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1.
Pilot Feasibility Stud ; 9(1): 194, 2023 Nov 29.
Artigo em Inglês | MEDLINE | ID: mdl-38031132

RESUMO

BACKGROUND: Acquired brain injury (ABI) can lead to biopsychosocial changes such as depression, low self-esteem and fatigue. These changes can cause, and be caused by, sexual issues affecting relationships and wellbeing. Given the relationship between sexual wellbeing and mental health, it is feasible that supporting sexual wellbeing will benefit psychological wellbeing. However, neurorehabilitation is inconsistent and often fragmented across the UK, and psychological, sexual and social support are lacking. Research shows that self-management and peer-support programmes can improve quality of life, self-efficacy and psychological wellbeing after brain injury. This protocol describes a feasibility randomised controlled trial (RCT) of a digital self-management programme to support mental and sexual wellbeing (known as HOPE4ABI), co-designed with and for people with ABI. METHODS: This mixed-methods feasibility RCT has two parallel trial arms of the 8-week digital HOPE4ABI self-management programme. Eligibility criteria include age > 18 years, diagnosed or suspected ABI > 3 months prior to trial entry, access to an Internet-enabled device and ability to engage with the intervention. Referrals to the study website will be made via the National Health Service (NHS), social media and partnering organisations. Sixty eligible participants will be randomised at a ratio of 1:1 to peer-supported (n = 30) or self-directed (n = 30) HOPE4ABI programmes. Primary feasibility outcomes include recruitment and retention rates, engagement, adherence and usage. Secondary outcomes related to standardised measures of quality of life, sexual wellbeing and mental wellbeing. Participants and peer facilitators will be interviewed after the course to assess acceptability across both trial arms. DISCUSSION: This feasibility trial data is not sufficiently powered for inferential statistical analyses but will provide evidence of the feasibility of a full RCT. Quantitative trial data will be analysed descriptively, and participant screening data representing age, ethnicity and gender will be presented as proportions at the group level. These data may indicate trends in reach to particular demographic groups that can inform future recruitment strategies to widen participation. Progression to a definitive trial will be justified if predetermined criteria are met, relating to recruitment, retention, engagement and acceptability. TRIAL REGISTRATION: ISRCTN46988394 registered on March 1, 2023.

2.
BMJ Open ; 12(9): e059966, 2022 09 29.
Artigo em Inglês | MEDLINE | ID: mdl-36175099

RESUMO

INTRODUCTION: Patients with low levels of knowledge, skills and confidence to manage their health and well-being (activation) are more likely to have unmet health needs, delay seeking healthcare and need emergency care. National Health Service England estimates that this may be applicable to 25%-40% of patients with long-term health conditions. Volunteer peer coaching may support people to increase their level of activation. This form of intervention may be particularly effective for people with low levels of activation. METHODS AND ANALYSIS: This single site, two-arm randomised controlled trial has been designed to assess the feasibility of conducting a definitive trial of volunteer peer health and well-being coaching for people with long-term health conditions (multiple sclerosis, rheumatic diseases or chronic pain) and low activation. Feasibility outcomes include recruitment and retention rates, and intervention adherence. We will measure patient activation, mental health and well-being as potential outcomes for a definitive trial. These outcomes will be summarised descriptively for each time point by allocated group and help to inform sample size calculation for the definitive trial. Criteria for progression to a full trial will be used. ETHICS AND DISSEMINATION: Ethical approval has been granted by the London - Surrey Research Ethics Committee, reference 21/LO/0715. Results from this feasibility trial will be shared directly with participants, presented at local, regional and national conferences and published in an open-access journal. TRIAL REGISTRATION NUMBER: ISRCTN12623577.


Assuntos
Tutoria , Adulto , Comitês de Ética em Pesquisa , Estudos de Viabilidade , Humanos , Grupo Associado , Ensaios Clínicos Controlados Aleatórios como Assunto , Medicina Estatal
3.
JMIR Form Res ; 6(10): e41410, 2022 Oct 14.
Artigo em Inglês | MEDLINE | ID: mdl-36166651

RESUMO

BACKGROUND: There are around 1.3 million people in the United Kingdom with the devastating psychological, physical, and cognitive consequences of long COVID (LC). UK guidelines recommend that LC symptoms be managed pragmatically with holistic support for patients' biopsychosocial needs, including psychological, emotional, and physical health. Self-management strategies, such as pacing, prioritization, and goal setting, are vital for the self-management of many LC symptoms. OBJECTIVE: This paper describes the codevelopment and initial testing of a digital intervention combining peer support with positive psychology approaches for self-managing the physical, emotional, psychological, and cognitive challenges associated with LC. The objectives of this study were to (1) codesign an intervention with and for people with LC; (2) test the intervention and study methods; (3) measure changes in participant well-being, self-efficacy, fatigue, and loneliness; and (4) understand the types of self-management goals and strategies used by people with LC. METHODS: The study used a pre-post, mixed methods, pragmatic, uncontrolled design. Digital intervention content was codeveloped with a lived-experience group to meet the needs uncovered during the intervention development and logic mapping phase. The resulting 8-week digital intervention, Hope Programme for Long COVID, was attended by 47 participants, who completed pre- and postprogram measures of well-being, self-efficacy, fatigue, and loneliness. Goal-setting data were extracted from the digital platform at the end of the intervention. RESULTS: The recruitment rate (n=47, 83.9%) and follow-up rate (n=28, 59.6%) were encouraging. Positive mental well-being (mean difference 6.5, P<.001) and self-efficacy (mean difference 1.1, P=.009) improved from baseline to postcourse. All goals set by participants mapped onto the 5 goal-oriented domains in the taxonomy of everyday self-management strategies (TEDSS). The most frequent type of goals was related to activity strategies, followed by health behavior and internal strategies. CONCLUSIONS: The bespoke self-management intervention, Hope Programme for Long COVID, was well attended, and follow-up was encouraging. The sample characteristics largely mirrored those of the wider UK population with LC. Although not powered to detect statistically significant changes, the preliminary data show improvements in self-efficacy and positive mental well-being. Our next trial (ISRCTN: 11868601) will use a nonrandomized waitlist control design to further examine intervention efficacy.

4.
J Med Internet Res ; 23(11): e28322, 2021 11 05.
Artigo em Inglês | MEDLINE | ID: mdl-34738912

RESUMO

BACKGROUND: We present the results of a feasibility, randomized waitlist control group (CG) parallel design study with a 1:1 allocation ratio. Participants were randomized into an intervention group (IG) or a waitlist CG. The intervention was a 6-week digital self-management program, Help to Overcome Problems Effectively (HOPE), for people with cancer. OBJECTIVE: This study aims to test the feasibility of a digitally delivered self-management program for people with cancer. This will inform the design of a definitive randomized controlled trial. In addition, a preliminary assessment of the impact of the HOPE program via secondary outcomes will be used to assess signals of efficacy in a trial context. METHODS: Participants were drawn from an opportunity sample, referred by Macmillan Cancer Support, and were invited via email to participate in the study (N=61). Primary outcomes were rates of recruitment, retention, follow-up, completion and adherence, sample size and effect size estimation, and assessment of progression criteria for a definitive trial. Secondary outcomes were self-report measures of participants' positive mental well-being, depression, anxiety, and patient activation (ie, confidence in managing their cancer). The intervention and data collection took place on the web. RESULTS: The recruitment rate was 77% (47/61). A total of 41 participants completed the baseline questionnaires and were randomized to either the IG (n=21) or the waitlist CG (n=20). The retention rate (attending all program sessions) was greater than 50% (all: 21/41, 51%, IG: 10/21, 48%; and CG: 11/20, 55%). The follow-up rate (completing all questionnaires) was greater than 80% (all: 33/41, 80%; IG: 16/21, 76%; and CG: 17/20, 85%). The completion rate (attending ≥3 sessions and completing all questionnaires) was greater than 60% (all: 25/41, 61%; IG: 13/21, 62%; and CG: 12/20, 60%). Engagement data showed that participants viewed between half (5.1/10, 51%) and three-quarters (12.2/16, 76%) of the pages in each session. CONCLUSIONS: All progression criteria for a definitive trial were met, as supported by the primary outcome data. The IG showed improved postprogram scores on measures of positive mental well-being, depression, anxiety, and patient activation. A full-scale trial of the digital HOPE program for people with cancer will allow us to fully evaluate the efficacy of the intervention relative to a CG. TRIAL REGISTRATION: ISRCTN Registry ISRCTN79623250; http://www.isrctn.com/ISRCTN79623250. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/24264.


Assuntos
Neoplasias , Autogestão , Ansiedade , Transtornos de Ansiedade , Estudos de Viabilidade , Humanos , Neoplasias/terapia
5.
JMIR Res Protoc ; 9(12): e24264, 2020 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-33237877

RESUMO

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; http://www.isrctn.com/ISRCTN79623250. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/24264.

6.
J Med Internet Res ; 22(5): e17824, 2020 05 19.
Artigo em Inglês | MEDLINE | ID: mdl-32209529

RESUMO

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.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Autogestão/psicologia , Feminino , Humanos , Masculino , Neoplasias/psicologia
7.
J Med Internet Res ; 22(3): e15548, 2020 03 18.
Artigo em Inglês | MEDLINE | ID: mdl-32186521

RESUMO

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.


Assuntos
Doenças Cardiovasculares/cirurgia , Serviços de Assistência Domiciliar/normas , Hospitais/normas , Monitorização Fisiológica/métodos , Interface Usuário-Computador , Idoso , Feminino , Humanos , Masculino , Período Pós-Operatório
8.
Can J Pain ; 3(2): 26-35, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-35005416

RESUMO

Background: With coronary heart disease affecting over 2.4 million Canadians, annual cardiac and major vascular surgery rates are on the rise. Unrelieved postoperative pain is among the top five causes of hospital readmission following surgery; little is done to address this postoperative complication. Barriers to effective pain assessment and management following cardiac and major vascular surgery have been conceptualized on patient, health care provider, and system levels. Purpose: In this commentary, we review common patient, health care provider, and system-level barriers to effective postoperative pain assessment and management following cardiac and major vascular surgery. We then outline the SMArTVIEW intervention, with particular attention to components designed to optimize postoperative pain assessment and management. Methods: In conceptualizing the SMArTVIEW intervention design, we sought to address a number of these barriers by meeting the following design objectives: (1) orchestrating a structured process for regular postoperative pain assessment and management; (2) ensuring adequate clinician preparation for postoperative pain assessment and management in the context of virtual care; and (3) enfranchising patients to become active self-managers and to work with their health care providers to manage their pain postoperatively. Conclusions: Innovative approaches to address these barriers are a current challenge to health care providers and researchers alike. SMArTVIEW is spearheading this paradigm shift within clinical research to address barriers that impair effective postoperative pain management by actively engaging health care providers and patients in an accessible format (i.e., digital health solution) to give primacy to the need of postoperative pain assessment and management following cardiac and major vascular surgery.


Contexte: Alors que la maladie cardiaque coronarienne touche plus de 2,4 millions de Canadiens, les taux annuels de chirurgie cardiaque et de chirurgie vasculaire majeure sont en augmentation. Bien que la douleur postopératoire non soulagée compte parmi les cinq principales causes de réadmission à l'hôpital après une chirurgie, peu de choses sont faites pour remédier à cette complication postopératoire. Les barrières à l'évaluation et à la prise en charge efficaces de la douleur après une chirurgie cardiaque ou une chirurgie vasculaire majeure ont été conceptualisées aux niveaux du patient, du prestataire de soins et du système.But: Dans ce commentaire, nous examinons les barrières à l'évaluation et à la prise en charge efficace de la douleur postopératoire après une chirurgie cardiaque et une chirurgie vasculaire majeure au niveau du patient, du prestataire de soins et du système. Nous présentons ensuite l'intervention SMArTVIEW, en portant une attention particulière aux composantes conçues pour optimiser l'évaluation et la prise en charge de la douleur postopératoire.Méthodes: Au moment de conceptualiser l'intervention SMArTIEW, nous avons cherché à remédier à un certain nombre de ces barrières à partir des objectifs de conception suivants : 1) orchestrer un processus structuré pour l'évaluation et la prise en charge de la douleur postopératoire régulière; 2) assurer une préparation adéquate des cliniciens pour l'évaluation et la prise en charge de la douleur postopératoire dans un contexte de soins virtuels; et 3) affranchir les patients afin qu'ils puissent activement prendre en charge leur douleur postopératoire et travailler de concert avec les prestataires de soins.Conclusions: Les approches innovantes pour remédier à ces barrières sont un défi constant, tant pour les prestataires de soins que pour les chercheurs. SMArTVIEW est à l'avant-garde de ce changement de paradigme dans la recherche clinique qui a pour but de remédier aux barrières qui nuisent à la prise en charge efficace de la douleur postopératoire en engageant activement les prestataires de soins et les patients dans un format accessible (i.e. solution de santé numérique), afin que la primauté soit accordée à la nécessité d'évaluer et de prendre en charge la douleur postopératoire après une chirurgie cardiaque ou une chirurgie vasculaire majeure.

9.
Can J Cardiol ; 34(7): 850-862, 2018 07.
Artigo em Inglês | MEDLINE | ID: mdl-29960614

RESUMO

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.


Assuntos
Monitorização Fisiológica/métodos , Cuidados Pós-Operatórios/métodos , Procedimentos Cirúrgicos Operatórios , Telemedicina/métodos , Sinais Vitais/fisiologia , Humanos
10.
JMIR Public Health Surveill ; 4(2): e41, 2018 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-29685866

RESUMO

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.

11.
Br J Health Psychol ; 23(2): 455-475, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29498475

RESUMO

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.


Assuntos
Mamoplastia/psicologia , Mastectomia , Satisfação do Paciente/estatística & dados numéricos , Qualidade de Vida/psicologia , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido
12.
Nurs Ethics ; 25(4): 481-504, 2018 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27377890

RESUMO

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.


Assuntos
Confidencialidade , Ética em Enfermagem , Comportamento de Busca de Ajuda , Internet , Tocologia , Apoio Social , Estresse Psicológico/psicologia , Humanos
13.
Midwifery ; 50: 163-173, 2017 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-28458125

RESUMO

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.


Assuntos
Adaptação Psicológica , Enfermeiros Obstétricos/psicologia , Estresse Psicológico/complicações , Estudantes de Enfermagem/psicologia , Local de Trabalho/psicologia , Esgotamento Profissional/etiologia , Esgotamento Profissional/psicologia , Humanos , Acontecimentos que Mudam a Vida , Estresse Psicológico/etiologia , Estresse Psicológico/psicologia , Local de Trabalho/normas
14.
Disabil Rehabil ; 39(11): 1114-1121, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-27278670

RESUMO

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.


Assuntos
Esclerose Múltipla/reabilitação , Autocuidado , Adulto , Idoso , Terapia Cognitivo-Comportamental , Estudos de Viabilidade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/terapia , Desenvolvimento de Programas
15.
Patient Prefer Adherence ; 10: 1937-1944, 2016.
Artigo em Inglês | MEDLINE | ID: mdl-27713621

RESUMO

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.

16.
JMIR Ment Health ; 3(3): e32, 2016 Jul 12.
Artigo em Inglês | MEDLINE | ID: mdl-27405386

RESUMO

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.

17.
BMJ Open ; 6(2): e009610, 2016 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-26832430

RESUMO

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. 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.


Assuntos
Pesquisas sobre Atenção à Saúde , Pessoal de Saúde , Adesão à Medicação , Atenção Primária à Saúde , Adulto , Estudos Transversais , Europa (Continente) , Feminino , Humanos , Masculino , Papel do Profissional de Enfermagem , Farmacêuticos , Papel do Médico
18.
Women Birth ; 29(3): e59-66, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-26522961

RESUMO

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.


Assuntos
Tocologia/organização & administração , Feminino , Humanos , Gravidez
19.
Patient Prefer Adherence ; 9: 1505-15, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26604703

RESUMO

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.

20.
JMIR Res Protoc ; 4(3): e107, 2015 Sep 04.
Artigo em Inglês | MEDLINE | ID: mdl-26341794

RESUMO

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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