scholarly journals A Psychosocial Support Website From the British Association of Dermatologists for People Living With a Skin Condition: Mixed Methods Evaluation

10.2196/17052 ◽  
2020 ◽  
Vol 3 (1) ◽  
pp. e17052 ◽  
Author(s):  
Connor Heapy ◽  
Kerry Montgomery ◽  
Steven Ersser ◽  
Matt Gass ◽  
Nina Goad ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Skin Condition ◽  
British Association ◽  
Self Help ◽  
Skin Conditions ◽  
Qualitative Responses

Background There is a lack of psychological support for individuals with skin conditions, and few low-intensity self-help interventions are available. Objective This study aimed to test the acceptability and usability of a support website and its embedded self-help resources. Methods A mixed methods approach was utilized. A total of 583 participants (426 with a skin condition, 97 relatives and friends, and 60 dermatology professionals) viewed the British Association of Dermatologist’s SkinSupport website and then completed a survey about their well-being and the usability of the website. A comparison group comprising 816 participants also completed the well-being measures. In total, 37 participants (19 living with a skin condition, and the relatives and friends of individuals with a skin condition, and 18 dermatology professionals) viewed the SkinSupport website and then took part in focus groups. Participants were recruited via social media, professional networks, and volunteer lists. Data from the survey were analyzed using descriptive and inferential statistics and qualitative content analysis. Results Both quantitative and qualitative responses suggest that the SkinSupport website was viewed positively by both patients and health professionals. Overall, 79.8% (417/523) of individuals with a skin condition, and the relatives and friends of individuals with a skin condition, said that they would use the website again; and 86.7% (52/60) of dermatology professionals said that they would recommend the site to somebody with a skin condition. Qualitative responses related to the website fell into 4 key themes: (1) appearance, (2) use and navigation, (3) information, and (4) areas for development. Conclusions The SkinSupport website was considered acceptable and usable. A range of areas requiring modification were identified. The website provides a useful resource that patients can access freely. Given the lack of services available to patients with skin conditions, health care professionals could routinely inform patients of this resource at assessment.

scholarly journals A Psychosocial Support Website From the British Association of Dermatologists for People Living With a Skin Condition: Mixed Methods Evaluation (Preprint)

2019 ◽  
Author(s):  
Connor Heapy ◽  
Kerry Montgomery ◽  
Steven Ersser ◽  
Matt Gass ◽  
Nina Goad ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Skin Condition ◽  
British Association ◽  
Self Help ◽  
Skin Conditions ◽  
Qualitative Responses

BACKGROUND There is a lack of psychological support for individuals with skin conditions, and few low-intensity self-help interventions are available. OBJECTIVE This study aimed to test the acceptability and usability of a support website and its embedded self-help resources. METHODS A mixed methods approach was utilized. A total of 583 participants (426 with a skin condition, 97 relatives and friends, and 60 dermatology professionals) viewed the British Association of Dermatologist’s <i>SkinSupport</i> website and then completed a survey about their well-being and the usability of the website. A comparison group comprising 816 participants also completed the well-being measures. In total, 37 participants (19 living with a skin condition, and the relatives and friends of individuals with a skin condition, and 18 dermatology professionals) viewed the <i>SkinSupport</i> website and then took part in focus groups. Participants were recruited via social media, professional networks, and volunteer lists. Data from the survey were analyzed using descriptive and inferential statistics and qualitative content analysis. RESULTS Both quantitative and qualitative responses suggest that the <i>SkinSupport</i> website was viewed positively by both patients and health professionals. Overall, 79.8% (417/523) of individuals with a skin condition, and the relatives and friends of individuals with a skin condition, said that they would use the website again; and 86.7% (52/60) of dermatology professionals said that they would recommend the site to somebody with a skin condition. Qualitative responses related to the website fell into 4 key themes: (1) appearance, (2) use and navigation, (3) information, and (4) areas for development. CONCLUSIONS The <i>SkinSupport</i> website was considered acceptable and usable. A range of areas requiring modification were identified. The website provides a useful resource that patients can access freely. Given the lack of services available to patients with skin conditions, health care professionals could routinely inform patients of this resource at assessment.

scholarly journals Reasons to stop drinking alcohol among patients with rheumatoid arthritis in Sweden: a mixed-methods study

BMJ Open ◽  
2018 ◽  
Vol 8 (12) ◽  
pp. e024367 ◽  
Author(s):  
Ingrid Larsson ◽  
Maria L E Andersson
Keyword(s):  
Rheumatoid Arthritis ◽  
Content Analysis ◽  
Mixed Methods ◽  
Qualitative Content Analysis ◽  
Well Being ◽  
Work And Family ◽  
Drinking Alcohol ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Open Question

ObjectivesThe aims were to identify patients with rheumatoid arthritis (RA) who had stopped drinking alcohol and compare them with patients drinking alcohol, and to explore reasons for stopping drinking alcohol.DesignA sequential explanatory mixed methods design was used.SettingSix rheumatology clinics in Southern Sweden Better Anti-Rheumatic FarmacOTherapy cohort.ParticipantsA total of 1509 patients completed the questions about alcohol and were included in the study. 86 of these had stopped drinking alcohol and 72 responded to the open question and their answers were analysed with qualitative content analysis.Outcome measuresThe quantitative data were from a cross-sectional survey assessing disease severity, physical function (Health Assessment Questionnaire, HAQ) and health-related quality of life (EuroQol five dimensions, EQ5D), pain, fatigue, patient global assessment (PatGA) and lifestyle factors, for example, alcohol. The questions assessing alcohol included an open question ‘Why have you stopped drinking alcohol?’ResultsThe patients who stopped drinking alcohol were older (median (min-max) 69 (36–90) vs 66 (23–95), p=0.011), had worse HAQ (1.00 (0–2.75) vs 0.50 (0–3.00), p<0.001), worse EQ5D (0.69 (−0.02–1.00) vs 0.76 (−0.58–1.00), p<0.001) worse PatGA (5 (0–10) vs 3 (0–10), p<0.001), more pain (5 (0–10) vs 3 (0–10), p<0.001) and more fatigue (6 (0–10) vs 4 (0–10), p<0.001 compared with patients drinking alcohol. The qualitative content analysis revealed five categories describing reasons for patients with RA to stop drinking alcohol: illness and treatment; health and well-being; work and family; faith and belief; and dependences and abuse.ConclusionsThe patients who had stopped drinking had worse physical functioning and higher levels in pain-related variables. Most stopped drinking due to their illness or a desire to improve health.

scholarly journals Development and Evaluation of a Website With Patients Experiences of Multiple Sclerosis: A Mixed Methods Study

2021 ◽  
Author(s):  
Anna Sippel ◽  
Jutta Scheiderbauer ◽  
Désirée Eklund ◽  
Sigrid Arnade ◽  
Stephan Schmidt ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Decision Making ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Visual Information ◽  
Patient Experiences ◽  
Management Options ◽  
Disease Modifying Therapies ◽  
Disease Modifying ◽  
Qualitative Responses

Abstract Background A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. Methods A mixed-methods approach was applied. A total of 69 participants visited the German “Patient Experiences with MS (PExMS)” website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. Results Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people’s experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. Conclusions The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.

scholarly journals Psychosocial support for families of children with neurodisability who have or are considering a gastrostomy: the G-PATH mixed-methods study

2020 ◽  
Vol 8 (38) ◽  
pp. 1-126
Author(s):  
Gillian M Craig ◽  
Eva Brown Hajdukova ◽  
Celia Harding ◽  
Chris Flood ◽  
Christine McCourt ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Health Services ◽  
Willingness To Pay ◽  
Health Care Professionals ◽  
Psychosocial Support ◽  
Clinical Care ◽  
Research Programme ◽  
Mixed Methods Study ◽  
Care Pathways ◽  
The Cost

Background Evidence reviews recommend consistent and structured support for children with neurodisability and their caregivers in care pathways in which professionals recommend a gastrostomy feeding tube. To date, and to our knowledge, no research has shown how these recommendations have been implemented. Objectives The objectives were to describe different exemplar models of psychosocial support and provide an estimate of their resources and costs. Design This was a mixed-methods study involving (1) a web-based survey, (2) a qualitative, collective case study of psychosocial support provision in four services and (3) an estimate of costs and preference through a willingness-to-pay study. Setting Four service configurations in different locations in England and Scotland. Participants Participants were staff who responded to a survey (n = 67) and interviewees (staff, n = 58; parents/children, n = 29). Findings Psychosocial support was rarely formalised or documented; it was delivered by different members of the multidisciplinary team, rather than by designated staff, and it was often integrated into appointments dominated by clinical care. Parents expressed different needs for support but reported little opportunity to discuss emotional aspects. Psychologists were not routinely involved and, in general, families were underserved by psychosocial services. Professionals constructed families’ need for psychosocial support in terms of their own roles and the management of risk. Mechanisms for integrating and delivering support were identified, including models of care that linked community and tertiary health services and integrated health and education through pooled budgets. Although generally valued by both staff and parents, peer-to-peer parent support was not consistently offered. Barriers included concerns about confidentiality and appropriately matching parents. Parents participated as members of a feeding committee at one site. Three analytical constructs described the provision of psychosocial support: ‘hidden work’, expressing emotional vulnerability and negotiations around risks and values. The cost-of-support study found that there was a mean of 2.25 appointments (n = 8 parents or carers) over the previous 12 months. The cost of health-care professionals’ time spent on providing psychosocial support ranged from £0.00 to £317.37 per child per year, with an average cost of £76.42, at 2017 prices. In the willingness-to-pay study the median rank of enhanced support, involving the opportunity to see a psychologist and parental peers, was significantly higher than that of usual care (n = 96 respondents, both carers and professionals, who completed rating of the service; p < 0.001). Limitations It proved difficult to disseminate a national survey, which resulted in a small number of returns, and to cost the provision of psychosocial support, which we designated as ‘hidden work’, owing to the lack of recording in clinical systems. Moreover, estimates were based on small numbers. Conclusions Parent interviews and the willingness-to-pay study demonstrated a preference for enhanced psychosocial support. The study suggests that there is a need for services to formally assess families’ needs for psychosocial support to ensure that provision is planned, costed and made explicit in care pathways. Personalised interventions may assist with the targeting of resources and ensuring that there is an appropriate balance in focus on both clinical care and psychosocial support needs in relation to and following treatment. Future work More work is needed to develop tools to assess families’ needs for psychosocial support and the effectiveness of training packages to strengthen team competency in providing support. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 38. See the NIHR Journals Library website for further project information.

Developing mHealth to the Context and Valuation of Injured Patients and Professionals in Hospital Trauma Care: Mixed Methods Study (Preprint)

2021 ◽  
Author(s):  
Thymen Houwen ◽  
Miel A. P. Vugts ◽  
Koen W.W. Lansink ◽  
Hilco P. Theeuwes ◽  
Nicky Neequaye ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Patient Information ◽  
Trauma Care ◽  
Health Care Professionals ◽  
Psychosocial Functioning ◽  
Psychosocial Support ◽  
End Users ◽  
Easy Access ◽  
Trauma Patients ◽  
Value Drivers

BACKGROUND Trauma care faces challenges to innovate their services, such as with mHealth applications, to improve quality of care and patients experience of health. For developing and preparing the future implementation of such innovations, systematic needs inquiries and collaborations with professional and patient end-users are highly recommended. OBJECTIVE To develop a trauma-mHealth application for patient information and support in accordance with the CeHRes roadmap, and describe (1) experiences of (unmet) information and support needs of injured trauma patients; (2) barriers and facilitators for trauma care professionals for the provision of information and support; (3) drivers of value of a mhealth application in trauma patients and trauma care professionals. METHODS Formative evaluations were conducted using mixed methods. Ten semi structured interviews with trauma patients and a focus group with trauma care professionals were conducted for contextual inquiry and value specification. User requirements and value drivers were applied in prototyping. Furthermore, a complementary quantitative discrete-choice experiment (DCE) was conducted with 109 Dutch trauma surgeons to triangulate the results on value specification. In the DCE, preferences were stated over hypothetical mHealth products with various ‘attributes’. The panel data from the DCE were analyzed with conditional and mixed logit models. RESULTS In the interviews patients disclosed a need for more psychosocial support and easy access to more extensive information on their injury, its consequences and future prospects. Health care professionals designated workload as a crucial issue; a digital solution should not cost additional time. The DCE showed that access to patient application data through Electronic Medical Record integration or a web-viewer was considered most important in a mhealth solution by surgeons, followed by the inclusion of periodic self-measurements, local adjustment of patient information, local hospital identification, complication detection, and personalization of rehabilitation through artificial intelligence (all p-values <.05). CONCLUSIONS In the context of trauma care, end-users have a broad range of requirements for a mHealth solution to also address psychosocial functioning, dependable information and possibly a prediction on how a patients ‘recovery trajectory is evolving. A structured development approach provided insights into value drivers, and facilitated mHealth prototype enhancement. Nonetheless, iterative development has to continue to proceed from simple and readily implementable mHealth solutions to ones that end-users appreciate. Hereto, this study can inspire the care community.

scholarly journals Is Parental Mindfulness Associated with Quality of Life and Itch Intensity in Children with Psoriasis and Eczema and Well-being in Parents?

Mindfulness ◽  
2021 ◽  
Author(s):  
Connor Heapy ◽  
Paul Norman ◽  
Lisa-Marie Emerson ◽  
Ruth Murphy ◽  
Susan Bögels ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Parental Stress ◽  
Negative Impact ◽  
Well Being ◽  
Skin Condition ◽  
Dispositional Mindfulness ◽  
General Stress ◽  
Skin Conditions

Abstract Objectives Childhood psoriasis and eczema negatively impact the well-being of children and their parents. Identifying variables that protect against, or reduce, the negative impact of these skin conditions could greatly improve the lives of children with these skin conditions and their parents. We therefore aimed to investigate whether higher levels of parental dispositional mindfulness are associated with lower levels of psychological distress and better quality of life in children with psoriasis or eczema and their parents. Methods Children with psoriasis or eczema (n = 180, M age = 10.22, females = 108) and their parents (n = 210, M age = 39.97, females = 183) were recruited from social media and NHS dermatology clinics in the UK. Parents completed questionnaires assessing dispositional mindfulness, parental stress, psychological distress (depression, anxiety, general stress), and quality of life related to their child’s skin condition. Children completed questionnaires assessing quality of life related to their skin condition and pruritus (itch intensity). Results Parental dispositional mindfulness explained significant amounts of variance in parental stress, parent depression, parent anxiety, parent general stress, and both parent and child quality of life. These relationships were not moderated by skin condition. Conclusion Parental dispositional mindfulness is associated with better well-being in parents of children with psoriasis or eczema, and their children. Mindfulness-based interventions for parents may be beneficial for improving well-being in both children with skin conditions and their parents. Trial Registration: https://aspredicted.org/xf429.pdf (see Supplementary Materials A).

scholarly journals Feasibility of a Web-Based Psychoeducation Course and Experiences of Caregivers Living With a Person With Schizophrenia Spectrum Disorder: Mixed Methods Study

10.2196/25480 ◽  
2021 ◽  
Vol 23 (4) ◽  
pp. e25480
Author(s):  
Anna Laine ◽  
Minna Anttila ◽  
Heli Hirvonen ◽  
Maritta Välimäki
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Well Being ◽  
Mixed Methods Study ◽  
Schizophrenia Spectrum Disorders ◽  
Web Based ◽  
Course Content ◽  
Schizophrenia Spectrum ◽  
The Web

Background Schizophrenia is a severe mental illness that burdens both patients and caregivers. Objective The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course. Methods A convergent, parallel, mixed methods study design was used. First, caregivers’ engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course. Results A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, Orientation (3465 log-ins), and the lowest number of log-ins was recorded for the Daily life module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver’s own well-being, relationship with the person with SSD, and experience of health care services. Conclusions The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals.

Refugee women’s well-being, needs and challenges: implications for health policymakers

2020 ◽  
Vol 42 (4) ◽  
pp. e506-e512
Author(s):  
L Qutranji ◽  
N Y Silahlı ◽  
H E Baris ◽  
P Boran
Keyword(s):  
Healthcare System ◽  
Psychosocial Support ◽  
Qualitative Content Analysis ◽  
Healthcare Access ◽  
Occupational Status ◽  
Well Being ◽  
Healthcare Services ◽  
University Hospital ◽  
Enabling Factors ◽  
Language Courses

Abstract Background Refugees face circumstances where their health and well-being are compromised. In this qualitative study, the aim was to understand Syrian refugee women’s needs for care and the predisposing and enabling factors to healthcare access and utilisation. Methods Out of 945 Syrian mothers who gave birth in our university hospital between 2014 and 2018, 195 were reached; out of which, 47 women were included. Semi-structured in-depth interviews were conducted and were later analysed using a qualitative content analysis approach. Depression was assessed by the Patient Health Questionnaire-9 at the end of the interview. Results Social isolation and maternal depression, language barrier and challenges while navigating the healthcare system emerged as the main themes of the study. Low educational and occupational status of the women, poor social resources, limited Turkish proficiency and unfamiliarity with the host healthcare system were identified as the predisposing factors for poor healthcare services utilisation. Conclusion Recommendations include bridging language gaps, improving the navigation of the healthcare system by visual support or in-person interpretation, and psychosocial support. Providing hospital-based language courses to mothers and social integration programs for families will improve the mothers’ well-being and indirectly care of the child.

scholarly journals Perspective on Living With a Skin Condition and its Psychological Impact: A Survey

2018 ◽  
Vol 6 (1) ◽  
pp. 68-71 ◽  
Author(s):  
A Kanji
Keyword(s):  
Psychological Impact ◽  
Well Being ◽  
Skin Condition ◽  
Psychological Support ◽  
The United Kingdom ◽  
Survey Results ◽  
Chronic Skin ◽  
Skin Conditions ◽  
The Impact ◽  
Mental Well Being

Background: Chronic skin conditions can have a profound impact on people’s lives, both physically and psychologically, and may predispose to mental health disorders. Providing sufferers with appropriate psychological support is important. Objective: In this study, we captured the views of people suffering from a chronic skin condition who were attending the “Skin Matters” conference, held on 20 May 2017, in London. Methods: Delegates were provided with a 5-point questionnaire to complete. Questions related to the impact of their chronic skin condition on their life, the nature of any psychological support they had found helpful and whether they felt they could benefit from greater support in managing their condition. Results: 59% of the delegates completed the questionnaire. The survey results showed that skin conditions can have an impact of many areas of daily living as well as on mental well-being. The most popular source of psychological support was the Internet. The majority of survey participants felt they would benefit from increased psychological support in managing their condition. Conclusions: In the United Kingdom, there is a need to improve the availability of resources for people/patients with skin conditions in order to provide better support.

scholarly journals Feasibility of a Web-Based Psychoeducation Course and Experiences of Caregivers Living With a Person With Schizophrenia Spectrum Disorder: Mixed Methods Study (Preprint)

2020 ◽  
Author(s):  
Anna Laine ◽  
Minna Anttila ◽  
Heli Hirvonen ◽  
Maritta Välimäki
Keyword(s):  
Health Care ◽  
Mixed Methods ◽  
Health Care Professionals ◽  
Well Being ◽  
Mixed Methods Study ◽  
Schizophrenia Spectrum Disorders ◽  
Web Based ◽  
Course Content ◽  
Schizophrenia Spectrum ◽  
The Web

BACKGROUND Schizophrenia is a severe mental illness that burdens both patients and caregivers. OBJECTIVE The aim of this study is to examine the feasibility of a web-based psychoeducation course targeted at caregivers of persons with schizophrenia spectrum disorders (SSDs) and to describe their experiences of living with a person with SSD based on the material caregivers produced during the web-based course. METHODS A convergent, parallel, mixed methods study design was used. First, caregivers’ engagement in the course was evaluated quantitatively. Second, the overview of the course feedback was evaluated using quantitative and qualitative methods. Third, the experiences of being a caregiver to a person with SSD were analyzed qualitatively with the thematic analysis of the writings caregivers produced during the web-based course. RESULTS A total of 30 caregivers participated in the study and a web-based psychoeducation course. Less than two-thirds (18/30, 60%) completed the course. Content was most often logged for the first module, <i>Orientation</i> (3465 log-ins), and the lowest number of log-ins was recorded for the <i>Daily life</i> module (1061 log-ins). Feedback on the course varied; over half (10/17, 59%) of the caregivers considered the content to be very good or good, about half (9/17, 53%) considered the website layout to be good, only 6% (1/17) felt that the usability of the website was poor, and no one felt that it was very poor. From the reported experiences of being a caregiver to a person with SSD, 3 themes were formed: the caregiver’s own well-being, relationship with the person with SSD, and experience of health care services. CONCLUSIONS The web-based psychoeducation course for caregivers living with a person with SSD seems to be especially suitable for those who have little experience as a caregiver. In the future, more planning and the consideration of aspects related to the needs of specific target groups, course content, practical arrangements, and scheduling should be taken into account. In addition, although caregivers can improve their own well-being in different ways, they need regular support and cooperation from health care professionals. CLINICALTRIAL

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