale scores. RESULTS: Self-care agency was significantly higher in the intervention group than in the control group in the first and sixth months after surgery (p < 0.05). The severity of the patients' emotional, focal neurologic, and cognitive symptoms and interference by symptoms were significantly lower in the intervention group than in the control group (p < 0.05). Caregiver burden was significantly lower in the intervention group in the first, third, and sixth months after surgery (p < 0.05). CONCLUSION: Dependent care theory-based post-surgical home care intervention increased patients' self-care and reduced symptoms and their effects. It also reduced the caregiver burden. Dependent care theory can guide the nursing practices of nurses who provide institutional and/or home care services to patients with chronic diseases and their caregivers. TRIAL REGISTRATION: NCT05328739 on April 14, 2022 (retrospectively registered).

The role of social support among caregivers of people with cancer from Chinese and Arabic communities: a qualitative study.

PURPOSE: Cancer caregivers from culturally and linguistically diverse (CALD) communities have reported significant unmet emotional support needs. This study aimed explore the role of social support to manage emotional wellbeing among cancer caregivers from Arabic and Chinese communities in Australia. METHODS: Semi-structured interviews were conducted with Chinese (n = 12) and Arabic (n = 12) speaking cancer caregivers. Participants' mean age was 40.6 years; majority were female (83%) and providing care to a parent (41.67%). RESULTS: Using thematic analysis to analyse interview data, five overarching themes emerged describing caregivers' perspectives on social support. Themes were related to the following: (1) receiving emotional support from social networks, (2) barriers to accessing emotional support from social networks, (3) isolation and loss of connection following the cancer diagnosis, (4) faith as a source of support, and (5) utility of support groups and caregiver advocates. Several caregivers relied on social networks for emotional support; however, caregivers identified key cultural and generational barriers to seeking support from their social networks which prevented caregivers from disclosing their emotions and caregiving situation. Caregivers also reported being isolated from their support system. CONCLUSION: Empirical testing of culturally appropriate strategies that improve social support seeking among caregivers from CALD communities is recommended.

Effects of Telemedicine on Informal Caregivers of Patients in Palliative Care: Systematic Review and Meta-Analysis.

Background: Telemedicine technology is a rapidly developing field that shows immense potential for improving medical services. In palliative care, informal caregivers assume the primary responsibility in patient care and often face challenges such as increased physical and mental stress and declining health. In such cases, telemedicine interventions can provide support and improve their health outcomes. However, research findings regarding the use of telemedicine among informal caregivers are controversial, and the efficacy of telemedicine remains unclear. Objective: This study aimed to evaluate the impacts of telemedicine on the burden, anxiety, depression, and quality of life of informal caregivers of patients in palliative care. Methods: A systematic literature search was conducted using the PubMed, Embase, Web of Science, CENTRAL, PsycINFO, CINAHL Plus with Full Text, CBM, CNKI, WanFang, and VIP databases to identify relevant randomized controlled trials published from inception to March 2023. Two authors independently screened the studies and extracted the relevant information. The methodological quality of the included studies was assessed using the Cochrane risk-of-bias tool. Intervention effects were estimated and sensitivity analysis was conducted using Review Manager 5.4, whereas 95% prediction intervals (PIs) were calculated using R (version 4.3.2) and RStudio. Results: A total of 9 randomized controlled trials were included in this study. The meta-analysis indicated that telemedicine has reduced the caregiving burden (standardized mean differences [SMD] -0.49, 95% CI -0.72 to -0.27; P<.001; 95% PI -0.86 to -0.13) and anxiety (SMD -0.23, 95% CI -0.40 to -0.06; P=.009; 95% PI -0.98 to 0.39) of informal caregivers; however, it did not affect depression (SMD -0.21, 95% CI -0.47 to 0.05; P=.11; 95% PI -0.94 to 0.51) or quality of life (SMD 0.35, 95% CI -0.20 to 0.89; P=.21; 95% PI -2.15 to 2.85). Conclusions: Although telemedicine can alleviate the caregiving burden and anxiety of informal caregivers, it does not significantly reduce depression or improve their quality of life. Further high-quality, large-sample studies are needed to validate the effects of telemedicine. Furthermore, personalized intervention programs based on theoretical foundations are required to support caregivers.

Benefits of Chinese family caregivers of patients with urostomy: a qualitative study.

BACKGROUND: Family caregivers, also known as informal caregivers, are critical for the home care of patients with urostomy. The present study aimed to investigate the benefits of family caregivers in China while taking care of patients with urostomy from a positive perspective. METHODS: A qualitative research design was adopted, with a thematic analysis. The qualitative research software NVivo was used for data analysis. Twenty-two family caregivers of urostomy patients participated in an in-depth interview for 60-90 min. A qualitative analysis was performed using a thematic approach in accordance with the six-stage thematic analysis process reported by Braun and Clarke (2006). RESULTS: The following four benefits were identified: mastering knowledge and skills, promoting self-growth, establishing close family ties, and changing the way of life. Among these four themes, 11 sub-themes were constructed by coders. CONCLUSIONS: This study provides new insights into intervention measures for family caregivers of patients with urostomy, which could play an important role in developing the overall model of family-centered nursing.

Death education interventions for people with advanced diseases and/or their family caregivers: A scoping review.

BACKGROUND: People with life-threatening diseases and their family caregivers confront psychosocial and spiritual issues caused by the persons' impending death. Reviews of death education interventions in the context of life-threatening diseases are scarce and limited to certain intervention types. AIMS: This study aims to ascertain existing evidence on death education interventions for the population of adults with advanced diseases and/or their family caregivers and identify gaps for future research. DESIGN: A scoping review guided by Arksey and O'Malley's framework. DATA SOURCES: Thirteen electronic databases were searched for experimental and qualitative studies on death education interventions for the advanced disease population and/or their family caregivers between 1 January 1960 and 25 October 2023. RESULTS: Nine types of interventions were identified in 47 studies, which included 5 qualitative and 42 experimental designs, half of which were pilot and feasibility trials. Most of the studies focused on people with advanced cancer, and only seven investigated caregivers or families/couples. Death-related outcomes were less likely to be assessed relative to psychological outcomes, spiritual well-being, and quality of life. Life review interventions, cognitive-behavior therapy, narrative therapy, and general psychosocial interventions decreased depression and anxiety, but evidence was limited. Factors contributing to the interventions' success included intervention content, which enabled the disclosure of personal experience and death concerns comfortably, trained professionals, and connection to family caregivers. CONCLUSIONS: This work identified a few potentially effective death education interventions for psychological outcomes for people with advanced cancer or their caregivers. Additional trials are needed to confirm the effectiveness of these interventions.

The importance of caregivers for patients with advanced basal cell carcinoma treated with hedgehog-pathway inhibitors: an observational prospective study.

Oral targeted therapy with hedgehog pathway inhibitors has revolutionized the standard of care for patients with advanced basal cell carcinoma (BCC). These patients are frail and elderly, have various comorbidities, and receive pharmacological polytherapy. Moreover, adverse events may have a significant impact on therapeutic adherence, which must be managed by the clinician. We evaluated the impact of caregivers on the treatment of patients with advanced BCC in terms of continuation of therapy over time. All patients included in this observational prospective study had histologically confirmed metastatic or locally advanced BCC (LaBCC) and were treated with hedgehog pathway inhibitors from January 2016 to December 2021 at the Department of Dermatology at the University of Florence, Italy. The collected patient data included: age, sex, BCC site and area of spread; number of cycles, dose, duration and tolerability of therapy; marital status (single, divorced, married/living with a partner, widow/widower); and information such as living with someone, and the presence of any caregivers. Of the 34 patients included, 33 had LaBCC and one metastatic BCC. There were 11 females (32.4%) and 23 males (67.6%). Patients who were married or living with a caregiver -tolerated therapy better than single patients who lived alone. Indeed, patients with married/live-in caregivers and/or those with an adequate caregiver experienced greater therapeutic adherence and tolerance of adverse events. Given the greater therapeutic adherence of patients with live-in caregivers as partners, it is essential to consider patients' marital status. It is advisable to involve the caregiver early on, and there should be a training discussion on the various possible adverse events and the best way to mitigate them. Therapeutic success is linked not only to patients being informed but also to training of caregivers.

Home symptom management training programme: carer evaluation.

OBJECTIVES: Most people say if they had a terminal illness, they would prefer to be cared for at home and, if possible, to die there. Often this is not possible without a carer to assist with on-going practical care and symptom management. If breakthrough symptoms are not treated in a timely manner, symptoms can escalate quickly causing increased suffering resulting in unwanted hospital transfers. Many carers report feeling motivated but uneducated for the task of medicine management, especially if it involves preparation and/or administration of subcutaneous medicines This study assesses the impact of an education and resource package, caring@home, on carers' confidence, knowledge, and skills in managing palliative symptoms at home using subcutaneous medicines. METHODS: Nurses trained volunteer carers on the use of the package. Carers were invited to complete a 10 min written evaluation survey and to consider consenting to a 30 min semistructure phone interview. RESULTS: Fifty carers returned surveys and 12 were interviewed. Most carers agreed or strongly agreed that the package provided them with the necessary knowledge, skills and confidence to safely and confidently manage breakthrough symptoms using subcutaneous medicines, further, they would recommend the package to others. Interview analysis revealed three main themes: (1) hesitation and motivation to adopt expanded carer role; (2) the importance of a layered approach to support; and (3) avoiding perceived unnecessary contact with nurses. CONCLUSION: The programme can be used by clinical services to empower carers to help enable a person to be cared for, and to die at home.

Cognition and health-related quality of life in long-term survivors of high-grade glioma: an interactive perspective from patient and caregiver.

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.

Changes in rural caregivers' health behaviors while supporting someone with cancer: A qualitative study.

PURPOSE: Caring for someone with cancer has a significant impact on usual routines, including caregivers' ability to maintain their own health and wellbeing. Caregivers living in rural areas face additional challenges in supporting someone with cancer, and little is known about the impact of caregiving on the health behaviors of rural caregivers. Therefore, this study explored how caring for someone with cancer affected rural caregivers' health behaviors. METHODS: Through semi-structured interviews, 20 rural caregivers described changes in their health behaviors while caring for someone with cancer and the factors underlying these changes. Specific prompts were provided for diet, physical activity, alcohol, smoking, sleep, social connection and leisure, and accessing health care when needed. Interviews were audio-recorded and transcribed verbatim. Content analysis was used to identify changes in health behaviors and the factors underlying these changes. The factors identified were mapped to the socioecological framework, identifying areas for intervention across multiple levels (individual, interpersonal, organizational, community, and policy). RESULTS: Rural caregivers reported both positive and negative changes to their diet, physical activity, alcohol, and smoking. Sleep, social connection and leisure, and accessing health care were negatively impacted since becoming a caregiver. CONCLUSIONS: Designing interventions to address rural caregivers' coping strategies, reduce carer burden and fatigue, improve access to cooking and exercise facilities and social support while away from home, reduce the need to travel for treatment, and increase the financial support available could yield widespread benefits for supporting the health and wellbeing of rural caregivers.

Patient and Caregiver Perceptions of an Interface Design to Communicate Artificial Intelligence-Based Prognosis for Patients With Advanced Solid Tumors.

PURPOSE: Use of artificial intelligence (AI) in cancer care is increasing. What remains unclear is how best to design patient-facing systems that communicate AI output. With oncologist input, we designed an interface that presents patient-specific, machine learning-based 6-month survival prognosis information designed to aid oncology providers in preparing for and discussing prognosis with patients with advanced solid tumors and their caregivers. The primary purpose of this study was to assess patient and caregiver perceptions and identify enhancements of the interface for communicating 6-month survival and other prognosis information when making treatment decisions concerning anticancer and supportive therapy. METHODS: This qualitative study included interviews and focus groups conducted between November and December 2022. Purposive sampling was used to recruit former patients with cancer and/or former caregivers of patients with cancer who had participated in cancer treatment decisions from Utah or elsewhere in the United States. Categories and themes related to perceptions of the interface were identified. RESULTS: We received feedback from 20 participants during eight individual interviews and two focus groups, including four cancer survivors, 13 caregivers, and three representing both. Overall, most participants expressed positive perceptions about the tool and identified its value for supporting decision making, feeling less alone, and supporting communication among oncologists, patients, and their caregivers. Participants identified areas for improvement and implementation considerations, particularly that oncologists should share the tool and guide discussions about prognosis with patients who want to receive the information. CONCLUSION: This study revealed important patient and caregiver perceptions of and enhancements for the proposed interface. Originally designed with input from oncology providers, patient and caregiver participants identified additional interface design recommendations and implementation considerations to support communication about prognosis.

Toward identification and intervention to address financial toxicity and unmet health-related social needs among adolescents and emerging adults with cancer and their caregivers: A cross-cultural perspective.

PURPOSE: We qualitatively explored the unique needs and preferences for financial toxicity screening and interventions to address financial toxicity among adolescents and emerging adults (younger AYAs: 15-25 years) with cancer and their caregivers. METHODS: We recruited English- or Spanish-speaking younger AYAs who were treated for cancer within the past 2 years and their caregivers. Semi-structured interviews were conducted to explore preferences for screening and interventional study development to address financial toxicity. The data were coded using conventional content analysis. Codes were reviewed with the study team, and interviews continued until saturation was reached; codes were consolidated into categories and themes during consensus discussions. RESULTS: We interviewed 17 participants; nine were younger AYAs. Seven of the 17 preferred to speak Spanish. We identified three cross-cutting themes: burden, support, and routine, consistent, and clear. The burden came in the form of unexpected costs such as transportation to appointments, as well as emotional burdens such as AYAs worrying about how much their family sacrificed for their care or caregivers worrying about the AYA's physical and financial future. Support, in the form of familial, community, healthcare institution, and insurance, was critical to mitigating the effects of financial toxicity in this population. Participants emphasized the importance of meeting individual financial needs by routinely and consistently asking about financial factors and providing clear guidance to navigate these needs. CONCLUSION: Younger AYAs and their caregivers experience significant financial challenges and unmet health-related social needs during cancer treatment and often rely on key supports to alleviate these unmet needs. When developing interventions to mitigate financial toxicity, clinicians and health systems should prioritize clear, consistent, and tailorable approaches to support younger AYA cancer survivors and their families.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life.

Importance: Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. Objectives: To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. Design, Setting, and Participants: This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Main Outcomes and Measures: Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. Results: This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). Conclusions and Relevance: In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BACKGROUND: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers. OBJECTIVE: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting. METHODS: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3). RESULTS: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface. CONCLUSIONS: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care.

"Like not having an arm": a qualitative study of the impact of visitor restrictions on cancer care during the COVID-19 pandemic.

PURPOSE: Visitor restriction policies to prevent the spread of COVID-19 among patients and clinicians were widespread during the pandemic, resulting in the exclusion of caregivers at key points of cancer care and treatment decision-making. The aim of this study was to explore how visitor restrictions impacted cancer treatment decision-making and care from patient and physician perspectives. METHODS: Sixty-seven interviews, including 48 cancer patients and 19 cancer and palliative care physicians from four academic cancer centers in the USA between August 2020 and July 2021. RESULTS: Visitor restrictions that prevented caregivers from participating in clinic appointments and perioperative hospital care created challenges in cancer care that spanned three domains: practical, social, and informational. We identified eight themes that characterized challenges within the three domains across all three groups, and that these challenges had negative emotional and psychological consequences for both groups. Physicians perceived that patients' negative experiences due to lack of support through the physical presence of caregivers may have worsened patient outcomes. CONCLUSIONS: Our data demonstrate the tripartite structure of the therapeutic relationship in cancer care with caregivers providing critical support in the decision-making and care process to both patients and physicians. Caregiver absences led to practical, psychosocial, and informational burdens on both groups, and likely increased the risk of burnout among physicians. Our findings suggest that the quality of cancer care can be enhanced by engaging caregivers and promoting their physical presence during clinical encounters.

Exploring coping strategies among caregivers of children who have survived paediatric cancer in Jordan.

OBJECTIVE: To explore the coping strategies of caregivers of children who have survived paediatric cancer in Jordan. MATERIALS AND METHODS: This study used a cross-sectional survey design and convenient sampling. The sample included 102 caregivers of children who have survived cancer, and outcome measures included the Arabic-translated Brief COPE, and caregiver and child demographic and condition questionnaire. Data analyses included descriptive statistics, analysis of frequencies, Spearman-rank order correlations and linear regression. RESULTS: Caregivers most frequently used religion coping (mean=6.42, SD=1.85), followed by acceptance (mean=5.95, SD=1.96) and planning (mean=5.05, SD=1.94). The least used coping strategies were humour (mean=2.98, SD=1.24) and behavioural disengagement as coping strategies (mean=3.01, SD=1.42). Having a female child predicted more self-distraction utilisation (ß=0.265, p=0.007). CONCLUSION: Caregivers of children who have survived cancer in Jordan frequently use passive coping strategies like religion and acceptance coping to overcome daily life stressors. Caregivers might benefit from psychosocial occupational therapy interventions to support their engagement in more active or problem-focused coping strategies.

Experiences of family caregivers in dealing with cases of advanced breast cancer: a qualitative study of the sociocultural context in Punjab, Pakistan.

BACKGROUND: Patients with advanced breast cancer require consistent help and support from family caregivers. These caregivers often endure financial burdens and psychological stress, with their experiences significantly influenced by sociocultural factors. This study aims to explore the experiences of family caregivers of advanced breast cancer patients in Punjab province, Pakistan. METHODS: Data was collected through in-depth interviews with fifteen family caregivers of advanced breast cancer patients in three major cities of Punjab, Pakistan. Caregivers, who had been in close contact with the patient for the last two years, were purposively sampled from five major hospitals. The data was analyzed using thematic analysis. RESULTS: The study revealed that the experiences of family caregivers are deeply rooted in the sociocultural context. Key themes identified include social responsibility and cultural reciprocity norms; limited awareness and mobility options for caregivers; financial responsibility and strain; impacts of beauty myths and shyness on caregiving attitudes and decisions; the stressful and emotional nature of caregiving; treatment perspectives influenced by social groups; challenges in consulting male physicians and associated stigma; the role of religious beliefs in caregiving; and stress management, with religion often being a coping mechanism. These factors can contribute to delayed treatment decisions for patients. CONCLUSIONS: Family caregivers are crucial in facilitating timely treatment decisions for advanced breast cancer patients in the Pakistani context. To minimize treatment delays and alleviate caregiver stress, addressing sociocultural barriers in care-seeking is essential. A tailored approach, considering sociocultural and religious factors, is imperative for the management and early diagnosis of breast cancer, necessitating appropriate policymaking and implementation.