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1.
Trials ; 21(1): 331, 2020 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-32293509

RESUMO

BACKGROUND: There has been comparatively little patient information about bronchiectasis, a chronic lung disease with rising prevalence. Patients want more information, which could improve their understanding and self-management. A novel information resource meeting identified needs has been co-developed in prior work. We sought to establish the feasibility of conducting a multi-centre randomised controlled trial to determine effect of the information resource on understanding, self-management and health outcomes. METHODS/DESIGN: We conducted an unblinded, single-centre, randomised controlled feasibility trial with two parallel groups (1:1 ratio), comparing a novel patient information resource with usual care in adults with bronchiectasis. Integrated qualitative methods allowed further evaluation of the intervention and trial process. The setting was two teaching hospitals in North East England. Participants randomised to the intervention group received the information resource (website and booklet) and instructions on its use. Feasibility outcome measures included willingness to enter the trial, in addition to recruitment and retention rates. Secondary outcome measures (resource use and satisfaction, quality of life, unscheduled healthcare presentations, exacerbation frequency, bronchiectasis knowledge and lung function) were recorded at baseline, 2 weeks and 12 weeks. RESULTS: Sixty-two participants were randomised (control group = 30; intervention group = 32). Thirty-eight (61%) were female, and the participants' median age was 65 years (range 15-81). Median forced expiratory volume in 1 s percent predicted was 68% (range 10-120). Sixty-two of 124 (50%; 95% CI, 41-59%) of potentially eligible participants approached were recruited. Sixty (97%) of 62 participants completed the study (control group, 29 of 30 [97%]; 95% CI, 83-99%; 1 unrelated death; intervention group, 31 [97%] of 32; 95% CI, 84-99%; 1 withdrawal). In the intervention group, 27 (84%) of 32 reported using the information provided, and 25 (93%) of 27 of users found it useful, particularly the video content. Qualitative data analysis revealed acceptability of the trial and intervention. Web analytics recorded over 20,000 page views during the 16-month study period. CONCLUSION: The successful recruitment process, high retention rate and study form completion rates indicate that it appears feasible to conduct a full trial based on this study design. Worldwide demand for online access to the information resource was high. TRIAL REGISTRATION: ISRCTN Registry, ISRCTN84229105. Registered on 25 July 2014.

2.
BMJ Open ; 10(1): e032369, 2020 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-32005779

RESUMO

OBJECTIVES: To investigate the practices of healthcare professionals in relation to best practice recommendations for the multidisciplinary management of people with diabetes and periodontitis, focusing on two clinical behaviours: informing patients about the links between diabetes and periodontitis, and suggesting patients with poorly controlled diabetes go for a dental check-up. DESIGN: Cross-sectional design utilising online questionnaires to assess self-reported performance and constructs from Social Cognitive Theory (SCT) and Normalisation Process Theory. SETTING: Primary care medical practices (n=37) in North East, North Cumbria and South West of England Clinical Research Networks. PARTICIPANTS: 96 general practitioners (GPs), 48 nurses and 21 healthcare assistants (HCAs). RESULTS: Participants reported little to no informing patients about the links between diabetes and periodontitis or suggesting that they go for a dental check-up. Regarding future intent, both GPs (7.60±3.38) and nurses (7.94±3.69) scored significantly higher than HCAs (4.29±5.07) for SCT proximal goals (intention) in relation to informing patients about the links (p<0.01); and nurses (8.56±3.12) scored significantly higher than HCAs (5.14±5.04) for suggesting patients go for a dental check-up (p<0.001). All professional groups agreed on the potential value of both behaviours, and nurses scored significantly higher than GPs for legitimation (conforms to perception of job role) in relation to informing (nurses 4.16±0.71; GPs 3.77±0.76) and suggesting (nurses 4.13±0.66; GPs 3.75±0.83) (both p<0.01). The covariate background information (OR=2.81; p=0.03) was statistically significant for informing patients about the links. CONCLUSIONS: Despite evidence-informed best practice recommendations, healthcare professionals currently report low levels of informing patients with diabetes about the links between diabetes and periodontitis and suggesting patients go for a dental check-up. However, healthcare professionals, particularly nurses, value these behaviours and consider them appropriate to their role. While knowledge of the evidence is important, future guidelines should consider different strategies to enable implementation of the delivery of healthcare interventions.

3.
Clin Child Psychol Psychiatry ; : 1359104520907147, 2020 Feb 21.
Artigo em Inglês | MEDLINE | ID: mdl-32081019

RESUMO

There is increasing global attention on the health and wellbeing needs of young people. Preventive and proactive approaches will likely lead to the clearest dividends for young people, their own children and wider society. A brief overview of the international context for young people's health care is given. As well as influencing policy, there are important roles for the health care team, including psychologists, to influence the organisations they work within, advocating for the needs of young people and their families. This is the focus of this article. The concept of developmentally appropriate health care (DAH) for young people is explored. It could help when planning services and approaches that respond to the needs of young people. Building relationships is likely to be key, to connect with young people to help them make health and wellbeing decisions, and provide individualised support. The 'connectedness' research could also be helpful in looking beyond the health care evidence. A key challenge for psychologists and their multi-disciplinary health care colleagues, in practice and research, is to move away from a reliance on binary, easier-to-measure health and wellbeing outcomes and, instead, find ways to promote and measure developmental outcomes that are meaningful to young people and their families.

4.
Clin Med (Lond) ; 20(1): 74-80, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31941736

RESUMO

BACKGROUND: During transition from children's to adults' healthcare, young adults with long-term conditions may show delays in psychosocial development compared to their peers without long-term conditions, and deterioration of their conditions' medical control. METHODS: This paper integrates the findings, already published in 10 separate papers, of a 5-year transition research programme. IMPLICATIONS: There is an important role for funders (commissioners) of adults' services to fund transitional healthcare, in addition to funders of children's services who currently take responsibility.It is important that healthcare provider organisations adopt an organisation-wide approach to implementation to ensure that good practice is adopted in children's and adults' services, not just adopted by enthusiasts in some specialties. This includes provision of 'developmentally appropriate healthcare' which recognises the changing biopsychosocial developmental needs of young people.Three features of transitional healthcare were associated with improved outcomes: appropriate parent involvement, promotion of young people's confidence in managing their health and meeting the adult team before transfer. These should be maintained or introduced as a priority.Child and adult healthcare providers should routinely explore with a young person how they approach transition and personalise their clinical approach thereafter.These implications are relevant for a range of stakeholders, including funders of transitional healthcare, organisations providing transitional healthcare and clinical practitioners.

5.
Eur J Dent Educ ; 24(1): 169-176, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31765500

RESUMO

BACKGROUND: Effective implementation of healthcare initiatives is of key importance for ensuring high-quality clinical and health outcomes. Using Normalization Process Theory, this study investigates the implementation behaviour of dental students in relation to a novel oral health risk assessment tool. It considers the impact of advancing learning on normalisation of innovative healthcare practice. METHODS: Students completed the NoMAD (normalisation of complex interventions-measure development) questionnaire and an additional scale to assess perceived value of the oral health risk assessment tool, after having used the tool for nearly one academic year. The sample comprised third- (n = 75), fourth- (n = 77) and fifth-year (n = 37) students. Differences between groups in relation to the four generative processes of normalisation were analysed using ANOVA. Cohen's d effect sizes were calculated between groups. Multiple linear regression was undertaken to investigate the impact of normalisation level on value/utility judgements. RESULTS: There were significant group differences for three of the four generative processes of normalisation (coherence, cognitive participation and reflexive monitoring). Third- and fourth-year students were highly similar but these groups showed lower normalisation compared to fifth years. Normalisation assessment predicted perceived value and utility of the oral health risk assessment tool. CONCLUSIONS: The findings suggest that dental students show lower normalisation of novel tools at earlier stages in their course, possibly due to increased cognitive load, and that perceived value and utility of a novel tool is related to increased normalisation.


Assuntos
Assistência à Saúde , Estudantes de Odontologia , Estudos Transversais , Humanos , Medição de Risco , Inquéritos e Questionários
6.
Prim Care Diabetes ; 2019 Dec 09.
Artigo em Inglês | MEDLINE | ID: mdl-31831377

RESUMO

AIMS: To explore inter-professional communication and collaboration in guideline-concordant diabetes and periodontitis care. METHODS: Qualitative design using iterations of workshops to identify ways to improve multidisciplinary working attended by staff from medical and dental primary care practices, and people with diabetes (n=43). Workshops were semi-structured around a topic guide. Recruitment was via the UK Clinical Research Network, and a patient and public involvement group in the North of England. RESULTS: Medical practice participants were unaware of the bidirectional evidence linking diabetes and periodontitis and stated that they had never received a referral from a dental professional in this context. The patient participants with diabetes reported never having been informed about the links between diabetes and periodontitis from either their family physician or dentist. Medical and dental practice participants gave negative accounts of inter-professional communication, with claims of inappropriate requests and defensive or non-responses that stymied future interaction. Indirect communication through the patient was suggested as an alternative to direct communication. CONCLUSIONS: Indirect referral, whereby the patient is signposted to a healthcare professional, was suggested by medical and dental professionals as a useful alternative to the traditional (and time consuming) letter or telephone call, particularly in the case of suspected diabetes or periodontitis.

7.
BMC Fam Pract ; 20(1): 153, 2019 11 08.
Artigo em Inglês | MEDLINE | ID: mdl-31703620

RESUMO

BACKGROUND: People with long term conditions (LTCs) make most of the daily decisions and carry out the activities which affect their health and quality of life. Only a fraction of each contact with a health care professional (HCP) is spent supporting this. This paper describes how care and support planning (CSP) and an implementation framework to redesign services, were developed to address this in UK general practice. Focussed on what is important to each individual, CSP brings together traditional clinical issues and the person's lived experience in a solution focussed, forward looking conversation with an emphasis on 'people not diseases'. METHODS: The components of CSP were developed in three health communities using diabetes as an exemplar. This model was extended and refined for other single conditions and multimorbidity across 40 sites and two nations, over 15 years. Working with local teams and communities the authors used theoretical models of care, implementation and spread, developing and tailoring training, support and resources to embed CSP as usual care, sharing learning across a community of practice. RESULTS: The purpose, content, process, developmental hurdles and impact of this CSP model are described, alongside an implementation strategy. There is now a robust, reproducible five step model; preparation, conversation, recording, actions and review. Uniquely, preparation, involving information sharing with time for reflection, enables an uncluttered conversation with a professional focussed on what is important to each person. The components of the Year of Care House act as a checklist for implementation, a metaphor for their interdependence and a flexible framework. Spreading CSP involved developing exemplar practices and building capacity across local health communities. These reported improved patient experience, practitioner job satisfaction, health behaviours and outcomes, teamwork, practice organisation, resource use, and links with wider community activities. CONCLUSIONS: Tested in multiple settings, CSP is a reproducible and practical model of planned care applicable to all LTCs, with the capacity to be transformative for people with LTCs and health care professionals. It recaptures relational dimensions of care with transactional elements in the background. Options for applying this model and implementation framework at scale now need to be explored.

8.
BMJ Open ; 9(9): e029107, 2019 Sep 09.
Artigo em Inglês | MEDLINE | ID: mdl-31501109

RESUMO

OBJECTIVE: The WHO has argued that adolescent-responsive health systems are required. Developmentally appropriate healthcare (DAH) for young people is one approach that could underpin this move. The aim of this study was to explore the potential for DAH to become normalised, to become a routine, taken-for-granted, element of clinical practice. DESIGN: Qualitative ethnographic study. Analyses were based on procedures from first-generation grounded theory and theoretically informed by normalisation process theory. SETTING: Two tertiary and one secondary care hospital in England. PARTICIPANTS: 192 participants, health professionals (n=121) and managers (n=71) were recruited between June 2013 and January 2015. Approximately 1600 hours of non-participant observations in clinics, wards and meeting rooms were conducted, alongside 65 formal qualitative interviews. RESULTS: We observed diverse values and commitments towards the care of young people and provision of DAH, including a distributed network of young person-orientated practitioners. Informal networks of trust existed, where specific people, teams or wards were understood to have the right skill-mix, or mindset, or access to resources, to work effectively with young people. As young people move through an organisation, the preference is to direct them to other young person-orientated practitioners, so inequities in skills and experience can be self-sustaining. At two sites, initiatives around adolescent and young adult training remained mostly within these informal networks of trust. At another, through support by wider management, we observed a programme that sought to make the young people's healthcare visible across the organisation, and to get people to reappraise values and commitment. CONCLUSION: To move towards normalisation of DAH within an organisation, we cannot solely rely on informal networks and cultures of young person-orientated training, practice and mutual referral and support. Organisation-wide strategies and training are needed, to enable better integration and consistency of health services for all young people.

10.
Health Expect ; 22(3): 465-474, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-30770609

RESUMO

Patient and public involvement in research includes non-academics working with researchers, on activities from consultative tasks, to joint working, and on user-led initiatives. Health and social care funding bodies require involvement in research projects. A current debate focuses on a perceived lack of empirical "proof" to demonstrate the impact of involvement upon the quality of research. It is also argued that the working relationships between researchers and those becoming involved need to be understood more fully. These areas are beginning to be reported upon but there are few studies of young people involved in health research. This study describes the experiences of adult academics and young people, working together on a large-scale, UK health research programme. Using qualitative interview and focus group methods, the aim was to explore participants' perceptions about the process and outcomes of their work together. The importance of cyclical, dynamic and flexible approaches is suggested. Enablers include having clear mechanisms for negotiation and facilitation, stakeholders having a vision of "the art of the possible," and centrally, opportunities for face-to-face working. What is needed is a continuing discourse about the challenges and benefits of working with young people, as distinct from younger children and adults, understanding the value of this work, without young people having to somehow "prove" themselves. Involvement relies on complex social processes. This work supports the view that an improved understanding of how key processes are enabled, as well as what involvement achieves, is now needed.

11.
J Med Internet Res ; 21(2): e12376, 2019 02 20.
Artigo em Inglês | MEDLINE | ID: mdl-30785402

RESUMO

BACKGROUND: Successfully implementing eMental health (eMH) interventions in routine mental health care constitutes a major challenge. Reliable instruments to assess implementation progress are essential. The Normalization MeAsure Development (NoMAD) study developed a brief self-report questionnaire that could be helpful in measuring implementation progress. Based on the Normalization Process Theory, this instrument focuses on 4 generative mechanisms involved in implementation processes: coherence, cognitive participation, collective action, and reflexive monitoring. OBJECTIVE: The aim of this study was to translate the NoMAD questionnaire to Dutch and to confirm the factor structure in Dutch mental health care settings. METHODS: Dutch mental health care professionals involved in eMH implementation were invited to complete the translated NoMAD questionnaire. Confirmatory factor analysis (CFA) was conducted to verify interpretability of scale scores for 3 models: (1) the theoretical 4-factor structure, (2) a unidimensional model, and (3) a hierarchical model. Potential improvements were explored, and correlated scale scores with 3 control questions were used to assess convergent validity. RESULTS: A total of 262 professionals from mental health care settings in the Netherlands completed the questionnaire (female: 81.7%; mean age: 45 [SD=11]). The internal consistency of the 20-item questionnaire was acceptable (.62≤alpha≤.85). The theorized 4-factor model fitted the data slightly better in the CFA than the hierarchical model (Comparative Fit Index=0.90, Tucker Lewis Index=0.88, Root Mean Square Error of Approximation=0.10, Standardized Root Mean Square Residual=0.12, χ22=22.5, P≤.05). However, the difference is small and possibly not outweighing the practical relevance of a total score and subscale scores combined in one hierarchical model. One item was identified as weak (λCA.2=0.10). A moderate-to-strong convergent validity with 3 control questions was found for the Collective Participation scale (.47≤r≤.54, P≤.05). CONCLUSIONS: NoMAD's theoretical factor structure was confirmed in Dutch mental health settings to acceptable standards but with room for improvement. The hierarchical model might prove useful in increasing the practical utility of the NoMAD questionnaire by combining a total score with information on the 4 generative mechanisms. Future research should assess the predictive value and responsiveness over time and elucidate the conceptual interpretability of NoMAD in eMH implementation practices.


Assuntos
Assistência à Saúde/métodos , Saúde Mental/normas , Psicometria/métodos , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários
12.
BMC Med Res Methodol ; 18(1): 133, 2018 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-30442093

RESUMO

BACKGROUND: Understanding and measuring implementation processes is a key challenge for implementation researchers. This study draws on Normalization Process Theory (NPT) to develop an instrument that can be applied to assess, monitor or measure factors likely to affect normalization from the perspective of implementation participants. METHODS: An iterative process of instrument development was undertaken using the following methods: theoretical elaboration, item generation and item reduction (team workshops); item appraisal (QAS-99); cognitive testing with complex intervention teams; theory re-validation with NPT experts; and pilot testing of instrument. RESULTS: We initially generated 112 potential questionnaire items; these were then reduced to 47 through team workshops and item appraisal. No concerns about item wording and construction were raised through the item appraisal process. We undertook three rounds of cognitive interviews with professionals (n = 30) involved in the development, evaluation, delivery or reception of complex interventions. We identified minor issues around wording of some items; universal issues around how to engage with people at different time points in an intervention; and conceptual issues around the types of people for whom the instrument should be designed. We managed these by adding extra items (n = 6) and including a new set of option responses: 'not relevant at this stage', 'not relevant to my role' and 'not relevant to this intervention' and decided to design an instrument explicitly for those people either delivering or receiving an intervention. This version of the instrument had 53 items. Twenty-three people with a good working knowledge of NPT reviewed the items for theoretical drift. Items that displayed a poor alignment with NPT sub-constructs were removed (n = 8) and others revised or combined (n = 6). The final instrument, with 43 items, was successfully piloted with five people, with a 100% completion rate of items. CONCLUSION: The process of moving through cycles of theoretical translation, item generation, cognitive testing, and theoretical (re)validation was essential for maintaining a balance between the theoretical integrity of the NPT concepts and the ease with which intended respondents could answer the questions. The final instrument could be easily understood and completed, while retaining theoretical validity. NoMAD represents a measure that can be used to understand implementation participants' experiences. It is intended as a measure that can be used alongside instruments that measure other dimensions of implementation activity, such as implementation fidelity, adoption, and readiness.


Assuntos
Cognição , Pesquisa sobre Serviços de Saúde/métodos , Ciência da Implementação , Inquéritos e Questionários , Assistência à Saúde/métodos , Assistência à Saúde/normas , Assistência à Saúde/estatística & dados numéricos , Pesquisa sobre Serviços de Saúde/normas , Pesquisa sobre Serviços de Saúde/estatística & dados numéricos , Humanos , Entrevista Psicológica/métodos , Projetos Piloto
13.
BMC Med Res Methodol ; 18(1): 135, 2018 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-30442094

RESUMO

INTRODUCTION: Successful implementation and embedding of new health care practices relies on co-ordinated, collective behaviour of individuals working within the constraints of health care settings. Normalization Process Theory (NPT) provides a theory of implementation that emphasises collective action in explaining, and shaping, the embedding of new practices. To extend the practical utility of NPT for improving implementation success, an instrument (NoMAD) was developed and validated. METHODS: Descriptive analysis and psychometric testing of an instrument developed by the authors, through an iterative process that included item generation, consensus methods, item appraisal, and cognitive testing. A 46 item questionnaire was tested in 6 sites implementing health related interventions, using paper and online completion. Participants were staff directly involved in working with the interventions. Descriptive analysis and consensus methods were used to remove redundancy, reducing the final tool to 23 items. Data were subject to confirmatory factor analysis which sought to confirm the theoretical structure within the sample. RESULTS: We obtained 831 completed questionnaires, an average response rate of 39% (range: 22-77%). Full completion of items was 50% (n = 413). The confirmatory factor analysis showed the model achieved acceptable fit (CFI = 0.95, TLI = 0.93, RMSEA = 0.08, SRMR = 0.03). Construct validity of the four theoretical constructs of NPT was supported, and internal consistency (Cronbach's alpha) were as follows: Coherence (4 items, α = 0.71); Collective Action (7 items, α = 0.78); Cognitive Participation (4 items, α = 0.81); Reflexive Monitoring (5 items, α = 0.65). The normalisation scale overall, was highly reliable (20 items, α = 0.89). CONCLUSIONS: The NoMAD instrument has good face validity, construct validity and internal consistency, for assessing staff perceptions of factors relevant to embedding interventions that change their work practices. Uses in evaluating and guiding implementation are proposed.


Assuntos
Cognição , Pesquisa sobre Serviços de Saúde/métodos , Ciência da Implementação , Inquéritos e Questionários , Assistência à Saúde/métodos , Assistência à Saúde/normas , Assistência à Saúde/estatística & dados numéricos , Pesquisa sobre Serviços de Saúde/normas , Pesquisa sobre Serviços de Saúde/estatística & dados numéricos , Humanos , Entrevista Psicológica/métodos , Entrevista Psicológica/normas , Projetos Piloto , Psicometria , Reprodutibilidade dos Testes
14.
Nutrients ; 10(8)2018 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-30081522

RESUMO

Dietary and physical activity behaviours during preconception and in pregnancy are important determinants of maternal and child health. This review synthesised the available evidence on dietary and physical activity behaviours in pregnant women and women of childbearing age women who have migrated from African countries to live in high income countries. Searches were conducted on Medline, Embase, PsycInfo, Pubmed, CINAHL, Scopus, Proquest, Web of Science, and the Cochrane library. Searches were restricted to studies conducted in high income countries and published in English. Data extraction and quality assessment were carried out in duplicate. Findings were synthesised using a framework approach, which included both a priori and emergent themes. Fourteen studies were identified; ten quantitative and four qualitative. Four studies included pregnant women. Data on nutrient intakes included macro- and micro-nutrients; and were suggestive of inadequacies in iron, folate, and calcium; and excessive sodium intakes. Dietary patterns were bicultural, including both Westernised and African dietary practices. Findings on physical activity behaviours were conflicting. Dietary and physical activity behaviours were influenced by post-migration environments, culture, religion, and food or physical activity-related beliefs and perceptions. Further studies are required to understand the influence of sociodemographic and other migration-related factors on behaviour changes after migration.


Assuntos
Grupo com Ancestrais do Continente Africano/psicologia , Países Desenvolvidos/economia , Países em Desenvolvimento/economia , Emigrantes e Imigrantes/psicologia , Emigração e Imigração , Exercício Físico/psicologia , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Renda , Adolescente , Adulto , África/epidemiologia , Fatores Etários , Idoso , Características Culturais , Meio Ambiente , Feminino , Comportamentos Relacionados com a Saúde/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Humanos , Saúde Materna/etnologia , Fenômenos Fisiológicos da Nutrição Materna/etnologia , Pessoa de Meia-Idade , Estado Nutricional/etnologia , Gravidez , Saúde Reprodutiva/etnologia , Adulto Jovem
15.
BMC Neurol ; 18(1): 102, 2018 Jul 23.
Artigo em Inglês | MEDLINE | ID: mdl-30037324

RESUMO

BACKGROUND: Perinatal stroke (PS) affects up to 1/2300 infants and frequently leads to unilateral cerebral palsy (UCP). Preterm-born infants affected by unilateral haemorrhagic parenchymal infarction (HPI) are also at risk of UCP. To date no standardised early therapy approach exists, yet early intervention could be highly effective, by positively influencing processes of activity-dependent plasticity within the developing nervous system including the corticospinal tract. Our aim was to test feasibility and acceptability of an "early Therapy In Perinatal Stroke" (eTIPS) intervention, aiming ultimately to improve motor outcome. METHODS: Design: Feasibility trial, North-East England, August 2015-September 2017. Participants were infants with PS or HPI, their carers and therapists. The intervention consisted of a parent-delivered lateralised therapy approach starting from term equivalent age and continuing until 6 months corrected age. The outcome measures were feasibility (recruitment and retention rates) and acceptability of the intervention (parental questionnaires including the Warwick-Edinburgh Mental Wellbeing Scale (WEBWMS), qualitative observations and in-depth interviews with parents and therapists). We also reviewed clinical imaging data and undertook assessments of motor function, including the Hand Assessment for Infants (HAI). Assessments were also piloted in typically developing (TD) infants, to provide further information on their ease of use and acceptability. RESULTS: Over a period of 18 months we screened 20 infants referred as PS/HPI: 14 met the inclusion criteria and 13 took part. At 6 months, 11 (85%) of those enrolled had completed the final assessment. Parents valued the intervention and found it acceptable and workable. There were no adverse events related to the intervention. We recruited 14 TD infants, one of whom died prior to undertaking any assessments and one of whom was subsequently found to have a condition affecting neurodevelopmental progress: thus, data for 12 TD infants was analysed to 6 months. The HAI was well tolerated by infants and highly valued by parents. Completion rates for the WEBWMS were high and did not suggest any adverse effect of engagement in eTIPS on parental mental wellbeing. CONCLUSION: The eTIPS intervention was feasible to deliver and acceptable to families. We plan to investigate efficacy in a multicentre randomised controlled trial. TRIAL REGISTRATION: ISRCTN12547427 (registration request submitted 28/05/2015; retrospectively registered, 30/09/2015).


Assuntos
Infarto Encefálico/reabilitação , Doenças do Recém-Nascido/reabilitação , Modalidades de Fisioterapia , Reabilitação do Acidente Vascular Cerebral/métodos , Infarto Encefálico/complicações , Paralisia Cerebral/etiologia , Paralisia Cerebral/prevenção & controle , Inglaterra , Estudos de Viabilidade , Feminino , Humanos , Lactente , Recém-Nascido , Recém-Nascido Prematuro , Masculino , Pais , Prevenção Secundária/métodos , Acidente Vascular Cerebral/complicações
16.
Child Care Health Dev ; 44(5): 659-669, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30033521

RESUMO

INTRODUCTION: Parent-delivered therapy interventions for children with cerebral palsy can help achieve a sufficient therapy dose, improve parental mental well-being, and facilitate parent-child relationships creating a more relaxed familial environment. However, parent-delivered interventions may also lead to increased parental stress, guilt if the therapy is not delivered, and time constraints. The primary aim of this review was to gain a deeper understanding of the determinants of effective parent-delivered therapy interventions. METHOD: Searches were conducted in the following databases: Medline, PubMed, Scopus, Embase, CINAHL, and Cochrane. Studies had to meet the following inclusion criteria: descriptions of parent/health care professional/child experiences of parent-delivered therapy interventions for children and young people age 0-18 years with cerebral palsy, published in the English language between January 1989 and May 2017, with qualitative or mixed methods research design. The articles were critically appraised, then synthesized using a meta-ethnographic approach. RESULTS: A literature search identified 17 articles, which met the inclusion criteria. Three main themes were identified: (a) building trusting relationships, (b) enabling the parents to cope, and (c) for parents and health care professionals to see the intervention as a priority. Further synthesis presented three concepts identifying the important aspects of the interventions: empowerment, motivation, and relationships. CONCLUSIONS: The themes and concepts emerging from this qualitative synthesis can be addressed by specific points of action to support parent-delivered therapy interventions. We have summarized these in a checklist for use by intervention developers, health care professionals, and parents.


Assuntos
Pessoal Técnico de Saúde , Paralisia Cerebral/terapia , Lista de Checagem , Educação não Profissionalizante , Pais , Criança , Humanos , Relações Pais-Filho , Poder Familiar/psicologia , Pais/educação , Pais/psicologia , Relações Profissional-Família , Pesquisa Qualitativa , Autorrelato
17.
Implement Sci ; 13(1): 80, 2018 06 07.
Artigo em Inglês | MEDLINE | ID: mdl-29879986

RESUMO

BACKGROUND: Normalization Process Theory (NPT) identifies, characterises and explains key mechanisms that promote and inhibit the implementation, embedding and integration of new health techniques, technologies and other complex interventions. A large body of literature that employs NPT to inform feasibility studies and process evaluations of complex healthcare interventions has now emerged. The aims of this review were to review this literature; to identify and characterise the uses and limits of NPT in research on the implementation and integration of healthcare interventions; and to explore NPT's contribution to understanding the dynamics of these processes. METHODS: A qualitative systematic review was conducted. We searched Web of Science, Scopus and Google Scholar for articles with empirical data in peer-reviewed journals that cited either key papers presenting and developing NPT, or the NPT Online Toolkit ( www.normalizationprocess.org ). We included in the review only articles that used NPT as the primary approach to collection, analysis or reporting of data in studies of the implementation of healthcare techniques, technologies or other interventions. A structured data extraction instrument was used, and data were analysed qualitatively. RESULTS: Searches revealed 3322 citations. We show that after eliminating 2337 duplicates and broken or junk URLs, 985 were screened as titles and abstracts. Of these, 101 were excluded because they did not fit the inclusion criteria for the review. This left 884 articles for full-text screening. Of these, 754 did not fit the inclusion criteria for the review. This left 130 papers presenting results from 108 identifiable studies to be included in the review. NPT appears to provide researchers and practitioners with a conceptual vocabulary for rigorous studies of implementation processes. It identifies, characterises and explains empirically identifiable mechanisms that motivate and shape implementation processes. Taken together, these mean that analyses using NPT can effectively assist in the explanation of the success or failure of specific implementation projects. Ten percent of papers included critiques of some aspect of NPT, with those that did mainly focusing on its terminology. However, two studies critiqued NPT emphasis on agency, and one study critiqued NPT for its normative focus. CONCLUSIONS: This review demonstrates that researchers found NPT useful and applied it across a wide range of interventions. It has been effectively used to aid intervention development and implementation planning as well as evaluating and understanding implementation processes themselves. In particular, NPT appears to have offered a valuable set of conceptual tools to aid understanding of implementation as a dynamic process.


Assuntos
Assistência à Saúde , Modelos Teóricos , Teoria de Sistemas , Adolescente , Austrália , Criança , Estudos de Viabilidade , Feminino , Humanos , Gravidez
18.
BMC Pulm Med ; 18(1): 80, 2018 May 22.
Artigo em Inglês | MEDLINE | ID: mdl-29788946

RESUMO

BACKGROUND: Bronchiectasis is an incurable lung disease characterised by irreversible airway dilatation. It causes symptoms including chronic productive cough, dyspnoea, and recurrent respiratory infections often requiring hospital admission. Fatigue and reductions in quality of life are also reported in bronchiectasis. Patients often require multi-modal treatments that can be burdensome, leading to issues with adherence. In this article we review the provision of, and requirement for, education and information in bronchiectasis. DISCUSSION: To date, little research has been undertaken to improve self-management in bronchiectasis in comparison to other chronic conditions, such as COPD, for which there has been a wealth of recent developments. Qualitative work has begun to establish that information deficit is one of the potential barriers to self-management, and that patients feel having credible information is fundamental when learning to live with and manage bronchiectasis. Emerging research offers some insights into ways of improving treatment adherence and approaches to self-management education; highlighting ways of addressing the specific unmet information needs of patients and their families who are living with bronchiectasis. CONCLUSIONS: We propose non-pharmacological recommendations to optimise patient self-management and symptom recognition; with the aim of facilitating measurable improvements in health outcomes for patients with bronchiectasis.


Assuntos
Bronquiectasia/terapia , Educação de Pacientes como Assunto , Acesso à Informação , Bronquiectasia/epidemiologia , Doença Crônica , Educação em Saúde/métodos , Humanos , Autogestão/métodos
19.
Br J Occup Ther ; 81(4): 218-226, 2018 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-29657352

RESUMO

Introduction: Primary Sjögren's syndrome is the third most common systemic autoimmune rheumatic disease, following rheumatoid arthritis and systemic lupus erythematosus, and results in dryness, fatigue, discomfort and sleep disturbances. Sleep is relatively unexplored in primary Sjögren's syndrome. We investigated the experiences of sleep disturbances from the viewpoint of primary Sjögren's syndrome patients and their partners and explored the acceptability of cognitive behavioural therapy for insomnia. Method: We used focus groups to collect qualitative data from 10 patients with primary Sjögren's syndrome and three partners of patients. The data were recorded, transcribed verbatim and analysed using thematic analysis. Results: Five themes emerged from the data: (a) Experience of sleep disturbances; (b) variation and inconsistency in sleep disturbances; (c) the domino effect of primary Sjögren's syndrome symptoms; (d) strategies to manage sleep; (e) acceptability of evidence-based techniques. Sleep disturbances were problematic for all patients, but specific disturbances varied between participants. These included prolonged sleep onset time and frequent night awakenings and were aggravated by pain and discomfort. Patients deployed a range of strategies to try and self-manage. Cognitive behavioural therapy for insomnia was seen as an acceptable intervention, as long as a rationale for its use is given and it is tailored for primary Sjögren's syndrome. Conclusion: Primary Sjögren's syndrome patients described a range of sleep disturbances. Applying tailored, evidence-based sleep therapy interventions may improve sleep, severity of other primary Sjögren's syndrome symptoms and functional ability.

20.
Health Technol Assess ; 22(16): 1-144, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29650060

RESUMO

BACKGROUND: Approximately 9000 new cases of head and neck squamous cell cancers (HNSCCs) are treated by the NHS each year. Chemoradiation therapy (CRT) is a commonly used treatment for advanced HNSCC. Approximately 90% of patients undergoing CRT require nutritional support via gastrostomy or nasogastric tube feeding. Long-term dysphagia following CRT is a primary concern for patients. The effect of enteral feeding routes on swallowing function is not well understood, and the two feeding methods have, to date (at the time of writing), not been compared. The aim of this pilot randomised controlled trial (RCT) was to compare these two options. METHODS: This was a mixed-methods multicentre study to establish the feasibility of a RCT comparing oral feeding plus pre-treatment gastrostomy with oral feeding plus as-required nasogastric tube feeding in patients with HNSCC. Patients were recruited from four tertiary centres treating cancer and randomised to the two arms of the study (using a 1 : 1 ratio). The eligibility criteria were patients with advanced-staged HNSCC who were suitable for primary CRT with curative intent and who presented with no swallowing problems. MAIN OUTCOME MEASURES: The primary outcome was the willingness to be randomised. A qualitative process evaluation was conducted alongside an economic modelling exercise. The criteria for progression to a Phase III trial were based on a hypothesised recruitment rate of at least 50%, collection of outcome measures in at least 80% of those recruited and an economic value-of-information analysis for cost-effectiveness. RESULTS: Of the 75 patients approached about the trial, only 17 consented to be randomised [0.23, 95% confidence interval (CI) 0.13 to 0.32]. Among those who were randomised, the compliance rate was high (0.94, 95% CI 0.83 to 1.05). Retention rates were high at completion of treatment (0.94, 95% CI 0.83 to 1.05), at the 3-month follow-up (0.88, 95% CI 0.73 to 1.04) and at the 6-month follow-up (0.88, 95% CI 0.73 to 1.04). No serious adverse events were recorded in relation to the trial. The qualitative substudy identified several factors that had an impact on recruitment, many of which are amenable to change. These included organisational factors, changing cancer treatments and patient and clinician preferences. A key reason for the differential recruitment between sites was the degree to which the multidisciplinary team gave a consistent demonstration of equipoise at all patient interactions at which supplementary feeding was discussed. An exploratory economic model generated from published evidence and expert opinion suggests that, over the 6-month model time horizon, pre-treatment gastrostomy tube feeding is not a cost-effective option, although this should be interpreted with caution and we recommend that this should not form the basis for policy. The economic value-of-information analysis indicates that additional research to eliminate uncertainty around model parameters is highly likely to be cost-effective. STUDY LIMITATIONS: The recruitment issues identified for this cohort may not be applicable to other populations undergoing CRT. There remains substantial uncertainty in the economic evaluation. CONCLUSIONS: The trial did not meet one of the three criteria for progression, as the recruitment rate was lower than hypothesised. Once patients were recruited to the trial, compliance and retention in the trial were both high. The implementation of organisational and operational measures can increase the numbers recruited. The economic analysis suggests that further research in this area is likely to be cost-effective. FUTURE WORK: The implementation of organisational and operational measures can increase recruitment. The appropriate research question and design of a future study needs to be identified. More work is needed to understand the experiences of nasogastric tube feeding in patients undergoing CRT. TRIAL REGISTRATION: Current Controlled Trials ISRCTN48569216. 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. 22, No. 16. See the NIHR Journals Library website for further project information.


Assuntos
Gastrostomia/métodos , Neoplasias de Cabeça e Pescoço/terapia , Intubação Gastrointestinal/métodos , Preferência do Paciente , Projetos de Pesquisa , Idoso , Índice de Massa Corporal , Quimiorradioterapia , Análise Custo-Benefício , Deglutição , Feminino , Gastrostomia/efeitos adversos , Gastrostomia/economia , Neoplasias de Cabeça e Pescoço/radioterapia , Humanos , Intubação Gastrointestinal/efeitos adversos , Intubação Gastrointestinal/economia , Masculino , Pessoa de Meia-Idade , Seleção de Pacientes , Projetos Piloto , Qualidade de Vida , Avaliação da Tecnologia Biomédica
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