On 20th January 2020, the first COVID‐19 case was reported in Shanghai, China. As of 12th March 2020, 344 cases with laboratory‐confirmed COVID‐19 infection have been detected in Shanghai, of which three died, 321 patients are discharged, 20 patients still receive ongoing treatments (Shanghai Municipal Health Commission, 2020).
We aimed to examine relationship between hours lying down per day, as a proxy for sedentary behaviour and risk of diabetes in young and middle-aged adults, and to assess if leisure-time physical activity and body mass index (BMI) modified this relationship.
A population-based prospective cohort study.
The cohort included 17 058 diabetes-free adults, at an age of 20–55 years in 1995–1997, who were followed-up to 2006–2008.
Incident diabetes was defined by self-report of diabetes or non-fasting glucose levels greater than 11 mmol/L at the follow-up.
Multivariable logistic regression models were used to obtain OR with 95% CI for risk of diabetes by the categories of hours lying down (≤7, 8 and ≥9 hours/day).
362 individuals (2.1%) developed diabetes during an average of 11-year follow-up. Individuals who reported lying down ≥9 hours/day had an adjusted OR of 1.35 (95% CI 1.01 to 1.80) for incident diabetes compared with those lying down 8 hours/day. Lying down ≤7 hours/day was not associated with the risk of diabetes. In analysis stratified by physical activity, the ORs associated with lying down ≥9 hours/day were 1.41 (95% CI 1.05 to 1.90) and 0.90 (95% CI 0.23 to 3.55), respectively, among the less active and highly active individuals (pinteraction=0.048). There was little evidence that the association differed by BMI status (pinteraction=0.62).
Prolonged hours lying down per day was associated with an increased risk of diabetes in young and middle-aged adults. The positive association appeared to be modified by physical activity but not by BMI.
Persistence of attention deficit hyperactivity disorder (ADHD) into adolescence is a significant burden to patients. Clinical guidelines recommend non-pharmacological therapies, but the evidence to support this recommendation is sparse. This study aims to evaluate the effect of a 12-week group cognitive–behavioural therapy (CBT) programme for adolescents with ADHD aged 14–18 years, who still have impairing symptoms after treatment with medication. We will study the effect of the treatment on ADHD symptoms and examine moderators and mediators of the effect of the treatment on ADHD.
We conduct a randomised controlled trial of CBT group therapy in adolescents with ADHD recruited from child psychiatric outpatient units in Mid-Norway. 99 adolescents who met inclusion criteria and consented to participation have been randomised to a 12-week group intervention or to a control group receiving treatment as usual. Assessments are made at admission to the clinic, preintervention, postintervention and at a 9-month follow-up, obtaining adolescent, parent and teacher reports. Clinicians blinded to group allocation rate all participants as to their functioning preintervention and at the two postintervention assessment points. The primary outcome is change in symptom scores on the ADHD Rating Scale-IV.
The Regional Committee for Medical and Health Research Ethics in South East Norway approved the study protocol (2015/2115). We will disseminate the findings in peer-reviewed publications and conference presentations, to user organisations and at courses attended by families and professionals. Two PhD students will publish and defend dissertations relating to the study. Planned publications include primary and secondary outcomes and patient satisfaction with the treatment. Furthermore, we plan to publish a manual of CBT group therapy in adolescent ADHD to benefit treatment of patients in Norway and elsewhere.
To perform the cross-cultural adaption of the Breast Cancer Awareness Measurement (BCAM) and to test its psychometric properties among Chinese women.
This is a cross-sectional study.
This study was conducted in communities, schools and institutions in Changchun, Jilin Province, China.
A total of 328 women voluntarily participated in and completed the Chinese version of the BCAM (C-BCAM), resulting in an effective response rate of 91.1%.
Psychometric properties, including item analysis (the extreme group comparison and item-total correlations), content validity (item-level content validity index (I-CVI) and scale-level content validity index (S-CVI)), construct validity (exploratory factor analysis (EFA) and confirmatory factor analysis (CFA)) and internal consistency (Cronbach’s α and test–retest reliability), were measured.
The C-BCAM has excellent internal consistency (Cronbach’s α=0.90), with alpha coefficients of 0.88, 0.84 and 0.94 for its three domains. The test–retest reliability coefficient was 0.72. The I-CVI ranged from 0.86 to 1.00, and the S-CVI was 0.92. CFA showed that the three-factor model explained 51.56% of the total variance, with a good model fit (likelihood ratio 2/df=1.86, incremental fit index=0.94, comparative fit index=0.94, goodness-of-fit index=0.84, adjusted goodness-of-fit index=0.80, standardised root mean square error of approximation=0.06 and root mean square residual=0.05).
The C-BCAM has satisfactory validity and reliability and is a culturally appropriate and reliable tool for evaluating breast cancer awareness among Chinese women. This reliable instrument can help researchers and health professionals evaluate women’s knowledge about the symptoms and risk factors of breast cancer and identify their barriers to seeking medical help. It also helps healthcare providers identify women with poor breast cancer awareness and encourage them to perform screening practice.
To identify and evaluate available evidence on the effectiveness of character strengths‐based intervention on the psychological well‐being of patients with chronic illnesses.
A systematic review with meta‐analysis.
Six electronic databases, including PubMed, EMBASE, EBSCO (CINAHL® and MEDLINE), Web of Science and PsycINFO, were searched from inception to December 2018.
The quality appraisal of evidence and summary of studies were undertaken following Joanna Briggs Institute critical appraisal checklists and the standard guidelines of Preferred Reporting Items for Systematic Reviews and Meta‐Analyses statement. Meta‐analysis was conducted according to Cochrane methods using RevMan 5.1.
Clinical studies on the character strengths‐based intervention for patients with chronic illnesses are limited. Eight studies involving 692 patients were identified and critically appraised in this review. Meta‐analysis results for three comparable studies indicated that character strengths‐based intervention was effective in improving the self‐esteem of patients with chronic illnesses and it significantly enhanced their general self‐efficacy and reduced their depression.
The findings support the effectiveness of character strengths‐based intervention on improving the psychological well‐being of patients with chronic illnesses. However, caution is needed in interpreting these results due to limited studies and heterogeneity across studies. Further research is needed to provide strong evidence on the applicability of the intervention in clinical practice.
This rigorous review provided current evidence on using character strengths‐based intervention to improve the psychological well‐being of patients with chronic illnesses. character strengths‐based intervention provides a creative approach for patients because it may help improve their well‐being, happiness, self‐esteem and self‐efficacy, as well as reduce depression and mental symptoms. Studies in different groups of patients suffering from chronic illnesses are recommended in the future. The character strengths‐based intervention should be replicated in various inpatient facilities and include a larger and a more ethnically and socioeconomically diverse sample.
To evaluate the efficacy and safety of human amniotic membrane (HAM) allograft in treating chronic diabetic foot ulcers (DFUs), a comprehensive search of randomised controlled trials in MEDLINE, EMBASE, PubMed, CENTRAL and Web of Science was conducted to December 7, 2019. Two reviewers independently screened the studies, extracted data, and evaluated the quality of studies. The primary outcome was the proportion of complete healing. The secondary outcomes were mean time to complete healing and adverse events. Statistical analyses were performed using RevMan 5.3. We identified 257 articles, of which 7 articles (465 participants) were included in the meta‐analysis. The proportion of complete wound healing in HAM plus standard of care (SOC) group was 3.88 times as high as that in SOC alone (RR: 3.88 [95% CI: 2.34, 6.44]) at 6 weeks, and 2.01 times at 12 weeks (RR: 2.01 [95%CI: 1.45, 2.77]). The intervention group had a significantly shorter time to complete healing (MD: −30.33 days, [95% CI: −37.95, −22.72]). The number needed to treat within 6 weeks was 2.3 ([95% CI: 1.8, 3.1]). No significant difference was shown in adverse events. Results were consistent in a sensitivity analysis. Hence, HAM plus SOC is effective and safe in treating chronic DFUs.
Considering the high incidence of postoperative complications of open fracture, management of this injury is an intractable challenge for orthopaedist, and surgical site infection (SSI) is the devastate one. Screening for high‐risk patients and target them with appropriate interventions is important in clinical practice. The aim of this study was to identify modifiable factors that were associated with SSI following operative treatment of open fractures. This retrospective, multicentre study was conducted at three hospitals. A total of 2692 patients with complete data were recruited between June 2015 and July 2018. Demographic characteristics, operation relative variables, additional comorbidities, and biochemical indexes were extracted and analysed. Receiver operating characteristic analysis was performed to detect the optimum cut‐off value for some variables. Univariate and multivariate logistic analysis models were performed, respectively, to identify the independent risk factors of SSI. The overall incidence of SSI was 18.6%, with 17.0% and 1.6% for superficial and deep infection, respectively. Results of univariate and multivariate analyses showed the following: fracture type, surgical duration > 122 minutes, anaesthesia time > 130 minutes, intraoperative body temperature < 36.4°C, blood glucose (GLU) > 100 mg/dL, blood platelet (PLT) < 288 × 109, and white blood cells (WBC) > 9.4 × 109 were independent risk factors of postoperative wound infection following operative treatment of open fractures. Six modifiable factors such as surgical duration > 122 minutes, anaesthesia time > 130 minutes, intraoperative body temperature < 36.4°C, GLU > 100 mg/dL, PLT < 288 × 109, and WBC > 9.4 × 109 play an important role in the prevention of SSI, and these factors should be optimized perioperatively.
To evaluate the effectiveness and safety of Xin Huang Pian skin‐patches for patients with acute gouty arthritis.
In China, patients with acute gouty arthritis benefit from skin‐patcheses with herbal medicines. But the clinical effects of skin‐patches with Xin Huang Pian are rarely reported.
A Randomized, Double‐Blind, Active‐Controlled Trial.
The trial was performed from January 2015 ‐ December 2018 at the First Affiliated Hospital of Sun Yat‐sen University in China. It was conducted with one intervention group (skin‐patches of Xin Huang Pian, N =30) and one active control group (skin patches of Diclofenac Diethylamine Emulgel, N = 31). Participants and study investigators were both blinded to the treatment assignments. The primary outcomes were the improvement of joints' symptoms. The secondary outcomes were changes in white blood cells, erythrocyte sedimentation rate and C‐reactive protein.
Skin‐patches of Xin Huang Pian showed quick effect on decreasing joint pain at 3rd day of treatment. Wherever only at 7th day, Diclofenac Diethylamine Emulgel markedly lowered joint pain. Xin Huang Pian also showed superior effect than Diclofenac Diethylamine Emulgel on improving joint swelling and range of motion and decreasing the levels of C‐reactive protein and erythrocyte sedimentation rate. No adverse reactions were observed in skin‐patches of Xin Huang Pian treatment.
Skin‐patches of Xin Huang Pian appeared to be safe and efficacious for relieving joint symptoms in patients with acute gouty arthritis. The mechanism might be associated with the decreased levels of C‐reactive protein and erythrocyte sedimentation rate.
•Skin‐patcheses with Xin Huang Pian are more effective than Diclofenac Diethylamine Emulgel on improving joint pain, swelling and range of motion.
•Xin Huang Pian treatment showed superior effects compared with Diclofenac Diethylamine Emulgel on decreasing levels of C‐reactive protein and erythrocyte sedimentation rate.
•Patients with acute gouty arthritis may benefit from skin‐patches of Xin Huang Pian for effective relief from joint pain and swelling.
The purpose of this study was to validate patient's primary caregiver and their nurse's perception of patient discharge readiness assessment and their association with postdischarge medical consumption.
The study employed a descriptive research, prospective longitudinal study design.
The study was performed in a ward of a medical centre in Taipei, Taiwan, from June 2017–May 2018. Obtained data were analysed using an independent t test, one‐way ANOVA and logistic regression approach.
The number of comorbidities and the number of days of hospital stay were positively associated with post discharge emergency room visits. Caregiver readiness for hospital discharge had significant negative correlation with patient's 30‐day readmission. Both caregiver and nurse readiness for the hospital discharge scale score were not factors associated with the patients' 30‐day emergency room visit.
Based on the research findings, to assess the discharge readiness as perceived by caregivers at patients' discharge is recommended.
Caregiver and nurse scores on readiness for hospital discharge showed a significant positive correlation. The higher the score of a caregiver's readiness for a patient's hospital discharge, the lower the 30‐day readmission rate. Family‐centred care enables patients to safely pass though the transition phase from hospital to community and reduces the postrelease consumption of medical resources. The discharge readiness perceived by caregivers should be included in any decision‐making.
by Sheng Feng Lin, Shui-Yi Tung, Kuo-Liang Wei, Chien-Hung Chen, Tsung-Hui Hu, Chien Heng Shen, Te-Sheng Chang, Wei-Ming Chen, Chih-Wei Yen, Jing-Houng Wang, Chao-Hung Hung, Sheng-Nan LuBackground
Hepatitis C virus core antigen (HCV Ag) assay has been proposed as a more economical alternative to HCV RNA detection. This study aimed to investigate the clinical utility of HCV Ag assay in the monitoring of direct-acting antivirals (DAAs) for chronic hepatitis C patients.Methods
We analyzed serum samples from 110 patients treated with paritaprevir/ritonavir, ombitasvir, and dasabuvir (PrOD) with or without ribavirin. The levels for both HCV Ag and HCV RNA assessed by COBAS TaqMan HCV (CTM) Test or Abbott RealTime HCV (ART) assay were evaluated at baseline, week 2, 4, and 12 during treatment and 12 weeks after completion.Results
Baseline HCV Ag levels showed good correlations with HCV viral load (r = 0.879; pp = 0.074). The concordance of HCV Ag and HCV RNA undetectability was significantly better in CTM test than in ART assay at week 2 (p = 0.003) and week 4 (p = 0.003). A sustained viral response 12 weeks off therapy (SVR12) was achieved in 108 patients (98%); the HCV Ag assay identified 99% of these patients. Both undetectability of serum HCV Ag and HCV RNA had high positive predictive value at week 2 (98% vs. 100%) and at week 4 (97% vs. 99%) in predicting SVR12.Conclusions
HCV Ag assay may be a feasible alternative to HCV RNA for the determination of SVR12 in patients treated with DAAs.
Restless legs syndrome (RLS) is a common neurological sensorimotor disorder among patients with end stage renal disease. This clinical trial aimed to provide evidence on the efficacy and safety of pramipexole in patients with uremic RLS receiving peritoneal dialysis (PD).
This is a 12-week, multicentre, randomised, double-blind, placebo-controlled clinical trial. In total, 104 patients with uremic RLS receiving PD will be enrolled from four hospitals and randomly assigned in a 1:1 ratio to either placebo or pramipexole. We will determine the efficacy of pramipexole in the improvement of International RLS Study Group Rating Scale as the primary outcome, while responder rates for other RLS scales at week 12, change from baseline to week 12 for psychological status, sleep disorder and quality of life and blood pressure represent the secondary outcomes.
The study was approved by the ethics committees of Peking University First Hospital, Xinqiao hospital of Army Medical University, Cangzhou Center Hospital and Peking University Shenzhen Hospital. The results will be disseminated in peer-reviewed journals.
To investigate the effects of the willingness to live in elder care institutions associated with individual factors, family environment and the community environment in the elderly in China.
Heilongjiang Province, China.
A total of 1003 elderly people were selected through multistage sampling in Heilongjiang Province.
A multistage, stratified sampling design was employed. Differences in health status, family environment and community environment of the respondents were compared with the t-test and 2 test. Logistic regression analysis was performed to assess key determinants of willingness to live in institutions.
This study showed that 45.4% of respondents were willing to live in elder care institutions in the future. Factors influencing willingness to live in elder care institutions were age, house ownership, living with spouse and children, disease caregivers and availability of home healthcare services. The elders who had no property (OR=2.37, 95% CI 1.750 to 3.200, p
These results suggest that the willingness to enter elder care institutions is affected by individual, family environmental and community environmental factors. We should vigorously develop community-centred intensive home-based elder care services by improving the quality and availability of home health services by expanding investment in the community.
This study aimed to characterise rheumatic manifestations and autoantibodies in 432 patients diagnosed with infective endocarditis (IE) in Shanghai.
A retrospective study was conducted in Ruijin Hospital from 1997 to 2017. The clinical and laboratory characteristics of a total of 432 patients were analysed. In addition, the differences between patients with positive and negative antineutrophil cytoplasmic antibodies (ANCA) and antiphospholipid (aPL) antibodies as well as the survival rates of these patients were compared.
A total of 432 patients, including 278 male patients and 154 female patients, were included. The mean age of the patients was 46±16 years. A total of 346 patients (80%) had cardiac surgery, and 55 patients (13%) died in the hospital. Among the IE patients, 104 were tested for either ANCA or aPL and were analysed in different groups. Twenty-one (24%) positive ANCA patients were proteinase 3-ANCA positive. Compared with the ANCA-negative group, patients with positive ANCA had higher IgM (p=0.048), lower haemoglobin (p=0.001) and a higher likelihood of arthritis (p=0.003). Twenty-one (40%) aPL-positive patients had a higher erythrocyte sedimentation rate than was found in the aPL-negative group (p=0.003). In addition, the survival rate of the ANCA-positive IE patients was lower (p=0.032) than that of the ANCA-negative group, while there was no difference between patients with or without aPL antibodies (p=0.728).
This study supports the claim that rheumatic manifestations and autoantibodies are frequently present in patients with IE and might lead to early misdiagnosis. Physicians should pay more attention to the measurement of autoantibodies in these patients.
To evaluate physician risk-benefit preferences and trade-offs when making chemotherapy decisions for patients with non-small cell lung cancer (NSCLC).
A discrete choice experiment (DCE).
Tertiary hospitals in Beijing, Shanghai, Guangzhou and Chengdu of China.
The participants were 184 physicians (mean age of 37 years) with more than 1 year of NSCLC chemotherapy practice.
The DCE survey was constructed by six attributes: progression-free survival (PFS), disease control rate (DCR), risk of moderate side effects, risk of severe side effects, mode of administration and out-of-pocket costs. Physicians’ relative preferences and trade-offs in patient out-of-pocket costs for each attribute level were estimated using a mixed logit model, and interaction terms were added to the model to assess preferences variation among physicians with different sociodemographic factors.
Physicians had the strongest preferences for improvements in PFS, followed by reducing the risk of severe side effects. The DCR, risk of moderate side effects and mode of administration were ranked in decreasing order of importance. There was little variation in preferences among physicians with different sociodemographic characteristics. Physicians were willing to trade $4814 (95% CI $4149 to $5480) of patient out-of-pocket costs per month for a chemotherapy that guaranteed 11 months of PFS, followed by $1908 (95% CI $1227 to $2539) for reducing the risk of severe side effects to 2%.
With regard to chemotherapy for patients with NSCLC, prolonging PFS, reducing severe and moderate side effects were primary considerations for physicians in China. The mode of administration and treatment costs significantly influenced physicians’ therapeutic decision. The current findings could add some evidence to inform NSCLC chemotherapy implementation and promote shared decision-making.
Hypogonadism in men is related to the deterioration of general health. However, the association between lipid overaccumulation and ageing-related hypogonadism remains an undetermined concept. We aimed to provide an insight into the possible links between the lipid accumulation product (LAP) and late-onset hypogonadism (LOH).
Sun Yat-sen Memorial Hospital of Sun Yat-sen University.
We included a population sample of 997 subjects aged 40 years or older.
The LAP was calculated by gender-specific equations using waist circumference (WC) and triglyceride (TG). LOH was defined by the presence of androgen deficiency symptoms and low serum total testosterone levels.
The prevalence of LOH was 9.4% in this population and gradually increased according to increasing LAP quartiles. Compared with subjects without LOH, ageing men with LOH had higher body mass index, WC, systolic blood pressure, percentage of subjects currently smoking, TG and follicle stimulating hormone and lower low-density lipoprotein cholesterol and sex hormone binding globulin. In multivariate logistic regression analysis, the adjusted ORs of LOH for increasing LAP quartiles 1–4 were 1.00 (reference), 1.10 (95% CI 0.45–2.69), 2.15 (95% CI 0.93–4.94) and 3.83 (95% CI 1.73–8.45), respectively.
Body lipid accumulation evaluated by the LAP is independently associated with the prevalence of LOH in middle-aged and elderly Chinese men.
by Wesuk Kang, Tao Tong, Taesun ParkChronic stress and continually high glucocorticoid levels can induce muscle atrophy. Unfortunately, there is a lack of appropriate animal models for stress-induced muscle atrophy research. Corticotropin releasing factor-overexpressing (CRF-OE) mice are a transgenic model of chronic stress that exhibit increased plasma corticosterone levels and Cushing’s syndrome; however, the skeletal muscle pathology of the CRF-OE mouse has not been well studied. We observed that male, 19-week-old CRF-OE mice had significantly lower skeletal muscle mass, average cross-sectional myofiber area, and total muscle protein content than their wild type (WT) littermates. Muscle function determined by grip strength, wire-hang, and open field tests showed that 19-week-old male CRF-OE mice had impaired physical ability. Additionally, the skeletal muscles of CRF-mice exhibited decreased expression of factors involved in the IGF-1/AKT/mTOR protein synthesis pathway and increased ubiquitin proteasome pathway activity compared to the WT control mice. In conclusion, 19-week-old CRF-OE mice display numerous features of muscle atrophy and thus serve as a model for investigating stress-induced muscle atrophy and interventions to target the deleterious effects of stress on skeletal muscle.
Nurse leaders who are mothers are at significant risk for experiencing stress, burnout, and occupational fatigue. Authentic Connections (AC) Groups is an intervention shown to be effective for fostering resilience among at‐risk moms, including physicians; however, it has not previously been tested with nurse leaders.
Our aims were to test the feasibility and acceptability of the AC Groups intervention with nurse leader mothers and examine its effects on participant resilience, as measured by increased self‐compassion and decreased distress, depression, perceived stress, and burnout.
A randomized controlled trial design was employed for this pilot study, with 36 nurse leaders at Mayo Clinic. AC participants attended group sessions for an hour per week for 12 weeks. Control group members were provided 1 hr per week of free time over 12 weeks. Multiple self‐report psychological measures were completed at baseline, post‐intervention, and 3‐month follow‐up.
The AC Groups intervention was feasible and well‐received by nurse leaders. Session attendance rates averaged 92%. Despite the small n’s, repeated measures of Analysis of Variance showed significantly greater improvements (p < .05) for participants in the AC Groups than control condition for depression, self‐compassion, and perceived stress, with large effect sizes ( 0.18–0.22). In addition, effect sizes for anxiety and feeling loved approximated the moderate range ( 0.05 and .07).
The AC intervention shows promise as a feasible intervention for mitigating nurse leader mothers’ stress by positively impacting indices of well‐being, including depression, self‐compassion, and perceived stress. Given, the prevalence of stress and burnout among nurse leaders, the effectiveness of the AC intervention in fostering resilience in this population has significant implications for research and practice. Further research is warranted with larger numbers from multiple sites, longer follow‐up periods, and biomarker measures of stress.
To examine the level of self‐care behaviours among patients with diabetic foot ulcers and identify factors related to their self‐care behaviours.
This study focused on the self‐care behaviours of patients diagnosed with diabetic foot ulcers, a complication of diabetes.
A cross‐sectional study design was adopted.
From July–August 2018, 131 outpatients and inpatients with diabetic foot ulcers were given a survey questionnaire regarding self‐care behaviours and expected related factors at two Korean hospitals. In this study, self‐care behaviours were diabetes management and diabetic foot care. Demographic, disease‐related and laboratory characteristics were collected. The data were analysed in terms of descriptive statistics, a t test, ANOVA, Pearson's correlation coefficient and stepwise multiple regression. STROBE checklist was used as the guideline for this study.
Moderate levels of self‐care behaviours were found. The stepwise multiple regression analysis revealed that diabetes management was significantly related to perceived family support, experience of diabetic education, perceived stress, a problem‐focused coping style, experience of hospitalisation and comorbidity. Furthermore, diabetic foot care was significantly associated with the experience of diabetic education, perceived family support, and serum level of erythrocyte sedimentation rate and haemoglobin A1C.
Perceived family support was the main factor affecting diabetes management, and diabetic foot care was greatly affected by the experience of diabetic education. It is necessary to develop diabetes education programmes and nursing interventions to increase family support to improve the self‐care behaviours of patients with diabetic foot ulcers.
Self‐care behaviours among patients with diabetic foot ulcers are important, as they affect healing of the wound and the quality of life. Further development of family‐based diabetes education or programmes is recommended to promote the self‐care behaviours of patients with diabetic foot ulcers.
To explore the lived experiences of family caregivers of epidermolysis bullosa (EB) patients.
Patients with EB need long‐term care. Their family experiences physical and mental stress while proving that care. However, very little research has explored the family caregivers' actual lived experiences when caring for EB patients.
This is a qualitative research using the phenomenological approach.
Data were collected with the assistance of the Taiwan Foundation for Rare Disorders (TFRD). Interviews were conducted between 2015 and 2017 with primary family caregivers (n = 10) who had cared for EB patients for at least five years. Data were analysed using Colaizzi's (1978) seven‐step phenomenological method. COREQ reporting guidelines were utilised.
Four themes and eleven subthemes emerged after data analysis: (a) transformation and helplessness: changing expectations and helplessness associated with the rare, unknown disease; (b) mother's responsibility: mothers loving and protecting their children, surviving through adversity and challenges and self‐experiencing a child's pain; (c) physical and mental fatigue experienced by the whole family: physical and mental exhaustion, and unbalanced lives; and (d) adjustment and social support: providing mutual assistance to mitigate adversity, hopeful search for treatments, the importance of patient associations and rare disease foundations, and social assistance requirements.
Family caregivers experience many challenges when caring for EB patients and experience substantial stress and overwhelming burdens. Consequently, they would benefit greatly from various support systems to reduce the burden of caring for EB patients.
Healthcare professionals can use the findings from this study to understand the circumstances faced by family caregivers and tailor care and education specifically to support each family's financial, social and household needs, thereby helping them reduce the stress of caring for EB patients.