Publications by authors named "Wendy Clyne"

24 Publications

  • Page 1 of 1

A Digital Program (Hope) for People Living With Cancer During the COVID-19 Pandemic: Protocol for a Feasibility Randomized Controlled Trial.

JMIR Res Protoc 2020 Dec 4;9(12):e24264. Epub 2020 Dec 4.

Centre for Intelligent Healthcare, Faculty of Health and Life Sciences, Coventry University, Coventry, United Kingdom.

Background: During the COVID-19 lockdown period in the United Kingdom that began on March 23, 2020, more than a quarter of a million people with cancer reported worsening mental health. Help to Overcome Problems Effectively (Hope) is a self-management program for people with cancer, designed to provide support for distress, unmet needs, and poor psychological health. In light of social distancing during the COVID-19 pandemic, digital delivery of the Hope Programme has become ever more vital for people with cancer. Previous pre-post studies of the digital Hope Programme have found reduced anxiety and depression and improved well-being for people with cancer. However, evaluation of this evidence has been limited by the lack of a control group in these previous studies.

Objective: We now present a protocol for a feasibility randomized controlled trial of the digital Hope Programme for people with cancer during the COVID-19 pandemic. Primary outcomes will be recruitment, dropout, and adherence rates, and estimations of sample and effect size. To detect signals of efficacy, secondary outcomes will be participant mental health and well-being.

Methods: Participants will be recruited by Macmillan Cancer Support (MCS) through their social media networks. The study will employ a feasibility wait-list randomized controlled trial (RCT) design, with people with cancer being randomized to join the digital Hope Programme immediately (intervention group [IG]) or join a 6-week waiting list (wait-list control group [WLCG]) with a 1:1 allocation ratio. Participants will complete digital measures of depression, anxiety, mental well-being, and confidence in managing their own health. Online questionnaires will be administered preprogram and 6 weeks postprogram.

Results: All people who had requested access to the Hope Programme from MCS (N=61) will be invited to participate in the trial. Baseline data collection commenced in April 2020, and the Hope Programme began for the IG in May 2020 and for the WLCG in June 2020. Postprogram data collection was completed by the end of August 2020.

Conclusions: This feasibility study will provide data to inform the design of a future definitive trial. Wider-scale provision of the digital Hope Programme has potential to improve the lives of thousands of people with cancer and reduce the burden on health care providers during these unprecedented times.

Trial Registration: ISRCTN Registry ISRCTN79623250;

International Registered Report Identifier (irrid): DERR1-10.2196/24264.
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December 2020

Help to Overcome Problems Effectively for Cancer Survivors: Development and Evaluation of a Digital Self-Management Program.

J Med Internet Res 2020 05 19;22(5):e17824. Epub 2020 May 19.

Faculty Research Centre for Intelligent Healthcare, Faculty of Health and Life Sciences, Coventry University, Coventry, United Kingdom.

Background: People living with cancer face numerous psychosocial challenges, including cancer-related fatigue, fear of recurrence, and depression. There is a lack of digital interventions tailored to the needs of people living with all types of cancer. We developed a 6-week, digital, peer-delivered, self-management program: iHOPE (Help to Overcome Problems Effectively; where 'i' indicates the digital version of the program). The program is underpinned by positive psychology and cognitive behavioral therapy to meet these psychosocial challenges.

Objective: This study aimed to assess the feasibility of the iHOPE program among people living with cancer. Program adherence and satisfaction along with changes in psychological distress and positive well-being were measured.

Methods: A pre-post, acceptability, and feasibility design was used. People living with cancer (N=114) were recruited via a national cancer charity in the United Kingdom and were given access to the iHOPE program. Demographic and other participant characteristics were recorded. Participants completed digital measures at baseline and the end of the 6-week program for depression, anxiety, cancer-related fatigue, cancer worry or fear of cancer recurrence, positive mental well-being, hope, gratitude, and health status. The website's system recorded data on the usage of the program. Satisfaction with the program was also measured.

Results: A total of 114 participants completed the baseline questionnaires. Of these, 70 people (61.4%) participated in all 6 sessions. The mean number of sessions undertaken was 5.0 (SD 1.5). Moreover, 44.7% (51/114) of participants completed at least three sessions and end-of-program outcome measures. A total of 59 participants completed the satisfaction questionnaire, where ≥90% (54/58) of participants reported that the program was easy to navigate and was well managed by the peer facilitators, and that they found the social networking tools useful. Preliminary efficacy testing among the 51 participants who completed baseline and postprogram outcome measures showed that postprogram scores decreased for depression, anxiety, cancer-related fatigue, and fear of recurrence (all P<.001) and increased for positive mental well-being (P<.001), hope (both P<.001), and gratitude (P=.02).

Conclusions: The feasibility evidence is promising, showing that the peer-delivered digital iHOPE program is acceptable and practical. Implementation of the iHOPE program on a wider scale will incorporate further research and development to maximize the completion rates of the measures. Initial effectiveness data suggest positive impacts on important cancer-related quality of life and mental well-being outcomes. A randomized controlled trial design with a longer follow-up is needed to confirm the potential of the iHOPE program for improving mental and physical health outcomes for cancer survivors.
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May 2020

Postoperative Remote Automated Monitoring and Virtual Hospital-to-Home Care System Following Cardiac and Major Vascular Surgery: User Testing Study.

J Med Internet Res 2020 03 18;22(3):e15548. Epub 2020 Mar 18.

Population Health Research Institute, Hamilton, ON, Canada.

Background: Cardiac and major vascular surgeries are common surgical procedures associated with high rates of postsurgical complications and related hospital readmission. In-hospital remote automated monitoring (RAM) and virtual hospital-to-home patient care systems have major potential to improve patient outcomes following cardiac and major vascular surgery. However, the science of deploying and evaluating these systems is complex and subject to risk of implementation failure.

Objective: As a precursor to a randomized controlled trial (RCT), this user testing study aimed to examine user performance and acceptance of a RAM and virtual hospital-to-home care intervention, using Philip's Guardian and Electronic Transition to Ambulatory Care (eTrAC) technologies, respectively.

Methods: Nurses and patients participated in systems training and individual case-based user testing at two participating sites in Canada and the United Kingdom. Participants were video recorded and asked to think aloud while completing required user tasks and while being rated on user performance. Feedback was also solicited about the user experience, including user satisfaction and acceptance, through use of the Net Promoter Scale (NPS) survey and debrief interviews.

Results: A total of 37 participants (26 nurses and 11 patients) completed user testing. The majority of nurse and patient participants were able to complete most required tasks independently, demonstrating comprehension and retention of required Guardian and eTrAC system workflows. Tasks which required additional prompting by the facilitator, for some, were related to the use of system features that enable continuous transmission of patient vital signs (eg, pairing wireless sensors to the patient) and assigning remote patient monitoring protocols. NPS scores by user group (nurses using Guardian: mean 8.8, SD 0.89; nurses using eTrAC: mean 7.7, SD 1.4; patients using eTrAC: mean 9.2, SD 0.75), overall NPS scores, and participant debrief interviews indicated nurse and patient satisfaction and acceptance of the Guardian and eTrAC systems. Both user groups stressed the need for additional opportunities to practice in order to become comfortable and proficient in the use of these systems.

Conclusions: User testing indicated a high degree of user acceptance of Philips' Guardian and eTrAC systems among nurses and patients. Key insights were provided that informed refinement of clinical workflow training and systems implementation. These results were used to optimize workflows before the launch of an international RCT of in-hospital RAM and virtual hospital-to-home care for patients undergoing cardiac and major vascular surgery.
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March 2020

Postoperative Remote Automated Monitoring: Need for and State of the Science.

Can J Cardiol 2018 07 25;34(7):850-862. Epub 2018 Apr 25.

McMaster University, Faculty of Health Sciences, Hamilton, Ontario, Canada; Population Health Research Institute, McMaster University and Hamilton Health Sciences, Hamilton, Ontario, Canada.

Worldwide, more than 230 million adults have major noncardiac surgery each year. Although surgery can improve quality and duration of life, it can also precipitate major complications. Moreover, a substantial proportion of deaths occur after discharge. Current systems for monitoring patients postoperatively, on surgical wards and after transition to home, are inadequate. On the surgical ward, vital signs evaluation usually occurs only every 4-8 hours. Reduced in-hospital ward monitoring, followed by no vital signs monitoring at home, leads to thousands of cases of undetected/delayed detection of hemodynamic compromise. In this article we review work to date on postoperative remote automated monitoring on surgical wards and strategy for advancing this field. Key considerations for overcoming current barriers to implementing remote automated monitoring in Canada are also presented.
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July 2018

Using Social Media to Generate and Collect Primary Data: The #ShowsWorkplaceCompassion Twitter Research Campaign.

JMIR Public Health Surveill 2018 Apr 23;4(2):e41. Epub 2018 Apr 23.

School of Nursing, Midwifery and Health, Coventry University, Coventry, United Kingdom.

Background: Compassion is a core value embedded in the concept of quality in healthcare. The need for compassion toward healthcare staff in the workplace, for their own health and well-being and also to enable staff to deliver compassionate care for patients, is increasingly understood. However, we do not currently know how healthcare staff understand and characterize compassion toward themselves as opposed to patients.

Objective: The aim of this study was to use social media for the generation and collection of primary data to gain understanding of the concept of workplace compassion.

Methods: Tweets that contained the hashtag #ShowsWorkplaceCompassion were collected from Twitter and analyzed. The study took place between April 21 and May 21, 2016. Participants were self-selecting users of the social media service Twitter. The study was promoted by a number of routes: the National Health Service (NHS) England website, the personal Twitter accounts of the research team, internal NHS England communications, and via social media sharing. Participants were asked to contribute their views about what activities, actions, policies, philosophies or approaches demonstrate workplace compassion in healthcare using the hashtag #ShowsWorkplaceCompassion. All tweets including the research hashtag #ShowsWorkplaceCompassion were extracted from Twitter and studied using content analysis. Data concerning the frequency, nature, origin, and location of Web-based engagement with the research campaign were collected using Bitly (Bitly, Inc, USA) and Symplur (Symplur LLC, USA) software.

Results: A total of 260 tweets were analyzed. Of the 251 statements within the tweets that were coded, 37.8% (95/251) of the statements concerned Leadership and Management aspects of workplace compassion, 29.5% (74/251) were grouped under the theme related to Values and Culture, 17.5% (44/251) of the statements related to Personalized Policies and Procedures that support workplace compassion, and 15.2% (38/251) of the statements concerned Activities and Actions that show workplace compassion. Content analysis showed that small acts of kindness, an embedded organizational culture of caring for one another, and recognition of the emotional and physical impact of healthcare work were the most frequently mentioned characteristics of workplace compassion in healthcare.

Conclusions: This study presents a new and innovative research approach using Twitter. Although previous research has analyzed the nature and pattern of tweets retrospectively, this study used Twitter to both recruit participants and collect primary data.
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April 2018

'It's a silver lining': A template analysis of satisfaction and quality of life following post-mastectomy breast reconstruction.

Br J Health Psychol 2018 05 2;23(2):455-475. Epub 2018 Mar 2.

Faculty of Health & Life Sciences, Centre for Technology Enabled Health Research, Coventry University, UK.

Objective: In the United Kingdom, the number of women undergoing post-mastectomy breast reconstruction is increasing. Consequently, exploring patient-reported outcomes in breast surgery has become increasingly important. This study investigated satisfaction and quality of life following post-mastectomy breast reconstruction.

Design: Qualitative research design.

Methods: In-depth, semi-structured telephone interviews were conducted with 25 women (age, M = 53.08, SD = 8.41) following breast reconstruction in the United Kingdom. Data were analysed using template analysis which produced three-first-level, 13 second-level, and 19 third-level themes.

Results: Following reconstruction, women reported improved emotional functioning, although this was often accompanied by deterioration in physical, sexual, and/or social functioning. Women positively appraised their breast appearance, although some reported a decline in satisfaction over time, attributing this decline to their chosen reconstructive technique. Many women accepted the inevitability of scarring and most perceived their scars as a representation of their journey, signifying survival. Generally, women were satisfied with the outcome of their reconstruction, although on reflection some would not have opted for reconstruction. Following breast reconstruction, women were increasingly likely to experience the fear of recurrence, attributed to no longer being able to have a mammogram on the affected breast(s).

Conclusions: This study provides new insights into post-mastectomy breast reconstruction and is a novel application of template analysis. The analysis demonstrates only slight variation in some categories of experience among women, despite a heterogeneous sample. The findings allow researchers and clinicians to focus on specific dimensions of satisfaction and quality of life to support the needs of women following reconstruction. Statement of contribution What is already known on this subject? Patient satisfaction and quality of life are key patient-reported outcomes of breast reconstruction, although relatively few studies distinguish between types of satisfaction. The number of women electing to undergo reconstructive surgery is steadily increasing. As a consequence, exploring patient-reported outcomes in reconstructive breast surgery has become increasingly important for research and clinical practice. It is often suggested that breast reconstruction offers psychosocial benefits, although within the literature some mixed findings have been reported. Therefore, a qualitative exploration has the potential to add some clarity to the experiences of women following post-mastectomy breast reconstruction. What does this study add? To our knowledge, this is the first study to employ template analysis to explore the experiences of women following post-mastectomy breast reconstruction. Template analysis demonstrated that there was only slight variation in some categories of experience among women, despite a heterogeneous sample. This study distinguishes between the patient-reported outcomes breast satisfaction and outcome satisfaction to identify the key factors that are involved in determining satisfaction. The findings allow researchers and clinicians to focus on specific dimensions of satisfaction and quality of life which require improvement to support the unmet needs of women following breast reconstruction. The study presents two novel findings. Women attributed the fear of cancer recurrence to no longer being able to have a mammogram on the affected breast(s). Women also reported a decline in appearance-related satisfaction over time due to either the ptotic nature of autologous-based reconstruction or the fuller projected breast implant-based reconstruction affords.
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May 2018

A systematic mixed-methods review of interventions, outcomes and experiences for midwives and student midwives in work-related psychological distress.

Midwifery 2017 Jul 13;50:163-173. Epub 2017 Apr 13.

Centre for Technology Enabled Health Research Faculty of Health and Life Sciences, Richard Crossman Building (4th Floor) Coventry University, Priory Street, Coventry CV1 5FB, United Kingdom.

Background: within challenging work environments, midwives and student midwives can experience both organisational and occupational sources of work-related psychological distress. As the wellbeing of healthcare staff directly correlates with the quality of maternity care, this distress must be met with adequate support provision. As such, the identification and appraisal of interventions designed to support midwives and student midwives in work-related psychological distress will be important in the pursuit of excellence in maternity care.

Objectives: to identify interventions designed to support midwives and/or student midwives in work-related psychological distress, and explore any outcomes and experiences associated with their use. Data sources; study eligibility criteria, participants, and interventions This systematic mixed-methods review examined 6 articles which identified interventions designed to support midwives and/or student midwives in work-related psychological distress, and reports both the outcomes and experiences associated with their use. All relevant papers published internationally from the year 2000 to 2016, which evaluated and identified targeted interventions were included.

Study Appraisal And Synthesis Methods: the reporting of this review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. The quality of each study has been appraised using a scoring system designed for appraising mixed-methods research, and concomitantly appraising qualitative, quantitative and mixed-methods primary studies in mixed reviews. Bias has been assessed using an assessment of methodological rigor tool. Whilst taking a segregated systematic mixed-methods review approach, findings have been synthesised narratively.

Findings: this review identified mindfulness interventions, work-based resilience workshops partnered with a mentoring programme and the provision of clinical supervision, each reported to provide a variety of both personal and professional positive outcomes and experiences for midwives and/or student midwives. However, some midwives and/or student midwives reported less favourable experiences, and some were unable to participate in the interventions as provided for practical reasons.

Limitations: eligible studies were few, were not of high quality and were limited to international findings within first world countries. Additionally, two of the papers included related to the same intervention. Due to a paucity of studies, this review could not perform sensitivity analyses, subgroup analyses, meta-analysis or meta-regression. CONCLUSIONS AND IMPLICATIONS OF KEY FINDINGS: there is a lack of evidence based interventions available to support both midwives and student midwives in work-related psychological distress. Available studies reported positive outcomes and experiences for the majority of participants. However, future intervention studies will need to ensure that they are flexible enough for midwives and student midwives to engage with. Future intervention research has the opportunity to progress towards more rigorous studies, particularly ones which include midwives and student midwives as solitary population samples.
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July 2017

"My patients are better than yours": optimistic bias about patients' medication adherence by European health care professionals.

Patient Prefer Adherence 2016 26;10:1937-1944. Epub 2016 Sep 26.

Department of Family Medicine, Medical University of Lodz, Lodz, Poland.

Objectives: The objectives of this study were to determine the perceptions of European physicians, nurses, and pharmacists about the extent of nonadherence by patients in their country relative to their perception of nonadherence by their own patients, and to investigate the occurrence of optimistic bias about medication adherence. The study explored a key cognitive bias for prevalence and likelihood estimates in the context of health care professionals' beliefs about patients' use of medicines.

Methods: A cross-sectional online survey of 3,196 physicians (855), nurses (1,294), and pharmacists (1,047) in ten European countries (Austria, Belgium, England, France, Germany, Hungary, the Netherlands, Poland, Portugal, and Switzerland) was used.

Results: Participants differed in their perceptions of the prevalence of medication adherence initiation, implementation, and persistence present in their own patients with a chronic illness in comparison to patients with a chronic illness in general. Health care professionals demonstrated optimistic bias for initiation and persistence with medicine taking, perceiving their own patients to be more likely to initiate and persist with treatment than other patients, but reported significantly lower prevalence of medication adherence levels for their own patients than for patients in general. This finding is discussed in terms of motivational and cognitive factors that may foster optimistic bias by health care professionals about their patients, including heightened knowledge of, and positive beliefs about, their own professional competence and service delivery relative to care and treatment provided elsewhere.

Conclusion: Health care professionals in Europe demonstrated significant differences in their perceptions of medication adherence prevalence by their own patients in comparison to patients in general. Some evidence of optimistic bias by health care professionals about their patients' behavior is observed. Further social cognitive theory-based research of health care professional beliefs about medication adherence is warranted to enable theory-based practitioner-focused interventions to be tested and implemented.
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September 2016

Technology-Enabled Remote Monitoring and Self-Management - Vision for Patient Empowerment Following Cardiac and Vascular Surgery: User Testing and Randomized Controlled Trial Protocol.

JMIR Res Protoc 2016 Aug 1;5(3):e149. Epub 2016 Aug 1.

McMaster University, Hamiltion, ON, Canada.

Background: Tens of thousands of cardiac and vascular surgeries (CaVS) are performed on seniors in Canada and the United Kingdom each year to improve survival, relieve disease symptoms, and improve health-related quality of life (HRQL). However, chronic postsurgical pain (CPSP), undetected or delayed detection of hemodynamic compromise, complications, and related poor functional status are major problems for substantial numbers of patients during the recovery process. To tackle this problem, we aim to refine and test the effectiveness of an eHealth-enabled service delivery intervention, TecHnology-Enabled remote monitoring and Self-MAnagemenT-VIsion for patient EmpoWerment following Cardiac and VasculaR surgery (THE SMArTVIEW, CoVeRed), which combines remote monitoring, education, and self-management training to optimize recovery outcomes and experience of seniors undergoing CaVS in Canada and the United Kingdom.

Objective: Our objectives are to (1) refine SMArTVIEW via high-fidelity user testing and (2) examine the effectiveness of SMArTVIEW via a randomized controlled trial (RCT).

Methods: CaVS patients and clinicians will engage in two cycles of focus groups and usability testing at each site; feedback will be elicited about expectations and experience of SMArTVIEW, in context. The data will be used to refine the SMArTVIEW eHealth delivery program. Upon transfer to the surgical ward (ie, post-intensive care unit [ICU]), 256 CaVS patients will be reassessed postoperatively and randomly allocated via an interactive Web randomization system to the intervention group or usual care. The SMArTVIEW intervention will run from surgical ward day 2 until 8 weeks following surgery. Outcome assessments will occur on postoperative day 30; at week 8; and at 3, 6, 9, and 12 months. The primary outcome is worst postop pain intensity upon movement in the previous 24 hours (Brief Pain Inventory-Short Form), averaged across the previous 14 days. Secondary outcomes include a composite of postoperative complications related to hemodynamic compromise-death, myocardial infarction, and nonfatal stroke- all-cause mortality and surgical site infections, functional status (Medical Outcomes Study Short Form-12), depressive symptoms (Geriatric Depression Scale), health service utilization-related costs (health service utilization data from the Institute for Clinical Evaluative Sciences data repository), and patient-level cost of recovery (Ambulatory Home Care Record). A linear mixed model will be used to assess the effects of the intervention on the primary outcome, with an a priori contrast of weekly average worst pain intensity upon movement to evaluate the primary endpoint of pain at 8 weeks postoperation. We will also examine the incremental cost of the intervention compared to usual care using a regression model to estimate the difference in expected health care costs between groups.

Results: Study start-up is underway and usability testing is scheduled to begin in the fall of 2016.

Conclusions: Given our experience, dedicated industry partners, and related RCT infrastructure, we are confident we can make a lasting contribution to improving the care of seniors who undergo CaVS.
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August 2016

Achieving Consensus for the Design and Delivery of an Online Intervention to Support Midwives in Work-Related Psychological Distress: Results From a Delphi Study.

JMIR Ment Health 2016 Jul 12;3(3):e32. Epub 2016 Jul 12.

Centre for Technology Enabled Health Research, Faculty of Health and Life Sciences, Coventry University, Coventry, United Kingdom.

Background: Some midwives are known to experience both professional and organizational sources of psychological distress, which can manifest as a result of the emotionally demanding midwifery work, and the traumatic work environments they endure. An online intervention may be one option midwives may engage with in pursuit of effective support. However, the priorities for the development of an online intervention to effectively support midwives in work-related psychological distress have yet to be explored.

Objective: The aim of this study was to explore priorities in the development of an online intervention to support midwives in work-related psychological distress.

Methods: A two-round online Delphi study was conducted. This study invited both qualitative and quantitative data from experts recruited via a scoping literature search and social media channels.

Results: In total, 185 experts were invited to participate in this Delphi study. Of all participants invited to contribute, 35.7% (66/185) completed Round 1 and of those who participated in this first round, 67% (44/66) continued to complete Round 2. Out of 39 questions posed over two rounds, 18 statements (46%) achieved consensus, 21 (54%) did not. Participants were given the opportunity to write any additional comments as free text. In total, 1604 free text responses were collected and categorized into 2446 separate statements of opinion, creating a total of 442 themes. Overall, participants agreed that in order to effectively support midwives in work-related psychological distress, online interventions should make confidentiality and anonymity a high priority, along with 24-hour mobile access, effective moderation, an online discussion forum, and additional legal, educational, and therapeutic components. It was also agreed that midwives should be offered a simple user assessment to identify those people deemed to be at risk of either causing harm to others or experiencing harm themselves, and direct them to appropriate support.

Conclusions: This study has identified priorities for the development of online interventions to effectively support midwives in work-related psychological distress. The impact of any future intervention of this type will be optimized by utilizing these findings in the development process.
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July 2016

Confidentiality, anonymity and amnesty for midwives in distress seeking online support - Ethical?

Nurs Ethics 2018 Jun 4;25(4):481-504. Epub 2016 Jul 4.

The Hurley Group, UK.

Background: Midwife health is intrinsically linked to the quality of safe patient care. To ensure safe patient care, there is a need to deliver emotional support to midwives. One option that midwives may turn to may be a confidential online intervention, instead of localised, face-to-face support.

Research Design: Following the Realist And MEta-narrative Evidence Syntheses: Evolving Standards publication standards, this realist synthesis approach explores the ethical considerations in permitting confidentiality, anonymity and amnesty in online interventions to support midwives in work-related psychological distress. An iterative search methodology was used to select nine papers for review. To assimilate information, papers were examined for ideas relating to ethical dimensions of online interventions to support midwives in work-related psychological distress. This review takes a narrative approach.

Findings: Online interventions can support the development of insight, help seeking and open discussion. Additionally, Internet support groups can become morally persuasive in nature. Anonymity and confidentiality are both effective and therapeutic features of online interventions when used in collaboration with effective online moderation. Yet, ethical dilemmas remain where users cannot be identified.

Discussion: Confidentiality and anonymity remain key components of successful online interventions. However, sanctioning the corollary component of amnesty may provoke moral discomfort for those seeking immediate accountability. For others, amnesty is seen as essential for open disclosure and help seeking. Ultimately, the needs of midwives must be balanced with the requirement to protect the public and the professional reputation of midwifery.

Conclusion: In supporting midwives online, the principles of anonymity, confidentiality and amnesty may evoke some resistance on ethical grounds. However, without offering identity protection, it may not be possible to create effective online support services for midwives. The authors of this article argue that the principles of confidentiality, anonymity and amnesty should be upheld in the pursuit of the greatest benefit for the greatest number of people.
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June 2018

Development and feasibility of the Help to Overcome Problems Effectively (HOPE) self-management intervention for people living with multiple sclerosis.

Disabil Rehabil 2017 06 9;39(11):1114-1121. Epub 2016 Jun 9.

a Centre for Technology Enabled Health Research , Coventry University , Coventry , UK.

Purpose: To describe the development and feasibility of a self-management intervention called the Help to Overcome Problems Effectively (HOPE: MS), aimed at improving the physical and psychological wellbeing of people living with Multiple Sclerosis (MS).

Method: HOPE: MS is an innovative, 6-week group-based, manualised self-management intervention combining positive psychology theory and practice, and cognitive behavioural therapy (CBT). Participants (N = 21) recruited via a local East Midlands branch of the MS Society attended one of three HOPE: MS interventions and completed self-reported outcome measures in week 1 and week 6. The following outcome measures were used: The Multiple Sclerosis Impact Scale; Multiple Sclerosis Fatigue Severity Scale; The Multiple Sclerosis Self-Efficacy Scale; The Adult State Hope Scale; The Hospital Anxiety and Depression Scale; The Positive and Negative Affect Scale.

Results: Post-intervention (6 weeks) mean scores decreased in the physical impact (baseline M = 65.6, SD = 17.4; 6 weeks M = 55.1, SD = 17.9, 95% CI [-4.39, -16.47] and the psychological impact of MS (baseline M = 24.0, SD = 7.3; 6 weeks M = 18.9; SD = 6.3, 95% CI [-2.54, -7.66]). There was also a decrease mean fatigue severity scores (baseline 49.4, SD = 13.3, 6 weeks M = 41.1, SD = 14.4, 95% CI [-2.65, -13.44]). There was a mean decrease in depression scores (baseline M = 6.9, SD = 3.5; 6 weeks M = 4.2, SD = 2.8, 95% CI [-1.43, -4.00]). There were smaller mean decreases in anxiety (baseline M = 7.6, SD = 3.4; 6 weeks M = 6.7 (4.0), 95% CI [0.69, -2.50]) and negative affect (baseline M = 22.9, SD = 6.8; 6 weeks M = 20.8 (8.1), 95% CI [0.69, -2.50]) refer Table 3 ). Mean MS self-efficacy scores (baseline 21.7, SD = 4.2; 6 weeks M = 24.1, SD = 4.7, 95% CI [0.23, 4.53]), mean total hope scores (baseline M = 23.3, SD = 10.7; 6 weeks M = 32.2 (10.6), 95% CI [4.91, 12.9]), hope agency scores (baseline M = 10.5, SD = 5.7; 6 weeks M = 15.7 (6.2), 95% CI [2.37, 8.01]), hope pathways (baseline M = 12.9, SD = 6.0; 6 weeks M = 16.6 (4.9), 95% CI [2.00, 5.43]) and positive affect scores increased (baseline M = 27.3, SD = 7.1; 6 months M = 32.2, SD = 8.4, 95% CI [0.42, 9.39]). Participants positively rated the intervention quality and delivery.

Conclusions: This feasibility study showed that the HOPE: MS was acceptable and useful to people living with MS. Further robust evaluations using a randomised controlled trial design with longer follow ups are needed to confirm early promising results of the HOPE: MS. Implications for rehabilitation Living with MS requires constant adjustments to cope with unpredictable symptoms. Self-management interventions have the potential to help people living with MS to improve their quality of life. A feasibility study of the HOPE: MS self-management group-based intervention showed that it was acceptable and useful to people living with MS.
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June 2017

A multinational cross-sectional survey of the management of patient medication adherence by European healthcare professionals.

BMJ Open 2016 Feb 1;6(2):e009610. Epub 2016 Feb 1.

First Department of Family Medicine, Medical University of Lodz, Lodz, Poland.

Objectives: To examine which interventions healthcare professionals use to support patients with taking medicines and their perceptions about the effectiveness of those actions.

Design: Cross-sectional multinational study.

Setting: Online survey in Austria, Belgium, England, France, Germany, Hungary, The Netherlands, Poland, Portugal and Switzerland.

Participants: A total of 3196 healthcare professionals comprising doctors (855), nurses (1047) and pharmacists (1294) currently registered and practising in primary care and community settings.

Main Outcome Measures:

Primary Outcome: Responses to the question 'I ask patients if they have missed any doses of their medication' for each profession and in each country.Secondary outcome: Responses to 50 items concerning healthcare professional behaviour to support patients with medication-taking for each profession and in each country.

Results: Approximately half of the healthcare professionals in the survey ask patients with long-term conditions whether they have missed any doses of their medication on a regular basis. Pharmacists persistently report that they intervene less than the other two professions to support patients with medicines. No country effects were found for the primary outcome.

Conclusions: Healthcare professionals in Europe are limited in the extent to which they intervene to assist patients having long-term conditions with medication adherence. This represents a missed opportunity to support people with prescribed treatment. These conclusions are based on the largest international survey to date of healthcare professionals' management of medication adherence.
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February 2016

A mixed-methods study of the implementation of medication adherence policy solutions: how do European countries compare?

Patient Prefer Adherence 2015 27;9:1505-15. Epub 2015 Oct 27.

Primary Care and Health Sciences, Keele University, Staffordshire, UK.

Objectives: We describe a key informant study that invited national medicines policy leads for the European Union member states to self-assess the level of implementation of medicines adherence initiatives in their country and the adequacy of that implementation. Interviews with medicines policy leads enabled in-depth understanding of the variation in adherence support across nations and the ways in which different nations prioritize, plan, and implement medicines adherence systems and services.

Methods: Ten national policy leads (Bulgaria, Denmark, Estonia, Finland, Germany, Ireland, Latvia, Lithuania, Malta, and the Netherlands) completed a self-assessment survey, and seven (Estonia, Finland, Germany, Ireland, Lithuania, Malta, and the Netherlands) engaged in a follow-up interview.

Key Findings: Policy leads varied in the level of implementation of medication adherence solutions that they reported in their nations; most initiatives were aimed directly at patients with few initiatives at government or health care commissioner levels of action. Policy leads reported insufficient implementation of medication adherence initiatives across all potential domains. Barriers to implementation included lack of resources, strategic planning, evidence to support action, the "hidden" nature of medication adherence within policy work, and dispersed responsibility for medication adherence as a policy and practice theme.

Conclusion: This study has international significance and summarizes the emergent characteristics of nations with and without coordinated medication adherence activity. We highlight the importance of sharing good practice in policy formulation and implementation for medication adherence.
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November 2015

'Midwives Overboard!' Inside their hearts are breaking, their makeup may be flaking but their smile still stays on.

Women Birth 2016 Jun 27;29(3):e59-66. Epub 2015 Oct 27.

The Hurley Group, London, United Kingdom.

Problem: Midwifery practice is emotional and, at times, traumatic work. Cumulative exposure to this, in an unsupportive environment can result in the development of psychological and behavioural symptoms of distress.

Background: As there is a clear link between the wellbeing of staff and the quality of patient care, the issue of midwife wellbeing is gathering significant attention. Despite this, it can be rare to find a midwife who will publically admit to how much they are struggling. They soldier on, often in silence.

Aim: This paper aims to present a narrative review of the literature in relation to work-related psychological distress in midwifery populations. Opportunities for change are presented with the intention of generating further conversations within the academic and healthcare communities.

Methods: A narrative literature review was conducted.

Findings: Internationally, midwives experience various types of work-related psychological distress. These include both organisational and occupational sources of stress.

Discussion: Dysfunctional working cultures and inadequate support are not conducive to safe patient care or the sustained progressive development of the midwifery profession. New research, revised international strategies and new evidence based interventions of support are required to support midwives in psychological distress. This will in turn maximise patient, public and staff safety.

Conclusions: Ethically, midwives are entitled to a psychologically safe professional journey. This paper offers the principal conclusion that when maternity services invest in the mental health and wellbeing of midwives, they may reap the rewards of improved patient care, improved staff experience and safer maternity services.
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June 2016

Achieving Consensus in the Development of an Online Intervention Designed to Effectively Support Midwives in Work-Related Psychological Distress: Protocol for a Delphi Study.

JMIR Res Protoc 2015 Sep 4;4(3):e107. Epub 2015 Sep 4.

Centre for Technology Enabled Health Research, Faculty of Health and Life Sciences, Coventry University, Coventry, United Kingdom.

Background: The development of an online intervention designed to effectively support midwives in work-related psychological distress will be challenging due to the ethical, practical, and therapeutic issues surrounding its design. Related literature suggests that midwives may require an anonymous, confidential, and therapeutic platform that facilitates amnesty and nonpunitive approaches to remedy ill health. However, it is unclear which requirements may be most salient to midwifery populations.

Objective: The objective of this paper is to describe the design of a Delphi study, intended to achieve expert consensus on the needs of midwives in work-related psychological distress who may be supported via an online intervention. This protocol may also serve as a research framework for similar studies to be modeled upon.

Methods: A heterogeneous sample of at least thirty experts on psychological well-being and distress associated with midwifery work will be recruited. Their opinions regarding the development of an online intervention designed to support midwives in work-related psychological distress will be collected through 2 rounds of questioning, via the Delphi Technique. When 60% (≥18, assuming the minimum is 30) of panelists score within 2 adjacent points on a 7-point scale, consensus will be acknowledged. This Delphi study protocol will invite both qualitative and quantitative outcomes.

Results: This study is currently in development. It is financially supported by a full-time scholarship at the Centre for Technology Enabled Health Research at Coventry University (Coventry, UK). The implementation of this Delphi study is anticipated to occur during the autumn of 2015.

Conclusions: The results of this study will direct the development of an online intervention designed to support midwives in work-related psychological distress, summarize expert driven consensus, and direct future research.
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September 2015

Adherence of patients to long-term medication: a cross-sectional study of antihypertensive regimens in Austria.

Wien Klin Wochenschr 2015 May 24;127(9-10):379-84. Epub 2015 Apr 24.

Division of Infectious Diseases and Tropical Medicine, Department of Medicine I, Medical University of Vienna, Waehringer Guertel 18-20, 1090, Vienna, Austria.

Objective: The objective of this study was to evaluate adherence and causes for non-adherence to antihypertensive therapy in Austrian patients. A special focus was placed on social parameters and behavioural theories.

Methods: Patients were invited via advertisements in community pharmacies in Austria to complete an online survey. Inclusion criteria were an age of 18 years or older, a diagnosis of arterial hypertension and a current prescription of antihypertensive medication. Adherence was measured by the four-item Morisky scale. Non-adherence was defined by at least one point in the Morisky scale. Several demographic, social and behavioural parameters were analysed as potential co-variables associated with adherence.

Results: A total of 323 patients completed the online survey, of which 109 (33.7%) met the criteria for non-adherence. In a multivariable model, self-efficacy and age were associated with adherence, whereas intention and barriers were linked to non-adherence; 56 patients (17.3%) were classified as intentionally non-adherent.

Conclusion: This study demonstrates that non-adherence affects an important proportion of patients in the treatment of arterial hypertension. Young age was a particularly important risk factor for non-adherence, and this patient population is, therefore, in need of special attention. Modifiable risk factors were identified that could help improving the treatment of arterial hypertension and potentially other chronic conditions.
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May 2015

Predictors of self-reported adherence to antihypertensive medicines: a multinational, cross-sectional survey.

Value Health 2015 Mar;18(2):206-16

Centre for Health Economics & Medicines Evaluation, Bangor University, Bangor, UK. Electronic address:

Background: Nonadherence to antihypertensive medicines limits their effectiveness, increases the risk of adverse health outcome, and is associated with significant health care costs. The multiple causes of nonadherence differ both within and between patients and are influenced by patients' care settings.

Objectives: The objective of this article was to identify determinants of patient nonadherence to antihypertensive medicines, drawing from psychosocial and economic models of behavior.

Methods: Outpatients with hypertension from Austria, Belgium, England, Germany, Greece, Hungary, The Netherlands, Poland, and Wales were recruited to a cross-sectional online survey. Nonadherence to medicines was assessed using the Morisky Medication Adherence Scale (primary outcome) and the Medication Adherence Rating Scale. Associations with adherence and nonadherence were tested for demographic, clinical, and psychosocial factors.

Results: A total of 2595 patients completed the questionnaire. The percentage of patients classed as nonadherent ranged from 24% in The Netherlands to 70% in Hungary. Low age, low self-efficacy, and respondents' perceptions of their illness and cost-related barriers were associated with nonadherence measured on the Morisky Medication Adherence Scale across several countries. In multilevel, multivariate analysis, low self-efficacy (odds ratio = 0.73; 95% confidence interval 0.70-0.77) and a high number of perceived barriers to taking medicines (odds ratio = 1.70; 95% confidence interval 1.38-2.09) were the main significant determinants of nonadherence. Country differences explained 11% of the variance in nonadherence.

Conclusions: Among the variables measured, patients' adherence to antihypertensive medicines is influenced primarily by their self-efficacy, illness beliefs, and perceived barriers. These should be targets for interventions for improving adherence, as should an appreciation of differences among the countries in which they are being delivered.
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March 2015

Adherence in multiple sclerosis (ADAMS): classification, relevance, and research needs. A meeting report.

Mult Scler 2014 Nov 22;20(13):1795-8. Epub 2014 Apr 22.

Section of Public Health, Sheffield, UK.

Background: Adherence to medical interventions is a global problem. With an increasing amount of partially effective but expensive drug treatments adherence is increasingly relevant in multiple sclerosis (MS). Perceived lack of efficacy and side effects as well as neuropsychiatric factors such as forgetfulness, fatigue and depression are major determinants. However, research on adherence to behavioural interventions as part of rehabilitative interventions has only rarely been studied.

Methods: In a one-day meeting health researchers as well as patient representatives and other stakeholders discussed adherence issues in MS and developed a general draft research agenda within a focus group session.

Results: The focus group addressed four major areas: (1) focussing patients and their informal team; (2) studying health care professionals; (3) comparing practice across cultures; and (4) studying new adherence interventions.

Conclusions: A focus on patient preferences as well as a non-judgmental discussion on adherence issues with patients should be at the core of adherence work.
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November 2014

Developing consensus-based policy solutions for medicines adherence for Europe: a Delphi study.

BMC Health Serv Res 2012 Nov 23;12:425. Epub 2012 Nov 23.

School of Pharmacy, Keele University, Staffordshire, ST5 5BG, UK.

Background: Non-adherence to prescribed medication is a pervasive problem that can incur serious effects on patients' health outcomes and well-being, and the availability of resources in healthcare systems. This study aimed to develop practical consensus-based policy solutions to address medicines non-adherence for Europe.

Methods: A four-round Delphi study was conducted. The Delphi Expert Panel comprised 50 participants from 14 countries and was representative of: patient/carers organisations; healthcare providers and professionals; commissioners and policy makers; academics; and industry representatives. Participants engaged in the study remotely, anonymously and electronically. Participants were invited to respond to open questions about the causes, consequences and solutions to medicines non-adherence. Subsequent rounds refined responses, and sought ratings of the relative importance, and operational and political feasibility of each potential solution to medicines non-adherence. Feedback of individual and group responses was provided to participants after each round. Members of the Delphi Expert Panel and members of the research group participated in a consensus meeting upon completion of the Delphi study to discuss and further refine the proposed policy solutions.

Results: 43 separate policy solutions to medication non-adherence were agreed by the Panel. 25 policy solutions were prioritised based on composite scores for importance, and operational and political feasibility. Prioritised policy solutions focused on interventions for patients, training for healthcare professionals, and actions to support partnership between patients and healthcare professionals. Few solutions concerned actions by governments, healthcare commissioners, or interventions at the system level.

Conclusions: Consensus about practical actions necessary to address non-adherence to medicines has been developed for Europe. These actions are also applicable to other regions. Prioritised policy solutions for medicines non-adherence offer a benefit to policymakers and healthcare providers seeking to address this multifaceted, complex problem.
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November 2012

A new taxonomy for describing and defining adherence to medications.

Br J Clin Pharmacol 2012 May;73(5):691-705

AARDEX Group Ltd, Sion, Switzerland.

Interest in patient adherence has increased in recent years, with a growing literature that shows the pervasiveness of poor adherence to appropriately prescribed medications. However, four decades of adherence research has not resulted in uniformity in the terminology used to describe deviations from prescribed therapies. The aim of this review was to propose a new taxonomy, in which adherence to medications is conceptualized, based on behavioural and pharmacological science, and which will support quantifiable parameters. A systematic literature review was performed using MEDLINE, EMBASE, CINAHL, the Cochrane Library and PsycINFO from database inception to 1 April 2009. The objective was to identify the different conceptual approaches to adherence research. Definitions were analyzed according to time and methodological perspectives. A taxonomic approach was subsequently derived, evaluated and discussed with international experts. More than 10 different terms describing medication-taking behaviour were identified through the literature review, often with differing meanings. The conceptual foundation for a new, transparent taxonomy relies on three elements, which make a clear distinction between processes that describe actions through established routines ('Adherence to medications', 'Management of adherence') and the discipline that studies those processes ('Adherence-related sciences'). 'Adherence to medications' is the process by which patients take their medication as prescribed, further divided into three quantifiable phases: 'Initiation', 'Implementation' and 'Discontinuation'. In response to the proliferation of ambiguous or unquantifiable terms in the literature on medication adherence, this research has resulted in a new conceptual foundation for a transparent taxonomy. The terms and definitions are focused on promoting consistency and quantification in terminology and methods to aid in the conduct, analysis and interpretation of scientific studies of medication adherence.
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May 2012

Management of patient adherence to medications: protocol for an online survey of doctors, pharmacists and nurses in Europe.

BMJ Open 2011 Nov 3;1(1):e000355. Epub 2011 Nov 3.

NPC Plus, Keele University, Keele, UK.

Introduction It is widely recognised that many patients do not take prescribed medicines as advised. Research in this field has commonly focused on the role of the patient in non-adherence; however, healthcare professionals can also have a major influence on patient behaviour in taking medicines. This study examines the perceptions, beliefs and behaviours of healthcare professionals-doctors, pharmacists and nurses-about patient medication adherence. Methods and analysis This paper describes the study protocol and online questionnaire used in a cross-sectional survey of healthcare professionals in Europe. The participating countries include Austria, Belgium, France, Greece, The Netherlands, Germany, Poland, Portugal, Switzerland, Hungary, Italy and England. The study population comprises primary care and community-based doctors, pharmacists and nurses involved in the care of adult patients taking prescribed medicines for chronic and acute illnesses. Discussion Knowledge of the nature, extent and variability of the practices of healthcare professionals to support medication adherence could inform future service design, healthcare professional education, policy and research.
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November 2011

Validation of a scale for rating the delivery of psycho-social treatments for alcohol dependence and misuse: the UKATT Process Rating Scale (PRS).

Alcohol Alcohol 2008 Nov-Dec;43(6):675-82. Epub 2008 Sep 25.

Leeds Addiction Unit, Leeds Partnerships NHS Foundation Trust, Leeds, UK.

Aim: The aim of this study was to describe the development and validation of the UK Alcohol Treatment Trial Process Rating Scale (UKATT PRS), a manual based method for monitoring and rating the delivery of psychosocial treatments of alcohol dependence and misuse.

Methods: Following adaptation and further development of a validated rating scale, the ability of the UKATT PRS to rate the delivery of video-recorded treatment in the UK Alcohol Treatment Trial (UKATT) was tested.

Results: Tests of the validity and reliability of the UKATT PRS show that it is valid and reliably able to detect the two treatments for which it was designed and to discriminate between them.

Conclusions: The UKATT PRS is a valid and reliable method of rating the frequency and quality of therapeutic style and content in the delivery of two psycho-social treatments of alcohol use and dependence.
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May 2009