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BACKGROUND: Carers of patients with advanced organ failure (AOF) experience a tremendous caregiving burden. Social capital utilizes the internal strength of a community to support its members and may provide carers with comprehensive support. This study aimed to identify the different sources of social capital that can support carers of patients with AOF from the perspectives of stakeholders. METHOD: A descriptive qualitative study was conducted in community settings from April 2021 to May 2022. Stakeholders from medical social work departments, self-help groups, and non-governmental organizations were recruited, while some community members were invited through online media platforms. Individual semi-structured interviews were conducted using an interview guide. Interview transcripts were analyzed using a qualitative description approach. In total, 98 stakeholders, including 25 carers, 25 patients, 24 professionals, and 24 community members, were recruited using purposive and snowball sampling. RESULTS: Six categories about social capital for carers emerged, namely, carer attributes, the community, social care services, healthcare services, information, and policies. While the attributes of carers and their relationships with care recipients had a significant influence on caregiving, support from different groups in the community, such as neighbors and employers, was valued. Good communication of information about caregiving and social services was emphasized as being helpful by carers and other stakeholders. While carers presented a need for various healthcare and social care services, several features of these services, including their person-centeredness and proactive reach, were deemed useful. At the societal level, policies and research on comprehensive supportive services are warranted. The different sources of social capital constitute a multi-layer support system in the community. CONCLUSION: Carers can utilize personal attributes, interpersonal relationships, community resources, and societal contexts to enhance their caregiving. While this system can serve as a framework for building carer-friendly communities, interventions may be required to strengthen some aspects of social capital.
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Cuidadores , Capital Social , Humanos , Grupos de Autoayuda , Apoyo Social , Servicio SocialRESUMEN
Objective: Hepatocellular carcinoma (HCC) is frequently diagnosed late. Although ultrasound-based HCC screening is recommended, its effectiveness is restricted by underutilization. This study aimed to develop a nurse-led decision counseling program used to improve HCC screening in patients with hepatitis B and to evaluate its feasibility in terms of process, resources, management, and cultural acceptance. Methods: The nurse-led decision counseling program was developed following the Medical Research Council framework and the preventive health model. Its components were informed by a systematic review and a qualitative study that had explored empirical HCC screening barriers. Guided by typology of Tickle-Degnen, a feasibility study was conducted among twenty eligible patients with hepatitis B, who were randomized to receive the intervention plus usual care or usual care only. Multisets of feasibility data were collected from interviews, field notes, and minutes of discussions with participants, family members, and clinical specialists. Results: The program consists of health education, tailored information, values clarification exercises, and exploring and addressing barriers, which help to achieve informed and value-based HCC screening utilization. Feasibility assessments identified and improved process issues, such as restrictive inclusion criteria and cultural challenges, including (1) default mistrust, (2) discrimination and confidentiality concerns, (3) cultural reluctance to open discussions about HCC screening, and (4) social influence under a collectivist culture. Conclusions: The study informs an innovative feasibility typology for nursing interventions and contributes to a promising, feasible, and culturally relevant intervention to improve HCC screening and prevent advanced diagnosis in hepatitis B-induced HCC in China and other hepatitis B-prevalent Asian countries. Trial registration: Clinicaltrials.gov: NCT04659005.
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Objective: Postoperative gastrointestinal dysfunction occurred up to 25% of patients who undergo colorectal cancer surgery, which could cause severe complications and increase economic burden. This study aims to evaluate the effectiveness of nurse-delivered acupressure on early postoperative gastrointestinal function among patients undergoing colorectal cancer surgery. Methods: A total of 112 adult patients (≥ 18 years) scheduled to receive colorectal cancer surgery were randomized into two groups. Acupressure was practiced at ST36 for five days after operation, while the control group used gently rubbing skin. Primary outcomes were the time to first passage of flatus and defecation, while the secondary outcomes were the degree of abdominal distention and bowel motility. The Student's t-test and Mann-Whitney U test or Chi-square test and regression analyses were used, while for repeated measures of outcomes, area under the curve (AUC) was compared between groups and subgroups. Results: After adjusting for potential confounding variables, acupressure significantly shortened the time to have first flatus passage by 11.08 âh (95%CI: -19.36 to -2.81; P â< â0.01). The first passage time of defecation (mean, 77.00 â± â36.27 âh vs. 80.08 â± â28.88 âh), abdominal distention (AUC, 5.68 â± â5.24 vs. 5.92 â± â4.03), and bowel motility (AUC, 12.09 â± â4.70 vs. 11.51 â± â3.00) in the intervention group had some improvement although the differences were not statistically significant (P â> â0.05). Conclusions: This study indicated that acupressure done by trained nurses could be an effective and feasible solution to promote early gastrointestinal function recovery among patients undergoing colorectal cancer surgery. Trial registration: Chinese Clinical Trial Registry (ChiCTR-IOR-17012460).
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Patients treated for gynaecological cancer (GC) generally experience impaired sexual function. Research on their sexual life experiences and perceptions on the sexuality care they receive is warranted. This study aimed to examine the perceptions of Chinese patients treated for GC regarding the effects of cancer treatment on their sexual function and femininity, their relationships with their partners, and the adequacy of the sexual information received from healthcare professionals during treatment. Individual, semi-structured interviews were conducted with 21 Chinese patients treated for GC, collecting data on their perceptions regarding the effects of cancer treatment on their sexual lives, femininity, and relationships with partners; and their views about the quality of sexuality care received. Data were analysed using content analysis. Participants experienced impaired sexual function, reduced sex drive, and expressed dissatisfaction with their sex lives. They perceived a loss of femininity and poor body image. They desired more information about how to address sexual problems and opted to receive this information from female healthcare professionals in individual counselling sessions during which the professionals could initiate such discussions. Overall, Chinese patients treated for GC have concerns about multiple sexual issues and a strong desire for information about strategies to address these issues. Nurse-led interventions should be implemented via a shared care approach to enhance patients' awareness about managing their sexual and psychological symptoms.
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OBJECTIVE: This article aimed to report the experience of developing a complex nurse-led, theory-driven, and evidence-based educational intervention program intended to manage the nutrition impact symptom cluster experienced by patients with nasopharyngeal carcinoma (NPC) during radiotherapy, based on the Medical Research Council (MRC) framework. METHODS: The "development" and "feasibility and piloting" phases of the MRC framework were used to guide the intervention development. The development phase included identifying the evidence base through a systematic review, exploring the relevant and guiding theory to enhance the effectiveness of the intervention and conducting a qualitative study to identify the intervention modelling. For the feasibility and piloting phase, we conducted a pilot study to examine the feasibility and estimate the effectiveness of the intervention. RESULTS: The systematic review revealed that nurse-led educational interventions were used commonly for symptom cluster management, with promising effectiveness. The theoretical foundation was provided by the Theory of Unpleasant Symptoms, which indicates that an educational intervention can help patients to manage symptom cluster by influencing psychological, situational, and physiological factors. The qualitative study further provided contents of the intervention based on the perspectives of NPC patients and health professionals. The resulting program involves a nurse-led, family caregiver involvement, educational intervention with two sessions that uses a booklet as a medium. The pilot study found that conducting the educational intervention program was feasible and it also had some favorable effects on managing the nutrition impact symptom cluster in NPC patients. CONCLUSIONS: The MRC framework provided a strong structure with which to develop a complex intervention for nutrition impact symptom cluster management through a theory-driven and evidence-based approach. The evaluation of the intervention, the delivery process and the mediation mechanism of change using a rigorous randomized controlled trial design is recommended.
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Background: Most biomedical research has focused on sampling COVID-19 patients presenting to hospital with advanced disease, with less focus on the asymptomatic or paucisymptomatic. We established a bioresource with serial sampling of health care workers (HCWs) designed to obtain samples before and during mainly mild disease, with follow-up sampling to evaluate the quality and duration of immune memory. Methods: We conducted a prospective study on HCWs from three hospital sites in London, initially at a single centre (recruited just prior to first peak community transmission in London), but then extended to multiple sites 3 weeks later (recruitment still ongoing, target n=1,000). Asymptomatic participants attending work complete a health questionnaire, and provide a nasal swab (for SARS-CoV-2 RNA by RT-PCR tests) and blood samples (mononuclear cells, serum, plasma, RNA and DNA are biobanked) at 16 weekly study visits, and at 6 and 12 months. Results: Preliminary baseline results for the first 731 HCWs (400 single-centre, 331 multicentre extension) are presented. Mean age was 38±11 years; 67% are female, 31% nurses, 20% doctors, and 19% work in intensive care units. COVID-19-associated risk factors were: 37% black, Asian or minority ethnicities; 18% smokers; 13% obesity; 11% asthma; 7% hypertension and 2% diabetes mellitus. At baseline, 41% reported symptoms in the preceding 2 weeks. Preliminary test results from the initial cohort (n=400) are available: PCR at baseline for SARS-CoV-2 was positive in 28 of 396 (7.1%, 95% CI 4.9-10.0%) and 15 of 385 (3.9%, 2.4-6.3%) had circulating IgG antibodies. Conclusions: This COVID-19 bioresource established just before the peak of infections in the UK will provide longitudinal assessments of incident infection and immune responses in HCWs through the natural time course of disease and convalescence. The samples and data from this bioresource are available to academic collaborators by application https://covid-consortium.com/application-for-samples/.
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OBJECTIVE: An advance directive (AD) is a document that allows mentally competent individuals to make healthcare decisions about their condition that they might no longer be able to make in the future. This study aimed to explore the perceptions of AD decision-making of various stakeholders in the Chinese palliative care setting. METHODS: Patients with life-limiting diseases, family members, health professionals, and hospital volunteers were recruited in the palliative care unit of two hospitals in Hong Kong by purposive sampling on age and sex. Qualitative semi-structured individual interviews were conducted. RESULTS: A total of 96 participants, including 24 participants from each group, completed the study. Most participants were willing to discuss AD but had not heard about it before the interview. Patients regarded the decisions made in the AD as a way to reduce their future sufferings, while they also considered the welfare of their family. Family members were concerned about the psychological burden when discussing about the AD. Health professionals emphasized the logistic and process of the AD. Hospital volunteers pointed out the impact of Chinese culture on AD acceptance and the lack of AD promotion in the community. CONCLUSIONS: The findings of the study indicated the need for more promotion of AD in the society. It is important to consider the opinion of a patient's family during AD discussions in a Chinese culture. Health professionals may need to identify the best timing for the discussion of AD with patients and their families.