"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.

Correlation Between Illness Uncertainty in Caregivers of Patients with Liver Cancer, Their Coping Styles, and Quality of Life.

Objective: This study explores the correlation between coping style, quality of life, and illness uncertainty in the family caregivers of patients with liver cancer. Methods: Employing convenience sampling, 210 family caregivers of patients with liver cancer who met the admission criteria were selected from a grade A infectious disease hospital in Beijing between January and December 2022. A cross-sectional survey was conducted using the Simplified Coping Style Questionnaire, Caregiver Quality of Life, and the Mishel Uncertainty in Illness Scale for Family Members. This study analysed the correlations between coping styles, quality of life, and illness uncertainty in these caregivers. Results: The study found that family caregivers of patients with liver cancer had average scores for illness uncertainty (83.44 ± 11.86), coping style (33.19 ± 9.79; both positive [23.02 ± 6.81] and negative [10.17 ± 5.05]), and quality of life (169.53 ± 32.46). A negative association was observed between illness uncertainty in these caregivers and positive coping style (r = -0.207, p = 0.003), physical status (r = -0.182, p = 0.008), psychological status (r = -0.200, p = 0.004), and social adaptation (r = -0.229, p = 0.001). Conclusion: The study concludes that illness uncertainty in family caregivers of patients with liver cancer is at a moderate level. Furthermore, there is a notable correlation between illness uncertainty, coping style, and quality of life in these caregivers.

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).

Toward a new personalized psycho-social approach for the support of prostate cancer and their caregivers dyads: a pilot study.

Introduction: Prostate cancer patients (PCP) often struggle with a significant emotional, physical, and social burden during the care-flow pathway. Noteworthy, PCP should not be considered a standalone patient, but someone who is connected with a relevant social environment and that is usually supported by a beloved one, the caregiver. The involvement of the caregivers through the care pathway might bring significant benefits both on the psychological and the treatment and decision-making side. The present pilot study aimed at preliminarily assessing quantitatively the psychological impact of a prostate cancer diagnosis on the degree of agreement of PCPs and their caregivers on medical decisions, coping resources and psychological distress levels. Methods: 16 PCP and their caregivers were enrolled in the study and fulfilled a battery of standardized questionnaires. Results: Results showed low concordance in decision making styles and preferences in patients and their caregivers and that the dyads showed similar depression symptoms levels. Relevant features of the psychological needs of the analyzed dyads, such as need for information and support, also emerged. Conclusion: On the basis of these preliminary results, guidelines for the construction of tailored brief psychological support interventions for PCP dyads are provided.

Echoes of Support: A Qualitative Meta-Synthesis of Caregiver Narratives in Lung Cancer Care.

Lung cancer stands as one of the prevalent cancers, impacting both men and women globally. Family caregivers, deeply involved in the care of individuals affected by this disease, often endure heightened distress and struggle to navigate the manifold challenges associated with caregiving. Understanding the intricate experiences and challenges of caregivers in the realm of lung cancer care is critical, given its profound impact on their well-being and the quality of patient care. This study aimed to comprehensively examine and synthesize qualitative data concerning caregiver experiences within the context of lung cancer. Six databases were systematically searched for studies with qualitative findings relevant to caregivers and lung cancer. Seventeen studies were included, and findings were reviewed and synthesized. The main challenges identified were: 'Information accessibility', 'Dual roles and family dynamics', 'Coping with emotional challenges and uncertainty', and 'Need for support networks'. These findings underscore the profound challenges faced by caregivers, shedding light on the substantial impact of cancer on their well-being and functionality. Moreover, the study accentuates the pressing need for tailored support systems that can address the emotional toll and information needs of caregivers. This emphasis on supportive interventions is vital to enhance the quality of care and overall well-being for both patients and caregivers within the lung cancer care continuum.

Development of a Community-Based Communication Intervention among Latin Caregivers of Patients Coping with Cancer.

Background: Cancer affects the emotional well-being of patients and caregivers, highlighting the need for effective communication strategies. This study explores a community-based communication intervention for Latino caregiver-patient dyads coping with cancer. The acceptability of the intervention, along with its associated facilitators and barriers, are crucial considerations. Methods: Three focus group interviews involved healthcare providers, community partners, patients, and caregivers to discuss the communication needs of this population and the components of a communication intervention while identifying facilitators and barriers to the intervention. Qualitative thematic content analysis was conducted using Nvivo v12, ensuring reliability through independent analysis and consensus building. Results: Participants (89% female, average age of 53) included patients (30%), caregivers (30%), community partners (25%), and healthcare providers (15%), and they discussed the overall acceptability of adapting a communication intervention, where they emphasized benefits for caregivers and patients, primarily through support groups. Communication strategies accepted by participants include psychological support, cancer education, assertive communication skills, and methods for improved interactions with healthcare providers and extended family. Conclusions: Participants' responses align with the current literature, emphasizing problem-solving, mutual support, and communication strategies and underscoring the role of community partners. The study underlines the necessity for culturally tailored communication interventions for Latino families facing cancer.

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.

Caregiver perspectives of scoliosis surgery for children with cerebral palsy: a qualitative study.

PURPOSE: To explore the perspectives of primary caregivers of children with cerebral palsy (CP) who had spinal surgery for scoliosis. MATERIALS AND METHODS: A qualitative study was conducted using semi-structured interviews and guided by qualitative description methodology. Participants were caregivers of children with CP aged 5-18, who had undergone spinal surgery for scoliosis in Australia. The research team included a parent with lived experience. RESULTS: Fourteen participants (8 biological mothers), aged 40-49 years, completed online semi-structured interviews. Four themes were identified emerged. Life with a child with CP underpinned all experiences which were founded on familiarity with their child, medical procedures, and hospitalisation. Three subthemes were parents are the experts in knowing their child, children are vulnerable, and impact on caregivers. Theme 2 involved the significance of decision making to proceed with surgery. Theme 3 underscored a need to be prepared for the surgical journey and, in Theme 4, participants spoke of needing to expect the unexpected. CONCLUSION: The findings highlight the importance of understanding caregiver experiences and can help inform health professionals and other families in the decision-making process, preparing for and navigating spinal surgery.

Spinal surgery for scoliosis in children with cerebral palsy is a major surgery and poses substantial challenges for the family.Understanding the magnitude of the decision for families to proceed with surgery will equip health professionals to adequately support and partner with families.Detailed information and extensive preparation are necessary for families to proceed with and navigate surgery, the hospital stay and to return home and to the community.

Outcomes of Decompressive Surgery for Patients With Severe Cerebral Venous Thrombosis: DECOMPRESS2 Observational Study.

BACKGROUND: Decompressive neurosurgery is recommended for patients with cerebral venous thrombosis (CVT) who have large parenchymal lesions and impending brain herniation. This recommendation is based on limited evidence. We report long-term outcomes of patients with CVT treated by decompressive neurosurgery in an international cohort. METHODS: DECOMPRESS2 (Decompressive Surgery for Patients With Cerebral Venous Thrombosis, Part 2) was a prospective, international cohort study. Consecutive patients with CVT treated by decompressive neurosurgery were evaluated at admission, discharge, 6 months, and 12 months. The primary outcome was death or severe disability (modified Rankin Scale scores, 5-6) at 12 months. The secondary outcomes included patient and caregiver opinions on the benefits of surgery. The association between baseline variables before surgery and the primary outcome was assessed by multivariable logistic regression. RESULTS: A total of 118 patients (80 women; median age, 38 years) were included from 15 centers in 10 countries from December 2011 to December 2019. Surgery (115 craniectomies and 37 hematoma evacuations) was performed within a median of 1 day after diagnosis. At last assessment before surgery, 68 (57.6%) patients were comatose, fixed dilated pupils were found unilaterally in 27 (22.9%) and bilaterally in 9 (7.6%). Twelve-month follow-up data were available for 113 (95.8%) patients. Forty-six (39%) patients were dead or severely disabled (modified Rankin Scale scores, 5-6), of whom 40 (33.9%) patients had died. Forty-two (35.6%) patients were independent (modified Rankin Scale scores, 0-2). Coma (odds ratio, 2.39 [95% CI, 1.03-5.56]) and fixed dilated pupil (odds ratio, 2.22 [95% CI, 0.90-4.92]) were predictors of death or severe disability. Of the survivors, 56 (78.9%) patients and 61 (87.1%) caregivers expressed a positive opinion on surgery. CONCLUSIONS: Two-thirds of patients with severe CVT were alive and more than one-third were independent 1 year after decompressive surgery. Among survivors, surgery was judged as worthwhile by 4 out of 5 patients and caregivers. These results support the recommendation to perform decompressive neurosurgery in patients with CVT with impending brain herniation.

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.

The mental health burden of food allergies: Insights from patients and their caregivers from the Food Allergy Research & Education (FARE) Patient Registry.

Background: Food allergies impose a large psychosocial burden, including mental, emotional, and social aspects, on both patients and their caregivers. Patients, caregivers, and their families often experience anxiety, isolation, and fear around food allergies. Objective: To assess the real-world mental health burden of food allergies, using the Food Allergy Research & Education (FARE) Patient Registry (NCT04653324). Methods: Self-reported data from patients with food allergies, and their caregivers, were analyzed from the FARE Food Allergy History and Mental Health Concerns surveys. Odds ratios were also calculated as a measure of association between patient food allergy characteristics and the likelihood of having mental health concerns or a formal mental health diagnosis. Results: The FARE Patient Registry included 1680 patients/caregivers. Anxiety (54%) and panic (32%) were the most common emotions that patients reported as a result of eating the food that produced an allergic reaction. About two-thirds of patients reported mental health concerns related to food allergies (62%), including anxiety after an allergic reaction, anxiety about living with food allergies, and concerns about food avoidance. Caregivers also experienced fear for the safety of their children, and often sought mental health care to cope with worry related to caring for patients with food allergies. The likelihood of having food allergy-related mental health concerns was increased for patients experiencing more than 1 reaction per year (OR 1.68-1.90) and was lowered for patients having a formal mental health diagnosis (OR 0.43). Caregivers filling out the FARE survey for pediatric patients (OR 4.03) and experiencing food allergy-related mental health concerns (OR 2.36) were both significant predictors for having a formal mental health diagnosis. Conclusion: Our study highlights a continuing unmet need for mental health screening and support as part of the management of patients with food allergies.

Knowledge and Attitudes of Parents and Caregivers in New Delhi to Childhood Hearing Loss and Hearing Services.

Parental and caregiver support is crucial for addressing childhood hearing loss in low and middle-income countries, where a significant burden of disabling hearing loss exists among children. This study aimed to assess the knowledge and attitudes of parents and caregivers regarding childhood hearing loss and available hearing services in both urban and rural settings in Delhi, India. A total of 314 participants were recruited and interviewed using a culturally adapted questionnaire consisting of 26 items, covering topics like biomedical and non-biomedical beliefs, knowledge of otitis media-related hearing loss, identification, and intervention. Statistical analysis of data was performed using  Mann Whitney U tests and categorical principal component analysis (PCA). The study found that parents generally had a higher percentage of correct responses compared to caregivers in both urban and rural areas. Categorical PCA revealed variations in responses between fathers, mothers, and caregivers. In the urban group, mothers exhibited higher knowledge and more positive attitudes, while fathers showed lower involvement. In the rural group, while mothers demonstrated relatively higher awareness on all categories compared to fathers, these differences were highly relevant on questions concerning noise exposure, maternal medicine during pregnancy, and communication milestones. The findings emphasize the importance of considering regional and cultural factors when designing programs. Additionally, involving fathers in awareness campaigns and support networks is crucial to achieve comprehensive coverage in addressing childhood hearing loss. In conclusion, this study contributes valuable insights into the preparedness of parents and caregivers for audiology services and the need for contextually appropriate strategies to enhance childhood hearing health services in India.

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.

Effects of family dignity interventions combined with standard palliative care on family adaptability, cohesion, and anticipatory grief in adult advanced cancer survivors and their family caregivers: A randomized controlled trial.

Background: Family involvement and comfort are equally important in palliative care. Dignity undertook a new meaning and novel challenges as a result of restrictions on visits and companionship during the pandemic. Family-centered family dignity interventions have been shown to be effective in increasing patients' sense of dignity, increasing levels of hope, and reducing psychological distress; however, the effectiveness in enhancing family adaptability and intimacy in the survivor-caregiver binary and reducing expected grief have been inconclusive. Objectives: The primary objective of this study was to assess the efficacy of family dignity interventions on family adaptability and cohesion. The secondary objective was to explore the effects of the interventions on anticipatory grief and psychological distress, and the lasting effect 1 month after the intervention. Design: A single-blinded, two-arm parallel group, randomized controlled trial was conducted in China. Settings: and methods: Ninety-eight dyads who met the inclusion criteria were randomly assigned to the family dignity intervention (n = 51) or standard palliative care group (n = 47) between June and August 2022. Study outcomes were measured at baseline, immediately post-intervention, and at the 1-month follow-up post-intervention evaluation. Data were analyzed using the Kolmogorov-Smirnov test, chi-square test, Fisher's exact test, independent sample t-test, Wilcoxon rank-sum test, and generalized estimation equations. The Intention-To-Treat analysis was performed for all available data. Results: In comparison to the control group, significant improvements in family adaptability and cohesion and anticipatory grief over post-intervention and 1-month follow-up were demonstrated among the patients in the intervention group. The intervention group of caregivers had significant improvement in anticipatory grief at post-intervention and 1-month follow-up. The level of psychological distress was significantly lower in the intervention group than the control group (p < 0.05) at 1-month follow-up but the differences were not statistically significant at post-intervention. All outcomes showed clear differences from baseline after the intervention and at the 1-month follow-up evaluation but not between post-intervention and at the 1-month follow-up evaluation. Conclusion: This study further verifies the actual effect of family dignity intervention program through randomized controlled trials, and provides a reference for improving the family relationship between advanced cancer patients and their family caregivers, and improving their mental health. The addition of family dignity intervention to standard palliative care greatly increased the adaptability and cohesion between survivors and their families, lessened the anticipatory grief of the survivor-caregiver pair, and relieved caregivers' anxiety and despair. We did not detect a statistically significant difference between post-intervention and the 1-month follow-up evaluation, suggesting that the intervention may have a durable impact at least 1 month.

Combined Effects of the Mobile Health (mHealth) Psychoeducation and Benson Relaxation Technique in Reducing the Caregiving Burden of Cancer Patients in Bangladesh: A Protocol for a Randomized Controlled Trial.

BACKGROUND: Chronic and noncommunicable diseases, including cancer, are a significant global public health concern. Family members or friends who serve as caregivers significantly contribute to supporting cancer patients without formal medical training. In most cases in Bangladesh, women perform caregiving activities with household responsibilities and lack adequate support from the family and healthcare systems; consequently, they face a significant burden as caregivers. This study aims to assess the effectiveness of combined mobile health (mHealth) psychoeducation and the Benson relaxation technique (BRT) on the caregiving burden among female informal caregivers of cancer patients in Bangladesh. METHODS: We shall conduct a prospective, open-label, two-arm (1:1), randomized controlled trial in a hospital, focusing on the burden of informal female caregivers of cancer patients in Bangladesh. The combined intervention will be delivered to the intervention group through mHealth starting April 2024 and will span six months. Participants' data will be collected through face-to-face interviews using the Zarit Burden Interview (ZBI), the Hospital Anxiety Depression Scale, and the World Health Organization Quality of Life Bangla Short Instrument. Outcomes will be assessed at the baseline, midline, and endline. We shall employ descriptive statistics such as frequencies, percentages, means, and standard deviations. The t-test or Mann-Whitney U test will be used to compare continuous variables. Additionally, a two-way repeated-measures analysis of variance will be employed to evaluate the outcomes. RESULTS: Participant enrollment began in January 2024, and recruitment is ongoing. The results of this study will be disseminated through publications and conferences. No external professional writers were involved in writing this manuscript. CONCLUSION: This study addresses the gap in the assessment of combined interventions for caregiver burden in Bangladesh. These outcomes may provide valuable insights into caregivers' well-being, caregiving responsibilities, and the potential for integrated interventions to reduce the burden, especially among women. If effective, we recommend the national integration of psychoeducation and BRT using mHealth.

Associations between preparedness, perceived stress, depression, and quality of life in family caregivers of patients with a temporary enterostomy.

PURPOSE: To investigate the preparedness, perceived stress, risk of depression, and quality of life of family caregivers of patients receiving a temporary enterostomy, to provide a reference for improving the long-term care and quality of life of patients receiving a temporary enterostomy. METHODS: We enrolled 181 family caregivers of patients in a hospital in China from 2021 to 2023. Responses to the General Information Questionnaire, the Chinese Caregiver Preparedness Scale, the Chinese Perceived Stress Scale, the Chinese bilingual version of the Patient Health Questionnaire-2, and the 12-item Short Form Survey were collected online. RESULTS: Pearson's correlation analysis revealed that family caregivers' risk of depression was negatively correlated with their preparedness, the physical component summary score, and the mental component summary score but was positively correlated with perceived stress. Multiple linear regression analysis identified factors influencing caregiver preparedness. CONCLUSIONS: These findings help healthcare personnel to identify high-risk individuals among family caregivers of patients receiving a temporary enterostomy. This provides a basis for formulating well-planned, dynamic health education programs that meet patients' needs for disease-related knowledge and care.

Cancer Care Supportive Text Messaging Program (Text4Hope) for People Living With Cancer and Their Caregivers During the COVID-19 Pandemic: Longitudinal Observational Study.

BACKGROUND: Cancer is the leading cause of death in Canada, and living with cancer generates psychological demands, including depression and anxiety among cancer survivors and caregivers. Text4Hope-Cancer Care SMS text messaging-based service was provided to people with cancer and caregivers during the COVID-19 pandemic to support their mental health. OBJECTIVE: The aim of this study is to examine the clinical effectiveness of and satisfaction with Text4Hope-Cancer Care in addressing mental health conditions among people living with cancer and caregivers. METHODS: The study was conducted in Alberta, Canada. People who were diagnosed or receiving cancer treatment and caregivers self-subscribed to receive 3-months daily supportive cognitive behavioral therapy-based SMS text messages and a web-based survey was sent at designated time points to collect clinical and nonclinical data. The Hospital Anxiety and Depression scale (HADS) was used to examine changes in anxiety and depression symptoms after receiving the service. Satisfaction with the service was assessed using a survey with a Likert scale. Descriptive and inferential statistics were used, and test significance was considered with P≤.05. RESULTS: Overall, 107 individuals subscribed to the service, and 93 completed the program (completion rate 93/107, 86.9%). A significant improvement in the anxiety symptoms (HADS-Anxiety [HADS-A] subscale) was reported after 3 months of Text4Hope-Cancer Care (t11=2.62; P=.02), with medium effect size (Hedges g=0.7), but not depression symptoms (HADS-Depression [HADS-D] subscale). Subscribers expressed high satisfaction and agreed that the service has helped them to cope with mental health symptoms and improve their quality of life. Most subscribers read the SMS text messages more than once (30/30, 100%); took time to reflect or took a beneficial action after reading the messages (27/30, 90%); and highly agreed (27/30, >80%) with the value of the received supportive SMS text messages as being relevant, succinct, affirmative, and positive. All subscribers recommended SMS text messaging for stress, anxiety, and depression and for cancer care support (30/30, 100%). CONCLUSIONS: Text4Hope-Cancer Care was well-perceived and effectively addressed anxiety symptoms among people living with cancer and caregivers during the peak of the COVID-19 pandemic. This study provides evidence-based support and insight for policy and stakeholders to implement similar convenient, economic, and accessible mental health services that support vulnerable populations during crises. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/20240.