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1.
BMJ Open ; 14(3): e081932, 2024 Mar 19.
Article in English | MEDLINE | ID: mdl-38508652

ABSTRACT

INTRODUCTION: Effective communication can help optimise healthcare interactions and patient outcomes. However, few interventions have been tested clinically, subjected to cost-effectiveness analysis or are sufficiently brief and well-described for implementation in primary care. This paper presents the protocol for determining the effectiveness and cost-effectiveness of a rigorously developed brief eLearning tool, EMPathicO, among patients with and without musculoskeletal pain. METHODS AND ANALYSIS: A cluster randomised controlled trial in general practitioner (GP) surgeries in England and Wales serving patients from diverse geographic, socioeconomic and ethnic backgrounds. GP surgeries are randomised (1:1) to receive EMPathicO e-learning immediately, or at trial end. Eligible practitioners (eg, GPs, physiotherapists and nurse practitioners) are involved in managing primary care patients with musculoskeletal pain. Patient recruitment is managed by practice staff and researchers. Target recruitment is 840 adults with and 840 without musculoskeletal pain consulting face-to-face, by telephone or video. Patients complete web-based questionnaires at preconsultation baseline, 1 week and 1, 3 and 6 months later. There are two patient-reported primary outcomes: pain intensity and patient enablement. Cost-effectiveness is considered from the National Health Service and societal perspectives. Secondary and process measures include practitioner patterns of use of EMPathicO, practitioner-reported self-efficacy and intentions, patient-reported symptom severity, quality of life, satisfaction, perceptions of practitioner empathy and optimism, treatment expectancies, anxiety, depression and continuity of care. Purposive subsamples of patients, practitioners and practice staff take part in up to two qualitative, semistructured interviews. ETHICS APPROVAL AND DISSEMINATION: Approved by the South Central Hampshire B Research Ethics Committee on 1 July 2022 and the Health Research Authority and Health and Care Research Wales on 6 July 2022 (REC reference 22/SC/0145; IRAS project ID 312208). Results will be disseminated via peer-reviewed academic publications, conference presentations and patient and practitioner outlets. If successful, EMPathicO could quickly be made available at a low cost to primary care practices across the country. TRIAL REGISTRATION NUMBER: ISRCTN18010240.


Subject(s)
Computer-Assisted Instruction , Musculoskeletal Pain , Adult , Humans , Cost-Effectiveness Analysis , Musculoskeletal Pain/therapy , Cost-Benefit Analysis , State Medicine , Quality of Life , England , Primary Health Care , Communication , Randomized Controlled Trials as Topic
2.
Lancet ; 402(10414): 1773-1785, 2023 11 11.
Article in English | MEDLINE | ID: mdl-37858323

ABSTRACT

BACKGROUND: Most patients with irritable bowel syndrome (IBS) are managed in primary care. When first-line therapies for IBS are ineffective, the UK National Institute for Health and Care Excellence guideline suggests considering low- dose tricyclic antidepressants as second-line treatment, but their effectiveness in primary care is unknown, and they are infrequently prescribed in this setting. METHODS: This randomised, double-blind, placebo-controlled trial (Amitriptyline at Low-Dose and Titrated for Irritable Bowel Syndrome as Second-Line Treatment [ATLANTIS]) was conducted at 55 general practices in England. Eligible participants were aged 18 years or older, with Rome IV IBS of any subtype, and ongoing symptoms (IBS Severity Scoring System [IBS-SSS] score ≥75 points) despite dietary changes and first-line therapies, a normal full blood count and C-reactive protein, negative coeliac serology, and no evidence of suicidal ideation. Participants were randomly assigned (1:1) to low-dose oral amitriptyline (10 mg once daily) or placebo for 6 months, with dose titration over 3 weeks (up to 30 mg once daily), according to symptoms and tolerability. Participants, their general practitioners, investigators, and the analysis team were all masked to allocation throughout the trial. The primary outcome was the IBS-SSS score at 6 months. Effectiveness analyses were according to intention-to-treat; safety analyses were on all participants who took at least one dose of the trial medication. This trial is registered with the ISRCTN Registry (ISRCTN48075063) and is closed to new participants. FINDINGS: Between Oct 18, 2019, and April 11, 2022, 463 participants (mean age 48·5 years [SD 16·1], 315 [68%] female to 148 [32%] male) were randomly allocated to receive low-dose amitriptyline (232) or placebo (231). Intention-to-treat analysis of the primary outcome showed a significant difference in favour of low-dose amitriptyline in IBS-SSS score between groups at 6 months (-27·0, 95% CI -46·9 to -7·10; p=0·0079). 46 (20%) participants discontinued low-dose amitriptyline (30 [13%] due to adverse events), and 59 (26%) discontinued placebo (20 [9%] due to adverse events) before 6 months. There were five serious adverse reactions (two in the amitriptyline group and three in the placebo group), and five serious adverse events unrelated to trial medication. INTERPRETATION: To our knowledge, this is the largest trial of a tricyclic antidepressant in IBS ever conducted. Titrated low-dose amitriptyline was superior to placebo as a second-line treatment for IBS in primary care across multiple outcomes, and was safe and well tolerated. General practitioners should offer low-dose amitriptyline to patients with IBS whose symptoms do not improve with first-line therapies, with appropriate support to guide patient-led dose titration, such as the self-titration document developed for this trial. FUNDING: National Institute for Health and Care Research Health Technology Assessment Programme (grant reference 16/162/01).


Subject(s)
Irritable Bowel Syndrome , Humans , Male , Female , Middle Aged , Irritable Bowel Syndrome/drug therapy , Amitriptyline/adverse effects , England , Double-Blind Method , Primary Health Care , Treatment Outcome
3.
BJGP Open ; 7(2)2023 Jun.
Article in English | MEDLINE | ID: mdl-36927724

ABSTRACT

BACKGROUND: Parents of children with eczema are increasingly turning to online parenting forums for advice about how to manage it. Little is known about how parents make sense of advice about eczema treatments in online forums, and how it affects their management of childhood eczema. AIM: To explore how parents of children with eczema make sense of and act on advice about eczema treatments exchanged in online parenting forums. DESIGN & SETTING: Qualitative interviews with parents of children with eczema from the UK. METHOD: Fifteen parents were recruited through online advertisements and snowball sampling. Semi-structured interviews were carried out face to face or by telephone, and analysed inductively using reflexive thematic analysis. RESULTS: When seeking advice from online parenting forums about eczema treatments, parents described appraising the credibility of advice and considering the potential suitability of treatments that were recommended in the forum. Parents proceeded to make sense of online advice through either reading advice and not engaging in online discussions, or actively engaging in online discussions to direct topics and seek most relevant advice. Parents discussed advice received online in subsequent consultations with their GP and requested prescriptions of recommended treatments. Some parents described trying new treatments without consulting their GP. CONCLUSION: Understanding how parents appraise, make sense of, and act on online advice could support healthcare professionals to disseminate advice appropriately, ask additional questions, and signpost parents to reliable online resources.

4.
Trials ; 23(1): 552, 2022 Jul 08.
Article in English | MEDLINE | ID: mdl-35804433

ABSTRACT

BACKGROUND: Irritable bowel syndrome (IBS) is a common functional bowel disorder that has a considerable impact on patient quality of life and substantial societal and health care resource costs. Current treatments are often ineffective. Tricyclic antidepressants have shown promise in secondary care populations but their effectiveness in a primary care setting remains unclear. METHODS: ATLANTIS is a randomised, multi-centre, parallel-group, two-arm, double-blind, placebo-controlled trial of low-dose amitriptyline as a second-line treatment for IBS in primary care. Participants will be invited by letter, or recruited opportunistically, from general practices in three regions of England (West Yorkshire, Wessex, and West of England) and screened for eligibility. A total of 518 adult patients with IBS, who are symptomatic despite first-line therapies, will be randomised 1:1 to amitriptyline or identical placebo for 6 months. Treatment will commence at a dose of 10 mg (or one placebo tablet) daily at night, with dose titration up to a maximum of 30 mg at night, depending on side effects and response to treatment. Participant-reported assessments will be conducted at baseline and 3, 6, and 12 months post-randomisation. The primary objective is to determine the effectiveness of amitriptyline, compared with placebo, in improving participant-reported global symptoms of IBS at 6 months (using the IBS Severity Scoring System). Secondary outcomes include relief of IBS symptoms, effect on IBS-associated somatic symptoms (Patient Health Questionnaire-12), anxiety and depression (Hospital Anxiety and Depression Scale), ability to work and participate in other activities (Work and Social Adjustment Scale), acceptability and tolerability of treatment, self-reported health care use, health-related quality of life (EQ-5D-3L), and cost-effectiveness. A nested, qualitative study will explore patient and general practitioner experiences of treatments and trial participation, including acceptability, adherence, unanticipated effects, and implications for wider use of amitriptyline for IBS in primary care. DISCUSSION: Determining the clinical and cost-effectiveness of low-dose amitriptyline as a second-line treatment for IBS in primary care will provide robust evidence to inform management decisions. TRIAL REGISTRATION: ISRCTN ISRCTN48075063 . Registered on 7th June 2019.


Subject(s)
Amitriptyline , Irritable Bowel Syndrome , Adult , Amitriptyline/administration & dosage , Amitriptyline/adverse effects , Double-Blind Method , Humans , Irritable Bowel Syndrome/drug therapy , Multicenter Studies as Topic , Primary Health Care , Quality of Life , Randomized Controlled Trials as Topic , Treatment Outcome
5.
Br J Gen Pract ; 72(719): e378-e389, 2022 06.
Article in English | MEDLINE | ID: mdl-35577586

ABSTRACT

BACKGROUND: Childhood eczema is often poorly controlled owing to underuse of emollients and topical corticosteroids (TCS). Parents/carers report practical and psychosocial barriers to managing their child's eczema, including child resistance. Online interventions could potentially support parents/carers; however, rigorous research developing such interventions has been limited. AIM: To develop an online behavioural intervention to help parents/carers manage and co-manage their child's eczema. DESIGN AND SETTING: Intervention development using a theory-, evidence-, and person-based approach (PBA) with qualitative research. METHOD: A systematic review and qualitative synthesis of studies (n = 32) and interviews with parents/carers (n = 30) were used to identify barriers and facilitators to effective eczema management, and a prototype intervention was developed. Think-aloud interviews with parents/carers (n = 25) were then used to optimise the intervention to increase its acceptability and feasibility. RESULTS: Qualitative research identified that parents/carers had concerns about using emollients and TCS, incomplete knowledge and skills around managing eczema, and reluctance to transitioning to co-managing eczema with their child. Think-aloud interviews highlighted that, while experienced parents/carers felt they knew how to manage eczema, some information about how to use treatments was still new. Techniques for addressing barriers included providing a rationale explaining how emollients and TCS work, demonstrating how to use treatments, and highlighting that the intervention provided new, up-to-date information. CONCLUSION: Parents/carers need support in effectively managing and co-managing their child's eczema. The key output of this research is Eczema Care Online for Families, an online intervention for parents/carers of children with eczema, which is being evaluated in a randomised trial.


Subject(s)
Dermatitis, Atopic , Dermatologic Agents , Eczema , Caregivers/psychology , Child , Eczema/drug therapy , Emollients/therapeutic use , Humans , Parents/psychology , Qualitative Research
6.
BMJ Open ; 12(4): e056867, 2022 04 20.
Article in English | MEDLINE | ID: mdl-35443955

ABSTRACT

OBJECTIVES: To describe the development of Eczema Care Online (ECO), an online behaviour change intervention for young people with eczema (phase I); and explore and optimise the acceptability of ECO among this target group using think-aloud interviews (phase II). METHODS: Theory-based, evidence-based and person-based approaches to intervention development were used. In phase I, a qualitative systematic review and qualitative interviews developed an in-depth understanding of the needs and challenges of young people with eczema. Guiding principles highlighted key intervention design objectives and features to address the needs of this target group to maximise user engagement. Behavioural analysis and logic modelling developed ECO's hypothesised programme theory. In phase II, qualitative think-aloud interviews were carried out with 28 young people with eczema and the intervention was optimised based on their feedback. RESULTS: The final intervention aimed to reduce eczema severity by supporting treatment use (emollients, topical corticosteroids/topical calcineurin inhibitors), management of irritants/triggers, emotional management and reducing scratching. Generally, young people expressed positive views of intervention content and design in think-aloud interviews. Quotes and stories from other young people with eczema and ECO's focus on living with eczema (not just topical treatments) were valuable for normalising eczema. Young people believed ECO addressed knowledge gaps they had from childhood and the safety information about topical corticosteroids was reassuring. Negative feedback was used to modify ECO. CONCLUSIONS: A prototype of the ECO intervention was developed using rigorous and complementary intervention development approaches. Subsequent think-aloud interviews helped optimise the intervention, demonstrated ECO is likely to be acceptable to this target group, and provided support for our guiding principles including key design objectives and features to consider when developing interventions for this population. A randomised controlled trial and process evaluation of the intervention is underway to assess effectiveness and explore user engagement with the intervention's behavioural goals.


Subject(s)
Eczema , Self-Management , Adolescent , Adrenal Cortex Hormones , Behavior Therapy , Child , Eczema/therapy , Humans
7.
Children (Basel) ; 8(2)2021 Feb 20.
Article in English | MEDLINE | ID: mdl-33672514

ABSTRACT

Eczema affects one in five children and can have a substantial impact on quality of life. This qualitative study aimed to explore children's views and experiences of eczema and what may affect treatment adherence from their perspective. We conducted semi-structured, face-to-face interviews with children with eczema aged 6-12 years from March to July 2018. Interviews were transcribed verbatim and analysed using inductive thematic analysis. We found that children do not typically view eczema as a long-term condition, and topical treatments (predominately emollients) were seen to provide effective symptom relief. Uncertainty around co-managing at home was expressed as children typically felt that parental reminders and assistance with applying different types of topical treatments were still needed. For some children, eczema can be difficult to manage at school due to a lack of convenient access and appropriate spaces to apply creams and psychosocial consequences such as attracting unwanted attention from peers and feeling self-conscious. Treatment adherence could be supported by reinforcing that eczema is a long-term episodic condition, providing clear information about regular emollient use, practical advice such as setting reminders to support co-management at home, and working with schools to facilitate topical treatment use when necessary.

8.
BMJ Open ; 10(12): e042139, 2020 12 28.
Article in English | MEDLINE | ID: mdl-33372077

ABSTRACT

OBJECTIVE: To systematically review and synthesise qualitative research exploring parents/carers' experiences of seeking online information and support for long-term physical childhood conditions. DESIGN: Systematic review and thematic synthesis of qualitative research. DATA SOURCES: Medline, CINAHL, Embase, PsycINFO and the International Bibliography of the Social Sciences were searched from inception to September 2019. We used thematic synthesis to analyse findings. ELIGIBILITY CRITERIA: Primary research papers presenting qualitative data collection and analysis, focusing on parents/carers' experiences of seeking health information and support from online resources for long-term physical childhood health conditions. No language restrictions were placed. RESULTS: 23 studies from seven countries met inclusion criteria and were included in the synthesis. Included studies presented data collected through interviews/focus groups with 559 parents/carers; free-text surveys and essays with 26 parents/carers and 2407 messages from online support groups. Parents/carers developed a variety of strategies to obtain information and support online, based on personal preferences, appraisal of trustworthiness, perceived needs and previous experiences online. Many parents sought the benefits of online information and support, which included reassurance and validation from online communities, and feeling they had greater knowledge about their children's conditions. Some concerns and perceived risks were discussed, which often stemmed from prior unsatisfactory experiences of seeking information and support online, consultations with health professionals and seeing distressing stories online. CONCLUSION: Most parents/carers were successful in obtaining information and support online. Many continued to share experiences with other parents/carers online. The need for information was particularly apparent early after diagnosis of the condition, whereas the need for peer support continued. The potential concerns and perceived risks with information and support online were especially apparent among parents/carers of children with life-limiting long-term conditions. Findings may be useful for health professionals to facilitate discussions regarding use of online resources, and researchers designing online health resources for parents/carers. PROSPERO REGISTRATION NUMBER: CRD42018096009.


Subject(s)
Caregivers , Parents , Child , Health Personnel , Humans , Qualitative Research , Surveys and Questionnaires
9.
BJGP Open ; 4(5)2020 Dec.
Article in English | MEDLINE | ID: mdl-33051222

ABSTRACT

BACKGROUND: Irritable bowel syndrome (IBS) is common and often negatively affects quality of life. Patients frequently perceive medical interventions as inadequate and seek support from other sources, including online discussion forums. AIM: To explore online discussion forum topics posted by people with IBS. DESIGN & SETTING: A qualitative study exploring three UK-based online discussion forums. METHOD: A scoping review identified UK-based discussion forums with high activity and frequent use, which did not require a password/registration to view posts (two IBS-specific and one general health forum). Internal search functions were used to identify and export relevant discussion threads relating to managing IBS. Inductive thematic analysis of exported discussions was undertaken. RESULTS: Analysis identified two main overarching themes from 122 relevant discussion threads: 1) sharing information and practical advice about lifestyle changes; and 2) receiving emotional support. The most prevalent topics were lifestyle changes, including diet, using oral preparations (for example, supplements or probiotics), and physical activity. Dietary changes were usually considered positive, and most hopeful for potentially alleviating symptoms. Emotional support was also regularly offered with expressions of empathy, kindness, and gratitude, and a sense of users feeling less alone. Some discussions raised concern around potentially inappropriate symptomatic reassurance, and negative or conflicting advice. CONCLUSION: Online forums seem, generally, to be a positive experience for those posting, but include potential risks of misinformation. Most posts focus on symptomatic relief through lifestyle change and/or emotional support. Clinicians could gain a better understanding of patients' ideas, concerns, and expectations of IBS diagnosis and management by asking about patient-acquired online forum information.

10.
Nutrients ; 12(7)2020 Jul 18.
Article in English | MEDLINE | ID: mdl-32708379

ABSTRACT

There is little information about how diet influences the health of childhood acute lymphoblastic leukemia (cALL) survivors. This study explores the associations between diet quality indices, cardiometabolic health indicators and inflammatory biomarkers among cALL survivors. Participants were part of the PETALE study (n = 241, median age: 21.7 years). Adherence to 6 dietary scores and caloric intake from ultra-processed foods were calculated. Multivariate logistirac regressions, Student t-tests and Mann-Whitney tests were performed. We found that 88% of adults and 46% of children adhered poorly to the Mediterranean diet, 36.9% had poor adherence to the World Health Organisation (WHO) recommendations and 76.3% had a diet to be improved according to the HEI-2015 score. On average, ultra-processed foods accounted for 51% of total energy intake. Low HDL-C was associated with a more inflammatory diet (E-DIITM score) and higher intake of ultra-processed foods. A greater E-DII score was associated with elevated insulin resistance (HOMA-IR), and consumption of ultra-processed foods was correlated with high triglycerides. Circulating levels of TNF-α, adiponectin and IL-6 were influenced by diet quality indices, while CRP and leptin were not. In conclusion, survivors of cALL have poor adherence to dietary recommendations, adversely affecting their cardiometabolic health.


Subject(s)
Cancer Survivors , Child Nutritional Physiological Phenomena/physiology , Diet, Healthy , Energy Intake/physiology , Fast Foods/adverse effects , Heart Disease Risk Factors , Patient Compliance , Precursor Cell Lymphoblastic Leukemia-Lymphoma , Adolescent , Adult , Cancer Survivors/psychology , Child , Diet, Mediterranean , Female , Humans , Interleukin-6/blood , Male , Precursor Cell Lymphoblastic Leukemia-Lymphoma/psychology , Prognosis , Recommended Dietary Allowances , Triglycerides/blood , Tumor Necrosis Factor-alpha/blood , Young Adult
11.
Nutrients ; 11(12)2019 Dec 05.
Article in English | MEDLINE | ID: mdl-31817482

ABSTRACT

Survivors of childhood acute lymphoblastic leukemia (cALL) are at high risk of developing dyslipidemia, including low HDL-cholesterol (HDL-C). This study aimed to examine the associations between food/nutrient intake and the levels of HDL-C in a cohort of children and young adult survivors of cALL. Eligible participants (n = 241) were survivors of cALL (49.4% boys; median age: 21.7 years old) recruited as part of the PETALE study. Nutritional data were collected using a validated food frequency questionnaire. Fasting blood was used to determine participants' lipid profile. Multivariable logistic regression models were fitted to evaluate the associations between intakes of macro- and micronutrients and food groups and plasma lipids. We found that 41.3% of cALL survivors had at least one abnormal lipid value. Specifically, 12.2% had high triglycerides, 17.4% high LDL-cholesterol, and 23.1% low HDL-C. Low HDL-C was inversely associated with high intake (third vs. first tertile) of several nutrients: proteins (OR: 0.27, 95% CI: 0.08-0.92), zinc (OR: 0.26, 95% CI: 0.08-0.84), copper (OR: 0.34, 95% CI: 0.12-0.99), selenium (OR: 0.17, 95% CI: 0.05-0.59), niacin (OR: 0.25, 95% CI: 0.08-0.84), riboflavin (OR: 0.31, 95% CI: 0.12-0.76) and vitamin B12 (OR: 0.35, 95% CI: 0.13-0.90). High meat consumption was also inversely associated (OR: 0.28, 95% CI: 0.09-0.83) with low HDL-C while fast food was positively associated (OR: 2.41, 95% CI: 1.03-5.63) with low HDL-C. The role of nutrition in the development of dyslipidemia after cancer treatment needs further investigation.


Subject(s)
Cholesterol, HDL/blood , Diet , Precursor Cell Lymphoblastic Leukemia-Lymphoma/blood , Survivors , Adolescent , Adult , Child , Dyslipidemias/epidemiology , Energy Intake , Fast Foods , Female , Humans , Male , Meat , Micronutrients/administration & dosage , Nutrients/administration & dosage , Quebec , Risk Factors , Surveys and Questionnaires , Young Adult
12.
Br J Gen Pract ; 69(681): e279-e286, 2019 Apr.
Article in English | MEDLINE | ID: mdl-30858335

ABSTRACT

BACKGROUND: Cellulitis is a painful infection of the skin and underlying tissues, commonly affecting the lower leg. Approximately one-third of people experience recurrence. Patients' ability to recover from cellulitis or prevent recurrence is likely to be influenced by their understanding of the condition. AIM: To explore patients' perceptions of cellulitis, and their information needs. DESIGN AND SETTING: Mixed-methods study comprising semi-structured, face-to-face interviews and a cross-sectional survey, recruiting through primary and secondary care, and advertising. METHOD: Adults aged ≥18 years with a history of cellulitis were invited to take part in a survey, qualitative interview, or both. RESULTS: In all, 30 interviews were conducted between August 2016 and July 2017. Qualitative data highlighted a low awareness of cellulitis before the first episode, uncertainty about when it had been diagnosed, concern/surprise at the severity of cellulitis, and a perceived insufficient information provision. People were surprised that they had never heard of cellulitis and that they had not received advice or leaflets giving self-care information. Some sought information from the internet and found this confusing.A total of 240 surveys were completed (response rate 17%). These showed that, although many participants had received information on the treatment of cellulitis (60.0%, n = 144), they often reported receiving no information about causes (60.8%, n = 146) or prevention of recurrence (73.3%, n = 176). CONCLUSION: There is a need to provide information for people with cellulitis, particularly in regard to naming their condition, the management of acute episodes, and how to reduce the risk of recurrences.


Subject(s)
Cellulitis , Disease Management , Health Knowledge, Attitudes, Practice , Needs Assessment , Secondary Prevention/methods , Adult , Cellulitis/diagnosis , Cellulitis/therapy , Cross-Sectional Studies , Female , Health Literacy/methods , Humans , Information Seeking Behavior , Male , Primary Health Care/methods , Qualitative Research , Secondary Care/methods
14.
BMJ Open ; 8(1): e018652, 2018 01 11.
Article in English | MEDLINE | ID: mdl-29330174

ABSTRACT

OBJECTIVES: Vitiligo is a relatively common autoimmune condition causing loss of skin pigment. Around 1 in 100 people in the UK develop vitiligo. It can have a significant impact on quality of life for many of those affected. How people access information and help for vitiligo may influence how they manage such impact. We aimed to explore people's views and experiences of seeking health information and help for vitiligo. DESIGN: Qualitative analysis of free-text responses to four open-ended questions in an online survey. SETTING: Online survey conducted in the UK between February and March 2016. PARTICIPANTS: A survey link was emailed to 675 members of The Vitiligo Society, a UK-based charity providing information and support for people with vitiligo. One hundred and sixty-one members responded to the survey (24%). RESULTS: Many participants wrote extensive free text, often reporting frustration with help-seeking. They perceived general practitioners (GP) as their primary source of advice but felt that GPs had low awareness of available treatments. Where GPs appeared sympathetic or signposted towards further information this was appreciated, even where people felt their GP had not seemed knowledgeable. Many felt that vitiligo was dismissed by health professionals including GPs and dermatologists as 'cosmetic', which upset those who experienced substantial impact. Participants expressed concerns about the credibility of online information on vitiligo and the need for reliable, detailed information, as well as a desire for support with managing its psychosocial impact. CONCLUSIONS: Information and help-seeking needs of people with vitiligo currently appear to be poorly met, even among members of The Vitiligo Society, who are likely to have received more information than others. People with vitiligo would welcome greater health professional awareness of available vitiligo treatments. Acknowledging the psychosocial impacts of vitiligo and signposting towards credible information are also welcomed.


Subject(s)
Health Literacy , Information Seeking Behavior , Patient Acceptance of Health Care , Vitiligo/therapy , Adolescent , Adult , Aged , Child , Child, Preschool , Female , General Practitioners/organization & administration , Health Knowledge, Attitudes, Practice , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research , Societies, Medical , Surveys and Questionnaires , Young Adult
15.
Am J Kidney Dis ; 70(5): 656-665, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28764920

ABSTRACT

BACKGROUND: Chronic kidney disease (CKD) is often asymptomatic at first diagnosis, and awareness of CKD is low in the general population. Thus, individuals who are unexpectedly identified as having CKD may struggle to adjust to living with this diagnosis. This study aims to synthesize qualitative research exploring patients' views and experiences of a CKD diagnosis and how they adjust to it. STUDY DESIGN: Systematic review and meta-ethnography. SETTING & POPULATION: Adult patients with CKD stages 1 to 5. SEARCH STRATEGY & SOURCES: MEDLINE, PsycINFO, CINAHL, Embase, and Web of Science were searched from the earliest date available to November 2015. Qualitative studies were selected that explored patients' views and experiences of a CKD diagnosis and their adjustment. ANALYTICAL APPROACH: Meta-ethnography was adopted to synthesize the findings. RESULTS: 10 studies involving 596 patients with CKD from secondary-care settings were included. 7 key themes were identified: a challenging diagnosis, diverse beliefs about causation, anticipated concerns about progression, delaying disease progression, unmet informational needs, psychosocial impact of CKD, and adjustment to life with CKD. LIMITATIONS: Limited to views and experiences of participants in included studies, which were mostly conducted in high-income countries. Studies not written in English were excluded. Transferability of findings to other populations may be limited. CONCLUSIONS: This review highlights variation in patients' understanding of CKD, an overall lack of information on the trajectory of CKD, and a need for psychosocial support, especially in later stages, to help patients adjust to living with CKD. Future research that acknowledges CKD as a condition with diverse complicating morbidities and explores how patients' information and psychosocial needs vary according to severity and comorbid conditions would be beneficial. This will support delivery of easily understandable, timely, and targeted information about CKD, as well as practical advice about recommended lifestyle changes.


Subject(s)
Adaptation, Psychological , Health Knowledge, Attitudes, Practice , Patient Education as Topic , Renal Insufficiency, Chronic/psychology , Social Support , Anthropology, Cultural , Disease Progression , Humans , Needs Assessment , Qualitative Research , Renal Insufficiency, Chronic/diagnosis , Severity of Illness Index
16.
BMC Public Health ; 14: 589, 2014 Jun 11.
Article in English | MEDLINE | ID: mdl-24920395

ABSTRACT

BACKGROUND: Non-pharmaceutical public health interventions may provide simple, low-cost, effective ways of minimising the transmission and impact of acute respiratory infections in pandemic and non-pandemic contexts. Understanding what influences the uptake of non-pharmaceutical interventions such as hand and respiratory hygiene, mask wearing and social distancing could help to inform the development of effective public health advice messages. The aim of this synthesis was to explore public perceptions of non-pharmaceutical interventions that aim to reduce the transmission of acute respiratory infections. METHODS: Five online databases (MEDLINE, PsycINFO, CINAHL, EMBASE and Web of Science) were systematically searched. Reference lists of articles were also examined. We selected papers that used a qualitative research design to explore perceptions and beliefs about non-pharmaceutical interventions to reduce transmission of acute respiratory infections. We excluded papers that only explored how health professionals or children viewed non-pharmaceutical respiratory infection control. Three authors performed data extraction and assessment of study quality. Thematic analysis and components of meta-ethnography were adopted to synthesise findings. RESULTS: Seventeen articles from 16 studies in 9 countries were identified and reviewed. Seven key themes were identified: perceived benefits of non-pharmaceutical interventions, perceived disadvantages of non-pharmaceutical interventions, personal and cultural beliefs about infection transmission, diagnostic uncertainty in emerging respiratory infections, perceived vulnerability to infection, anxiety about emerging respiratory infections and communications about emerging respiratory infections. The synthesis showed that some aspects of non-pharmaceutical respiratory infection control (particularly hand and respiratory hygiene) were viewed as familiar and socially responsible actions to take. There was ambivalence about adopting isolation and personal distancing behaviours in some contexts due to their perceived adverse impact and potential to attract social stigma. Common perceived barriers included beliefs about infection transmission, personal vulnerability to respiratory infection and concerns about self-diagnosis in emerging respiratory infections. CONCLUSIONS: People actively evaluate non-pharmaceutical interventions in terms of their perceived necessity, efficacy, acceptability, and feasibility. To enhance uptake, it will be necessary to address key barriers, such as beliefs about infection transmission, rejection of personal risk of infection and concern about the potential costs and stigma associated with some interventions.


Subject(s)
Health Knowledge, Attitudes, Practice , Influenza, Human/prevention & control , Nonprescription Drugs , Respiratory Tract Infections/prevention & control , Humans , Randomized Controlled Trials as Topic
17.
Prim Care Respir J ; 22(4): 449-53, 2013 Dec.
Article in English | MEDLINE | ID: mdl-24227105

ABSTRACT

BACKGROUND: Poor symptom control is common in asthma. Breathing training exercises may be an effective adjunct to medication; it is therefore important to understand facilitators and barriers to uptake of breathing training exercises. AIMS: To gain insight into patients' perceptions of breathing training exercises designed to help control asthma symptoms. METHODS: Semi-structured think-aloud interviews were conducted with 29 people with asthma about their views of a booklet on breathing training exercises. RESULTS: Thematic analysis showed breathing training exercises were seen as acceptable in principle because they were viewed as nonpharmacological, holistic, unobtrusive, and likely to increase patient confidence in managing symptoms. Anticipated disadvantages included the time required and perceived irrelevance for those with well-controlled asthma. These views were influenced by prior experience of changing breathing, wanting to self-manage asthma, negative views of medication, and perceived asthma control/severity. Anticipated barriers to carrying out the exercises included difficulties with nose breathing, remembering to do them, and persevering with them. Anticipated facilitators included monitoring tools and social support. CONCLUSIONS: The idea of breathing training was viewed positively as an acceptable non-pharmacological treatment that patients can do discreetly to help them breathe more easily and reduce their reliance on medication. Uptake of breathing training may be greater among those who perceive their asthma as severe and/or have negative views of medication. To enhance uptake, it might be helpful to present breathing training exercises as holistic skills that can also benefit those with mild symptoms.


Subject(s)
Asthma/therapy , Attitude to Health , Breathing Exercises/psychology , Patient Acceptance of Health Care , Adolescent , Adult , Aged , Asthma/psychology , Female , Humans , Male , Middle Aged , Qualitative Research , United Kingdom , Young Adult
18.
Br J Health Psychol ; 17(1): 44-59, 2012 Feb.
Article in English | MEDLINE | ID: mdl-22233104

ABSTRACT

OBJECTIVES: Behavioural responses to influenza pandemics can significantly influence the impact on public health. Protection motivation theory (PMT) provides a framework for understanding how people respond to health threats such as pandemics. The main aim of this study was to model the relative contribution of the components of PMT (threat and coping appraisal) to intentions to perform two behaviours recommended by the UK government in a pandemic: stay at home when ill and keep going to work when well. DESIGN: A 2×2 factorial design was used to test the effect of scenarios describing pandemic severity (low vs. high threat) and advice messages (standard government advice vs. theory-based advice) on measures of threat and coping appraisal, and intentions to carry out the two recommended behaviours. METHODS: A web-based survey designed to assess threat appraisal, coping appraisal, and behavioural intentions was completed by 883 adults (December 2009-January 2010) drawn from University College London staff and the local community. Structural equation modelling was used to test the PMT framework. RESULTS: Perceived pandemic severity influenced threat and coping appraisals and intentions. Structural equation modelling revealed that coping appraisal (i.e., perceptions of the costs, benefits, and feasibility of the recommended behaviours) was the principal predictor of variability in intentions for both behaviours and for both pandemic scenarios. CONCLUSIONS: Coping appraisals appear to be an important, and hitherto underresearched, predictor of how people may behave in pandemics, and our findings provide encouraging preliminary evidence that it may be possible to change these perceptions.


Subject(s)
Adaptation, Psychological , Health Behavior , Influenza A Virus, H1N1 Subtype , Influenza, Human/psychology , Pandemics , Adolescent , Adult , Female , Health Surveys , Humans , Influenza, Human/epidemiology , Influenza, Human/virology , London , Male , Middle Aged , Young Adult
19.
Patient Educ Couns ; 85(3): 413-8, 2011 Dec.
Article in English | MEDLINE | ID: mdl-21295434

ABSTRACT

OBJECTIVE: To explore people's beliefs, perceptions, reasoning, and emotional and contextual factors that may influence responses to government recommendations for managing flu pandemics. METHODS: Eleven focus groups were conducted with a purposive sample of 48 participants. Participants were invited to discuss their perceptions of the H1N1 pandemic and government advice on recommended actions for managing the H1N1 pandemic. RESULTS: Thematic analysis showed that participants were skeptical about the feasibility and appropriateness of government recommendations for managing the H1N1 pandemic. They expressed doubts about self-diagnosis and concerns regarding the perceived effectiveness and costs of recommendations to stay home if unwell and get vaccinated. CONCLUSIONS: Government advice is a specialized form of health communication with members of the public. People engage in an active process of evaluating government advice in terms of its credibility, feasibility and costs. To improve future pandemic preparedness, attempts should be made to elicit and address common doubts and concerns people have about following recommended advice. PRACTICAL IMPLICATIONS: This study provides preliminary information on potential concerns and issues that could be addressed in future pandemic communications. Further research is needed to elicit and address the public perspective so that the impact of future pandemics may be reduced.


Subject(s)
Attitude to Health , Health Communication , Influenza A Virus, H1N1 Subtype , Influenza, Human/prevention & control , Pandemics/prevention & control , Adolescent , Adult , Comprehension , Female , Focus Groups , Government Agencies , Humans , Influenza, Human/epidemiology , Influenza, Human/psychology , Male , Middle Aged , Perception , Public Health , Public Opinion , Qualitative Research , Trust , United Kingdom/epidemiology , Young Adult
20.
Eur J Oncol Nurs ; 12(3): 244-52, 2008 Jul.
Article in English | MEDLINE | ID: mdl-18467173

ABSTRACT

There is little research exploring nurses' experiences of, and attitudes towards, the chemotherapy administration process. There is also limited work investigating practitioners' educational preparation for this aspect of cancer nursing. The aim of this study was to describe nurses' experiences, attitudes and educational preparation for the chemotherapy administration process. A postal survey was conducted across 26 London hospitals providing cancer services. A survey questionnaire was sent to all 526 nurses who administered chemotherapy in these hospitals, of whom 257 replied (response rate 49%). Nearly all nurses (n=244, 95%) reported being frightened, scared and anxious when initially working with chemotherapy. Of these 221(86%) stated they became more confident with experience, when supported by knowledgeable role models and following chemotherapy education. Over 80% (n=206) of the sample had received some form of education, whilst 241 nurses (94%) thought they could benefit from more. Nurses reported they were often or always worried about extravasation (n=113, 44%), anaphylactic reactions (n=95, 37%), and other nurses' education and knowledge deficits (n=118, 46%). Overall, nurses' attitudes towards chemotherapy were neither negative nor positive. Findings highlight the value of formal educational preparation in chemotherapy prior to undertaking this aspect of nursing. Positive role models for novice practitioners would appear important and role models themselves require continued professional development. Wide variations in educational preparation and practice exist and a co-ordinated education and training strategy for chemotherapy practice is warranted to underpin safe and effective practice in this area.


Subject(s)
Antineoplastic Agents/therapeutic use , Attitude of Health Personnel , Nurse's Role/psychology , Nursing Staff, Hospital , Oncology Nursing/education , Adult , Antineoplastic Agents/adverse effects , Anxiety/etiology , Anxiety/psychology , Clinical Competence , Education, Nursing, Continuing , Fear , Health Knowledge, Attitudes, Practice , Humans , Inservice Training , Job Satisfaction , London , Mentors/psychology , Needs Assessment , Neoplasms/drug therapy , Neoplasms/nursing , Nursing Methodology Research , Nursing Staff, Hospital/education , Nursing Staff, Hospital/psychology , Safety Management , Self Efficacy , Social Support , Surveys and Questionnaires
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