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1.
JMIR Form Res ; 8: e54586, 2024 May 21.
Artigo em Inglês | MEDLINE | ID: mdl-38772025

RESUMO

BACKGROUND: Sexual and gender minority youth are at greater risk of compromised mental health than their heterosexual and cisgender peers. This is considered to be due to an increased burden of stigma, discrimination, or bullying resulting in a heightened experience of daily stress. Given the increasing digital accessibility and a strong preference for web-based support among sexual and gender minority youth, digital interventions are a key means to provide support to maintain their well-being. OBJECTIVE: This paper aims to explicate the co-design processes and underpinning logic of Oneself, a bespoke web-based intervention for sexual and gender minority youth. METHODS: This study followed a 6-stage process set out by Hagen et al (identify, define, position, concept, create, and use), incorporating a systematic scoping review of existing evidence, focus groups with 4 stakeholder groups (ie, sexual and gender minority youth, professionals who directly support them, parents, and UK public health service commissioners), a series of co-design workshops and web-based consultations with sexual and gender minority youth, the appointment of a digital development company, and young adult sexual and gender minority contributors to create content grounded in authentic experiences. RESULTS: Oneself features a welcome and home page, including a free accessible to all animation explaining the importance of using appropriate pronouns and the opportunity to create a user account and log-in to access further free content. Creating an account provides an opportunity (for the user and the research team) to record engagement, assess users' well-being, and track progress through the available content. There are three sections of content in Oneself focused on the priority topics identified through co-design: (1) coming out and doing so safely; (2) managing school, including homophobic, biphobic, or transphobic bullying or similar; and (3) dealing with parents and families, especially unsupportive family members, including parents or caregivers. Oneself's content focuses on identifying these as topic areas and providing potential resources to assist sexual and gender minority youth in coping with these areas. For instance, Oneself drew on therapeutic concepts such as cognitive reframing, stress reduction, and problem-solving techniques. There is also a section containing relaxation exercises, a section with links to other recommended support and resources, and a downloads section with more detailed techniques and strategies for improving well-being. CONCLUSIONS: This study contributes to research by opening up the black box of intervention development. It shows how Oneself is underpinned by a logic that can support future development and evaluation and includes diverse co-designers. More interactive techniques to support well-being would be beneficial for further development. Additional content specific to a wider range of intersecting identities (such as care-experienced Asian sexual and gender minority youth from a minority faith background) would also be beneficial in future Oneself developments. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/31036.

2.
Cancer Med ; 12(7): 8652-8661, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36647702

RESUMO

OBJECTIVE: Interventions to support patients' engagement in shared decision making (SDM) are lacking within high-grade glioma (HGG) healthcare. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first study of CPRS within a HGG population and delivered over serial medical consultations. METHOD: A one-arm prospective qualitative longitudinal design was used to evaluate the CPRS intervention and evaluated with participants at sequential clinic appointments depending on their care, in Edinburgh, Scotland. We report on serial semi structured interviews of 16 patients and their partners. RESULTS: Consultation planning before the consultation supported patients to feel known by strengthening the patient voice within the consultation. It prepared patients to actively participate in the consultation, despite the distressing nature of the content. Recording and summarising supported patients to understand their situation. The provision of a consultation record enabled accurate recall, a paced uptake of information and supported the family to feel fully informed. Ultimately, patients understood why decisions were being made rather than being part of making decisions. CONCLUSIONS: The CPRS intervention helped patients to understand and to feel known by increasing patient capacity for communication in the consultation, with support before, during, and after the consultation. The intervention focused on preparing patients for SDM but patients did not perceive that they had meaningful choices to make. Further research could look at the inclusion of patient decision aids to support this process.


Assuntos
Tomada de Decisões , Glioma , Humanos , Estudos Prospectivos , Emoções , Encaminhamento e Consulta , Relações Médico-Paciente , Glioma/terapia
3.
Artigo em Inglês | MEDLINE | ID: mdl-35886595

RESUMO

Robust population-based research has established that sexual and gender minority youths (SGMYs) are at an increased risk of mental ill-health, but there is a dearth of literature that seeks to explore how to best support SGMY mental wellbeing. This scoping review aims to identify findings related to coping strategies and/or interventions for building resilience and/or enhancing the mental wellbeing of SGMYs. PRISMA extension for scoping review (PRISMA-ScR) guidelines was utilized for this review. Studies were included if they were peer-reviewed papers containing primary data; reported psycho-social coping strategies for SGMY; were conducted with SGMYs in the adolescent age range; and were published in English. MEDLINE, Embase, and PsycINFO databases were searched. Of the 3692 papers initially identified, 68 papers were included with 24 intervention-focused studies of 17 unique interventions found. The most commonly cited therapeutic modality was cognitive behavioral therapy (CBT) (n = 11 studies). Despite the need to support the mental wellbeing of SGMYs, few interventions focused on this area and unique populations have been reported upon in the peer-reviewed literature. As a result, there is considerable potential to develop supports for SGMYs.


Assuntos
Minorias Sexuais e de Gênero , Adaptação Psicológica , Adolescente , Identidade de Gênero , Humanos , Saúde Mental , Comportamento Sexual
4.
JMIR Res Protoc ; 11(2): e31036, 2022 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-35103613

RESUMO

BACKGROUND: Sexual and gender minority youth (SGMY) are at an increased risk of a range of mental health problems. However, few evidence-informed interventions have been developed specifically to support their mental well-being. Interventions that are evidence-informed for the general population and are fine-tuned specifically with SGMY in mind proffer considerable potential. A particular opportunity lies in the delivery of engaging interventions on the web, where the focus is on enhancing the coping skills and building the resilience of SGMY, in a way that is directly relevant to their experiences. On the basis of earlier work related to an intervention called Rainbow SPARX (Smart, Positive, Active, Realistic, X-factor thoughts), we seek to create a new resource, especially for SGMY in the United Kingdom. OBJECTIVE: This project has 3 main objectives. First, together with SGMY as well as key adult experts, we aim to co-design a media-rich evidence-informed web-based SGMY well-being prototype toolkit aimed at those aged between 13 and 19 years. Second, we will explore how the web-based toolkit can be used within public health systems in the United Kingdom by SGMY and potentially other relevant stakeholders. Third, we aim to conduct a preliminary evaluation of the toolkit, which will inform the design of a future effectiveness study. METHODS: The first objective will be met by conducting the following: approximately 10 interviews with SGMY and 15 interviews with adult experts, a scoping review of studies focused on psychosocial coping strategies for SGMY, and co-design workshops with approximately 20 SGMY, which will inform the creation of the prototype toolkit. The second objective will be met by carrying out interviews with approximately 5 selected adult experts and 10 SGMY to explore how the toolkit can be best used and to determine the parameters and user-generated standards for a future effectiveness trial. The final objective will be met with a small-scale process evaluation, using the think out loud methodology, conducted with approximately 10 SGMY. RESULTS: The study commenced on September 1, 2021, and data gathering for phase 1 began in October 2021. CONCLUSIONS: A considerable body of work has described the issues faced by the SGMY. However, there is a dearth of research seeking to develop interventions for SGMY so that they can thrive. This project aims to co-design such an intervention. TRIAL REGISTRATION: Research Registry Reference researchregistry6815; https://www.researchregistry.com/browse-the-registry#home/registrationdetails/609e81bda4a706001c94b63a/. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/31036.

5.
Health Technol Assess ; 25(74): 1-146, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34878383

RESUMO

BACKGROUND: There is a lack of evidence of the effect of cue-based feeding compared with scheduled feeding on important outcomes for preterm infants. OBJECTIVES: The objectives were as follows: (1) to describe the characteristics, components, theoretical basis and outcomes of approaches to feeding preterm infants transitioning from tube to oral feeding; (2) to identify operational policies, barriers and facilitators, and staff and parents' educational needs in neonatal units implementing cue-based feeding; (3) to co-produce an intervention for feeding preterm infants in response to feeding cues; (4) to appraise the willingness of parents and staff to implement and sustain the intervention; (5) to assess associated costs of implementing cue-based feeding; (6) to determine the feasibility and acceptability of a future trial; (7) to scope existing data-recording systems and potential outcome measures; and (8) to determine stakeholders' views of whether or not a randomised controlled trial of this approach is feasible. DESIGN: This was a mixed-methods intervention development and feasibility study comprising (1) a systematic review, case studies, qualitative research and stakeholder consensus; (2) the co-production of the intervention; (3) a mixed-methods feasibility study; and (4) an assessment of stakeholder preferences for a future evaluation. SETTING: Three neonatal units in the UK (two level 3 units and one level 2 unit). PARTICIPANTS: Developmentally normal, clinically stable preterm infants receiving enteral feeds (n = 50), parents (n = 15 pre intervention development; n = 14 in the feasibility study) and health-care practitioners (n = 54 pre intervention development; n = 16 in the feasibility study). INTERVENTION: An evidence-informed multicomponent intervention comprising training, a feeding protocol, feeding assessment tools, supplementary training materials [including posters, a film and a narrated PowerPoint (Microsoft Corporation, Redmond, WA, USA) presentation] and the 'Our Feeding Journey' document. MAIN OUTCOME MEASURES: The main outcome measures were recruitment and screening rates, infant weight gain, duration of the intervention, feeding outcomes, implementation outcomes (contextual facilitators and barriers, acceptability, adoption, appropriateness and fidelity) and stakeholder preferences for a future evaluation. RESULTS: The systematic review of 25 studies concluded that evidence in favour of cue-based feeding should be treated cautiously. The case studies and qualitative research highlighted contextual barriers to and facilitators of the implementation of cue-based feeding. The telephone survey found that many neonatal units are considering implementing cue-based feeding. We recruited 37% of eligible infants, and there was good retention in the study until discharge but a high loss to follow-up at 2 weeks post discharge. The mean number of days from intervention to transition to full oral feeding was 10.8, and the mean daily change in weight gain was 25 g. The intervention was acceptable to parents and staff, although there was dissatisfaction with the study documentation. Intervention training did not reach all staff. A cluster-randomised design with a composite outcome was suggested by stakeholders for a future study. LIMITATIONS: The intervention was available only in English. Intervention training did not reach all staff. There was low recruitment to qualitative interviews and observations. Only a small number of medical staff engaged in either the training or the interviews. CONCLUSIONS: It is feasible to implement a cue-based feeding intervention with improved training and documentation. Further work is needed to assess the feasibility of a future trial, noting evidence of existing lack of equipoise. FUTURE WORK: The next steps are to digitalise the intervention and conduct a survey of all neonatal units in the UK. STUDY REGISTRATION: This study is registered as PROSPERO CRD42018097317 and ISRCTN13414304. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 25, No. 74. See the NIHR Journals Library website for further project information.


Preterm babies who are ready to progress from tube feeding to oral feeding are usually fed according to a fixed schedule. Scheduled feeding protocols set a minimum corrected gestational age at which oral feeding may commence, and specify the rate of change from tube to oral feeding. Scheduled feeding also sets the volume and timing of each feed. A few small studies show that feeding babies according to their cues might have benefits for them and their parents; for example, babies may be discharged from hospital sooner. Cue-based feeding may help parents to understand the needs of their baby and be more involved in their care. Examples of hunger cues are mouthing movements, bringing hands to mouth and sucking. Examples of stop cues are falling asleep and stopping sucking. We developed a cue-based feeding intervention and tested it in three neonatal units to see if a large trial could be done and if parents and staff liked the intervention. We reviewed previous research, visited three hospitals that use cue-based feeding and interviewed parents and staff about their experiences of feeding preterm babies. We developed the intervention with parents and staff. The intervention included a feeding protocol, training for parents and staff, and a feeding record. Parents and staff liked most parts of the intervention. The training did not reach all staff, and staff and parents found it time-consuming to record every feed. Many parents and staff thought that cue-based feeding was better for babies, and parents thought that neonatal units should change to cue-based feeding. We discussed our findings with parents, staff and research experts. Based on their ideas, we recommend that the intervention is developed into an app (application) and that all neonatal units in the UK are surveyed to find out if they use cue-based feeding and if they would agree to be part of a large trial.


Assuntos
Assistência ao Convalescente , Sinais (Psicologia) , Estudos de Viabilidade , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Alta do Paciente
6.
JMIR Pediatr Parent ; 4(4): e26212, 2021 Nov 15.
Artigo em Inglês | MEDLINE | ID: mdl-34779780

RESUMO

BACKGROUND: Daytime urinary incontinence (UI) is common in childhood and often persists into adolescence. UI in adolescence is associated with a range of adverse outcomes, including depressive symptoms, peer victimization, poor self-image, and problems with peer relationships. The first-line conservative treatment for UI is bladder training (standard urotherapy) that aims to establish a regular fluid intake and a timed schedule for toilet visits. The success of bladder training is strongly dependent on good concordance, which can be challenging for young people. OBJECTIVE: This paper aims to describe the development of a smartphone app (URApp) that aims to improve concordance with bladder training in young people aged 11 to 19 years. METHODS: URApp was designed by using participatory co-design methods and was guided by the person-based approach to intervention design. The core app functions were based on clinical guidance and included setting a daily drinking goal that records fluid intake and toilet visits, setting reminders to drink fluids and go to the toilet, and recording progress toward drinking goals. The development of URApp comprised the following four stages: a review of current smartphone apps for UI, participatory co-design workshops with young people with UI for gathering user requirements and developing wireframes, the development of a URApp prototype, and the user testing of the prototype through qualitative interviews with 23 young people with UI or urgency aged 10 to 19 years and 8 clinicians. The app functions and additional functionalities for supporting concordance and behavior change were iteratively optimized throughout the app development process. RESULTS: Young people who tested URApp judged it to be a helpful way of supporting their concordance with a timed schedule for toilet visits and drinking. They reported high levels of acceptability and engagement. Preliminary findings indicated that some young people experienced improvements in their bladder symptoms, including a reduction in UI. Clinicians reported that URApp was clinically appropriate and aligned with the best practice guidelines for bladder training. URApp was deemed age appropriate, with all clinicians reporting that they would use it within their own clinics. Clinicians felt URApp would be of particular benefit to patients whose symptoms were not improving or those who were not engaging with their treatment plans. CONCLUSIONS: The next stage is to evaluate URApp in a range of settings, including pediatric continence clinics, primary care, and schools. This research is needed to test whether URApp is an effective (and cost-effective) solution for improving concordance with bladder training, reducing bladder symptoms, and improving the quality of life.

7.
J Health Organ Manag ; ahead-of-print(ahead-of-print)2020 Nov 06.
Artigo em Inglês | MEDLINE | ID: mdl-33150780

RESUMO

PURPOSE: The purpose of the study is to examine how Non-Executive Directors (NEDs) in the English National Health Service (NHS) commissioning bodies experienced their role and contribution to governance. DESIGN/METHODOLOGY/APPROACH: Semi-structured interviews were conducted with a purposive sample of 31 NEDs of Primary Care Trusts (PCTs) and 8 Clinical Commissioning Group (CCG) NEDs. Framework analysis was applied using a conceptualisation of governance developed by Newman, which has four models of governance: the hierarchy, self-governance, open systems and rational goal model. FINDINGS: NEDs saw themselves as guardians of the public interest. NEDs' power is a product of the explicit levers set out in the constitution of the board, but also how they choose to use their knowledge and expertise to influence decisions for, as they see it, the public good. They contribute to governance by holding to account executive and professional colleagues, acting largely within the rational goal model. CCG NEDs felt less powerful than in those in PCTs, operating largely in conformance and representational roles, even though government policy appears to be moving towards a more networked, open systems model. ORIGINALITY/VALUE: This is the first in-depth study of NEDs in English NHS local commissioning bodies. It is of value in helping to inform how the NED role could be enhanced to make a wider contribution to healthcare leadership as new systems are established in the UK and beyond.

8.
Psychooncology ; 28(4): 702-709, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30548890

RESUMO

OBJECTIVE: UK healthcare policy for improving cancer outcomes supports participation of patients in care decisions with clinicians. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first trial of CPRS within the colorectal cancer population and delivered over serial medical consultations. METHODS: This randomised controlled trial compared usual care to the addition of CPRS over consecutive oncology consultations with newly diagnosed colorectal cancer (CRC) patients in Edinburgh, Scotland. The study primarily evaluated patients' perception of their decision self-efficacy, preparation for decision-making, decisional conflict, and decisional regret, with secondary measures of anxiety and depression. RESULTS: Compared with usual care, overall, the intervention group reported significantly higher decision self-efficacy (P = 0.001) and preparation for decision-making (P < 0.001) and significantly lower decisional conflict (P = 0.018) and regret (P = 0.039). The repeated intervention patients felt significantly better prepared for each consultation (P < 0.05); reported higher DSE before (P = 0.05) and after (P = 0.031) consultation one, and after consultation three (P = 0.004); and reported lower decisional conflict after consultation two (P = 0.007). Analyses comparing groups over time on decisional variables and anxiety and depression were underpowered because of attrition. CONCLUSIONS: Among colorectal cancer patients, CPRS was associated with decisional benefits before and after each consultation and 3 months after the last consultation. It appears that CPRS patients began their first medical consultation on a better trajectory but did not widen the gap over time. More research is needed on the benefits of CPRS being administered once or consecutively.


Assuntos
Ansiedade/terapia , Neoplasias Colorretais/psicologia , Neoplasias Colorretais/terapia , Depressão/terapia , Participação do Paciente/psicologia , Autoeficácia , Adulto , Ansiedade/etiologia , Neoplasias Colorretais/complicações , Tomada de Decisões , Depressão/etiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Encaminhamento e Consulta , Escócia , Incerteza
9.
Nurse Educ Pract ; 31: 7-13, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29727794

RESUMO

UNICEF Baby Friendly Initiative (BFHI) is the global standard for maternity and community services requiring all practitioners to be trained to support mothers in the essential skills of supporting positioning and attachment, and hand expression. These studies aim to rigorously assess knowledge in nurses, midwives, and doctors in these skills, tested before and after watching short videos demonstrating these skills. Practitioners were attending BFHI education, and the video study was additional. In Phase 1 clinicians in England were randomised to one of two videos (practitioner role play or clinical demonstration). The results showed improvements in knowledge and confidence, and a preference for clinical demonstration by mothers and infants. The clinical demonstration video was evaluated in China in Phase 2 where expert trainers viewed the video after completing the BHFI workshop, and in Phase 3 practitioners viewed the video before the BHFI workshop. Phase 2 with expert trainers only showed improvement in knowledge of hand expression but not positioning and attachment. In Phase 3 clinicians showed improved knowledge for both skills. In all Phases there were statistically significant improvements in confidence in practice in both skills. Viewing short videos increased knowledge, particularly about teaching hand expression, and confidence in both skills.


Assuntos
Aleitamento Materno/métodos , Conhecimentos, Atitudes e Prática em Saúde , Pessoal de Saúde/educação , Promoção da Saúde/métodos , Gravação de Videoteipe/estatística & dados numéricos , Adulto , Atitude do Pessoal de Saúde , China , Inglaterra , Feminino , Promoção da Saúde/normas , Humanos , Masculino , Desenvolvimento de Programas
10.
Br J Pain ; 12(2): 104-112, 2018 May.
Artigo em Inglês | MEDLINE | ID: mdl-29796262

RESUMO

In the United Kingdom, chronic pain affects approximately 28 million adults, creating significant healthcare and socio-economic costs. The aim was to establish whether a programme designed to use best evidence of content and delivery will be used by patients with significant musculoskeletal pain problems. Of 528 patients recruited, 376 participated in a 7-week-long group-based self-management programme (SMP) co-delivered by clinical and lay tutors. Of these, 308 patients (mean age, 53 years; 69% females, 94% White) completed at least five SMP sessions. Six months after pre-course assessment, participants reported significantly improved patient activation and health status, lower depression and anxiety scores, decreased pain severity and interference, and improved self-management skills. There were no improvements in health state and pain self-efficacy. Uptake rate was 71% and completion 82%. The results should be of value to commissioners of pathways of care for the large numbers of patients attending the English NHS for chronic musculoskeletal pain.

11.
BMC Fam Pract ; 17: 33, 2016 Mar 22.
Artigo em Inglês | MEDLINE | ID: mdl-27001608

RESUMO

BACKGROUND: Chlamydia trachomatis remains a significant public health problem. We used a complex intervention, with general practice staff, consisting of practice based workshops, posters, computer prompts and testing feedback and feedback to increase routine chlamydia screening tests in under 25 year olds in South West England. We aimed to evaluate how intervention components were received by staff and to understand what determined their implementation into ongoing practice. METHODS: We used face-to-face and telephone individual interviews with 29 general practice staff analysed thematically within a Normalisation Process Theory Framework which explores: 1. Coherence (if participants understand the purpose of the intervention); 2. Cognitive participation (engagement with and implementation of the intervention); 3. Collective action (work actually undertaken that drives the intervention forwards); 4. Reflexive monitoring (assessment of the impact of the intervention). RESULTS: Our results showed coherence as all staff including receptionists understood the purpose of the training was to make them aware of the value of chlamydia screening tests and how to increase this in their general practice. The training was described by nearly all staff as being of high quality and responsible for creating a shared understanding between staff of how to undertake routine chlamydia screening. Cognitive participation in many general practice staff teams was demonstrated through their engagement by meeting after the training to discuss implementation, which confirmed the role of each staff member and the use of materials. However several participants still felt unable to discuss chlamydia in many consultations or described sexual health as low priority among colleagues. National targets were considered so high for some general practice staff that they didn't engage with the screening intervention. Collective action work undertaken to drive the intervention included use of computer prompts which helped staff remember to make the offer, testing rate feedback and having a designated lead. Ensuring patients collected samples when still in the general practice was not attained in most general practices. Reflexive monitoring showed positive feedback from patients and other staff about the value of screening, and feedback about the general practices testing rates helped sustain activity. CONCLUSIONS: A complex intervention including interactive workshops, materials to help implementation and feedback can help chlamydia screening testing increase in general practices.


Assuntos
Atitude do Pessoal de Saúde , Infecções por Chlamydia/diagnóstico , Educação Médica Continuada/métodos , Medicina Geral/educação , Programas de Rastreamento/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Adolescente , Adulto , Inglaterra , Feminino , Feedback Formativo , Medicina Geral/métodos , Medicina Geral/estatística & dados numéricos , Humanos , Masculino , Equipe de Assistência ao Paciente , Avaliação de Processos em Cuidados de Saúde , Pesquisa Qualitativa , Adulto Jovem
12.
Patient Educ Couns ; 98(2): 213-9, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25441096

RESUMO

OBJECTIVE: To evaluate a group-based self-management program (SMP) delivered as part of a quality improvement program, Co-Creating Health, for patients living with one of four long-term conditions (LTCs): chronic obstructive pulmonary disease, depression, diabetes, and musculoskeletal pain. METHODS: The 7 week SMP was co-delivered by lay and health professional tutors. Patients completed self-reported outcome measures at pre-course and 6 months follow-up. RESULTS: 486 patients completed (attended ≥5 sessions) the SMP and returned pre-course and 6 months follow up data. Patients reported significant improvements in patient activation (ES 0.65, p<0.001), with 53.9% of all patients reporting a meaningful ≥4 point improvement. Health-related quality of life (ES 0.06, p=0.04), and health status (ES 0.33, p<0.001) were also significantly improved. Patients' anxiety (ES 0.37, p<0.001) and depression (ES 0.31, p<0.001) significantly improved. Patients also reported significant improvements in their self-management skills (p values from p<0.001 to p=0.028). CONCLUSION: Attending the SMP led to improvements in a range of outcomes. Improvement in patient activation is important, as activated patients are more likely to perform self-care activities. PRACTICE IMPLICATIONS: Co-delivered SMPs provide meaningful improvements in activation for >50% of those who complete and are a useful addition to self-management support provision.


Assuntos
Doença Crônica/terapia , Gerenciamento Clínico , Melhoria de Qualidade , Qualidade de Vida , Autocuidado/métodos , Adulto , Idoso , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados da Assistência ao Paciente , Avaliação de Programas e Projetos de Saúde/métodos , Indicadores de Qualidade em Assistência à Saúde , Autoeficácia , Inquéritos e Questionários , Resultado do Tratamento
13.
Dementia (London) ; 14(4): 418-35, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24339106

RESUMO

Self-management programs are effective for people living with chronic illnesses. However, there has been little research addressing self-management for people with dementia in the early stages. This study presents a qualitative evaluation of the experiences of attending a novel self-management program and initial process evaluation. The program was designed with and for people with dementia. It addresses: (a) relationship with family, (b) maintenance of an active lifestyle, (c) psychological well-being, (d) techniques to cope with memory changes and (e) information about dementia. Six participants with early stage dementia completed the intervention that was co-delivered by lay and clinical professional tutors. Participants and tutors attended focus group and interviews at the end of the program to explore their perceptions of the intervention. These were audio-recorded, transcribed verbatim and analysed thematically. Participants reported enjoyment and benefits from the intervention. This was despite some reporting concerns relating to their memory difficulties. The program's flexible nature, focus on strengths and the opportunity to spend time with other people living with dementia were particularly well received. Participants and tutors outlined areas for further improvement. The program was feasible and its flexible delivery appeared to facilitate participant benefit. Emphasis should be placed on maintaining activity and relationships, improving positive well-being and social interaction during the program. Memory of the pleasant experience and strengths focus was evidenced, which may impact positively on quality of life. The results highlight the usefulness and acceptability of self-management for people with early stage dementia and provide initial support for the program's structure and content.


Assuntos
Demência/terapia , Autocuidado/métodos , Idoso , Demência/psicologia , Diagnóstico Precoce , Feminino , Grupos Focais , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-Idade
14.
Arch Med Sci ; 10(4): 773-81, 2014 Aug 29.
Artigo em Inglês | MEDLINE | ID: mdl-25276164

RESUMO

INTRODUCTION: The purpose of this study was to determine the impact of the Health Foundation's Co-Creating Health (CCH) group self-management programme (SMP) for adult patients with type 2 diabetes on patient activation and quality of life. MATERIAL AND METHODS: We conducted a multisite longitudinal study of 283 patients (mean age 62.3 years, SD 11.1; 43% ethnic minority; 51% female). Primary outcomes were patient activation, and diabetes and health related quality of life. Secondary outcomes included health status, psychological distress, and self-management ability. Data were collected immediately before the first SMP session (baseline) and 6 months after completing the programme. Quantitative analyses were based on mixed models using intent-to-treat and per-protocol procedures. RESULTS: Sixty percent of patients who signed up for SMP completed the programme. Patient activation significantly improved 6 months after the SMP (p < 0.0001), and 60.2% of course completers showed meaningful improvement. Diabetes-related quality of life also improved significantly 6 months post course (p < 0.0001). About a quarter of SMP completers showed substantial improvement in self-management skills. CONCLUSIONS: Attending the UK SMP for adults with type 2 diabetes leads to improvements in patient activation, diabetes-related quality of life, and improved confidence and ability to self-manage their condition. Improvement in patient activation is an important finding because activated patients participate in collaborative decision-making with their clinicians, report improved health-related behaviours and clinical outcomes, and better adhere to treatment.

15.
PLoS One ; 9(8): e104434, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25137185

RESUMO

BACKGROUND: Prompt treatment following Transient Ischemic Attack (TIA) can reduce the risk of subsequent stroke and disability. However, many patients delay in making contact with medical services. This study aimed to explore TIA patients' accounts of delay between symptom onset and contacting medical services including how decisions to contact services were made and the factors discussed in relation to delay. METHODS: Twenty interviews were conducted with TIA patients in England. Using a previous systematic review as an initial framework, interview data were organised into categories of symptom recognition, presence of others and type of care sought. A thematic analysis was then conducted to explore descriptions of care-seeking relevant to each category. RESULTS: Delay in contacting medical services varied from less than an hour to eight days. Awareness of typical stroke symptoms could lead to urgent action when more severe TIA symptoms were present but could lead to delay when experienced symptoms were less severe. The role of friends and family varied widely from deciding on and enacting care-seeking decisions to simply providing transport to the GP practice. When family or friends played a greater role, and both made and enacted care-seeking decisions, delays were often shorter, even when patients themselves failed to identify symptoms. Healthcare professionals also impacted on patients' care-seeking with greater delays in seeking further care for the same episode described when patients perceived a lack of urgency during initial healthcare interactions. CONCLUSIONS: This study provides new information on patients' decisions to contact medical services following TIA and identifies overlapping factors that can lead to delay in receiving appropriate treatment. While recognition of symptoms may contribute to delay in contacting medical services, additional factors, including full responsibility being taken by others and initial healthcare interactions, can over-ride or undermine the importance of patients' own identification of TIA.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Ataque Isquêmico Transitório/diagnóstico , Ataque Isquêmico Transitório/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Idoso , Idoso de 80 Anos ou mais , Conscientização , Diagnóstico Tardio , Inglaterra , Feminino , Humanos , Ataque Isquêmico Transitório/fisiopatologia , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Pesquisa Qualitativa , Risco , Fatores de Tempo
16.
Dementia (London) ; 12(4): 481-93, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24336956

RESUMO

People with dementia in the early stages currently experience a care gap, which self-management may address. We explore perceived barriers to self-management. Using a systematic approach (logic mapping), 19 participants (people with dementia, carers, health care professionals and charity representatives) described self-management barriers facing people living with dementia. Thematic content analysis revealed six main themes: the lived experience of dementia, diagnosis, role of carer/family, impact of health care professionals, organisation of health services and societal views. People with dementia were seen as passive recipients of care, unable to self-manage owing to the impact of dementia on cognitive abilities. The need for interventions that are largely emotion focused, encourage activity maintenance and improve quality of life are described. Barriers to self-management exist at multiple levels, suggesting a whole-systems approach is required.


Assuntos
Demência/psicologia , Autocuidado , Feminino , Pessoal de Saúde/psicologia , Humanos , Masculino
17.
BMC Public Health ; 13: 133, 2013 Feb 13.
Artigo em Inglês | MEDLINE | ID: mdl-23406327

RESUMO

BACKGROUND: The prevalence of unwanted pregnancy and sexually transmitted infection amongst young adults represents an important public health problem in the UK. Individuals' attitude towards the use of condoms has been identified as an important determinant of behavioural intentions and action. The Theory of Planned Behaviour has been widely used to explain and predict health behaviour. This posits that the degree to which an individual positively or negatively values a behaviour (termed 'direct attitude') is based upon consideration of the likelihood of a number of outcomes occurring (outcome expectancy) weighted by the perceived desirability of those outcomes (outcome evaluation). Outcome expectancy and outcome evaluation when multiplied form 'indirect attitude'. The study aimed to assess whether positive outcome expectancies of unprotected sex were more important for young adults with lower safe sex intentions, than those with safer sex intentions, and to isolate optimal outcomes for targeting through health promotion campaigns. METHODS: A cross-sectional survey design was used. Data was collected from 1051 school and university students aged 16-24 years. Measures of intention, direct attitude and indirect attitude were taken. Participants were asked to select outcome expectancies which were most important in determining whether they would use condoms with casual sexual partners. RESULTS: People with lower safe sex intentions were more likely than those with safer sex intentions to select all positive outcome expectancies for unprotected sex as salient, and less likely to select all negative outcome expectancies as salient. Outcome expectancies for which the greatest proportion of participants in the less safe sex group held an unfavourable position were: showing that I am a caring person, making sexual experiences less enjoyable, and protecting against pregnancy. CONCLUSIONS: The findings point to ways in which the attitudes of those with less safe sex intentions could be altered in order to motivate positive behavioural change. They suggest that it would be advantageous to highlight the potential for condom use to demonstrate a caring attitude, to challenge the potential for protected sex to reduce sexual pleasure, and to target young adults' risk appraisals for pregnancy as a consequence of unprotected sex with casual sexual partners.


Assuntos
Atitude Frente a Saúde , Preservativos/estatística & dados numéricos , Intenção , Comportamento Sexual/psicologia , Parceiros Sexuais , Adolescente , Estudos Transversais , Feminino , Humanos , Masculino , Gravidez , Gravidez não Desejada , Fatores de Risco , Assunção de Riscos , Infecções Sexualmente Transmissíveis , Reino Unido , Sexo sem Proteção/psicologia , Adulto Jovem
18.
Disabil Rehabil ; 35(12): 976-81, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23072278

RESUMO

PURPOSE: Although at any time in the UK, there are about 20,000 women with MS who may be considering having children, healthcare system often fails to provide them with information and support they need to make informed decisions about their health and pregnancy management. The aim of this paper is to explore the childbearing experience of women with MS to determine what support and information may be useful to this target group. METHOD: Interviews were conducted with women with MS (n = 9). Transcripts were analysed using thematic analysis. RESULTS: Three major themes emerged from the interviews with women living with MS. We found women were concerned about both medical and practical issues associated with having children. Limited access to information about relationships between MS and childbearing and receiving conflicting or wrong information was recounted. Opinions of family members and clinicians regarding having children in the context of MS impacted on women's experience of making decision about having children and childbearing. CONCLUSIONS: Women with MS can benefit from having access to comprehensive, structured sources of information about MS and childbearing. Healthcare professionals and family members 'support could be channelled more appropriately to enhance their experience of making choices about childbearing.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Esclerose Múltipla/psicologia , Acesso à Informação , Adulto , Atitude do Pessoal de Saúde , Informação de Saúde ao Consumidor , Tomada de Decisões , Feminino , Humanos , Entrevistas como Assunto , Gravidez , Pesquisa Qualitativa , Reino Unido
19.
Patient Educ Couns ; 90(1): 38-45, 2013 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-23021429

RESUMO

OBJECTIVE: To evaluate the co-delivery style of lay and clinician co-tutors of courses for patients, and courses for clinicians to support their patients' self-management skills. METHODS: Motivational style of course delivery was assessed in 37 patient course sessions and 14 clinician workshops by independent observers using four Self Determination Theory rating scales and ethnographic notes. Forty-five tutors and 35 attendees were interviewed about their experience of co-delivered courses. RESULTS: Lay and clinician tutors had similar motivational styles, with significant differences between the four motivational style scales; patient courses (F(3, 216)=3.437, p=.018); and clinician courses (F(3, 78)=3.37, p=.025). The courses were experienced as co productive in style as suggested during interviews, but adherence to manuals limited the tutors' contributions. Lay and clinician tutors scored higher on providing structure and engaging participants than they scored on supporting autonomous decision making and involvement. CONCLUSION: Co-delivery was a successful model, affording opportunities to demonstrate co-production skills. PRACTICE IMPLICATIONS: There is more scope to enable lay and clinician tutors to use their respective expertise in supporting self-management, and for tutor training to encourage a less didactic delivery style.


Assuntos
Pessoal de Saúde/educação , Avaliação de Resultados em Cuidados de Saúde/métodos , Educação de Pacientes como Assunto/métodos , Médicos , Autocuidado , Ensino/métodos , Voluntários , Adulto , Análise de Variância , Doença Crônica/terapia , Feminino , Humanos , Entrevistas como Assunto , Aprendizagem , Masculino , Motivação , Assistência Centrada no Paciente , Melhoria de Qualidade , Autoeficácia , Inquéritos e Questionários
20.
Eur J Ageing ; 10(2): 75-87, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28804285

RESUMO

Dementia is a major challenge for health and social care services. People living with dementia in the earlier stages experience a "care-gap". Although they may address this gap in care, self-management interventions have not been provided to people with dementia. It is unclear how to conceptualise self-management for this group and few published papers address intervention design. Initial focusing work used a logic mapping approach, interviews with key stakeholders, including people with dementia and their family members. An initial set of self-management targets were identified for potential intervention. Self-management for people living with dementia was conceptualised as covering five targets: (1) relationship with family, (2) maintaining an active lifestyle, (3) psychological wellbeing, (4) techniques to cope with memory changes, and (5) information about dementia. These targets were used to focus literature reviewing to explore an evidence base for the conceptualisation. We discuss the utility of the Corbin and Strauss (Unending work and care: managing chronic illness at home. Jossey-Bass, Oxford, 1988) model of self-management, specifically that self-management for people living with dementia should be conceptualised as emphasising the importance of "everyday life work" (targets 1 and 2) and "biographical work" (target 3), with inclusion of but less emphasis on specific "illness work" (targets 4, 5). We argue that self-management is possible for people with dementia, with a strengths focus and emphasis on quality of life, which can be achieved despite cognitive impairments. Further development and testing of such interventions is required to provide much needed support for people in early stages of dementia.

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