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1.

Context

People with chronic conditions who are often in contact with the health‐care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health‐care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers.

Objective

To explore the views of CAM users with chronic conditions and identify their perspectives on the health system.

Design and Setting

In‐depth interviews and a self‐administered questionnaire were used to collect data on care‐seeking, self‐management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia.

Results

One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person‐centred approach, which was central to problems relating to individuals'' clinical encounters as well as to health system design.

Discussion and Conclusion

Participants'' concerns suggest room for improvement in the Australian health system to better reflect patients'' needs. A systems approach is needed to reorient health‐care practitioners to modify the organization of care because of the incentives embedded in the structure of the health‐care system.  相似文献   

2.

Background

Living with a child with a long‐term condition can result in challenges above usual parenting because of illness‐specific demands. A critical evaluation of research exploring parents'' experiences of living with a child with a long‐term condition is timely because international health policy advocates that patients with long‐term conditions become active collaborators in care decisions.

Methods

A rapid structured review was undertaken (January 1999–December 2009) in accordance with the United Kingdom Centre for Reviews and Dissemination guidance. Three data bases (MEDLINE, CINAHL, PSYCINFO) were searched and also hand searching of the Journal of Advanced Nursing and Child: Care, Health and Development. Primary research studies written in English language describing parents'' experiences of living with a child with a long‐term condition were included. Thematic analysis underpinned data synthesis. Quality appraisal involved assessing each study against predetermined criteria.

Results

Thirty‐four studies met the inclusion criteria. The impact of living with a child with a long‐term condition related to dealing with immediate concerns following the child''s diagnosis and responding to the challenges of integrating the child''s needs into family life. Parents'' perceived they are not always supported in their quest for information and forming effective relationships with health‐care professionals can be stressful. Although having ultimate responsibility for their child''s health can be overwhelming, parents developed considerable expertise in managing their child''s condition.

Conclusion

Parents'' accounts suggest they not always supported in their role as manager for their child''s long‐term condition and their expertise, and contribution to care is not always valued.  相似文献   

3.

Background

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Objective

The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care?

Setting and participants

Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically.

Results

Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’.

Discussion

Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients'' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients'' cyclic decision‐making patterns and facilitating carer inclusion in decision processes.

Conclusions

The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.  相似文献   

4.

Background

Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health‐care providers across the world. Little is known about the health‐care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health.

Objective

This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere.

Design

A Grounded Theory approach using purposive and theoretical sampling with in‐depth semi‐structured interviews.

Setting and participants

Chinese elders were recruited from Chinese communities in the North West of England. Thirty‐three participants were interviewed face‐to‐face and audio‐recorded.

Results

Participants self‐managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person‐centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health‐related advice when exercise was often used as a self‐monitored barometer to assess their perceived health status.

Discussion and conclusion

Chinese elders may undertake inappropriate exercise, leading to high‐risk situations, if appropriate professional information is not provided. Health‐care practitioners should devote attention to understanding Chinese elders'' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person‐centred approach that acknowledges and works with self‐management practices is advocated.  相似文献   

5.

Background

Nurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners.

Objectives

To ascertain what care Australian health‐care consumers would accept from nurse practitioners in this setting.

Participants

Australian adults over 18 years of age.

Methods

National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health‐care consumer networks nationally.

Results

The total number of respondents that started the survey was n = 1883. Ninety‐five percentage (n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25–54 years, had completed tertiary education and had an annual household income of more than A$80 000. The majority of the respondents (n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health‐care needs.

Conclusions

The findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health‐care workforce mix and organization, particularly for areas that are underserved by medical practitioners.  相似文献   

6.

Background

Many Western countries have cervical cancer screening programmes and have implemented nation‐wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer.

Objective

To explore immigrant women''s experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.

Design

An exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework.

Setting and participants

Eight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis.

Results

Four themes emerged: (i) deprioritization of women''s health in home countries, (ii) positive attitude towards the availability of women''s health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check‐ups.

Conclusion

The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health‐care providers. Therefore, information needs to be in different languages and provided through different sources. Health‐care professionals should also consider immigrant women''s difficulties concerning cultural norms and pay attention to their experiences.  相似文献   

7.

Background and objective

This study investigated the views of primary care patients in receipt of Medicare‐funded team care for chronic disease management (CDM) in Australia.

Design

A qualitative study using a repeat in‐depth interview design.

Participants and setting

Twenty‐three patients (17 female), aged 32–89, were recruited over a six‐month period from two purposively selected general practices: one urban and one regional practice in Queensland, Australia.

Data collection procedure

Semi‐structured interviews were conducted with participants 6 months apart. An interview guide was used to ensure consistency of topics explored. Interviews were recorded and transcribed, and a thematic analysis was conducted.

Results

Patients in this study viewed the combined contributions of a GP and other health professionals in team care as thorough and reassuring. In this case of Medicare‐funded team care, patients also saw obligations within the structured care routine which cultivated a personal ethics of CDM. This was further influenced by how patients viewed their role in the health‐care relationship. Aside from personal obligations, Medicare funding got patients engaged in team care by providing financial incentives. Indeed, this was a defining factor in seeing allied health professionals. However, team care was also preferential due to patients'' valuations of costs and benefits.

Conclusion

Patients are likely to engage with a structured team care approach to CDM if there is a sense of personal obligation and sufficient financial incentive. The level of engagement in team care is likely to be optimized if patient expectations and preferences are considered in decisions.  相似文献   

8.

Background

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Objective

To identify the impact of patient and public involvement on health and social care research.

Design

A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.

Inclusion criteria

All study types that reported the impact PPI had on the health and/or social care research study.

Main results

A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.

Conclusion

This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.  相似文献   

9.

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.  相似文献   

10.
11.

Aim/Background

To describe the two‐stage prioritization process being used by the UK National Institute for Health Research''s Collaboration for Leadership in Applied Health Research and Care for the South‐West Peninsula (or PenCLAHRC) – a joint health service and university partnership and reflect on implications for the wider context of priority setting in health‐care research.

Method

PenCLAHRC''s process establishes the priorities of Stakeholders including service users across a regional health system for locally relevant health services research and implementation. Health research questions are collected from clinicians, academics and service users in Devon and Cornwall (UK) using a web‐based question formulation tool. There is a two‐stage prioritization process which uses explicit criteria and a wide Stakeholder group, including service users to identify important research questions relevant to the south‐west peninsula locality.

Results

To date, a wide variety of health research topics have been prioritized by the PenCLAHRC Stakeholders. The research agenda reflects the interests of academics, clinicians and service users in the local area. Potential challenges to implementation of the process include time constraints, variable quality of questions (including the language of research) and initiating and maintaining engagement in the process. Shared prioritization of local health research needs can be achieved between Stakeholders from a wide range of perspectives.

Conclusions

The processes developed have been successful and, with minor changes, will continue to be used during subsequent rounds of prioritization. Engagement of Stakeholders in establishing a research agenda encourages the most relevant health questions to be asked and may improve implementation of research findings and take up by service users.  相似文献   

12.

Background

Despite high rates of women''s use of intrapartum pain management techniques, little is known about the factors that influence such use.

Objective

Examine the determinants associated with women''s use of labour pain management.

Design

Cross‐sectional survey of a substudy of women from the ‘young’ cohort of the Australian Longitudinal Study of Women''s Health (ALSWH).

Setting and participants

Women aged 31–35 years who identified as being pregnant or recently given birth in the 2009 ALSWH survey (n = 2445) were recruited for the substudy. The substudy survey was completed by 1835 women (RR = 79.2%).

Main variables studied

Determinants examined included pregnancy health and maternity care [including complementary and alternative medicine (CAM)] for their most recent pregnancy and any previous pregnancies. Participants'' attitudes and beliefs related to both CAM and maternity care were also included in the analysis.

Main outcome measures

The outcome measures examined were the use of both pharmacological and non‐pharmacological pain management techniques (NPMT).

Results

Differences were seen in the effects of demographics, health service utilization, health status, use of CAM, and attitudes and beliefs upon use of intrapartum pain management techniques across all categories. The only variable that was identified as a determinant for use of all types of pain management techniques was a previous caesarean section (CS).

Discussion and conclusions

The effect of key determinants on women''s use of pain management techniques differs significantly, and, other than CS, no one determinant is clearly influential in the use of all pain management options.  相似文献   

13.

Background

In the United Kingdom, nurses and pharmacists who have undertaken additional post‐registration training can prescribe medicines for any medical condition within their competence (non‐medical prescribers, NMPs), but little is known about patients'' experiences and perceptions of this service.

Objective

to obtain feedback from primary care patients on the impact of prescribing by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs) on experiences of the consultation, the patient–professional relationship, access to medicines, quality of care, choice, knowledge, patient‐reported adherence and control of their condition.

Design

Two cross‐sectional postal surveys.

Setting and participants

Patients prescribed for by either NIPs or PIPs in six general practices from different regions in England.

Results

30% of patients responded (294/975; 149/525 NIPs; 145/450 PIPs). Most said they were very satisfied with their last visit (94%; 87%), they were told as much as they wanted to know about their medicines (88%; 80%), and felt the independent prescriber really understood their point of view (87%; 75%). They had a good relationship with (89%; 79%) and confidence in (84%; 77%) their NMP. When comparing NMP and doctor prescribing services, most patients reported no difference in their experience of care provided, including access to it, control of condition, support for adherence, quality and safety of care.

Discussion and conclusions

Patients had positive perceptions and experience from their NMP visit. NMPs were well received, and patients'' responses indicated the establishment of rapport. They did not express a strong preference for care provided by either their non‐medical or medical prescriber.  相似文献   

14.

Background

Insomnia is common leading to patients with sleep problems often presenting to primary care services including general practice, community pharmacies and community mental health teams. Little is known about how health professionals in primary care respond to patients with insomnia.

Aim

We aimed to explore health professionals'' and patients'' experiences and perceptions of the management of insomnia in primary care.

Design

We used a qualitative design and thematic approach.

Setting

Primary care in Nottinghamshire and Lincolnshire.

Method

We undertook focus groups and one‐to‐one interviews with a purposive sample of health professionals and adults with insomnia.

Results

We interviewed 28 patients and 23 health professionals. Practitioners focused on treating the cause of insomnia rather than the insomnia itself. They described providing stepped care for insomnia, but this focused on sleep hygiene which patients often disregarded, rather than cognitive behavioural therapy for insomnia (CBT‐I). Practitioners were ambivalent towards hypnotic drugs but often colluded with patients to prescribe to avoid confrontation or express empathy. Patients sometimes took hypnotics in ways that were not intended, for example together with over‐the‐counter medication. Practitioners and patients were sometimes but not always concerned about addiction. Practitioners sometimes prescribed despite these concerns but at other times withdrew hypnotics abruptly without treating insomnia. Both patients and practitioners wanted more options and better training for the management of insomnia in primary care.

Conclusion

A better understanding of the current approaches and difficulties in the management of insomnia will help to inform more therapeutic options and health professional training.  相似文献   

15.

Background

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

Objective

To determine whether the 56‐item Give Youth a Voice (GYV‐56), its subscales and its 20‐item short‐form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen‐centred care (TCC) in paediatric oncology.

Design

Qualitative interviews and a questionnaire survey.

Setting and participants

Qualitative interviews with 38 childhood cancer survivors. GYV‐56 data collected from 200 paediatric cancer patients and survivors.

Main outcome measure

The GYV‐56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen‐centred services.

Results

Qualitative data provided broad support for the TCC conceptual framework and GYV‐56 items. After post‐hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi‐square P‐values, scale reliability were supported and item locations defined a continuum for TCC that was well‐targeted to the sample. By calibrating the items for each subscale and the short‐form to the full scale, the scores obtained on each measure are directly comparable.

Conclusion

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.  相似文献   

16.

Background

Governments in several countries attempt to strengthen user participation through instructing health‐care organizations to implement user participation initiatives. There is, however, little knowledge on the effect on patients'' experience from comprehensive plans for enhancing user participation in whole health service organizations.

Objective

To investigate whether implementing a development plan intending to enhance user participation in a mental hospital had any effect on the patients'' experience of user participation.

Design, setting and participants

A non‐randomized controlled study including patients in three mental hospitals in Central Norway, one intervention hospital and two control hospitals.

Interventions

A development plan intended to enhance user participation was implemented in the intervention hospital as a part of a larger reorganizational process. The plan included establishment of a patient education centre and a user office, purchase of user expertise, appointment of contact professionals for next of kin and improvement of the centre''s information and the professional culture.

Main outcome measures

Perceptions of Care, Inpatient Treatment Alliance Scale and questions made for this study.

Results

A total of 1651 patients participated. Implementing a development plan in a mental hospital intending to enhance user participation had no significant effect on the patients'' experience of user participation.

Discussions and conclusions

The lack of effect can be due to inappropriate initiatives or challenges in implementation processes. Further research should ensure that initiatives and implementation processes are appropriate to impact the patients'' experience.  相似文献   

17.

Background

Health‐care professionals worldwide have started to appreciate patients'' perspectives on the use of complementary and alternative medicine (CAM) particularly given its popularity. However, cultural perspectives may vary and it may not be possible to apply research findings on the use of CAM from the west to the east.

Objective

This systematic review aims to synthesize usage patterns of traditional Chinese medicine (TCM) amongst Chinese populations in different parts of the world and explore potential geographical variations.

Search strategy

Six international and four Chinese databases were searched, and manual searches of relevant monographs and government publications were carried out.

Inclusion criteria

Quantitative, qualitative or mixed‐method research that aimed to investigate Chinese patients'' perception of, and perspectives on, TCM was included.

Data extraction and synthesis

For each study included, texts under the headings of ‘results’ or ‘findings’ were extracted and subjected to analysis. A thematic synthesis approach was adopted for synthesizing qualitative and quantitative studies.

Main results

Amongst the 28 studies included, twenty were quantitative surveys, six were qualitative studies and two were mixed‐method studies. The overall methodological quality was mediocre. Data synthesis suggested that patients from all regions share a common cultural affinity to TCM and consider it to be an effective complement to western medicine (WM) for treating chronic or serious diseases. However, heterogeneous views on (i) disclosing TCM use to WM doctors and (ii) the potential harm of herbs emerged across different study locations.

Discussion and conclusions

Future research should explore how variation in health systems may influence patients'' perception of CAM in different countries.  相似文献   

18.

Background

There is growing evidence of a reluctance to allocate health care solely on the basis of maximizing quality‐adjusted life years (QALYs). Stated preference methods can be used to elicit preferences for efficiency vs. equity in the allocation of health‐care resources.

Objective

To compare discrete choice experiment (DCE) and constant‐sum paired comparison (CSPC) methods for eliciting societal preferences.

Methods

Over a series of choice pairs, DCE respondents allocated a fixed budget to one preferred group and CSPC respondents allocated budget percentages between the groups. Questionnaires were compared in terms of completion rates, preference consistency, dominant preferences and derived attribute importance.

Results

There was no significant difference in the proportions that rated the questionnaires somewhat or extremely difficult, but a significantly greater proportion completed the DCE compared to the CSPC. Preference consistency was also higher in the DCE. The incidence of dominant preferences, including for aggregate QALYs, was low and not significantly different between questionnaires. Similarly, no CSCP respondents equalized budgets or outcomes in every task. Final health state was the most important attribute in both questionnaires, but the rankings diverged for the other attributes. Notably, the total patients'' treated attribute was important in the CSPC but insignificant in the DCE, perhaps reflecting a ‘prominence effect’.

Conclusions

Despite lower completion rates and preference consistency, CSPC may offer advantages over DCE in eliciting preferences over the distribution of resources and/or outcomes as well as attribute levels, avoiding extreme ‘all‐or‐nothing’ distributions and possibly aligning respondent attention more closely with a societal perspective.  相似文献   

19.

Objective

To identify from the older adults'' perspective, the factors associated with discussion about falls with their general practitioners and other health professionals and the factors associated with initiation of these discussions. We explored the content of and barriers to discussion about falls.

Methods

A prospective cohort study where a baseline cross‐sectional survey was followed by a survey 1 year later. Survey domains were drawn from constructs of behavioural change models. Data from 245 older community dwellers in Victoria, Australia, in the follow‐up survey were used for this study. Survey format consisted of yes and no responses, Likert scale and open/closed‐ended responses.

Results

Few older adults talked with and initiated a talk with their health‐care providers about falls in the follow‐up period. Multiple regression showed anxiety or depression [OR = 2.78, 95% CI (1.21–6.41)], chronic medical conditions such as diabetes [OR = 2.71, 95% CI (1.19–6.17)] and having a self‐reported fall in the last 12 months [OR = 4.26, 95% CI (2.16–8.41)] were associated with discussion of falls with general practitioners. Higher perception of risk of sustaining a serious injury from falling [OR = 1.49 (1.03–2.13)] was associated with discussion about falls with other health professionals. Participants discussed various topics of falls with their health‐care providers. Different barriers to discussion about falls were identified.

Conclusion

Health‐care providers should routinely discuss falls prevention with older adults. Dissemination of evidence‐based advice and followed up with referral during consultations, particularly in general practitioners could advance falls prevention practice. The results could help to develop a conceptual framework to predict the likelihood of falls discussion.  相似文献   

20.

Background

Gypsies and Travellers are known to have poor health status and access to health services, even in comparison with other ethnic minority groups. People from this stigmatized ethnic group are rarely consulted about their health needs or health service provision. Optimal infant feeding in the first year of life has the potential to improve lifelong health.

Objective

The aim of this study was to explore mothers and grandmothers’ views on feeding in the first year of life, including the support provided by health professionals.

Methods

Semi‐structured interviews were conducted with a purposively selected sample of 22 mothers and grandmothers of English Gypsy, Irish Traveller and Romanian Roma ethnicity between November 2011 and February 2012 in a city in south‐west England.

Results

Few women perceived themselves as requiring help from health professionals in infant feeding, as acceptable and accessible support was available from within their own communities. Roma mothers described a tradition of breast‐feeding and appropriately timed weaning, while English Gypsies and Irish Travellers customarily practised less healthy infant feeding. When mothers requested support, health service provision was often found inadequate.

Conclusion

Exploring the views of Gypsies and Travellers is important to gain insight into the provision of health services for this marginalized ethnic group. This study has implications for policy and the practice of health professionals, in indicating the customary feeding behaviours of some Gypsy and Travellers, and highlighting areas meriting culturally sensitive health promotion.  相似文献   

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