Self-perceived Burden Research Articles

Delineating Care Recipient Burden Constructs: Development and Validation of the CARE-2B Scale for Care Recipient Self-Perceived Burden and Proxy Assessment of Caregiver Burden.

Care Recipient Self-Perceived Burden (CR-SPB) to Caregivers is an important but overlooked aspect within the caregiver-care recipient relationship. This study aimed to 1) develop and validate the CARE-2B (Care Recipient's Two Burden) Scale, assessing both CR-SPB and their proxy assessment of caregiver burden (Proxy-CB); 2) examine whether the CR-SPB and Proxy-CB differ from caregiver burden's own assessment and other health and social care constructs. Data were collected from 504 caregiver-care recipient dyads in the US using an online panel between August 2022 and February 2023. Care recipients completed the CARE-2B Scale, which includes two subscales: their self-perceived burden (CR-SPB) and their proxy assessment of caregiver burden (Proxy-CB). Care recipients also completed measures related to health, well-being: SPB-scale, EQ-5D-5L, and EQ-HWB. Caregivers completed CarerQoL and ASCOT-Carer. Psychometric analysis included exploratory and confirmatory factor analysis, item response theory (IRT), and construct validity. CR-SPB correlated strongly with the SPB-Scale (r=0.73), while Proxy-CB correlated more strongly with caregiver-reported burden (r=0.61). Both CR-SPB and Proxy-CB items demonstrated good discrimination and information coverage in IRT analysis. EFA further supported the distinctiveness of CR-SPB and Proxy-CB, with CR-SPB items loading on a separate factor from caregiver burden and health constructs, while Proxy-CB aligned with caregiver-reported burden. The CARE-2B Scale innovatively assesses both CR-SPB and Proxy-CB from the care recipient's perspective, providing new insights into the caregiving relationship. This dual-perspective measure has implications for enhancing care strategies for individuals with chronic conditions or disabilities and their caregivers.

How does family resilience develop among stroke survivors and their caregivers? A mixed-method study using a chain mediating model

BackgroundWalsh's family resilience theory indicated that families could foster resilient outcomes among their members when they are facing changes or crises. However, little is known about family resilience among Chinese stroke survivors and their caregivers. ObjectivesTo explore the direct and indirect relationships between the family resilience of stroke survivors, perceived social support, self-perceived burden, self-efficacy, and the burden on their principal caregivers, and to examine the journey of adapting to family resilience among stroke survivors. DesignAn explanatory sequential mixed-method study. MethodsA quantitative assessment of perceived social support, self-perceived burden, self-efficacy, and family resilience was conducted among a cohort of stroke survivors. For a deeper understanding of the family resilience formation process, semi-structured, in-depth interviews were undertaken with a purposefully selected subset of participants, consisting of 15 stroke survivors and their principal caregivers who met the study criteria. Data analysis encompassed descriptive statistics, mediation models, and content analysis to integrate and interpret both quantitative and qualitative data. ResultsIn a comprehensive hospital in Guangdong Province, China, 379 participants—229 men (60.4%) and 150 women (39.6%)—completed a cross-sectional questionnaire survey. The quantitative phase revealed significant statistical differences (p < 0.05) in total family resilience scores among stroke survivors related to various factors, such as age, marital status, educational level, occupational status, average monthly income per capita, first-time onset, and types of stroke. Self-perceived burden and self-efficacy partially mediate the relationship between perceived social support and family resilience, contributing to a sequential chain-mediated effect. During the qualitative phase, in-depth interviews revealed a progressive trajectory from the initial shock of diagnosis through the ongoing presence of stress and challenges to the ultimate development of family resilience and an adaptive perspective toward the future. ConclusionsExploring the factors influencing family resilience in stroke survivors could assist healthcare professionals developing interventions to enhance family resilience and lessen the burden on principal caregivers from individual, family, and social perspectives.

The Relationship Between Facilitation of Patient Involvement and Self-Perceived Burden in Postoperative Lung Cancer Patients: The Mediating Role of Social Support.

Patients with lung cancer often experience a high level of self-perceived burden, which significantly affects their quality of life and psychological health. Social support is closely related to the self-perceived burden, yet there is scant research on the relationship between social support, facilitation of patient involvement, and self-perceived burden. This study aims to understand the current situation of self-perceived burden in postoperative lung cancer patients and to explore the mediating role of social support between facilitation of patient involvement and self-perceived burden. A cross-sectional design was used in this study. Using a convenience sampling method, a total of 331 lung cancer patients who were hospitalized for surgical treatment at a tertiary cancer hospital in Beijing, China, from August 2022 to May 2023, were selected to participate in this survey. The survey included a self-designed sociodemographic questionnaire, the Facilitation of Patient Involvement Scale (FPIS), the Perceived Social Support Scale (PSSS), and the Self-Perceived Burden Scale (SPBS). Data were analyzed using SPSS 24.0 for statistical description and Pearson correlation analysis, while AMOS 24.0 was utilized to construct a structural equation model to examine the mediation effect. The score of self-perceived burden in lung cancer patients was 26.42 ±8.23 points. Bot facilitation of patient involvement and social support was negatively correlated with self-perceived burden (r = -0.313, r = -0.332, P < 0.001). Social support plays a partially mediated role in the relationship between facilitation of patient involvement and self-perceived burden, accounting for 44.3% of the total effect. The self-perceived burden of patients after lung cancer surgery was at a moderate level, and social support partially mediates the relationship between facilitation of patient involvement and self-perceived burden. Medical staffshould encourage patient participation in their own treatment decisions and alleviate the burden associated with lung cancer and surgical treatment by enhancing their social support.

Self-Perceived Burden as a Mediator Between Perceived Partner Responsiveness and Fertility Intentions in Women With Inflammatory Bowel Disease.

This study investigates the role of self-perceived burden as a mediating factor in the association between perceived partner responsiveness and fertility intentions in women of reproductive age diagnosed with inflammatory bowel disease. A sample of 366 female inflammatory bowel disease patients from Changsha, China, was recruited using convenience sampling. Participants completed assessments, including the Impact of Perceived Partner Responsiveness Scale, Self-Perceived Burden Scale, Fertility Intentions Questionnaire, and a demographic questionnaire. Results indicated a moderate-to-low level of fertility intentions (mean score: 5.33 ± 2.21), with corresponding moderate levels of self-perceived burden (mean score: 30.01 ± 10.02) and perceived partner responsiveness (mean score: 52.80 ± 17.03). Positive correlations were observed between perceived partner responsiveness and fertility intentions and negative correlations between self-perceived burden and fertility intentions. The relationship between perceived partner responsiveness and fertility intentions was found to be partially mediated by self-perceived burden. These findings highlight the significance of perceived partner responsiveness and self-perceived burden in shaping fertility intentions among women with inflammatory bowel disease.

Nature and Determinants of Fear of Cancer Recurrence After Endoscopic Submucosal Dissection for Early Gastric Cancer: A Cross-Sectional Study.

Gastric cancer is one of the most prevalent tumors in China and other countries, with high morbidity and mortality. Fear of cancer recurrence is common among cancer survivors. Fear of cancer recurrence experiences and psychological interventions have been investigated in breast and other cancers. However, this phenomenon and associated factors have not been evaluated in early gastric cancer survivors in China. The objective of this study was to investigate the nature of fear of cancer recurrence and influencing factors in Chinese patients with early gastric cancer treated with endoscopic submucosal dissection. This cross-sectional study in two centers included 312 early gastric cancer patients who answered self-report questionnaires and were treated with endoscopic submucosal dissection between June 2022 and May 2023 to assess fear of cancer recurrence. Gender, family history of gastrointestinal tumor, tumor recurrence, Helicobacter pylori infection, disease perception, and self-perceived burden were significant factors influencing fear of cancer recurrence (p < .05). More than half of early gastric cancer patients have fear of cancer recurrence, and how to deal with it has become a key issue in the postoperative care of patients. Medical professionals should address these factors to reduce fear of cancer recurrence in at-risk patients.

Influence of Financial Toxicity on the Quality of Life in Lung Cancer Patients Undergoing Immunotherapy: The Mediating Effect of Self-Perceived Burden.

The purpose of this study is to understand the level of quality of life (QOL) of lung cancer patients receiving immunotherapy and to clarify the potential mediating role of self-perceived burden (SPB) in the relationship between financial toxicity (FT) and QOL. A convenience sample of 342 lung cancer patients receiving immunotherapy was recruited from a cancer hospital from October 2022 to April 2023 for this cross-sectional study. The participants were requested to complete the following structured questionnaires: a sociodemographic and clinical questionnaire, the Functional Assessment of Cancer Therapy-Lung (FACT-L), the Self-Perceived Burden Scale (SPBS) and the COmprehensive Score for Financial Toxicity (COST). The data were subjected to Pearson correlation analysis and bootstrapping analysis in structural equation modelling. The total FACT-L score was 79.90±15.84 points in 322 lung cancer patients receiving immunotherapy. FT (β = 0.37, P < 0.01) and SPB (β = -0.27, P < 0.01) had a direct effect on QOL. In addition, SPB partly mediated the association between FT and QOL, and the standardized indirect effect was 0.19, accounting for 33.9% of the total effect. The present study revealed that there is still much room for improvement in the QOL of lung cancer patients during immunotherapy. A greater financial burden resulted in a greater self-perceived burden and was thus associated with inferior QOL. It is imperative for oncology nurses to routinely assess QOL, FT or risk and SPB for lung cancer patients undergoing immunotherapy as well as to assist those patients in understanding the potential financial risk of each choice and help them take more active roles in their routine clinical care.

Effects of Problem-Solving Intervention Model Combined with Nano-Silver Gel on Disease Burden and Emotion with Thyroid Microwave Ablation

This study explored the effects of problem-solving intervention model on self-perceived burden and emotion of patients with thyroid microwave ablation. A retrospective analysis was conducted on 166 patients who underwent this procedure in our hospital from October 2019 to October 2022. Out of these patients, 81 received the problem-solving intervention model and were assigned to the intervention group. Furthermore, after the surgery, nano-silver gel was applied to treat the patients’ wounds in the intervention group. The remaining 85 patients received routine nursing intervention and were designated as the control group. The disease burden, emotional state and nutritional rehabilitation in both groups were compared. The intervention group had overtly lower FBS, S-AI and T-AI scores at T1 and T2 stages compared to the control group (P &lt; 0.05). However, no significant differences in FBS, S-AI, and T-AI scores were observed between the two groups at the T0 stage (P &gt; 0.05). Additionally, there was a statistically significant disparity in SGA classification at the T1 stage (P &lt; 0.05), but no significant differences were found in SGA classification at the T0 and T2 stages (P &gt; 0.05). These findings suggest that the problem-solving intervention model is conducive to reducing the disease burden, alleviating the negative emotions, and promoting the postoperative rehabilitation of patients with thyroid microwave ablation.

Stigma and related influencing factors in brain cancer patients: a cross-sectional study and parallel mediation analysis.

Patients with brain cancer and painful symptoms of the disease experience heavy pressure and negative inner experiences, leading to a sense of stigma. Therefore, this study assessed the level of stigma in patients with brain cancer and analyzed the risk factors for stigma to analyze the underlying relationships among depression, social support, low self-esteem, and stigma. Patients completed the Social Impact Scale, Self-rating Depression Scale, Rosenberg Self-Esteem Scale, Herth Hope Index, Social Support Rating Scale, and Self-Perceived Burden Scale. Multiple linear regression analysis was used to identify factors independently associated with stigma. Parallel mediation analysis was used to evaluate the mediating role of the relationship between psychoemotional factors and stigma. A multivariate linear regression analysis demonstrated significant associations between age (β = - 0.189, P = 0.002), treatment (β = 0.184, P = 0.003), self-esteem (β = - 0.128, P = 0.046), depression (β = 0.273, P < 0.001), hope (β = - 0.217, P = 0.003), and self-perceived burden (β = 0.260, P < 0.001) with brain cancer. It was observed that the social support received by brain cancer patients directly impacted their stigma (total effect, - 0.851, P = 0.001). Additionally, this relationship was influenced by depression and self-esteem through two distinct pathways. Increased stigma among brain cancer patients was found to be associated with severe depression, feelings of inferiority, diminished hope, and a heavy perceived burden. The structural equation modeling (SEM) revealed that social support negatively influenced stigma through depression and self-esteem. It is imperative to grasp patients' inner needs, implement psychological interventions, and cultivate a cancer-friendly social environment to prevent stigmatization and discrimination based on their patient status.

Development and Validation of a Community-Based Prediction Model for Depression in Elderly Patients with Diabetes: A Cross-Sectional Study.

In elderly diabetic patients, depression is often overlooked because professional evaluation requires psychiatrists, but such specialists are lacking in the community. Therefore, we aimed to create a simple depression screening model that allows earlier detection of depressive disorders in elderly diabetic patients by community health workers. The prediction model was developed in a primary cohort that consisted of 210 patients with diabetes, and data were gathered from December 2022 to February 2023. The independent validation cohort included 99 consecutive patients from February 2023 to March 2023. Multivariable logistic regression analysis was used to develop the predictive model. We incorporated common demographic characteristics, diabetes-specific factors, family structure characteristics, the self-perceived burden scale (SPBS) score, and the family APGAR (adaptation, partnership, growth, affection, resolution) score. The performance of the nomogram was assessed with respect to its calibration (calibration curve, the Hosmer-Lemeshow test), discrimination (the area under the curve (AUC)), and clinical usefulness (Decision curve analysis (DCA)). The prediction nomogram incorporated 5 crucial factors such as glucose monitoring status, exercise status, monthly income, sleep disorder status, and the SPBS score. The model demonstrated strong discrimination in the primary cohort, with an AUC of 0.839 (95% CI, 0.781-0.897). This discriminative ability was further validated in the validation cohort, with an AUC of 0.857 (95% CI, 0.779-0.935). Moreover, the nomogram exhibited satisfactory calibration. DCA suggested that the prediction of depression in elderly patients with diabetes mellitus was of great clinical value. The prediction model provides precise and user-friendly guidance for community health workers in preliminary screenings for depression among elderly patients with diabetes.

The relationship between social and psychological factors with cognitive impairment after stroke: a prospective study.

To investigate the association between social and psychological factors and the risk of cognitive impairment following acute ischemic stroke. A prospective study was conducted at Shanghai Tenth People's Hospital from June 2021 to July 2022. The study focused on social and psychological factors, which were assessed using the Social Support Rating Scale (SSRS), Self-Perceived Burden Scale (SPBS), and Hamilton Depression Scale (HAMD) within 3 days after admission to the hospital. Cognitive function was evaluated using the Montreal Cognitive Assessment at 3 months post-stroke. Logistic hierarchical regression models were used to examine the association between these three indicators and cognitive impairment following a stroke. Among these patients, cognitive function was assessed in 211 cases at the 3-month follow-up after the initial stroke event. At 3 months post-stroke, 118(55.9%) of the participants experienced cognitive impairment, while 93(44.1%) did not. The scores on the SPBS and HAMD showed significant associations with cognitive impairment at 3 months after stroke. The scores of SPBS [scores: 30~39 vs.<20 points, odds ratio (OR)=2.993 (1.135-7.896); scores: ≥40 vs.<20points, OR=7.382 (1.117-48.799); P=0.043] and the HAMD [scores: >7 vs.≤7 points, OR=3.287(1.362~7.936); P=0.008]. There were no significant associations observed between SSRS and PSCI. Early screening for depressive symptoms and focusing on self-perceived burden can be beneficial for decision support for clinicians and improve cognitive function recovery at the 3-month mark post-stroke.

Development and validation of a social alienation predictive model for older maintenance hemodialysis patients based on latent profile analysis—a cross-sectional study

BackgroundSocial alienation refers to the state of feeling isolated, helpless, and unsatisfied due to maintaining distance from others or avoiding social interaction and activities. This phenomenon is caused by a lack of social skills, social anxiety, physical health problems, and other reasons. Older maintenance hemodialysis patients are exposed to a higher risk of social alienation. However, previous studies have been performed using the total score of the scale, which does not allow the identification of the characteristics of various patient groups with different levels of social alienation. In contrast, latent profile analysis can classify individuals into different categories based on continuous observational indicators, which improves accuracy and provides a more objective assessment by accounting for the uncertainty of variables. Given the concealed nature of social alienation and the differences in characteristics and treatment measures between different profiles, developing a predictive model for social alienation in older maintenance hemodialysis patients holds significance.ObjectiveTo explore the latent profile analysis of social alienation in older maintenance hemodialysis patients and to develop and validate a predictive model for social alienation in this population.MethodsA total of 350 older maintenance hemodialysis patients were selected as the study subjects using convenience sampling. A cross-sectional survey was conducted using a general information questionnaire, the Generalized Alienation Scale, and the Self-Perceived Burden Scale. Based on the results of the Generalized Alienation Scale, a latent profile analysis was performed, followed by univariate analysis and multinomial logistic regression to develop a predictive model. The effectiveness of the predictive model was evaluated in terms of its authenticity, reliability, and predictive ability.ResultsThree hundred nineteen valid questionnaires were collected. The social alienation of older maintenance hemodialysis patients based on latent profile analysis were divided into three profiles, which were named the low/medium/high-symptom groups, comprising 21%, 38.9%, and 40.1% of participants, respectively. Based on male, monthly social activity hours, Age-Adjusted Charlson Comorbidity Index, dialysis age, and Self-Perceived Burden Scale, a predictive model of social alienation for older maintenance hemodialysis patients was developed, and the Hosmer–Lemeshow tests showed no statistical significance (P > 0.05). The model has high predictive efficiency in authenticity, reliability and predictability.ConclusionOlder maintenance hemodialysis patients exhibited moderate to high levels of social alienation. The latent profile analysis based method was used to divide patients into low/medium/high-symptom profiles, and the predictive model demonstrates excellent authenticity, reliability, and predictability.

Self-Efficacy's Mediating Role in the Relationship Between Self-Perceived Burden and Health-Related Quality of Life Among Older-Adult Inpatients in China: A Cross-Sectional Study.

This study investigated the current state of self-efficacy and the association between self-perceived burden (SPB) and health-related quality of life (HRQoL) among Chinese older-adult inpatients. A cross-sectional study was conducted using convenience sampling to survey Chinese older-adult inpatients. Data regarding demographic characteristics, self-efficacy, SPB, and HRQoL were collected. Pearson's correlation analysis was used to examine the correlations among the research variables. SPSS® Statistics V26.0, and SPSS® PROCESS Macro Model 4 were used to analyze the available data. The bootstrap method was used to analyze the mediating role of self-efficacy. Survey participants included 514 older-adult inpatients, with a mean age of 72.28±5.58 years. Self-efficacy (r=0.471, p<0.01) was positively correlated with HRQoL, whereas self-efficacy (r=-0.891, p<0.01) and HRQoL (r=-0.516, p<0.01) were negatively correlated with SPB. The mediating effect analysis revealed that self-efficacy either completely or partially mediated the effect of SPB on HRQoL, with the indirect effect accounting for 30.2% of the total. This study provides a mediating model suggesting that SPB exerts both direct and indirect effects on the HRQoL of older-adult inpatients through self-efficacy.

Understanding caregiver burden from multiple perspectives: dyadic agreement between caregiver and care recipient.

Caregiver burden (CB) is typically self-assessed by caregivers. However, an emerging concept is assessment of CB by the recipients of care, i.e., the patient. The specific objectives are (1) to assess the level of agreement between care recipients' and caregivers' view on CB, across financial, physical, emotional, and social domains; (2) to explore two care recipient perspectives: their self-perceived burden (CR-SPB), and their interpretation of the caregiver's view (Proxy-CB). Data were collected from 504 caregiver-care recipient dyads in the U.S. using an online Qualtrics panel. The survey assessed caregiver burden using CarerQol and newly developed items. The level of agreement between responses was quantified using weighted kappa (κ) coefficients for individual items and intraclass correlation coefficients (ICC) for index/summary scores. The average age of caregivers was 49.2years, and 62.7years for care recipients. Dyads most commonly consisted of spouses/partners (34.5%); 68.3% lived together. Proxy-CB aligned more closely with caregiver's view, with moderate to substantial agreement across CB domains (fromκ = 0.48 for emotional to κ = 0.66 for financial). In the same perspective, the CarerQol-7D Index showed moderate agreement (ICC = 0.58) and the summary score of CB items substantial agreement (ICC = 0.76). Care recipients generally overestimated CB in the Proxy-CB perspective, while they underestimated it in the CR-SPB perspective. Results demonstrate there is a difference between perspectives. Strong agreement in Proxy-CB perspective suggests that care recipients can potentially substitute for caregivers depending on the domain. CR-SPB agrees less with caregivers and may provide complementary information.

Solution-Focused Group Counseling on Mental States in Hemodialysis Patients with Anxiety.

Hemodialysis patients usually suffer from anxiety due to physical and social factors, which belongs to a kind of psychological disorder, easily contributing to the decrease of patients' adherence to the treatment, and seriously affecting the patients' health status and quality of life. Solution-focused group counseling (SFGC) is a kind of psychotherapy proven to improve emotional problems in many fields. Still, the application of this therapy is rare in medical situations. This retrospective study aims to analyze the application of SFGC and probe into the effects on mental states in hemodialysis patients with anxiety. From January 2022 to February 2023, 212 patients with hemodialysis and anxiety admitted to our hospital were selected, and 9 patients who did not meet the inclusion criteria were excluded. Finally, 203 patients were included in this retrospective study. According to different clinical management methods, 102 patients receiving routine management were classified as the control group (CG), and 101 patients receiving SFGC on the basis of routine management were included in the observation group (OG). The scores of the self-perceived burden scale (SPBS), medical coping modes questionnaire (MCMQ), and self-rating anxiety scale (SAS) of the two groups were collected. The data collected were calculated and processed by software SPSS 26.0, and the effects of different managements on the mental states of patients with hemodialysis and anxiety were compared. After management, the scores of SPBS in both groups were lower than those before management, and the score in OG was significantly lower than the CG (p < 0.001). After management, the confrontation scores increased, the avoidance and resignation scores decreased in the MCMQ of the two groups, and the scores in the OG changed significantly (p < 0.001). The SAS scores of the two groups after management were significantly lower than those before management, and the OG score was significantly lower than the CG (p < 0.001). SFGC has a positive effect on the mental states of patients with hemodialysis and anxiety, which is worthy of further clinical study.

Association between personality traits and psychological distress among postmenopausal women with coronary heart disease: A cross-sectional survey and mediation analysis.

Postmenopausal women with negative personality characteristics are at an increased risk of psychological disorders, yet little is known about the mechanism underlying the relationship between type D personality and psychological distress in postmenopausal women with coronary disease. This study assessed the mediating roles of perceived social support and self-perceived burden in the relationship between type D and psychological distress based on the equity theory and stress-buffering model. Demographic characteristics, type D, psychological distress, perceived social support, and self-perceived burden were completed by 335 participants with self-reported questionnaires using a cross-sectional design in Southeast China. The results revealed that perceived social support and self-perceived burden both separately and serially mediated the relationship between type D personality and psychological distress. Effective intervention strategies aimed at improving perceived social support or reducing self-perceived burden may be beneficial in reducing psychological distress.

Mediating the Role of Perceived Social Support Between Frailty and Self-Perceived Burden in Elderly Patients with Diabetes.

To explore the mediating effects of perceived social support between frailty and self-perceived burden (SPB) in elderly patients with diabetes and to provide a theoretical basis for reducing that burden. A total of 169 elderly patients with diabetes who were hospitalised in the endocrinology department of a third-class hospital in Wuxi between May 2020 and July 2022 were included in this study using the convenience sampling method. Patients were assessed by the general information questionnaire, the Chinese version of the Tilburg frailty inventory (TFI), the Self-Perceived Burden Scale (SPBS) and the Perceived Social Support Scale (PSSS). The SPSS 22.0 software was used for Pearson's correlation analysis and multiple linear regression analysis. Model four of the SPSS PROCESS was used for mediating the effect analysis. The SPBS of elderly patients with diabetes was positively correlated with the TFI (P < 0.01) and negatively correlated with the PSSS (P < 0.01). The results of the Bootstrap test showed that the mediating effect of the PSSS on the relationship between the TFI and the SPBS in elderly patients with diabetes was 0.296 (95% CI: 0.007, 0.066), and the mesomeric effect accounted for 17.3% of the total effect. The debilitation of elderly patients with diabetes can be reduced by decreasing their SPB through perceived social support. This can be achieved through comprehensive interventions by nurses.

Pain intensity and self-perceived burden mediate the relationship between family functioning and pain catastrophizing in patients with neuropathic pain.

This cross-sectional study aimed to investigate the relationship between family functioning, pain intensity, self-perceived burden, and pain catastrophizing. Moreover, we also wanted to explore the multiple mediating roles of pain intensity and self-perceived burden. From October 2022 to March 2023, 252 Chinese people with neuropathic pain completed face-to-face questionnaires to assess family functioning, pain intensity, self-perceived burden, and pain catastrophizing. Data analysis was done using descriptive statistics and a structural equation model. The results showed better family functioning was significantly associated with more intense pain, less self-perceived burden, and less pain catastrophizing. Mediation analysis showed that family functioning could indirectly affect pain catastrophizing through pain intensity and self-perceived burden in addition to a direct effect on pain catastrophizing. Moreover, the mediating variable of pain intensity played a masking role. These findings suggest that good family functioning can effectively reduce the self-perceived burden and pain catastrophizing in patients with neuropathic pain. However, family functioning cannot show its maximum effectiveness, and it may be necessary to construct a model of family functioning suitable for patients with neuropathic pain in the future.

Existential distress and associated factors in advanced cancer patients: A cross-sectional study.

Advanced cancer patients often experience existential distress (ED). However, the factors associated with ED remain unclear. This study investigated the current state of ED and identified the associated factors in Chinese patients with advanced cancer. A cross-sectional study was conducted among 352 advanced cancer patients from 3 tertiary hospitals in Fujian, China. Participants were invited to complete the Existential Distress Scale, Number Rating Scale, Self-Perceived Burden Scale, Quality of Life Concerns in the End-of-Life Questionnaire, and Hospital Anxiety and Depression Scale. This study aimed to investigate the level of existential distress among advanced cancer patients in China and identify the associated factors. A total of 352 advanced cancer patients were recruited for this study. The average score for ED was 8.48 ± 7.12 among the advanced cancer patients. Multiple regression showed that the associated factors included depression (β = 0.32, p = 0.000), self-perceived burden (SPB) (β = 0.18, p = 0.001), the presence of a spouse (β = -0.10, p = 0.050), and reception of government subsidies (β = 0.17, p = 0.001). The factors accounted for 30.1% of the total variance in ED (F = 8.472, p < 0.001). Among the advanced cancer patients queried, ED was found to be positively influenced by depression, SPB, and reception of government subsidies and negatively influenced by the presence of a spouse. Depression was the most important risk factor, and thus future ED interventions should target depression.

Care recipient self-perceived burden: Perspectives of individuals with chronic health conditions or personal experiences with caregiving on caregiver burden in the US

IntroductionSelf-perceived burden refers to the perceived impact of a care recipients’ illness and care needs on their caregiver(s). This study aimed to: 1) examine the components of caregiver burden from a perspective of people with chronic health conditions, 2) explore the extent to which people consider caregiver burden important in their healthcare decision-making, and 3) develop a global item to capture the essential elements of self-perceived burden. MethodsSemi-structured interviews using cognitive debriefing were conducted with US-based individuals with chronic conditions, informal caregivers and social care users between October and December 2018. Components of caregiver burden were organized within a concept analysis framework. The preferred wording for a global self-perceived burden item was explored for face and content validity using five candidate items. Interviews were transcribed verbatim and analyzed using thematic analysis. ResultsTotal of 19 participants, aged 23–76, completed the interviews. Study identified three main antecedents of caregiver burden: caregiving situation, financial resources, and sociocultural environment. Attributes included physical, emotional, financial, and social aspects. Consequences were financial hardship and decreased health-related quality of life. Most participants distinguished “burden” from related concepts such as “bother” and “stress”. “I feel like a burden to my family/friends” with a severity response option scale, was perceived to broadly encompass the construct. ConclusionSelf-perceived burden was identified as a highly relevant concept in healthcare decision-making for US participants. A global self-perceived burden item can provide a valuable summary measure to inform medical decision-making and potentially capture spillover effects of patient care on family and caregivers.

Post-surgery financial toxicity and its influencing factors in colorectal cancer care: A cross-sectional study

PurposeThis study aimed to investigate the influence factors of financial toxicity experienced by colorectal cancer patients after surgery. The results will provide deep insights for developing effective intervention strategies to address this common issue of colorectal cancer care. MethodsIn this cross-sectional study, we recruited 213 postoperative patients with colorectal cancer from February 2023 to July 2023 in two major public hospitals. Patients completed the General Information Questionnaire, Comprehensive Scores for Financial Toxicity (COST), Self-perceived Burden Scale (SPBS), Family Resilience Questionnaire (FaREQ), and Social Support Rating Scale (SSRS). A multiple linear regression model was used to investigate the influence factors of financial toxicity. ResultsThe mean score of financial toxicity was medium (18.91 ± 7.90) in this study. Financial toxicity score was negatively correlated with self-perceived burden (r = −0.333, P < 0.01) and positively associated with family resilience (r = 0.365, P < 0.01) and social support (r = 0.388, P < 0.01). Via multiple linear regression analysis, we identified seven significant factors associated with financial toxicity, including family income [(95 %CI: 1.075–3.123); P = 0.000], self-perceived burden [(95 %CI: 0.300∼-0.038); P = 0.012], stoma [(95 %CI: 5.309∼-1.682); P = 0.000], social support [(95 %CI:0.058–0.407); P = 0.009], cancer stage [(95 %CI: 2.178∼-0.170); P = 0.022], postoperative duration [(95 %CI: 1.900∼-0.332); P = 0.005], and family resilience [(95 %CI: 0.028–0.203); P = 0.010]. ConclusionsFinancial toxicity was prevalent among postoperative colorectal cancer patients. Additional support and early interventions should be given to high-risk patients, including those with stomas, advanced disease stages, or experiencing longer postoperative duration. Apart from demographic factors, we identified that self-perceived burden, family resilience, and social support were also associated with financial toxicity, providing a new perspective for developing effective strategies against financial toxicity.