RESUMEN
BACKGROUND: Each woman's experience of the perimenopause and/or menopause is individual and unique. Research shows women from ethnic minorities often have different experiences from their White peers, and these are not being considered in conversations about the menopause. Women from ethnic minorities already face barriers to help-seeking in primary care, and clinicians have expressed challenges in cross cultural communication including the risk that women from ethnic minorities' perimenopause and/or menopause health needs are not being met. AIM: To explore primary care practitioners' experiences of perimenopause and/or menopause help-seeking among women from ethnic minorities. DESIGN AND SETTING: A qualitative study of 46 primary care practitioners from 35 practices across 5 regions of England, with patient and public involvement (PPI) consultations with 14 women from three ethnic minority groups. METHOD: Primary care practitioners were surveyed using an exploratory approach. Online and telephone interviews were conducted and the data were analysed thematically. The findings were presented to three groups of women from ethnic minorities to inform interpretation of the data. RESULTS: Practitioners described a lack of awareness of perimenopause and/or menopause among many women from ethnic minorities, which they felt impacted their help-seeking and communication of symptoms. Cultural expressions of embodied experiences could offer challenges to practitioners to 'join the dots' and interpret experiences through a holistic menopause care lens. Feedback from the women from ethnic minorities provided context to practitioner findings through examples from their individual experiences. CONCLUSION: There is a need for increased awareness and trustworthy information resources to help women from ethnic minorities prepare for the menopause, and clinicians to recognise their experiences and offer support. This could improve women's immediate quality of life and potentially reduce future disease risk.
Asunto(s)
Minorías Étnicas y Raciales , Perimenopausia , Femenino , Humanos , Etnicidad , Calidad de Vida , Grupos Minoritarios , Menopausia , Investigación Cualitativa , Atención Primaria de SaludRESUMEN
AIM: To develop a core set of outcome domains to be measured in clinical studies on lower limb orthopaedic surgery for ambulant children with cerebral palsy (CP) that represents the priorities of an international multi-stakeholder group (children, parent/carers, and health professionals). METHOD: Potential outcome domains were identified through literature review and qualitative interviews with key stakeholders. These were scored in an international two-round Delphi survey, using a 9-point Likert scale. A final consensus meeting with key stakeholders agreed on the most important outcome domains and refined the core outcome set (COS). RESULTS: One hundred and sixty-one health professionals and 36 individuals with CP and their parents/carers rated 21 of 41 outcomes as important in the Delphi survey. The final consensus group agreed 19 outcomes within eight domains to be included in the final COS: pain and fatigue, lower limb structure, motor function, mobility (daily life activities), gait-related outcomes, physical activity, independence, and quality of life. INTERPRETATION: A COS for lower limb orthopaedic surgery for children with CP was developed. Incorporating this in the design of future clinical studies will provide a more holistic assessment of the impact of treatment while allowing meaningful comparisons and future synthesis of results from primary studies. WHAT THIS PAPER ADDS: Eight core outcome domains were identified as important to measure in future clinical research. Key stakeholders perceived pain, balance and fall, and independence as very important outcomes. Six contextual factors were identified as essential in surgical decision-making.
Asunto(s)
Parálisis Cerebral , Procedimientos Ortopédicos , Niño , Humanos , Parálisis Cerebral/cirugía , Técnica Delphi , Extremidad Inferior/cirugía , Evaluación de Resultado en la Atención de Salud/métodos , Calidad de Vida , Resultado del TratamientoRESUMEN
PURPOSE: To explore the perspectives of children with CP, their parents or carers, and health professionals on factors affecting expectations and perceptions of surgical outcomes for lower limb orthopaedic surgery. MATERIALS AND METHODS: Semi-structured interviews were conducted with 10 healthcare professionals, 10 children and young people with CP, and 8 parents. Interview data were analysed by content analysis supported by the Framework Approach using the International Classification of Functioning, Disability, and Health (ICF-CY). RESULTS: A comprehensive list of 10 factors including facilitators, barriers, motivational and demotivational factors were identified and categorized into two overreaching themes (Environmental and Personal factors): interdisciplinary collaboration, communication and information resources, holistic care, and shared goal setting are reported as environment facilitators of outcomes expectations. In contrast, reported barriers include lack of time and resources and divergent expectations. Personal motivators include family encouragement, patient's self-determination, and previous experiences, whereas personal demotivators include fear of a new environment. CONCLUSION: The recognition of potential factors influencing expectations and perceptions of surgical outcomes could assist clinical reasoning when planning surgical interventions for ambulant children with CP. If these factors are integrated into the healthcare practice, it will most likely enhance the positive stakeholders' experiences postoperatively.IMPLICATION FOR REHABILITATIONUnderstanding relevant stakeholders' experiences offer a positive contribution to holistic and person-centred approaches in healthcare.People with cerebral palsy and their caregivers require adequate information on surgery and post-surgical rehabilitation regime in order to reach informed decisions.Previous experiences can influence surgical expectations and subsequent perceptions of the outcome.
Asunto(s)
Parálisis Cerebral , Procedimientos Ortopédicos , Ortopedia , Niño , Humanos , Adolescente , Parálisis Cerebral/cirugía , Parálisis Cerebral/rehabilitación , Motivación , Investigación Cualitativa , Resultado del Tratamiento , PercepciónRESUMEN
BACKGROUND: Frozen shoulder (also known as adhesive capsulitis) occurs when the capsule, or the soft tissue envelope around the ball and socket shoulder joint, becomes scarred and contracted, making the shoulder tight, painful and stiff. It affects around 1 in 12 men and 1 in 10 women of working age. Although this condition can settle with time (typically taking 1 to 3 years), for some people it causes severe symptoms and needs referral to hospital. Our aim is to evaluate the clinical and cost-effectiveness of two invasive and costly surgical interventions that are commonly used in secondary care in the National Health Service (NHS) compared with a non-surgical comparator of Early Structured Physiotherapy. METHODS: We will conduct a randomised controlled trial (RCT) of 500 adult patients with a clinical diagnosis of frozen shoulder, and who have radiographs that exclude other pathology. Early Structured Physiotherapy with an intra-articular steroid injection will be compared with manipulation under anaesthesia with a steroid injection or arthroscopic (keyhole) capsular release followed by manipulation. Both surgical interventions will be followed with a programme of post-procedural physiotherapy. These treatments will be undertaken in NHS hospitals across the United Kingdom. The primary outcome and endpoint will be the Oxford Shoulder Score (a patient self-reported assessment of shoulder function) at 12 months. This will also be measured at baseline, 3 and 6 months after randomisation; and on the day that treatment starts and 6 months later. Secondary outcomes include the Disabilities of Arm Shoulder and Hand (QuickDASH) score, the EQ-5D-5 L score, pain, extent of recovery and complications. We will explore the acceptability of the different treatments to patients and health care professionals using qualitative methods. DISCUSSION: The three treatments being compared are the most frequently used in secondary care in the NHS, but there is uncertainty about which one works best and at what cost. UK FROST is a rigorously designed and adequately powered study to inform clinical decisions for the treatment of this common condition in adults. TRIAL REGISTRATION: International Standard Randomised Controlled Trial Register, ID: ISRCTN48804508 . Registered on 25 July 2014.