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1.
Am J Clin Nutr ; 113(4): 832-844, 2021 04 06.
Artigo em Inglês | MEDLINE | ID: mdl-33677550

RESUMO

BACKGROUND: Inflammatory bowel disease (IBD) may impact the extent to which food, eating, and drinking bring satisfaction and enjoyment to peoples' lives, and this may impact dietary intake. The prevalence of an impaired food-related quality of life (FR-QoL), its associated factors, and its impact on diet have not been explored. OBJECTIVES: To measure the prevalence and nature of the burden of impaired FR-QoL in people with IBD, the factors associated with these, and their associations with nutrient intake. METHODS: We recruited 1576 outpatients with IBD (≥16 years old) in person from 7 IBD centers across the United Kingdom. Patients completed validated questionnaires to measure their FR-QoL, quality of life (QoL), distress, fatigue, anxiety, and depression. Dietary intake was recorded using the European Prospective Investigation into Cancer FFQ. A health professional recorded disease activity, Montreal classification, blood results, BMI, and malnutrition risk. FR-QoL was regressed onto explanatory variables using univariable and multivariable analyses. RESULTS: Data from 1221 patients were available (77.4% response; Crohn's disease, 65%; ulcerative colitis, 35%). The FR-QoL mean (± SD) score was 80.8 ± 26.9, with wide ranges (minimum, 29; maximum, 145). Following multivariable regression, the strongest associations with FR-QoL were the number of recent disease flares (5 flares ß = -12.7; P < 0.001), the IBD-specific QoL (ß = 0.33; P < 0.001), and IBD-related distress (ß = -0.26; P < 0.001). Patients with poorer FR-QoL had lower intakes of fiber (nonstarch polysaccharide; Q1 to Q5 difference = 2.1 g/d; 95% CI: 0.4-3.8; P = 0.048), calcium (192.6 mg/d; 95% CI: 112.5-272.6; P < 0.001), phosphorus (167 mg/d; 95% CI: 58-276; P = 0.041), and magnesium (34.4 mg/d; 95% CI: 9.3-59.4; P = 0.041). CONCLUSIONS: Impaired FR-QoL is prevalent in IBD and is associated with recurrent disease flares, a reduced IBD-specific QoL, and greater IBD-related distress. A poorer FR-QoL was associated with lower intakes of key nutrients of importance to IBD, including those relating to gut health and bone mineralization.


Assuntos
Ingestão de Alimentos/psicologia , Alimentos/efeitos adversos , Doenças Inflamatórias Intestinais/patologia , Doenças Inflamatórias Intestinais/psicologia , Qualidade de Vida , Adolescente , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Reino Unido , Adulto Jovem
2.
Int J Soc Psychiatry ; : 20764021993510, 2021 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-33570018

RESUMO

PURPOSE: An individual's lack of social connections and social isolation is often associated with feelings of loneliness which is regarded as having a negative effect on health. This paper describes the development and assessment of a 10 item 'Personal Sociability and Connections Scale' (PeSCS) to measure individual's disposition and accompanying skills to seek out companionship and engage in interpersonal relations. METHODS: The study was conducted at a rural primary care unit in Northern Greece. A total of 199 attenders were recruited over a 6-week period in 2020 and questionnaires completed. This informed the 10-items PeSCS that comprises Social, Behavioral, and Emotional components focusing on the expression of social comfort, willingness to share experiences, stories and concepts, and feelings of similarity at first contact. Reliability of the PeSC scale was assessed and the relationship with scale scores examined as an indicator of convergent validity. A multivariate linear regression analysis was performed to examine the relationship of PeSC scale score with the characteristics of participants. RESULTS: Assessment of reliability of PeSC scale produced a Cronbach's alpha of 0.809. The relationship between components and the total PeSCS scores identified significant correlations (p < .001). At a multivariate level, male gender was the sample characteristic with a significant association with scale levels (p < .05) and higher annual income with Social component (p < .05). Otherwise the distribution of sociability dispositions was similar across population groups. CONCLUSION: The 10-item PeSC scale forms a simple and quick to complete measure whose overall reliability was rated as 'meritorious'. The PeSC instrument may be a useful tool for assessing the causes and appropriate responses to the negative health effects of loneliness and social isolation.

3.
Seizure ; 80: 56-62, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32540637

RESUMO

PURPOSE: Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent Treatment Centre and telephone-based support from an epilepsy nurse specialist. METHODS: We conducted a community-based interview study in South East England, informed by a qualitative framework approach. 25 adults with epilepsy and 5 of their carers took part. RESULTS: Participants' choice to attend ED generally corresponded with guidelines, including continuing seizures and injury. Nevertheless, over half reported unwanted or unnecessary ED attendance, mainly due to lack of access to individual patient history, a carer, or seizures occurring in a public place. Participants used proactive strategies to communicate their care needs to others, including 24 -h alarm devices and care plans. Some suggested preventative strategies including referral after ED. Participants highlighted the importance of ambulance staff in providing fast and efficient care that gives reassurance. CONCLUSION: Improving communication and access to preventative, proactive services may facilitate better outcomes within existing care pathways. PWE felt ED alternatives were helpful in some circumstances, but Urgent Treatment Centres or epilepsy nurse specialists were not viewed as an ED replacement.

4.
BMC Fam Pract ; 21(1): 76, 2020 04 29.
Artigo em Inglês | MEDLINE | ID: mdl-32349696

RESUMO

BACKGROUND: End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life. METHODS: A retrospective cohort study of cancer patients who died in 2000-2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR). RESULTS: Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07-2.03). Increasing age was related to fewer consultations (aRRs 0.77-0.96), less prescriptions (aRR 1.09-1.44), and a higher chance of referral (aRRs 1.08-1.16) but less likely to have palliative care needs recognised (aRRs 0.53-0.89). CONCLUSIONS: GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.

5.
BMJ Open ; 10(4): e035516, 2020 04 16.
Artigo em Inglês | MEDLINE | ID: mdl-32303515

RESUMO

OBJECTIVE: To determine the feasibility and optimal design of a randomised controlled trial (RCT) of Seizure First Aid Training For Epilepsy (SAFE). DESIGN: Pilot RCT with embedded microcosting. SETTING: Three English hospital emergency departments (EDs). PARTICIPANTS: Patients aged ≥16 with established epilepsy reporting ≥2 ED visits in the prior 12 months and their significant others (SOs). INTERVENTIONS: Patients (and their SOs) were randomly allocated (1:1) to SAFE plus treatment-as-usual (TAU) or TAU alone. SAFE is a 4-hour group course. MAIN OUTCOME MEASURES: Two criteria evaluated a definitive RCT's feasibility: (1) ≥20% of eligible patients needed to be consented into the pilot trial; (2) routine data on use of ED over the 12 months postrandomisation needed securing for ≥75%. Other measures included eligibility, ease of obtaining routine data, availability of self-report ED data and comparability, SAFE's effect and intervention cost. RESULTS: Of ED attendees with a suspected seizure, 424 (10.6%) patients were eligible; 53 (12.5%) patients and 38 SOs consented. Fifty-one patients (and 37 SOs) were randomised. Routine data on ED use at 12 months were secured for 94.1% patients. Self-report ED data were available for 66.7% patients. Patients reported more visits compared with routine data. Most (76.9%) patients randomised to SAFE received it and no related serious adverse events occurred. ED use at 12 months was lower in the SAFE+TAU arm compared with TAU alone, but not significantly (rate ratio=0.62, 95% CI 0.33 to 1.17). A definitive trial would need ~674 patient participants and ~39 recruitment sites. Obtaining routine data was challenging, taking ~8.5 months. CONCLUSIONS: In satisfying only one predetermined 'stop/go' criterion, a definitive RCT is not feasible. The low consent rate in the pilot trial raises concerns about a definitive trial's finding's external validity and means it would be expensive to conduct. Research is required into how to optimise recruitment from the target population. TRIAL REGISTRATION NUMBER: ISRCTN13871327.

6.
Br J Health Psychol ; 25(1): 89-106, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31756279

RESUMO

OBJECTIVES: Social support influences adherence to treatment in chronic illness, but there is uncertainty about its facilitators and constraints. This study explored the forms, processes, and responses associated with mobilization of informal support across three life contexts amongst patients with Xeroderma Pigmentosum (XP), a condition requiring rigorous photoprotection to reduce cancer risks. DESIGN: Qualitative interview study. METHODS: A total of 25 adults with XP participated in semi-structured interviews conducted face to face. An inductive thematic analysis was applied using a framework approach. RESULTS: Practical support, involving both assistance with recommended photoprotection and adjusting daily activities to reduce exposure, was the key form of support provided by family and friends. However, responses to this support differed with two groups identified based on the relative priority given to photoprotection in daily life and processes of disclosure. For 'positive responders', support aligned with their own priorities to photoprotect, conveyed feelings of being cared-for and was facilitated by talking openly. In contrast, for 'negative responders' support conflicted with their priority of living 'normally' and their limited disclosure hindered receipt of helpful support in personal, clinic, and work interactions. Fears of workplace stigma also reduced disclosure amongst participants open in other contexts. CONCLUSIONS: Practical support conveyed psychosocial support with positive effects on adherence. This suggests the traditional separation into practical and emotional support is overly simplistic, with measures potentially missing important aspects. Interactional processes contribute to the effects of support, which can be addressed by targeting disclosure, stigma, and other barriers at individual and organizational levels. Statement of contribution What is already known on this subject? Social support can be both a facilitator and a hindrance to treatment adherence. Practical support is identified as the most important form of support in the context of adherence. The processes of support underpinning its relationship to adherence are unclear. What does this study add? Variations in the provision and impacts of support are influenced by participants' disclosure and attitudes to photoprotection, with two key groups comprising 'positive responders' and 'negative responders'. The influence of emotional support on adherence may be underestimated through neglect of the ways in which practical support often conveys feelings of being valued and cared-for. Barriers to mobilizing effective adherence support extends across life spheres, with fears of stigma and discrimination in work settings highlighting the need to intervene at individual and organizational levels.


Assuntos
Cooperação do Paciente/estatística & dados numéricos , Roupa de Proteção/estatística & dados numéricos , Apoio Social , Protetores Solares/uso terapêutico , Xeroderma Pigmentoso/psicologia , Xeroderma Pigmentoso/terapia , Adolescente , Adulto , Família/psicologia , Feminino , Amigos/psicologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente/psicologia , Pesquisa Qualitativa , Adulto Jovem
7.
Qual Health Res ; 30(8): 1275-1286, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-30741094

RESUMO

In this study, we examine photoprotection for children with Xeroderma pigmentosum (XP), a rare genetic skin disease requiring rigorous photoprotection, to reduce risks of severe burning and skin cancers from exposure to ultraviolet radiation (UVR). We elicit the views and experiences of both children and their parents to inform the care and support provided. Qualitative semistructured interviews were undertaken with 12 child-parent dyads recruited from the National XP Specialist service in London. We employed a framework approach to analysis. This identified a high level of photoprotection based either on "protection" to facilitate normal activities or "avoidance" of outdoor activity with priority given to normality in the future. These approaches were shaped by perceptions of clinical risk, the emphasis given to a normal family life and families' circumstances and resources. The findings contribute to notions of normalization and coping with demanding care regimens and inform approaches to working with families.

8.
BMJ Open ; 9(11): e031696, 2019 11 02.
Artigo em Inglês | MEDLINE | ID: mdl-31678950

RESUMO

INTRODUCTION: Emergency department (ED) visits for epilepsy are common, costly, often clinically unnecessary and typically lead to little benefit for epilepsy management. An 'Alternative Care Pathway' (ACP) for epilepsy, which diverts people with epilepsy (PWE) away from ED when '999' is called and leads to care elsewhere, might generate savings and facilitate improved ambulatory care. It is unknown though what features it should incorporate to make it acceptable to persons from this particularly vulnerable target population. It also needs to be National Health Service (NHS) feasible. This project seeks to identify the optimal ACP configuration. METHODS AND ANALYSIS: Mixed-methods project comprising three-linked stages. In Stage 1, NHS bodies will be surveyed on ACPs they are considering and semi-structured interviews with PWE and their carers will explore attributes of care important to them and their concerns and expectations regarding ACPs. In Stage 2, Discrete Choice Experiments (DCE) will be completed with PWE and carers to identify the relative importance placed on different care attributes under common seizure scenarios and the trade-offs people are willing to make. The uptake of different ACP configurations will be estimated. In Stage 3, two Knowledge Exchange workshops using a nominal group technique will be run. NHS managers, health professionals, commissioners and patient and carer representatives will discuss DCE results and form a consensus on which ACP configuration best meets users' needs and is NHS feasible. ETHICS AND DISSEMINATION: Ethical approval: NRES Committee (19/WM/0012) and King's College London ethics Committee (LRS-18/19-10353). Primary output will be identification of optimal ACP configuration which should be prioritised for implementation and evaluation. A pro-active dissemination strategy will make those considering developing or supporting an epilepsy ACP aware of the project and opportunities to take part in it. It will also ensure they are informed of its findings. PROJECT REGISTRATION NUMBER: Researchregistry4723.


Assuntos
Serviço Hospitalar de Emergência , Tratamento de Emergência , Epilepsia/terapia , Estudos Observacionais como Assunto/métodos , Assistência Centrada no Paciente , Projetos de Pesquisa , Adulto , Humanos
9.
Rural Remote Health ; 19(4): 5241, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31661290

RESUMO

INTRODUCTION: Behavioral determinants can enable or hinder motivation towards registration and donorship and, subsequently, action or inertia towards organ donation. Nevertheless, there is limited information about the role of self-efficacy in relation to organ donation awareness and presumed consent among individuals and their families. The aim of this study was to explore knowledge, attitudes and general self-efficacy as behavioral determinants for organ donation among rural primary care attendants, in order to tailor awareness strategies for reversing inertia within an opt-out system. METHODS: This was a prospective face-to-face survey during regularly scheduled appointments of 203 attendants at a rural primary care unit in northern Greece. Responses to a 12-item adapted 'Organ donation awareness' questionnaire measuring knowledge, attitudes and awareness were related to participants' General Self-Efficacy (GSE) Scale score. Hierarchical modelling of a multiple linear regression model was adopted with GSE score added. RESULTS: About one-third of respondents (34.0%) had discussed presumed consent with a partner, family member or friend. More than half (54.2%) were concerned that donated organs might be used without consent for other purposes, such as medical research. A total of 30% found organ donation unacceptable because of religious beliefs. Organ donation awareness was not influenced by respondents' specific characteristics, but was significantly related to the GSE score (standard β=0.155, p=0.033). CONCLUSION: Overall, organ donation perceptions among rural primary care recipients were determined by knowledge of the presumed consent procurement system, pre-conceptions, religious beliefs, altruism and GSE scores. The association of self-efficacy with raised awareness could potentially explain the gap between high intent to consent as a donor and subsequent lack of follow-up action. Further comparative research across behavioral determinants between rural/urban groups is needed in order to tailor awareness strategies suitable for an opt-out system.


Assuntos
Atenção Primária à Saúde , População Rural , Autoeficácia , Doadores de Tecidos/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Relações Familiares , Feminino , Grécia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Consentimento Presumido , Estudos Prospectivos , Religião , Fatores Socioeconômicos , Obtenção de Tecidos e Órgãos/métodos , Adulto Jovem
10.
BMJ Open ; 9(7): e028577, 2019 07 17.
Artigo em Inglês | MEDLINE | ID: mdl-31320353

RESUMO

INTRODUCTION: Poor adherence to photoprotection for people with xeroderma pigmentosum (XP) can be life-threatening. A randomised controlled trial (RCT) is being conducted to test the efficacy of a personalised adherence intervention (XPAND) to reduce the level of ultraviolet radiation (UVR) reaching the face, by improving photoprotection activities in adults with XP. METHODS AND ANALYSIS: A two-armed parallel groups RCT, where we randomised 24 patients with suboptimal adherence to either an intervention group who received XPAND in 2018 or a delayed intervention group who will receive XPAND in 2019. XPAND involves seven sessions, one-to-one with a facilitator, using behaviour change techniques and specially designed materials to target barriers to photoprotection. Following baseline assessment in April 2018 (t0) and intervention, the primary outcome will be measured across 21 consecutive days in June and July 2018 (t1). The primary outcome is the average daily UVR dose to the face (D-to-F), calculated by combining objective UVR exposure at the wrist (measured by a dosimeter) with face photoprotection activities recorded on a daily UVR protection diary. Secondary outcomes include average daily UVR D-to-F across 21 days in August (t2); psychosocial process variables measured by daily questions (t0, t1, t2) and self-report questionnaires (t0, t1, t2, December 2018 (t3)). Intervention cost-utility is assessed by service use and personal cost questionnaires (t0, t3). The delayed intervention control arm participants will complete three further assessments in April 2019 (t4) and June-July 2019 (t5), and December 2019 (t6) with dosimetry and UVR protection diary completed for 21 days at t4 and t5. A process evaluation will be conducted using mixed methods. ETHICS AND DISSEMINATION: Ethical approval has been received from West London & GTAC REC 17/LO/2110. Results will be disseminated in peer-reviewed journals and at conferences. This study tests a novel intervention, which, if successful, will be integrated into routine care. TRIAL REGISTRATION NUMBER: NCT03445052; Pre-results.


Assuntos
Comportamentos Relacionados com a Saúde , Cooperação do Paciente , Raios Ultravioleta/efeitos adversos , Xeroderma Pigmentoso/terapia , Adulto , Aconselhamento/métodos , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Protetores Solares/uso terapêutico , Inquéritos e Questionários , Xeroderma Pigmentoso/psicologia
11.
BMJ Open ; 9(3): e026421, 2019 03 08.
Artigo em Inglês | MEDLINE | ID: mdl-30852548

RESUMO

OBJECTIVES: Transitioning to secondary progressive multiple sclerosis (SPMS) is demanding for both patients and healthcare professionals. The particular challenges and the ways patients cope are poorly understood. The present study examines what challenges people face when diagnosed with SPMS by exploring experiences of people who have transitioned recently (up to 5 years). DESIGN: Semistructured qualitative interviews at two time points a year apart. Interviews were analysed using inductive thematic analysis. SETTING: UK. PARTICIPANTS: We interviewed 21 people at baseline and 17 participated in the follow-up interviews. RESULTS: The majority of participants reported expecting to transition to SPMS, and the diagnosis did not make much difference to them. Participants described increasing emotional and physical challenges after transitioning to SPMS and between the first and second interviews. Planning, using distractions and maintaining social roles helped participants cope with the increased challenges. The same coping strategies were used between the two interviews. Participants felt there was not much left to do regarding the management of their symptoms. A key theme was the sense of abandonment from healthcare services after transitioning to SPMS. CONCLUSIONS: After transitioning to SPMS, people are faced with multiple challenges. Participants described a lack of directions for symptoms management and lack of support from the healthcare system. An integrated multidisciplinary healthcare approach is crucial at the progressive stage of the disease to alleviate feelings of helplessness and promote symptom management.


Assuntos
Adaptação Psicológica , Esclerose Múltipla Crônica Progressiva , Adulto , Idoso , Atitude Frente a Saúde , Progressão da Doença , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla Crônica Progressiva/fisiopatologia , Esclerose Múltipla Crônica Progressiva/psicologia , Pesquisa Qualitativa
12.
Behav Neurol ; 2019: 5048794, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30863463

RESUMO

Purpose: To measure fidelity with which a group seizure first aid training intervention was delivered within a pilot randomized controlled trial underway in the UK for adults with epilepsy who visit emergency departments (ED) and informal carers. Estimates of its effects, including on ED use, will be produced by the trial. Whilst hardly ever reported for trials of epilepsy interventions-only one publication on this topic exists-this study provides the information on treatment fidelity necessary to allow the trial's estimates to be accurately interpreted. This rare worked example of how fidelity can be assessed could also provide guidance sought by neurology trialists on how to assess fidelity. Methods: 53 patients who had visited ED on ≥2 occasions in prior year were recruited for the trial; 26 were randomized to the intervention. 7 intervention courses were delivered for them by one facilitator. Using audio recordings, treatment "adherence" and "competence" were assessed. Adherence was assessed by a checklist of the items comprising the intervention. Using computer software, competence was measured by calculating facilitator speech during the intervention (didacticism). Interrater reliability was evaluated by two independent raters assessing each course using the measures and their ratings being compared. Results: The fidelity measures were found to be reliable. For the adherence instrument, raters agreed 96% of the time, PABAK-OS kappa 0.91. For didacticism, raters' scores had an intraclass coefficient of 0.96. In terms of treatment fidelity, not only were courses found to have been delivered with excellent adherence (88% of its items were fully delivered) but also as intended they were highly interactive, with the facilitator speaking for, on average, 55% of course time. Conclusions: The fidelity measures used were reliable and showed that the intervention was delivered as attended. Therefore, any estimates of intervention effect will not be influenced by poor implementation fidelity.


Assuntos
Serviço Hospitalar de Emergência/estatística & dados numéricos , Epilepsia/terapia , Primeiros Socorros , Convulsões/terapia , Adolescente , Adulto , Idoso , Epilepsia/diagnóstico , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Convulsões/diagnóstico , Resultado do Tratamento , Adulto Jovem
13.
BMJ Open ; 9(2): e024445, 2019 02 19.
Artigo em Inglês | MEDLINE | ID: mdl-30782905

RESUMO

BACKGROUND: A high level of photoprotection is required by people with xeroderma pigmentosum (XP), a rare skin disease, to reduce skin cancer and other risks. However poor photoprotection is thought to be widespread. PURPOSE: This study examines the influences on photoprotection behaviours in adults with XP. DESIGN: Inductive qualitative study with semistructured interviews. Analysis employed a framework approach. SETTING: National sample recruited through a specialist XP centre in London. METHODS: Semistructured interviews at patients' homes. All transcripts were coded and themes charted for each participant. Comparisons within and across cases identified common themes and differing motivations and approaches to photoprotection. Credibility of interpretations assessed through patient/carer input and clinic adherence scores. PARTICIPANTS: 25 adults (17 male, eight female) aged 16-63 years with diagnosed XP attending a specialist centre. 18 lived outside London. RESULTS: Awareness of risks of ultraviolet radiation (UVR) and photoprotection was high. However, photoprotection behaviours varied according to perceived necessity and concerns. Three behavioural responses were identified: (1) 'dominated' by planning and routines to achieve a high level of photoprotection with significant activity restrictions and psychosocial impacts. (2) 'resistant' to photoprotection with priority given to avoiding an illness identity and enjoying a normal life. (3) Photoprotection' integrated' with an individual's life with little psychosocial impact. These responses were influenced by illness, personal and contextual factors including age, life stage and social support. Only the 'integrated' group achieved an equilibrium between perceived 'necessity' and 'concerns'. CONCLUSIONS: The personal balance between perceived risks of UVR and social/psychological 'concerns' led to differing behavioural responses and contributes to an understanding of adaptation and normalisation in chronic illness. The study will also inform a series of individualised behavioural interventions to reduce measured UVR exposure among people with XP that are potentially applicable to other conditions with high risks of skin cancer.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Roupa de Proteção , Neoplasias Cutâneas/prevenção & controle , Queimadura Solar/prevenção & controle , Protetores Solares/uso terapêutico , Xeroderma Pigmentoso/terapia , Adolescente , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Pesquisa Qualitativa , Risco , Neoplasias Cutâneas/etiologia , Queimadura Solar/etiologia , Reino Unido , Xeroderma Pigmentoso/complicações , Adulto Jovem
14.
BMJ Open ; 9(12): e029478, 2019 12 31.
Artigo em Inglês | MEDLINE | ID: mdl-31892643

RESUMO

One in four births in the UK is to foreign-born women. In 2016, the figure was 28.2%, the highest figure on record, with maternal and perinatal mortality also disproportionately higher for some immigrant women. Our objective was to examine issues of access and experience of maternity care by immigrant women based on a systematic review and narrative synthesis of empirical research. REVIEW METHODS: A research librarian designed the search strategies (retrieving literature published from 1990 to end June 2017). We retrieved 45 954 citations and used a screening tool to identify relevance. We searched for grey literature reported in databases/websites. We contacted stakeholders with expertise to identify additional research. RESULTS: We identified 40 studies for inclusion: 22 qualitative, 8 quantitative and 10 mixed methods. Immigrant women, particularly asylum-seekers, often booked and accessed antenatal care later than the recommended first 10 weeks. Primary factors included limited English language proficiency, lack of awareness of availability of the services, lack of understanding of the purpose of antenatal appointments, immigration status and income barriers. Maternity care experiences were both positive and negative. Women with positive perceptions described healthcare professionals as caring, confidential and openly communicative in meeting their medical, emotional, psychological and social needs. Those with negative views perceived health professionals as rude, discriminatory and insensitive to their cultural and social needs. These women therefore avoided continuously utilising maternity care.We found few interventions focused on improving maternity care, and the effectiveness of existing interventions have not been scientifically evaluated. CONCLUSIONS: The experiences of immigrant women in accessing and using maternity care services were both positive and negative. Further education and training of health professionals in meeting the challenges of a super-diverse population may enhance quality of care, and the perceptions and experiences of maternity care by immigrant women.


Assuntos
Competência Cultural , Emigrantes e Imigrantes , Acesso aos Serviços de Saúde , Serviços de Saúde Materna , Feminino , Humanos , Narração , Satisfação do Paciente , Gravidez , Resultado da Gravidez , Reino Unido
15.
J Health Psychol ; 24(14): 2031-2041, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-28810476

RESUMO

This study explored experiences of stigma in 25 adults with xeroderma pigmentosum. Analysis of semi-structured interviews revealed the changing nature of stigma over the lifetime. Bullying occurred in childhood, whereas adults were questioned about both their photoprotection and skin damage, often resulting in internalised feelings of stigma. Resilience and rejection of feelings of stigma increased with age and experiences of stigma differed across cultures. Findings indicate a need to develop social skills training to help people reject feelings of stigma. Future research should explore perspectives of families, friends and formal institutions and their potential to cause or reduce feelings of stigma.


Assuntos
Estigma Social , Xeroderma Pigmentoso/psicologia , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Ajustamento Emocional , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido , Adulto Jovem
17.
Healthcare (Basel) ; 6(3)2018 Aug 30.
Artigo em Inglês | MEDLINE | ID: mdl-30200247

RESUMO

BACKGROUND: There is a significant geographical disparity in place of death. Socio-demographic and disease-related variables only explain less than a quarter of the variation. Healthcare service factors may account for some (or much) of the remaining variation but their effects have never been systematically evaluated, partly due to the lack of a conceptual framework. This study aims to propose a population-based framework to guide the evaluation of the role of the healthcare service factors in place of death. METHODS: Review and synthesis of health service models that include the impact of a service component on either place of death/end of life care outcomes or service access/utilization. RESULTS: The framework conceptualizes the impact of healthcare services on the place of death as starting from the end of life care policies that in turn influence service commissioning and shape healthcare service characteristics, including service type, service capacity-facilities, service location, and workforce, through which service utilization and ultimately place of death are affected. Patient socio-demographics, disease-related variables, family and community support and social care also influence place of death, but they are not the focus of this framework and therefore are grouped as needs and other environmental factors. Information on service utilization, together with the place of death, creates loop feedback to inform policy and service commission. CONCLUSIONS: The framework provides guidance for analysis aiming to understand the role of healthcare services in place of death. It aids the interpretation of results in the light of existing knowledge and potentially identifies service factors that can be addressed to improve end of life care.

18.
Health Technol Assess ; 22(21): 1-142, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29717699

RESUMO

BACKGROUND: Epilepsy is a common neurological condition resulting in recurrent seizures. Research evidence in long-term conditions suggests that patients benefit from self-management education and that this may improve quality of life (QoL). Epilepsy self-management education has yet to be tested in a UK setting. OBJECTIVES: To determine the effectiveness and cost-effectiveness of Self-Management education for people with poorly controlled epILEpsy [SMILE (UK)]. DESIGN: A parallel pragmatic randomised controlled trial. SETTING: Participants were recruited from eight hospitals in London and south-east England. PARTICIPANTS: Adults aged ≥ 16 years with epilepsy and two or more epileptic seizures in the past year, who were currently being prescribed antiepileptic drugs. INTERVENTION: A 2-day group self-management course alongside treatment as usual (TAU). The control group received TAU. MAIN OUTCOME MEASURES: The primary outcome is QoL in people with epilepsy at 12-month follow-up using the Quality Of Life In Epilepsy 31-P (QOLIE-31-P) scale. Other outcomes were seizure control, impact of epilepsy, medication adverse effects, psychological distress, perceived stigma, self-mastery and medication adherence. Cost-effectiveness analyses and a process evaluation were undertaken. RANDOMISATION: A 1 : 1 ratio between trial arms using fixed block sizes of two. BLINDING: Participants were not blinded to their group allocation because of the nature of the study. Researchers involved in data collection and analysis remained blinded throughout. RESULTS: The trial completed successfully. A total of 404 participants were enrolled in the study [SMILE (UK), n = 205; TAU, n = 199] with 331 completing the final follow-up at 12 months [SMILE (UK), n = 163; TAU, n = 168]. In the intervention group, 61.5% completed all sessions of the course. No adverse events were found to be related to the intervention. At baseline, participants had a mean age of 41.7 years [standard deviation (SD) 14.1 years], and had epilepsy for a median of 18 years. The mean QOLIE-31-P score for the whole group at baseline was 66.0 out of 100.0 (SD 14.2). Clinically relevant levels of anxiety symptoms were reported in 53.6% of the group and depression symptoms in 28.0%. The results following an intention-to-treat analysis showed no change in any measures at the 12-month follow-up [QOLIE-31-P: SMILE (UK) mean: 67.4, SD 13.5; TAU mean: 69.5, SD 14.8]. The cost-effectiveness study showed that SMILE (UK) was possibly cost-effective but was also associated with lower QoL. The process evaluation with 20 participants revealed that a group course increased confidence by sharing with others and improved self-management behaviours. CONCLUSIONS: For people with epilepsy and persistent seizures, a 2-day self-management education course is cost-saving, but does not improve QoL after 12-months or reduce anxiety or depression symptoms. A psychological intervention may help with anxiety and depression. Interviewed participants reported attending a group course increased their confidence and helped them improve their self-management. FUTURE WORK: More research is needed on self-management courses, with psychological components and integration with routine monitoring. TRIAL REGISTRATION: Current Controlled Trials ISRCTN57937389. 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. 21. See the NIHR Journals Library website for further project information.


Assuntos
Epilepsia/terapia , Educação de Pacientes como Assunto/organização & administração , Qualidade de Vida , Autogestão/métodos , Adulto , Anticonvulsivantes/uso terapêutico , Ansiedade/epidemiologia , Análise Custo-Benefício , Depressão/epidemiologia , Inglaterra , Epilepsia/tratamento farmacológico , Epilepsia/epidemiologia , Feminino , Humanos , Masculino , Adesão à Medicação/estatística & dados numéricos , Pessoa de Meia-Idade , Educação de Pacientes como Assunto/economia , Anos de Vida Ajustados por Qualidade de Vida , Autogestão/economia , Autogestão/psicologia , Método Simples-Cego , Estigma Social , Medicina Estatal , Estresse Psicológico/epidemiologia , Avaliação da Tecnologia Biomédica
19.
Epilepsia ; 59(5): 1048-1061, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29658989

RESUMO

OBJECTIVE: Epilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self-management. Our objective was to evaluate a group self-management education courses for people with epilepsy and drug-resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial. METHODS: We recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31-P (QOLIE-31-P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self-mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention-to-treat principle using mixed-effects regression models. RESULTS: We enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12-month follow-up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12-month follow-up, there were no statistically significant differences between trial arms in QOLIE-31-P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures. SIGNIFICANCE: This is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow-up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt-stigma and psychological distress in this group of people with drug-resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self-management-education courses.


Assuntos
Epilepsia Resistente a Medicamentos/terapia , Educação de Pacientes como Assunto/métodos , Qualidade de Vida , Autogestão/métodos , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Adulto Jovem
20.
J Crit Care ; 45: 82-89, 2018 06.
Artigo em Inglês | MEDLINE | ID: mdl-29413728

RESUMO

PURPOSE: To elicit bereaved families' experiences of organ and tissue donation. A specific objective was to determine families' perceptions of how their experiences influenced donation decision-making. METHODS: Retrospective, qualitative interviews were undertaken with 43 participants of 31 donor families to generate rich, informative data. Participant recruitment was via 10 National Health Service Trusts, representative of five regional organ donation services in the UK. Twelve families agreed to DBD, 18 agreed to DCD, 1 unknown. Participants' responses were contextualised using a temporal framework of 'The Past', which represented families' prior knowledge, experience, attitudes, beliefs, and intentions toward organ donation; 'The Present', which incorporated the moment in time when families experienced the potential for donation; and 'The Future', which corresponded to expectations and outcomes arising from the donation decision. RESULTS: Temporally interwoven experiences appeared to influence families' decisions to donate the organs of their deceased relative for transplantation. CONCLUSIONS: The influence of temporality on donation-decision making is worthy of consideration in the planning of future education, policy, practice, and research for improved rates of family consent to donation.


Assuntos
Luto , Tomada de Decisões , Família/psicologia , Relações Profissional-Família/ética , Doadores de Tecidos/ética , Obtenção de Tecidos e Órgãos/ética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Estudos Retrospectivos
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