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PURPOSE: To visualize contraceptive choice pathways among adolescent and young adults (AYA) designated female at birth (DFAB) as a means of exploring the relationships between current contraceptive use, desired contraceptive, and ultimately, chosen contraceptive method. METHODS: A retrospective cross-sectional study was conducted of AYA DFAB (N = 2369), aged 14-24 years, presenting for initial visit at a contraceptive clinic with standardized efficacy-based counseling. Sankey diagrams were utilized to visualize patient flow through the contraceptive decision-making process. Outcomes of interest were current contraceptive method, desired contraceptive prior to contraceptive counseling, and then chosen contraception. Chi-Square tests were conducted to quantify the strength of the relationships identified by the Sankey diagrams. RESULTS: Sankey diagrams demonstrated a fair amount of change from current contraceptive to desired contraceptive and from current contraceptive to chosen contraceptive. A stronger relationship was evident between desired contraceptive method and chosen method; most patients did not change their desired contraceptive after receiving counseling except AYA who were undecided about their desired contraceptive who flowed variably into all available methods. Chi-Square test assessing the association between desired and chosen contraceptive method was significant at P-value < .001, validating the patterns identified with the Sankey diagrams. DISCUSSION: We identified distinct contraceptive decision-making pathways among AYA which could inform the framework for a more tailored counseling approach. These findings are aligned with national medical organizations' recommendations for provision of non-coercive, patient-centered contraceptive counseling to promote adolescent reproductive autonomy.
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INTRODUCTION: Biological disease-modifying antirheumatic drugs (bDMARDs) have revolutionised the treatment of inflammatory arthritis (IA). However, many people with IA still require planned orthopaedic surgery to reduce pain and improve function. Currently, bDMARDs are withheld during the perioperative period due to potential infection risk. However, this predisposes patients to IA flares and loss of disease control. The question of whether to stop or continue bDMARDs in the perioperative period has not been adequately addressed in a randomised controlled trial (RCT). METHODS AND ANALYSIS: PERISCOPE is a multicentre, superiority, pragmatic RCT investigating the stoppage or continuation of bDMARDs. Participants will be assigned 1:1 to either stop or continue their bDMARDs during the perioperative period. We aim to recruit 394 adult participants with IA. Potential participants will be identified in secondary care hospitals in the UK, screened by a delegated clinician. If eligible and consenting, baseline data will be collected and randomisation completed. The primary outcome will be the self-reported PROMIS-29 (Patient Reported Outcome Measurement Information System) over the first 12 weeks postsurgery. Secondary outcome measures are as follows: PROMIS - Health Assessment Questionnaire (PROMIS-HAQ), EQ-5D-5L, Disease activity: generic global Numeric Rating Scale (patient and clinician), Self-Administered Patient Satisfaction scale, Health care resource use and costs, Medication use, Surgical site infection, delayed wound healing, Adverse events (including systemic infections) and disease-specific outcomes (according to IA diagnosis). The costs associated with stopping and continuing bDMARDs will be assessed. A qualitative study will explore the patients' and clinicians' acceptability and experience of continuation/stoppage of bDMARDs in the perioperative period and the impact postoperatively. ETHICS AND DISSEMINATION: Ethical approval for this study was received from the West of Scotland Research Ethics Committee on 25 April 2023 (REC Ref: 23/WS/0049). The findings from PERISCOPE will be submitted to peer-reviewed journals and feed directly into practice guidelines for the use of bDMARDs in the perioperative period. TRIAL REGISTRATION NUMBER: ISRCTN17691638.
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Antirreumáticos , Procedimientos Ortopédicos , Ensayos Clínicos Pragmáticos como Asunto , Humanos , Reino Unido , Antirreumáticos/uso terapéutico , Antirreumáticos/economía , Atención Perioperativa/métodos , Atención Perioperativa/economía , Investigación Cualitativa , Estudios Multicéntricos como Asunto , Proyectos Piloto , Análisis Costo-Beneficio , Productos Biológicos/uso terapéutico , Productos Biológicos/economíaRESUMEN
OBJECTIVES: Poor psychological well-being among healthcare workers can have numerous negative impacts, but evidence about levels of burnout in children's hospice care staff is limited. This study aimed to determine the prevalence of burnout and to explore the association between staff characteristics and support mechanisms with burnout among children's hospice care staff in the UK. METHODS: Two national online surveys collecting data on hospice care staff psychological well-being and hospice organisational characteristics. All children's hospices in the UK were invited.Thirty-one hospices (out of 52) responded to the hospice survey and 583 staff responded to the staff survey. Data collection took place between May and December 2020 and measures included the Copenhagen Burnout Inventory, Work Engagement and the Health and Safety Executive Management Standards Indicator Tool. RESULTS: Burnout prevalence was 11% and mean burnout score was 32.5 (SD: 13.1). Burnout levels were independent of working arrangements (eg, working from home or at the hospice) during the COVID-19 pandemic. Hospices performed well in most management standards, but poorly on the 'Control' domain. The average Work Engagement score for staff was 7.5 (SD: 1.5). CONCLUSIONS: Burnout levels for staff in children's hospices in the UK were lower than in other healthcare settings, with this comparing to 17.3% among palliative care staff generally. Overall, hospices performed well in management standards and there was no indication of urgent action needed. Work Engagement in our sample was higher compared with other National Health Service workers during the COVID-19 pandemic.
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Agotamiento Profesional , COVID-19 , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Niño , Humanos , Pandemias , Medicina Estatal , Cuidados Paliativos/psicología , Encuestas y Cuestionarios , Agotamiento Profesional/epidemiología , Agotamiento Profesional/psicología , COVID-19/epidemiología , Reino Unido/epidemiologíaRESUMEN
BACKGROUND: Poor psychological well-being among healthcare staff has implications for staff sickness and absence rates, and impacts on the quality, cost and safety of patient care. Although numerous studies have explored the well-being of hospice staff, study findings vary and the evidence has not yet been reviewed and synthesised. Using job demands-resources (JD-R) theory, this review aimed to investigate what factors are associated with the well-being of hospice staff. METHODS: We searched MEDLINE, CINAHL and PsycINFO for peer-reviewed quantitative, qualitative or mixed-methods studies focused on understanding what contributes to the well-being of hospice staff who provide care to patients (adults and children). The date of the last search was 11 March 2022. Studies were published from 2000 onwards in the English language and conducted in Organisation for Economic Co-operation and Development countries. Study quality was assessed using the Mixed Methods Appraisal Tool. Data synthesis was conducted using a result-based convergent design, which involved an iterative, thematic approach of collating data into distinct factors and mapping these to the JD-R theory. RESULTS: A total of 4016 unique records were screened by title and abstract, 115 full-text articles were retrieved and reviewed and 27 articles describing 23 studies were included in the review. The majority of the evidence came from studies of staff working with adult patients. Twenty-seven individual factors were identified in the included studies. There is a strong and moderate evidence that 21 of the 27 identified factors can influence hospice staff well-being. These 21 factors can be grouped into three categories: (1) those that are specific to the hospice environment and role, such as the complexity and diversity of the hospice role; (2) those that have been found to be associated with well-being in other similar settings, such as relationships with patients and their families; and (3) those that affect workers regardless of their role and work environment, that is, that are not unique to working in a healthcare role, such as workload and working relationships. There was strong evidence that neither staff demographic characteristics nor education level can influence well-being. DISCUSSION: The factors identified in this review highlight the importance of assessing both positive and negative domains of experience to determine coping interventions. Hospice organisations should aim to offer a wide range of interventions to ensure their staff have access to something that works for them. These should involve continuing or commencing initiatives to protect the factors that make hospices good environments in which to work, as well as recognising that hospice staff are also subject to many of the same factors that affect psychological well-being in all work environments. Only two studies included in the review were set in children's hospices, suggesting that more research is needed in these settings. PROSPERO REGISTRATION NUMBER: CRD42019136721 (Deviations from the protocol are noted in Table 8, Supplementary material).
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Técnicos Medios en Salud , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Bienestar Psicológico , Investigación Cualitativa , Técnicos Medios en Salud/psicologíaRESUMEN
AIM: To assess the risks, benefits, and resource implications of home-blended food for children with gastrostomy tubes compared with a formula diet. METHOD: This prospective cohort study of children (aged 0-18 years) collected baseline data on gastrointestinal symptoms, nutritional intake, anthropometric outcomes, parent and child quality of life, and resource use. A propensity score-weighted generalized linear mixed model was used to compare children receiving a home-blended versus formula diet. RESULTS: Baseline data were obtained for 180 children (2019-2021; 107 males, 73 females; mean age 9 years 7 months [SD 4 years 5 months]). Children receiving a home-blended diet (n = 104) had similar diagnoses and age but more lived in areas of lower deprivation and parental education was higher compared to the parents of children receiving a formula diet (n = 76). Children receiving home-blended diets had significantly better gastrointestinal scores than those receiving formula diets (B = 13.8, p < 0.001). The number of gut infections and tube blockages were similar between the two groups but with fewer stoma site infections in the group receiving home-blended food. Children receiving a home-blended diet had more fibre in their diet compared to children receiving a formula diet. INTERPRETATION: Home-blended diets should be seen as a safe option for children who are gastrostomy-fed unless clinically contraindicated. Equality of access to home-blended diets for children with gastrostomy should be assessed by local clinical teams.
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INTRODUCTION: Over 50% of older adults are prescribed a medicine where the risk of harm outweighs the chances of benefit. During a hospital admission, older adults and carers expect medicines to be reviewed for appropriateness and any inappropriate medicines proactively deprescribed. While the principle of proactive deprescribing is an expectation of good prescribing practice, it is yet to become routine. The CompreHensive geriAtRician-led MEdication Review (CHARMER) study aims to develop and test a five-component behaviour change intervention to equip geriatricians and pharmacists to proactively deprescribe inappropriate medicines with older adults in hospital. This study aims to test the feasibility and acceptability of study processes and CHARMER implementation. METHODS AND ANALYSIS: A two-arm purposive allocation feasibility study is being undertaken at four acute hospitals in England, UK (three intervention and one control). The target sample is 400 patients across all hospitals. Primary outcome measures are: (1) participant recruitment rate and (2) participant attrition rate. Secondary outcome measures are: (1) hospital readmission rate; (2) mortality rate and (3) quality of life. Quantitative data will be checked for completeness and quality, and practitioner and patient demographics descriptively analysed. We will undertake a rapid qualitative analysis on observations, interviews and study meeting minutes data. A subsequent thematic analysis will be undertaken with codes mapped to the Theoretical Domains Framework and Normalisation Process Theory. Triangulation of qualitative and quantitative data will be undertaken. ETHICS AND DISSEMINATION: Ethics approval was obtained from Wales Research Ethics Committee 1 (IRAS ID 312494) and study approval from the Health Research Authority (22/WA/0087). Informed consent will be sought from all hospital staff involved in data collection activities and for patients involved in enhanced data collection activities. The findings of this study will be disseminated in peer-reviewed journals and conference presentations. TRIAL REGISTRATION: ISRCTN11899506.
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Deprescripciones , Humanos , Anciano , Estudios de Factibilidad , Geriatras , Calidad de Vida , Revisión de Medicamentos , HospitalesRESUMEN
BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.
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Delirio , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Cuidados Paliativos/psicología , Investigación Cualitativa , Voluntarios , Delirio/terapiaRESUMEN
BACKGROUND: Type 2 diabetes is 2 to 3 times more common among people with severe mental illness (SMI). Self-management is crucial, with additional challenges faced by people with SMI. Therefore, it is essential that any diabetes self-management program for people with SMI addresses the unique needs of people living with both conditions and the inequalities they experience within health care services. OBJECTIVE: We combined theory, empirical evidence, and co-design approaches to develop a type 2 diabetes self-management intervention for people with SMI. METHODS: The development process encompassed 4 steps: step 1 involved prioritizing the mechanisms of action (MoAs) and behavior change techniques (BCTs) for the intervention. Using findings from primary qualitative research and systematic reviews, we selected candidate MoAs to target in the intervention and candidate BCTs to use. Expert stakeholders then ranked these MoAs and BCTs using a 2-phase survey. The average scores were used to generate a prioritized list of MoAs and BCTs. During step 2, we presented the survey results to an expert consensus workshop to seek expert agreement with the definitive list of MoAs and BCTs for the intervention and identify potential modes of delivery. Step 3 involved the development of trigger films using the evidence from steps 1 and 2. We used animations to present the experiences of people with SMI managing diabetes. These films were used in step 4, where we used a stakeholder co-design approach. This involved a series of structured workshops, where the co-design activities were informed by theory and evidence. RESULTS: Upon the completion of the 4-step process, we developed the DIAMONDS (diabetes and mental illness, improving outcomes and self-management) intervention. It is a tailored self-management intervention based on the synthesis of the outputs from the co-design process. The intervention incorporates a digital app, a paper-based workbook, and one-to-one coaching designed to meet the needs of people with SMI and coexisting type 2 diabetes. CONCLUSIONS: The intervention development work was underpinned by the MoA theoretical framework and incorporated systematic reviews, primary qualitative research, expert stakeholder surveys, and evidence generated during co-design workshops. The intervention will now be tested for feasibility before undergoing a definitive evaluation in a pragmatic randomized controlled trial.
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Diabetes Mellitus Tipo 2 , Trastornos Mentales , Automanejo , Humanos , Diabetes Mellitus Tipo 2/terapia , Diabetes Mellitus Tipo 2/complicaciones , Trastornos Mentales/terapia , Terapia Conductista/métodos , Conductas Relacionadas con la SaludRESUMEN
BACKGROUND: Children with a life-limiting condition often require extensive and complex care, much of which is provided by their parents at home. There is a growing body of research that aims to understand the experiences of these parents, but the majority of this research is from mothers' perspectives, meaning that fathers' experiences are not well understood. OBJECTIVES: To identify and synthesise findings from existing qualitative studies that have explored the experiences of fathers of children with a life-limiting condition. METHODS: A systematic review of qualitative research was conducted using thematic synthesis. Searches were conducted in MEDLINE, CINAHL, EMBASE, PsycINFO and Social Science Citation Index. RESULTS: Findings from 30 studies were included, representing the experiences of 576 fathers of children with a range of diagnoses including cancer, cystic fibrosis, genetic and neurological conditions. Themes detailed fathers' experiences of uncertainty and shock around the time of their child's diagnosis, their accounts of a 'new normal', difficulties in discussing their emotions, forming relationships with and seeking support from professionals and working fathers' role conflicts. They discussed the life-changing nature of their child's diagnosis, an event that affected all aspects of their lives from everyday activities, to their relationships, spirituality, values and ambitions. CONCLUSIONS: Fathers experience many difficulties in response to their child's diagnosis and ongoing treatment. Findings highlight the need for healthcare professionals to recognise individual family dynamics and the evolving role of the father. Fathers' responses are not widely understood, and research that directly addresses their own well-being is warranted.
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Padre , Neoplasias , Masculino , Femenino , Humanos , Niño , Padre/psicología , Padres/psicología , Madres/psicología , Emociones , Investigación CualitativaRESUMEN
CONTEXT: Polypharmacy is often appropriate for children with life-limiting conditions but is associated with an increase in hospitalizations and inappropriate prescribing, and can affect the quality of life of children and their families as they manage complex medication schedules. Despite this, little is known about polypharmacy in this population. OBJECTIVE: To describe the prevalence and patterns of polypharmacy in children with a life-limiting condition in a nationally representative cohort in England. METHODS: Observational study of children (age 0-19 years) with a life-limiting condition in a national database from 2000 to 2015. Common definitions of polypharmacy were used to determine polypharmacy prevalence in each year based on unique medications and regular medications. Hierarchical regression analyses were used to explore factors associated with polypharmacy. RESULTS: Data on 15,829 individuals were included. Each year 27%-39% of children were prescribed ≥5 unique medications and 8%-12% were prescribed ≥10. Children with a respiratory (OR 7.6, 95%CI 6.4-9.0), neurological (OR 2.8, 95%CI 2.4-3.2), or metabolic (OR 2.2, 95%CI 1.7-2.8) condition were more likely than those with a congenital condition to experience polypharmacy. Increasing age, being diagnosed with a LLC under one year of age, having >1 life-limiting or chronic condition or living in areas of higher deprivation were also associated with higher prevalence of polypharmacy. CONCLUSION: Children with life-limiting conditions have a high prevalence of polypharmacy and some children are at greater risk than others. More research is needed to understand and address the factors that lead to problematic polypharmacy in this population.
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Polifarmacia , Calidad de Vida , Adolescente , Adulto , Niño , Preescolar , Estudios Transversales , Inglaterra/epidemiología , Humanos , Prescripción Inadecuada , Lactante , Recién Nacido , Prevalencia , Adulto JovenRESUMEN
INTRODUCTION: A large and growing number of patients with cancer have comorbid diabetes. Cancer and its treatment can adversely impact glycaemic management and control, and there is accumulating evidence that suboptimal glycaemic control during cancer treatment is a contributory driver of worse cancer-related outcomes in patients with comorbid diabetes. Little research has sought to understand, from the perspective of patients and clinicians, how and why different aspects of cancer care and diabetes care can complicate or facilitate each other, which is key to informing interventions to improve diabetes management during cancer treatments. This study aims to identify and elucidate barriers and enablers to effective diabetes management and control during cancer treatments, and potential intervention targets and strategies to address and harness these, respectively. METHODS AND ANALYSIS: Qualitative interviews will be conducted with people with diabetes and comorbid cancer (n=30-40) and a range of clinicians (n=30-40) involved in caring for this patient group (eg, oncologists, diabetologists, specialist nurses, general practitioners). Semistructured interviews will examine participants' experiences of and perspectives on diabetes management and control during cancer treatments. Data will be analysed using framework analysis. Data collection and analysis will be informed by the Theoretical Domains Framework, and related Theory and Techniques Tool and Behaviour Change Wheel, to facilitate examination of a comprehensive range of barriers and enablers and support identification of pertinent and feasible intervention approaches. Study dates: January 2021-January 2023. ETHICS AND DISSEMINATION: The study has approval from National Health Service (NHS) West Midlands-Edgbaston Research Ethics Committee. Findings will be presented to lay, clinical, academic and NHS and charity service-provider audiences via dissemination of written summaries and presentations, and published in peer-reviewed journals. Findings will be used to inform development and implementation of clinical, health services and patient-management intervention strategies to optimise diabetes management and control during cancer treatments.
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Diabetes Mellitus , Neoplasias , Atención a la Salud , Diabetes Mellitus/terapia , Humanos , Neoplasias/complicaciones , Neoplasias/terapia , Investigación Cualitativa , Medicina EstatalRESUMEN
Behavioural interventions can support the adoption of healthier lifestyles and improve physical health outcomes, but it is unclear what factors might drive success of such interventions in people with serious mental illness (SMI). We systematically identified and reviewed evidence of the association between determinants of physical health self-management behaviours in adults with SMI. Data about American Association of Diabetes Educator's Self-Care Behaviours (AADE-7) were mapped against the novel Mechanisms of Action (MoA) framework. Twenty-eight studies were included in the review, reporting evidence on 104 determinant-behaviour links. Beliefs about capabilities and beliefs about consequences were the most important determinants of behaviour, especially for being physically active and healthy eating. There was some evidence that emotion and environmental context and resources played a role in determining reducing risks, being active, and taking medications. We found very limited evidence associated with problem solving, and no study assessed links between MoAs and healthy coping. Although the review predominantly identified evidence about associations from cross-sectional studies that lacked validated and objective measures of self-management behaviours, these findings can facilitate the identification of behaviour change techniques with hypothesised links to determinants to support self-management in people with SMI. Systematic Review Registration: PROSPERO, registration CRD42018099553.
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AIM: To identify child and parent outcomes relevant to having a gastrostomy, and to specify outcomes believed to be particularly salient to type of diet (formula vs blended food). METHOD: Twenty parents, two children (both 12y), and 41 professionals (dietitians [n=10]; nurses [n=12]; paediatricians [n=12]; speech and language therapists [n=7)]) were recruited. Parents and children were interviewed; professionals participated in focus groups. Children (2-18y) represented included those on formula (n=11), blended-food (n=7), and mixed (n=2) diets. All had been tube-fed for at least 6 months. Neurological, genetic, and metabolic conditions were represented. RESULTS: Participants identified a range of children's outcomes relevant to a gastrostomy, including physical health, gastrointestinal symptoms, sleep, and time spent feeding. The children described experiences of exclusion caused by being tube-fed. Time, sleep, and emotional health were regarded as most salient to understanding parents' gastrostomy outcomes. Participants believed type of diet would most likely effect gastrointestinal symptoms, time spent feeding, sleep, and physical health. INTERPRETATION: Findings indicate a number of refinements to, and allow further specification of, the current 'initial' core outcome set for tube-fed children. Findings also have implications for choice of outcomes measures. Further qualitative research with children and young people is needed. What this paper adds Sleep is a key outcome for children and parents. Gastrointestinal symptoms and physical health were regarded as outcomes most likely to be affected by type of diet. Well-being and participation were identified as key distal outcomes. Gastrostomies are complex interventions. Further specification of the core outcome set is possible.
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Dieta/métodos , Nutrición Enteral/psicología , Gastrostomía/psicología , Padres/psicología , Investigación Cualitativa , Adolescente , Niño , Preescolar , Dieta/efectos adversos , Dieta/psicología , Nutrición Enteral/instrumentación , Femenino , Alimentos , Personal de Salud , Humanos , Masculino , Calidad de VidaRESUMEN
AIMS: Diabetes is two to three times more prevalent in people with severe mental illness, yet little is known about the challenges of managing both conditions from the perspectives of people living with the co-morbidity, their family members or healthcare staff. Our aim was to understand these challenges and to explore the circumstances that influence access to and receipt of diabetes care for people with severe mental illness. METHODS: Framework analysis of qualitative semi-structured interviews with people with severe mental illness and diabetes, family members, and staff from UK primary care, mental health and diabetes services, selected using a maximum variation sampling strategy between April and December 2018. RESULTS: In all, 39 adults with severe mental illness and diabetes (3 with type 1 diabetes and 36 with type 2 diabetes), nine family members and 30 healthcare staff participated. Five themes were identified: (a) Severe mental illness governs everyday life including diabetes management; (b) mood influences capacity and motivation for diabetes self-management; (c) cumulative burden of managing multiple physical conditions; (d) interacting conditions and overlapping symptoms and (e) support for everyday challenges. People living with the co-morbidity and their family members emphasised the importance of receiving support for the everyday challenges that impact diabetes management, and identified barriers to accessing this from healthcare providers. CONCLUSIONS: More intensive support for diabetes management is needed when people's severe mental illness (including symptoms of depression) or physical health deteriorates. Interventions that help people, including healthcare staff, distinguish between symptoms of diabetes and severe mental illness are also needed.
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Diabetes Mellitus , Trastornos Mentales/complicaciones , Adulto , Anciano , Actitud Frente a la Salud , Manejo de la Enfermedad , Familia , Femenino , Personal de Salud , Humanos , Entrevistas como Asunto , Masculino , Persona de Mediana Edad , AutomanejoRESUMEN
BACKGROUND: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. AIM: To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts. DESIGN: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). DATA SOURCES: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000-2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. RESULTS: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. CONCLUSIONS: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met.
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Delirio , Enfermería de Cuidados Paliativos al Final de la Vida , Humanos , Cuidados Paliativos , Investigación CualitativaRESUMEN
BACKGROUND: People with severe mental illnesses (SMIs) have reduced life expectancy compared with the general population. Diabetes is a contributor to this disparity, with higher prevalence and poorer outcomes in people with SMI. AIM: To determine the impact of SMI on healthcare processes and outcomes for people with type 2 diabetes (T2DM). DESIGN AND SETTING: Retrospective, observational, matched, nested, case-control study conducted in England using patient records from the Clinical Practice Research Datalink, linked to Hospital Episode Statistics. METHOD: A range of healthcare processes (primary care consultations, physical health checks, and metabolic measurements) and outcomes (prevalence and hospitalisation for cardiovascular disease [CVD], and mortality risk) were compared for 2192 people with SMI and T2DM (cases) with 7773 people who had diabetes alone (controls). Sociodemographics, comorbidity, and medication prescription were covariates in regression models. RESULTS: When compared with results for participants with T2DM only, SMI was associated with increased risk of all-cause mortality (hazard ratio [HR] 1.919, 95% confidence interval [CI] = 1.602 to 2.300) and CVD-specific mortality (HR 2.242, 95% CI = 1.547 to 3.250), higher primary care physician consultation rates (incidence rate ratio [IRR] 1.149, 95% CI = 1.111 to 1.188), more-frequent checks of blood pressure (IRR 1.024, 95% CI = 1.003 to 1.046) and cholesterol (IRR 1.038, 95% CI = 1.019 to 1.058), lower prevalence of angina (odds ratio 0.671, 95% CI = 0.450 to 1.001), more emergency admissions for angina (IRR 1.532, 95% CI = 1.069 to 2.195), and fewer elective admissions for ischaemic heart disease (IRR 0.682, 95% CI = 0.508 to 0.915). CONCLUSION: Monitoring of metabolic measurements was comparable for people with T2DM who did, and did not, have SMI. Increased mortality rates observed in people with SMI may be attributable to underdiagnosis of CVD and delays in treatment.
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Diabetes Mellitus Tipo 2 , Trastornos Mentales , Estudios de Casos y Controles , Atención a la Salud , Diabetes Mellitus Tipo 2/epidemiología , Inglaterra/epidemiología , Humanos , Trastornos Mentales/epidemiología , Evaluación de Resultado en la Atención de Salud , Estudios RetrospectivosRESUMEN
OBJECTIVE: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). METHODS: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. RESULTS: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this. CONCLUSION: Young people's priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
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Cuidados Paliativos/psicología , Guías de Práctica Clínica como Asunto/normas , Calidad de la Atención de Salud/normas , Encuestas y Cuestionarios/estadística & datos numéricos , Cuidado Terminal/psicología , Adolescente , Niño , Preescolar , Inglaterra/epidemiología , Femenino , Grupos Focales/métodos , Política de Salud/legislación & jurisprudencia , Humanos , Lactante , Masculino , Cuidados Paliativos/estadística & datos numéricos , Investigación Cualitativa , Calidad de la Atención de Salud/tendencias , Derivación y Consulta , Cuidado Terminal/métodos , Adulto JovenRESUMEN
Literature reviews allow professionals to identify effective interventions and assess developments in research and practice. As in other forms of scientific inquiry, the transparency of literature searches enhances the credibility of findings, particularly in regards to intervention research. The current review evaluated the characteristics of search methods employed in literature reviews appearing in publications concerning behavior analysis (n = 28) from 1997 to 2017. Specific aims included determining the frequency of narrative, systematic, and meta-analytic reviews over time; examining the publication of reviews in specific journals; and evaluating author reports of literature search and selection procedures. Narrative reviews (51.30%; n = 630) represented the majority of the total sample (n = 1,228), followed by systematic (31.51%; n = 387) and meta-analytic (17.18%; n = 211) reviews. In contrast to trends in related fields (e.g., special education), narrative reviews continued to represent a large portion of published reviews each year. The evaluated reviews exhibited multiple strengths; nonetheless, issues involving the reporting and execution of searches may limit the validity and replicability of literature reviews. A discussion of implications for research follows an overview of findings.
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BACKGROUND: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. AIM: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. DESIGN: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). DATA SOURCES: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000-2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. RESULTS: An evidence base of mainly low- and moderate-quality studies (n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children's symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. CONCLUSION: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children's views, and research is needed to determine whether specialist input improves quality of life.
Asunto(s)
Neoplasias , Cuidados Paliativos , Pediatría , Adolescente , Canadá , Niño , Preescolar , Estudios Transversales , Humanos , Lactante , Neoplasias/terapia , Cuidados Paliativos/estadística & datos numéricos , Pediatría/estadística & datos numéricos , Estudios Prospectivos , Calidad de Vida , Estudios Retrospectivos , Adulto JovenRESUMEN
BACKGROUND: over 50% of older people in hospital are prescribed a pre-admission medicine that is potentially inappropriate; however, deprescribing by geriatricians and pharmacists is limited. This study aimed to characterise geriatricians' and pharmacists' barriers and enablers to deprescribing in hospital. It also intended to develop a framework of intervention components to facilitate implementation of hospital deprescribing. METHODS: fifty-four geriatricians and pharmacists representing four UK hospitals attended eight focus groups. We designed a topic guide to invite discussions about barriers and enablers to deprescribing. After thematic analysis, themes were mapped to the theoretical domains framework (TDF), enabling prioritisation of domains for behaviour change. We then identified evidence-based intervention components for changing behaviour within prioritised TDF domains. RESULTS: geriatricians and pharmacists described several deprescribing enablers in the hospital setting including alignment with their role and generalist knowledge, and routine patient monitoring. Five prioritised TDF domains represent the key barriers and enabler: patient and caregiver attachment to medication (social influence); perceptions that deprescribing is riskier than continuing to prescribe (beliefs about consequences); pharmacists' working patterns limiting capacity to support deprescribing (environmental context and resources); deprescribing being a low hospital priority (goals) and incentives to deprescribe (reinforcement). Prioritised TDF domains aligned with 44 evidence-based intervention components to address the barriers and enabler to hospital deprescribing. CONCLUSION: the behavioural determinants and their associated intervention components provide a hospital deprescribing implementation framework (hDIF). Intervention components should be selected from the hDIF to provide a theory and evidence-based intervention tailored to hospital contexts.