Defining a core outcome set for hypermobility spectrum disorders and hypermobile Ehlers-Danlos syndrome: A Delphi consensus study.

The reported prevalence of hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) is unclear due to complex presentations and lack of awareness amongst professionals, contributing to diagnostic and management uncertainties. Standardising an outcome measure to assess symptoms most important to patients should help determine the impact of interventions. This Delphi study aims to reach a consensus with stakeholders on the core outcome set for children and adults with HSD/hEDS. A three-round modified Delphi consensus study with a follow-up consensus meeting was used. Stakeholder groups consisted of (1) individuals with HSD/hEDS; (2) family/friends/carers and (3) healthcare professionals. Participants could belong to more than one stakeholder group. They rated 74 symptoms using a 9-point Likert scale: 1 "not important to 9 "critically important". Symptoms achieving a consensus rating of ≥ 70.0% critical importance across all groups were included. In Round 1, 766 responses were received from 600 participants, reducing to 566 responses from 438 participants by Round 3, with 53 participating in the consensus meeting. Overall, 30 symptoms met the ≥ 70.0% critically important threshold to be included in the final core outcome set. These were categorised under the specialties of musculoskeletal and orthopaedics, social, pain, gynaecology and urology, negative affect, neurological, gastrointestinal and "other". This study is the first to identify by consensus the core outcome set to be measured for patients with HSD/hEDS. The importance of these outcomes was confirmed by individuals living with the condition, their family, friends, carers and relevant healthcare professionals. Trial registration: IRAS ID: 326,855; East Midlands - Leicester South REC (reference: 23/EM/0143); Protocol registered with the COMET Initiative. Key Points • There is a lack of standardised outcome measure for HSD/hEDS research studies due to the heterogeneity of symptom presentations. • Symptoms across musculoskeletal and orthopaedics, social, pain, gynaecology and urology, negative affect, neurological, gastrointestinal and "other" specialties were identified as the core outcome set defined as ≥ 70.0% critically important to measure for individuals with HSD/hEDS. • There were a significant number of symptoms, widely recognised in the literature to be comorbid to HSD/hEDS, that reached a critical importance threshold of 50.0-69.9%, restricting the core outcome set to only those that met 70% or above may be limiting.

Patients with mesothelioma and their carer's experience of diet and appetite: A qualitative insight from the Help-Meso Study.

BACKGROUND: People living with mesothelioma have a high symptom burden that can affect dietary intake and the development of malnutrition, subsequently impacting on patient-related and treatment outcomes. The present study aimed to develop a better understanding of the experiences of diet and appetite in people living with mesothelioma and their informal carers. METHODS: Twenty-three participants took part in semistructured interviews including 12 people living with mesothelioma (10 pleural and 2 peritoneal) aged 56-83 years and 12 informal carers, predominantly their spouses. Open ended questions focussed on experiences of appetite and diet, as well as approaches to maintain adequate food intake. Thematic analysis was applied. RESULTS: Four themes were generated that included unintentional weight loss and poor appetite during diagnosis and when undergoing medical intervention. Participants managed their appetite and diet by taking each day at a time and this was influenced by the physical and emotional experiences of mesothelioma. The informal carer took on the lead role of managing their relatives' diet and implemented their own nutritional strategies and there were challenges with dietary advice. CONCLUSIONS: Appetite was viewed as a multidimensional experience and was grounded within the biopsychosocial model. The findings offer important insights into opportunities informing the development of effective interventions that provide meaningful benefits for individuals living with mesothelioma and their family.

Analysing the patient experience of COVID-19: Exploring patients' experiences of hospitalisation and their quality of life post discharge.

AIMS AND OBJECTIVES: We sought to gain an understanding of the patient experience during their hospital stay for COVID-19, and the impact of COVID-19 on quality of life post discharge. BACKGROUND: Symptoms of COVID-19 include a persistent cough, dyspnoea and fatigue. Individuals with comorbidities such as cardiovascular disease have a higher risk of contracting COVID-19 and approximately 20% of those diagnosed with COVID-19 are admitted to hospital. Following discharge from hospital, 40% of patients report a worsened quality of life and up to 87% of those discharged from hospital have experienced 'long COVID'. DESIGN: A qualitative design was used to understand patient experience of hospitalisation following a diagnosis of COVID-19, and their experiences following discharge from hospital. METHODS: Ten patients with a previous diagnosis of COVID-19 took part in semi-structured interviews regarding their experiences of hospitalisation and the impact on quality of life post-discharge. RESULTS: The results identified three key themes from the interviews: communication and the inpatient experience, symptoms following discharge and regaining independence. Patients discussed their experience of hospitalisation and how this continued to impact their emotional well-being post-discharge. However, patients appeared to push themselves physically to improve their health, despite continued COVID-19 symptoms. CONCLUSION: Patients hospitalised following a diagnosis of COVID-19 experienced psychological distress during their hospital stay, as well as 3-months post-discharge. We suggest the use of psychosocial interventions to support patients post-discharge. RELEVANCE TO CLINICAL PRACTICE: The results of this study provide a greater understanding of the patient experience during their hospital stay, which can support nursing staff practice. Additionally, the study provides in depth knowledge of personal experiences of patients diagnosed with COVID-19 and the impact following hospital discharge. PATIENT OR PUBLIC CONTRIBUTION: Patient's took part in semi-structured interviews via telephone to support the aims and objectives of this study.

Clinical skills development for healthcare practitioners working with patients with persistent physical symptoms (PPS) in healthcare settings: a systematic review and narrative synthesis.

BACKGROUND: The complexity and uncertainty around Persistent Physical Symptoms (PPS) make it difficult to diagnose and treat, particularly under time-constrained consultations and limited knowledge. Brief interventions that can be utilised in day-to-day practice are necessary to improve ways of managing PPS. This review aimed to establish (i) what training primary and secondary healthcare practitioners have undertaken to develop their clinical skills when working with PPS, (ii) what training techniques or theoretical models have been used within these interventions, and (iii) how effective was the training. METHOD: A systematic literature search was undertaken on eight databases to identify professional development interventions for healthcare practitioners working with PPS, were of any study design, and at a minimum were single measure studies (i.e., training outcome alone). Studies were assessed using the Mixed Methods Appraisal Tool (MMAT) and narratively synthesised. RESULTS: Despite high methodological heterogeneity across the six included studies, they all aimed to improve healthcare practitioners' communication skills through educational (theory, awareness, attitudes, assessment, treatment, and management of PPS) and experiential (role play) learning. CONCLUSIONS: The review findings demonstrate that developing healthcare practitioners' communicative behaviours led to increased confidence and self-efficacy when working with PPS, which facilitated improved consultations and improvements on some patient outcomes. Barriers to the uptake of training programmes and implementation into daily clinical practice are discussed, including the need for PPS to be formally implemented into undergraduate teaching and post-qualification continuous professional development. TRIAL REGISTRATION: This review was registered at PROSPERO [CRD42022315631] prior to the review starting.

A Systematic Review and Metasynthesis of Hematopoietic Stem Cell Transplant (HSCT) Patient's Experiences of Long-Term Monitoring Clinics from the Patient's Perspective.

This study aimed to synthesize all qualitative evidence on the experiences of hematopoietic stem cell transplant (HSCT) patients attending long-term monitoring clinics from their perspective. A systematic search of the literature was undertaken across 8 databases. The Critical Appraisal Skills Program was used to evaluate each study's quality. Confidence in the Evidence from Reviews of Qualitative Research was employed to assess confidence in each finding. Three themes from 4 qualitative studies were identified relating to patients' experiences, "[It's] important to maintain a good relationship with the nurses and doctors," "There's always the thing about the logistics," and "Once you have cancer, you're always thinking do I have it again?". The findings suggest that HSCT patients' experiences of long-term follow-up care clinics are influenced by the patient-provider relationship and the logistical set-up of monitoring practices, and weakly connected with fear of cancer recurrence. Future research is needed to understand the impact of each finding of this review, specifically in relation to patients' country of residence to gain a greater understanding of their monitoring support needs.

Exploring the biopsychosocial impact of hypermobility spectrum disorders and Ehlers-Danlos syndrome in an adult population: a protocol for a scoping review.

BACKGROUND: Conditions such as hypermobility spectrum disorders (HSD) and Ehlers-Danlos syndrome (EDS) are most often diagnosed when an individual has joint flexibility beyond the normal physiological limits. Additional characteristics and symptoms include pain and fatigue with individuals also being more likely to report feelings of anxiety and depression. Due to the varied presentation of these conditions, there is a lack of understanding amongst the various healthcare professionals (HCPs) individuals present to, leading to delayed diagnoses and negative experiences for the individuals themselves. This scoping review therefore aims to map the known biopsychosocial impact of adults with HSD and EDS. METHODS: The scoping review will follow the six-step framework as outlined by Arskey and O'Malley and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR) checklist. The search will be conducted using the following databases: AMED, CINAHL, Cochrane Library, Embase, MEDLINE, PsycINFO, PubMed PEDro. Full-text published articles in the English language (excluding literature and systematic reviews) with adult samples (over the age of 18 years) and a diagnosis of a HSD or EDS, published between 2012 and 2022, will be included in the review. DISCUSSION: This review will aim to explore the existing literature for the reported biopsychosocial impact of adults with a HSD or EDS. It will also aim to further acknowledge the gaps in understanding of the condition, how the condition and the impact of the condition is being measured and what HCPs are involved in supporting such individuals. These gaps will be used to inform a future systematic review. It is the overall goal to increase the knowledge of HCPs and the quality of life of adults living with a joint hypermobility condition.

Psychological interventions to improve pain, fatigue, anxiety, depression, and quality of life in children and adults with hypermobility spectrum disorders and Ehlers-Danlos syndrome: a systematic review.

Hypermobility spectrum disorders (HSD) affect individuals across physical, psychological and social domains, making assessment and management difficult. Management for this condition primarily focuses on addressing the musculoskeletal complaints using physiotherapy rather than the additional manifestations such as fatigue, anxiety and depression. This systematic review aims to identify psychological interventions and assess whether they improve the lived experiences of individuals with HSD. It also aims to assess which psychological interventions were most effective, which symptoms were most effectively managed by a psychological intervention, and whether there were differences between children and adults. Studies were included if they were a randomised controlled trial or pre/post-test design, a sample of any age and clinical diagnosis of HSD (including Ehlers-Danlos syndrome), used a psychological intervention and assessed the effect of the intervention on lived experiences using appropriate outcome measures. Risk of bias was assessed using the Mixed Methods Appraisal Tool. The results were narratively synthesised. Six studies were included in the review, one isolated psychological intervention and five incorporated a psychological intervention within a multidisciplinary programme. The interventions predominantly aimed to reduce pain including intensity, interference, pain-related fear and catastrophising, with anxiety and depression, affect, daily living, fatigue also being evaluated. The most beneficial psychological interventions were those delivered alongside physiotherapy in an outpatient or community setting, improving both the physical and psychological aspects of pain, subsequently improving quality of life. However, there lacks randomised controlled trials with larger samples to definitively confirm the significant findings discussed in this review.

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation.

Introduction: In England, everyone is considered an organ donor unless they have registered for opt-out donation. Research Question: This study evaluated positive statements and negative affective attitudes against anticipated organ donor status and whether the order in the attitudes and statements presented impacted organ donor intention under an opt-out system. Design: A quasi-experimental mixed between-within design was employed with participants assigned to 1 of 2 conditions. Participants in the first condition received negative affective attitude statements followed by positive statements. This was reversed in the second condition to combat ordering effects. Participants (N = 679) were asked about their donor status under an opt-out system. There were three groups: opt-in (actively), opt-out/not sure, and deemed consent (no objection). Organ donor intentions were measured at three intervals: baseline, post-positive statements, and post-negative attitudes. Results: Approximately 10% of participants would opt-out or were unsure of their intentions to be an organ donor under an opt-out system. Significant effects were found in both positive statements and negative affective attitudes. All groups expressed greater medical mistrust and were most influenced by cognitive attitudes. Conclusions: Under the opt-out system in England, it is anticipated that the majority would actively opt-in or have no objection to being automatically registered as an organ donor. Public health campaigns would benefit from promoting the most influential positive statements and refuting the most detrimental negative attitudes to increase intentions of those who plan to opt-out or are unsure.

The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: a qualitative exploration.

PURPOSE: Despite a haematopoietic stem cell transplant (HSCT) being a potentially curative treatment option for malignant and non-malignant disorders, patients may develop complex physical and psychological post-transplant complications. Consequently, transplant centres remain responsible for patients' life-long monitoring and screening practices. We sought to describe how HSCT survivors experience long-term follow-up (LTFU) monitoring clinics in England. METHOD: A qualitative approach was adopted with data collected from written accounts. Seventeen transplant recipients were recruited from across England, and the data was analysed using thematic analysis. RESULTS: Data analysis elicited four themes: Transfer to LTFU care: 'will there be a change in my care, or will appointments just become less frequent?'; Care Coordination: 'it is good to know I am still in the system'; Relationship continuity: 'a good knowledge of me, my health and what is important to me'; and Late-effects Screening: 'there was not much information about what to expect or be aware of'. CONCLUSIONS: HSCT survivors in England experience uncertainty and lack of information regarding the transfer from acute to long-term care and clinic screening practices. However, patients gain reassurance from remaining on a healthcare pathway and maintaining relationships with healthcare professionals. IMPLICATIONS FOR CANCER SURVIVORS: HSCT recipients entering LTFU monitoring clinics are a growing population of cancer survivors. Understanding and acknowledging this cohort of patients' needs may inform the development of tailored support to help patients navigate the complicated healthcare pathway.

The biopsychosocial impact of hypermobility spectrum disorders in adults: a scoping review.

Joint hypermobility affects approximately 30% of the United Kingdom (UK) population, characterised by the ability to move joints beyond the physiological limits. Associated conditions include Ehlers-Danlos syndrome and hypermobility spectrum disorders, affecting individuals across physical, psychological and social levels detrimentally impacting their health and wellbeing. The scoping review aims to describe the known biopsychosocial impact of joint hypermobility conditions in adults over the last decade. Additional objectives include to (1) identify the types of studies that address these factors, (2) to understand how the impact of the condition is measured and managed and (3) what healthcare professionals (HCPs) are involved. The scoping review was conducted using the five-stage framework by Arksey and O'Malley. The search strategy related to two main keywords, "hypermobility" and, "biopsychosocial" across a number of electronic databases. A pilot search was conducted to determine the suitability of the databases and terms. Following the search, the data was extracted and charted, summarised and narratively reported. 32 studies met the inclusion criteria. The majority were conducted in either the UK or United States of America and case-control in design. The biopsychosocial impact was wide-ranging including, but not limited to, musculoskeletal system and dermatology, gastroenterology, mood and anxiety disorders, education and employments. This review is the first of its kind to summarise all reported symptoms and impact of joint hypermobility conditions in adults, highlighting a clear need to promote a multidisciplinary and holistic approach in raising awareness of these conditions and improving their management.

What psychological interventions are effective for the management of persistent physical symptoms (PPS)? A systematic review and meta-analysis.

OBJECTIVES: Presentation of persistent physical symptoms is associated with increased health care utilization, yet clinical outcomes often remain suboptimal. This systematic review aimed to determine whether psychological interventions are effective for the management of PPS and if so, what are the features of the interventions and at what level of care are they delivered. The review also set out to establish which symptoms in those diagnosed with PPS can be effectively managed with psychological intervention. METHODS: Studies were included if they clearly reported a psychological intervention, specified the study sample as adults with a diagnosis of persistent physical symptoms, included a comparator and as a minimum an outcome measure of somatic symptoms. Risk of bias was assessed using the EPHPP. Meta-analysis was conducted to estimate the overall effect of interventions on somatic symptoms (the primary outcome), anxiety and depression (secondary outcomes). RESULTS: Seventeen papers of varying quality indicated that psychological interventions can be effective for the management of somatic symptoms reported by individuals with PPS within a primary care setting. Psychological interventions were also found to be effective at reducing depression symptoms in individuals with PPS in twelve of the included studies. However, the meta-analysis results suggest that the psychological interventions utilized within eleven of the included studies did not significantly impact anxiety symptoms. CONCLUSIONS: Psychological interventions have some success in managing somatic symptoms in PPS patients within primary care settings although their effects on other psychological symptoms is more mixed. The review highlights the importance of establishing a clearer diagnostic classification to inform treatment trajectories and the need for appropriate training and support within a multi-disciplinary team to enable the provision of such therapies.

Women's experiences of information, education and support when undergoing pelvic radiotherapy for gynaecological cancer: An exploratory qualitative study.

INTRODUCTION: As cancer survival rates increase, so does the importance of preventing and alleviating the late effects of radiotherapy. The effect of long-term problems on patients' physical, social and psychological well-being must be addressed along with the importance of developing an understanding of the late effects of treatment to find ways of maximising the quality of life of cancer survivors. The aim of this service evaluation was to establish what support, information and education on post treatment changes women who have undergone pelvic radiotherapy for gynaecological cancer were provided with, and whether it met their needs. METHODS: An interpretative phenomenological analysis was undertaken to explore the support, information and education on post treatment changes women who have undergone pelvic radiotherapy for gynaecological cancer are currently provided with and whether or not it meets their needs. Semi-structured interviews were conducted to gain insight into the experiences of participants. Researcher reflexivity was considered and ethics permissions granted. RESULTS: This paper reports the themes from analysis; communication and information provision, abandonment, service provision, and sexual health and intimacy. All patients experienced feelings of abandonment at the completion of treatment and those experiencing ongoing side effects needing greater support, particularly to manage side effects affecting the bowel and bladder. CONCLUSION: This study fills a gap in existing knowledge and identifies that patients with a gynaecological cancer require greater communication and support. The introduction of a therapeutic radiographer led late effects clinic and sexual care after radiotherapy clinic could provide the support and information that patients need to cope with the long-term side effects experienced due to pelvic radiotherapy. IMPLICATIONS FOR PRACTICE: This service evaluation highlights the importance of including patient perspectives when designing and developing services.

A qualitative study to understand patients' experiences of their post-operative outcomes following forefoot surgery.

Background: Hallux valgus and hallux rigidus are two common forefoot conditions causing deformity, pain, functional limitations, disability and deteriorating health status resulting in the requirement for surgery. Even when surgery is performed by an experienced surgeon, there remains a potential for patients to experience dissatisfaction and unfavourable outcomes. Adverse results are moderated by psychosocial variables; however, there is a paucity of qualitative research providing insight into how patients perceive their outcomes and the factors affecting their recovery. Objective: The study aimed to qualitatively explore patients' experiences of their surgical outcomes following forefoot surgery and factors associated with their recovery. Semi-structured interviews with 15 patients who received surgery for hallux valgus and/or hallux rigidus were conducted. Results: Thematic analysis generated five themes: physical limitations, the psychosocial impact of surgical recovery, regaining normality, patients' expectations for physical recovery and an altered body-image. Physical and psychosocial factors were inter-related. Patients experiencing problematic outcomes were functionally limited, had low mood and were unable to return to a normal life post-surgery. The women reported weight related issues and were limited in their footwear and clothing choices, negatively impacting on their self-esteem. Conclusion: A forefoot condition is multifaceted, with patients experiencing a range of physical and psychological factors that may influence their outcomes and recovery from surgery. Patients need to be supported holistically with the use of a biopsychosocial model. A multidisciplinary approach to care and treatment within the forefoot surgical pathway with the inclusion of allied health professionals will enable to better support patients to enhance their outcomes.

Interventions to promote physical distancing behaviour during infectious disease pandemics or epidemics: A systematic review.

OBJECTIVES: Physical distancing, defined as keeping 1-2m apart when co-located, can prevent cases of droplet or aerosol transmitted infectious diseases such as SARS-CoV2. During the COVID-19 pandemic, distancing was a recommendation or a requirement in many countries. This systematic review aimed to determine which interventions and behavior change techniques (BCTs) are effective in promoting adherence to distancing and through which potential mechanisms of action (MOAs). METHODS: Six databases were searched. The review included studies that were (a) conducted on humans, (b) reported physical distancing interventions, (c) included any comparator (e.g., pre-intervention versus post-intervention; randomized controlled trial), and (d) reported actual distancing or predictors of distancing behavior. Risk of bias was assessed using the Mixed Methods Appraisal Tool. BCTs and potential MoAs were identified in each intervention. RESULTS: Six articles (with seven studies and 19 comparisons) indicated that distancing interventions could successfully change MoAs and behavior. Successful BCTs (MoAs) included feedback on behavior (e.g., motivation); information about health consequences, salience of health consequences (e.g., beliefs about consequences), demonstration (e.g., beliefs about capabilities), and restructuring the physical environment (e.g., environmental context and resources). The most promising interventions were proximity buzzers, directional systems, and posters with loss-framed messages that demonstrated the behaviors. CONCLUSIONS: The evidence indicates several BCTs and potential MoAs that should be targeted in interventions and highlights gaps that should be the focus of future research.

A qualitative study with orthopaedic surgeons on pain catastrophizing and surgical outcomes: shifting from a medical towards a biopsychosocial model of surgery.

BACKGROUND: Pain catastrophizing (PC) moderates surgical outcomes and behavioural interventions are recommended to optimise post-operative results. Less is known about surgeons' experiences of providing care and their attitudes towards the use of interventions in practice. OBJECTIVE: It is therefore invaluable to understand surgeons' views on how best to support patients who may be at risk of suboptimal recovery. Eleven surgeons and three registrar orthopaedic practitioners took part in semi-structured interviews within a hospital setting. The surgical decision-making process, views of PC and the use of behavioural interventions in surgical practice were explored. RESULTS: Thematic analysis identified five themes: pain expressions and pain behaviours affect the surgeons' decision-making process, when pathologies and symptoms do not match, psychological factors pertaining to unsatisfactory outcomes, a service gap in surgical care and the acceptability of using a screening tool in surgical practice to identify patients at risk of suboptimal recovery. CONCLUSION: Orthopaedic surgeons face challenges in identifying who is likely to reach optimal versus suboptimal outcome. Surgeons are becoming increasingly aware of patient psychological distress being detrimental to outcomes, and they support the use of behavioural interventions to optimise post-operative outcomes or stop unnecessary treatments. The surgeons accept the use of a screening tool in surgical practice with better access to support services with input from allied health professionals. A screening tool may provide great utility for identifying at risk patients, to allow for modification of surgical patients care plans.

Parents experiences of having an infant with early onset group B streptococcus infection.

OBJECTIVES: The study explores parents lived experience of having an infant with early onset group B streptococcus (GBS). DESIGN: The study adopts a qualitative approach and a phenomenological framework with written autobiographical accounts as the method of data collection. METHODS: Twenty-seven parents wrote first-hand accounts of their experience of having an infant with early onset GBS. Participants documented their experiences in their own way, reporting their thoughts and feelings, experiences, and events that were meaningful to them. RESULTS: Four themes were developed from data analysis: 'bonding'; 'grief'; 'communication and information provision'; and 'future family'. CONCLUSIONS: The study findings demonstrate the complexity of emotions within parent's experiences and highlight grief and loss as a core component of these experiences. Medical intervention, while acknowledged as being vital and in many cases lifesaving, was viewed as a disruption to early bonding experiences resulting in sadness and guilt. Variation in information provision, communication about this infection, and feeling that their infant's illness and/or death were preventable added to the sense of loss. Breakdowns in interpersonal communications with partners and family were commonly described and experiences of early onset GBS had implications for decision-making around future pregnancies.

A systematic review and qualitative synthesis of the experience of living with colorectal cancer as a chronic illness.

OBJECTIVE: Advances in detection and treatment mean that over 50% of people diagnosed with colorectal cancer can expect to live for more than ten years following treatment. Studies show that colorectal cancer patients can experience numerous physical and psychological late effects. The aim of this study was to conduct a systematic review and qualitative synthesis on the experiences of living with colorectal cancer as a chronic illness. METHODS: Electronic searches of online databases were undertaken of peer reviewed and grey literature. Forty-seven papers were eligible for inclusion in the review, capturing the experiences of over 700 participants, the findings from which were analysed using thematic synthesis. RESULTS: Three higher order concepts were identified which were prevalent across studies and countries and which related to the supportive care needs of patients; common physical and psychological late effects of cancer; and methods of psychosocial adjustment to living with and beyond colorectal cancer. CONCLUSION: The results are considered in the context of existing theoretical approaches to chronic illness and the need to develop a theoretical approach which fully encapsulates the experience of living with colorectal cancer as a chronic illness in order to inform interventions to support patient adjustment.

Women's Experiences of Interstitial Cystitis/Painful Bladder Syndrome.

The aim of this study was to explore the lived experience of interstitial cystitis (IC)/painful bladder syndrome (PBS). A phenomenological approach with emphasis on reflection and openness was adopted. Twenty women diagnosed with IC an average of nine years prior to data collection produced a written account of their experiences. The textual data was analyzed using thematic analysis. Four themes were derived from data analysis: diagnostic uncertainty; restrictions and limitations on life; self-management; and interpersonal relationships and social support. Women reported issues in receiving a diagnosis of IC, undergoing numerous diagnostic tests, and experiencing multiple referrals. Having undergone numerous treatments with limited success, women sought information and management strategies outside of standard medical care and reported a negative impact on sexual and social relationships. The findings illustrate the complex nature of women's experiences and the physical and psychological impacts and effects of IC/PBS on women's daily lives.

Childhood eye cancer from a parental perspective: The lived experience of parents with children who have had retinoblastoma.

OBJECTIVES: This study aimed to explore the lived experience of parents with children who have had retinoblastoma. METHODS: The study adopted a qualitative approach using the data collection method of written accounts. Eleven parents were recruited via snowball sampling from across the UK. Parents were asked to retrospectively produce a written account of their experiences. These narrative autobiographical accounts were analysed using thematic analysis. RESULTS: Data analysis elicited three themes: waiting and misdiagnosis; emotional rollercoaster; and support needs. Parents described experiencing prolonged periods of waiting from referral to clinical investigations and the implementation of a treatment plan. Difficulties in obtaining an accurate diagnosis for their child elicited anxiety for parents. Emotions were described in terms of a rollercoaster with highs and lows and times of despair, anger, relief, and hope. Experiences of personal support varied and had lasting impacts on relationships. However, the support from other parents with a child with retinoblastoma was perceived to be instrumental in facilitating coping. CONCLUSIONS: The findings show parental experiences were characterised by numerous difficulties and suggest a need for greater awareness of childhood eye cancer. This research highlights the importance of psychological and social support for parents of a child with retinoblastoma.

Health professionals' attitudes to patients' use of wearable technology.

OBJECTIVE: Wearable technologies for health monitoring are becoming increasingly mainstream. However, there is currently limited evidence exploring use from the perspective of healthcare professionals. This study aimed to explore health professionals' attitudes toward their patients' use of wearable technologies. METHODS: A convenience sample of health professionals was recruited to participate in this study. Qualitative semi-structured interviews were carried out either face-to-face, via Skype or telephone. Interviews were recorded using a Dictaphone, transcribed verbatim and analysed using thematic analysis. RESULTS: Four themes emerged from the qualitative findings: 'opportunities for wearable technology', 'usability and understanding', 'privacy and surveillance' and 'cost'. CONCLUSIONS: The findings portray health professionals' ambivalence to the use of wearable technology, and it was apparent that whilst the participants considered the technology as being beneficial to patients, they still had concerns for its use.