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Background: Mental capacity legislation in the UK is designed to safeguard the rights of people who may need support, or may be unable, to make autonomous decisions. Very limited evidence has been published about the impact of the COVID‐19 pandemic on the application of mental capacity legislation and, to our knowledge, none on the ability of speech and language therapists (SLTs) to support people with communication disabilities to engage in decision‐making. Aims: To describe how UK SLTs supported people with communication disabilities to make decisions and participate in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. Methods & Procedures: This descriptive, cross‐sectional study used an online survey to collect quantitative and qualitative data about SLTs' practice experiences between August and November 2020. SLTs working with a range of adult clinical populations in different care settings were sampled purposively from all UK jurisdictions. Participants were recruited through professional networks and social media. Quantitative data were summarized using descriptive statistics. Qualitative data were analysed thematically. Outcomes & Results: Data were collected from 107 SLTs working in a range of settings across all four UK nations. The sample included SLTs working with people with neurological conditions, learning disabilities, mental health conditions and acute confusion. The need for SLT support appeared to increase during the pandemic. Most respondents were still able to offer support; however, the amount and nature of support varied. Quality of support was impacted by adjustments associated with social distancing and infection control restrictions. Personal protective equipment (PPE) was identified as a barrier to communication. Indirect working methods (e.g., telehealth) were inaccessible to some people with communication disabilities. Most respondents felt confident that legal requirements were upheld, but suggested this group was less able to engage in decision‐making and had reduced access to support to manage their own health conditions. Conclusions & Implications: Some SLT services were limited in their ability to meet the decision‐making support needs of people with communication disabilities during the COVID‐19 pandemic due to structural and systemic barriers. This suggests that existing inequities in the provision of care for people with communication disabilities in the UK were amplified during the pandemic. What this paper adds: What is already known on the subject: People with communication disabilities may require support from healthcare professionals, including SLTs, to make decisions and communicate their wishes and preferences about their care, in line with mental capacity legislation. There is a lack of published evidence relating to how changes in staff deployment and resource during the COVID‐19 pandemic may have impacted on the ability of SLTs to provide this support. What this paper adds to existing knowledge: This study provides novel evidence about the ways in which UK SLTs supported people with communication disabilities to engage in mental capacity assessments, best interests decision‐making and advance care planning during the COVID‐19 pandemic. In some cases, the amount and quality of decision‐making support available was affected negatively due to changes in healthcare delivery and resource management and SLT working practices. What are the potential or actual clinical implications of this work?: This study suggests that some people with communication disabilities experienced greater barriers to receiving professional support to maximize their autonomy and manage their health conditions during the COVID‐19 pandemic. Speech and language therapy services and healthcare commissioners should consider how best to ensure equitable service delivery to this population in resource‐limited situations. [ABSTRACT FROM AUTHOR]

Background: Autistic people require varying levels of support at different stages of their lives. Yet, the healthcare needs of autistic adults are largely unmet. Speech and language therapy (SLT) is one healthcare service that has an important role in supporting autistic people: both with initial diagnosis, and with the ongoing support needed to navigate different communicative challenges across the lifespan. Despite recommendations for such support, currently there is no clear SLT pathway for autistic adults, and a lack of established approaches to support autistic adults' speech, language and communication needs. Aims: To seek autistic adults' views on (1) their communication skills and support needs; (2) the type of support SLT could offer; and (3) how such support could be provided. Methods & Procedures: A total of 18 autistic adults were interviewed in their preferred mode of communication (e.g., face to face, phone call, text messaging, e‐mail), expressing their views on their communication skills and needs. Interview data were analysed using thematic analysis. Outcomes & Results: Autistic adults presented complex views on communication, identifying the benefits of communication, while also emphasizing the significant negative impact that communication difficulties can have on their everyday lives. Identifying a range of internal (e.g., personal feelings) and external (e.g., the communication partner) factors, they highlighted the need for support at both individual levels (for specific life situations) and broader societal levels (to increase awareness and acceptance of communication difficulties). Conclusions & Implications: Considering the negative impact that communication difficulties can have for autistic adults, a need for support was emphasized. Despite recognition of this need within current legislation (in the UK) and positive steps toward providing support, more needs to be done. As experts in supporting individuals with communication difficulties, speech and language therapists could play a pivotal role in providing support at an individual level, as well as increasing awareness of communication differences more widely. What this paper addsWhat is already known on this subjectThere is a growing population of autistic adults with unmet support needs. A core characteristic of autism is difficulty with neurotypical social communication and interaction, which persists into adulthood and impacts across various life domains.What this paper adds to existing knowledgeAutistic adults outlined the types of communication difficulties they experience, and how these can negatively impact on physical and mental health. Results highlight how these difficulties are not just rooted within the person themselves but can be influenced by external factors (e.g., the environment and the communication partner).What are the potential or actual clinical implications of this work?Some autistic adults may benefit from direct support from SLT services. However, increased awareness and respect for communication differences at a broader societal level is also needed. Speech and language therapists can play an important role in increasing this level of awareness, positively highlighting differences in communication and ways to support people with communication difficulties/differences. [ABSTRACT FROM AUTHOR]

In healthcare settings, there is an emotional cost to caring which can result in compassion fatigue, burnout, secondary trauma, and compromised patient care. Innovative workplace interventions such as the Schwartz Rounds offer a group reflective practice forum for clinical and non‐clinical professionals to reflect on the emotional aspects of working in health care. Whilst the Rounds are established in medical health practice, this study presents an evaluation of the Rounds offered to mental health services. The Rounds were piloted amongst 150 mental health professionals for 6 months and evaluated using a mixed‐methods approach with standardized evaluation forms completed after each Round and a focus group (n = 9) at one‐month follow‐up. This paper also offers a unique six‐year follow‐up of the evaluation of the Rounds. Rounds were rated as helpful, insightful, and relevant, and at six years follow‐up, Rounds were still rated as valuable and viewed as embedded. Focus groups indicated that Rounds were valued because of the opportunity to express emotions (in particular negative emotions towards patients that conflict with the professional care‐role), share experiences, and feel validated and supported by colleagues. The findings indicate that Schwartz Rounds offer a positive application in mental healthcare settings. The study supports the use of interventions which provide an ongoing forum in which to discuss emotions, develop emotional literacy, provide peer support and set an intention for becoming a more compassionate organization in which to work. [ABSTRACT FROM AUTHOR]

Adverse childhood experiences (ACEs) have been associated with negative mental and physical health consequences. Neighbourhood police officers (NPOs) are thought to be well placed to identify and support children experiencing ACEs. Within this paper, we describe a qualitative exploration of an initiative deployed by a large UK police force which aimed to aid early identification of young people with ACEs using police data and provide subsequent support given by NPOs. A thematic analysis was conducted using transcripts from three focus groups of NPOs, supplemented by questionnaires. Key themes identified in both sets of data offer reflections for policing and other public service provision seeking to target on the basis of ACEs, including: limitations in the usefulness of police data to identify childhood adversity; challenges using the ACEs framework as a means to target such 'early intervention'; and debates regarding the appropriate role of the police in supporting young people in adversity. Prior to replication of this intervention elsewhere, there are several points to consider: whether police data alone are sufficient in identifying ACEs; ensuring clarity regarding the role of the public sector agencies in such intervention; and determining an apt measure of success for the scheme. Key practitioner messages: Modelling using only police data can provide insight into the population of children who may have suffered from ACEs but may not provide significant opportunities for early interventionThere is a clear need for defining the role of UK police forces in the delivery of early interventionIt is evident that multi‐agency working/data sharing is crucial to preventing the duplication of referrals and interventions conducted with young people who have experienced ACEs 'There is a clear need for defining the role of UK police forces in the delivery of early intervention' [ABSTRACT FROM AUTHOR]

Introduction: Peer support offers informational, appraisal and emotional support for people with kidney disease, is recommended in national policy, yet has low engagement levels. This paper reports results of a national survey and qualitative interviews in the UK with the aim of increasing understanding of peer support availability and its barriers and facilitators. Literature Review: A recent narrative review highlighted the barriers and facilitators to peer support uptake among people with kidney disease however called on further studies to be conducted. Material and Methods: The survey, adapted from a 2012 version, was sent to all 83 UK kidney units. Semistructured interviews were conducted with staff, recipients and supporters from two units. Results: Forty-four units completed the survey, and 10 staff, 7 patients and 2 peer supporters were interviewed. The most common facilitators were promotion with staff and having peer support champions. Barriers included lack of staff time, guidance/information, other projects taking priority and too few supporters. Discussion: Little progress has been made since 2012; a proportion of units without peer support remains significant, with similar barriers identified in 2020. Services could be designed to limit the time needed for their creation and maintenance through having simpler referrals and designating staff liaisons. Implications for Clinical Practice: Peer support programmes should have passionate staff and volunteers, involve recipients in the design, recruit an array of supporters and establish evaluations to determine the progress/outcomes. A resource toolkit was developed in response to this project. Conclusion: Findings from the national survey and qualitative interviews showed that more peer support optimisation and prioritisation is needed to ensure benefits are maximised. [ABSTRACT FROM AUTHOR]

Background: Supported self‐management can improve clinical and psychosocial outcomes in people with cancer; the considerations required to implement self‐management support (SMS) for people living with a lower‐grade glioma (LGG)—who often have complex support needs—are not known. We aimed to identify and understand these implementation considerations through the lens of normalisation process theory (NPT), from the perspectives of healthcare professionals (HCP) and people with LGG. Methods: We conducted semistructured interviews with HCPs who support adults with brain tumours (n = 25; 12 different healthcare professions), and people with LGG who had completed primary treatment (n = 28; male n = 16, mean age 54.6 years, mean time since diagnosis 8.7 years), from across the United Kingdom. Interviews were transcribed and inductive open coding conducted, before deductively mapping to constructs of NPT. We first mapped HCP data, then integrated data from people with LGG to explore alignment in experiences and perspectives. Results: We generated supporting evidence for all four NPT constructs and related subconstructs, namely: 'Coherence', 'Cognitive participation', 'Collective action' and 'Reflexive monitoring'. Data from HCPs and people with LGG clearly demonstrated that effective SMS constitutes a collective activity. Key implementation considerations included: ensuring awareness of, and access to, support; building strong HCP‐support recipient relationships; and careful inclusion of close family and friends. We identified pertinent challenges, such as identifying support needs (influenced by the extent to which those with LGG engage in help‐seeking), resistance to support (e.g., technology literacy), training for HCPs and HCP cooperation. Conclusions: This study demonstrates the collective nature of, and provides insight into the individual roles within, supported self‐management. We outline considerations to operationalise, sustain and appraise the implementation of SMS for people with LGG. Patient or Public Contribution: People with brain tumours, and informal caregivers, were involved in the development of information materials and topic guides to ensure accessibility and pertinence. They also had opportunities to comment on interview findings. [ABSTRACT FROM AUTHOR]

Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50-69 years). These women are more likely to experience a greater number of risk factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics. The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services. Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis. Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however, greater discussion focused on the latter. The participants identified 'a lack of health educational material' and also negative 'emotions, attitudes and physical barriers' as inhibiting factors for attendance. This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks was identified for women with ID who refused to attend the breast clinics; however, issues of informed 'consent' and 'vulnerability' were raised for staff and also family carers having to undertake these checks. Development of user-friendly health educational literature using 'pictures, symbols, signs' and simplified words should be accessible to all ID staff, healthcare staff, and also women with ID. [ABSTRACT FROM AUTHOR]

Objectives: Emergency department (ED) attendance is common among people with dementia and associated with poor health outcomes. Literature suggests a link between access to community care and the ED, but we know little about the mechanisms behind this link. This study aimed to explore experiences of accessing community and emergency care among people affected by dementia. Methods: Informed by critical realism, semi‐structured online and telephone interviews were conducted with people with dementia and family caregivers, with and without experience of using the ED. Participants were recruited from across the United Kingdom using purposive sampling with maximum variation. A mostly experiential reflexive thematic analysis approach was used, applying the candidacy model of access to deepen interpretation. Results: Two dyad and 33 individual interviews were conducted with 10 people with dementia, 11 current caregivers and 16 bereaved caregivers (men = 11, 70–89 years = 18, white ethnicity = 32). Three themes are reported: (1) Navigating a 'push system', (2) ED as the 'last resort', and (3) Taking dementia 'seriously'. Themes describe a discrepancy between the configuration of services and the needs of people affected by dementia, who resort to the ED in the absence of accessible alternatives. Underlying this discrepancy is a lack of systemic prioritisation of dementia and wider societal stigma. Conclusion: Although a last resort, ED attendance is frequently the path of least resistance for people with dementia who encounter multiple barriers for timely, responsive access to community health and social care. Greater systemic prioritisation of dementia as a life‐limiting condition may help to reduce reliance on the ED through essential development of post‐diagnostic care, from diagnosis to the end of life. Key points: Changing needs of people with dementia are at odds with the structural, legal, and cultural constraints of the health and social care system.Due to barriers in accessing post‐diagnostic care, emergency department attendance becomes the path of least resistance.There is a lack of parity of esteem between dementia and other life‐limiting conditions. [ABSTRACT FROM AUTHOR]

Introduction: As children with long‐term conditions (LTCs) mature, they are usually expected to assume responsibility from their parents for self‐management of their condition. Little is known about what supports families with this handover of responsibility, including the role of healthcare professionals (HCPs). This study aimed to explore what supports young people with chronic kidney disease (CKD) to assume self‐management responsibility and parents to relinquish control. Methods: A qualitative study, using a grounded theory approach was conducted. Individual and dyadic interviews and focus groups were carried out with 16 young people aged 13–17 years old with CKD, 13 parents, and 20 HCPs. Participants were recruited from two UK children's renal units. Findings: Building and maintaining trust, fostering positivity, learning from mistakes, forming partnerships and individualized support, facilitated the transfer of self‐management responsibility. However, HCPs' focus on developing partnerships with young people meant some parents felt excluded, highlighting uncertainty around whether support should be child‐ or family‐centred. Although tailored support was identified as critical, aspects of local service provision appeared to impact on HCPs' capacity to implement individualized approaches. Conclusion: This study has identified what supports the handover of responsibility, and, importantly, HCPs' current, and potential role in helping young people to assume responsibility for managing their LTC. Further research is needed to explore how HCPs' involvement balances child‐ and family‐centred care, and how HCPs can adopt personalized, strengths‐based approaches to help ensure the support that families receive is tailored to their individual needs. Patient or Public Contribution: Patient and public involvement was integrated throughout the study, with young adults with CKD and parents who had a child with CKD actively involved in the study's design and delivery. [ABSTRACT FROM AUTHOR]

Background: In the UK, district nursing services (DNS) deliver care to people intheir own homes and have regular contact with people with dementia. Research conducted with nurses working in similar roles outside the UK suggests their contribution to high quality dementia care is limited by compassion fatigue, lack of dementia training and low levels of confidence. However, there is a paucity of research exploring the role and learning and support needs of nurses within DNS. Objectives: The aim was to gain insight into the role and experiences of nurses caring for people living with dementia at home. Methods: The study was informed by a descriptive phenomenological approach. Semi‐structured interviews were conducted with a purposive sample of ten nurses working in DNS. Data were analysed thematically. Results: Five main themes were identified: 'Home as a care setting' reflected how delivering home‐based care shaped participants experiences of caring for people with dementia; 'Taking it in their stride' revealed how participants adapted and responded to the complexity of care needs for people with dementia; 'Complexity and unpredictability' related to the unpredictable nature of people with dementia's care needs and the impact this had on participants' workloads; 'Expertise and support within the wider team' detailed which networks nurses used for advice and support to manage the complex needs of people living with dementia at home; 'Specialist support' identified the need for structural changes and resources to enable the nurses to deliver the care needed. Conclusions: This study enables better understanding of the role of DNS in supporting people with dementia to live at home. This is important for defining how dementia care can become effectively integrated into primary care. Recommendations include improved models of care, which factor in specialist nurses, additional time for home visits and greater emphasis on education and training. Implications for practice: Improved models of working that factor in additional time and staffing such as specialist nurses in dementia and palliative care would allow DNS to meet the needs of people with dementia more effectively. [ABSTRACT FROM AUTHOR]

Some women with severe perinatal mental health difficulties in England are cared for by acute home treatment services, known as Crisis Resolution Teams (CRTs), which provide short‐term home‐based treatment for adults experiencing a mental health crisis. Intensive home treatment has been trialed in a number of countries, but it is not known how well suited it is to the needs of perinatal women. This qualitative study aimed to explore how women and practitioners experience the provision of intensive home treatment for perinatal mental health problems. Semi‐structured interviews were conducted with women who had received intensive home treatment in the perinatal period (n = 15), and focus groups were held with practitioners working in CRTs or in specialist perinatal mental health services (3 groups, n = 25). Data were analysed thematically. Women commonly found intensive home treatment problematic, experiencing it as intrusive and heavily risk‐focused, with poor staff continuity and little tailoring to the perinatal context. However, women valued emotional support when provided, particularly when it had a perinatal focus, sometimes based on practitioners sharing their own experiences. Some women also appreciated avoiding hospital admission, but choice was often limited. Practitioners reported a lack of perinatal training among CRT staff and described difficulties tailoring treatment to perinatal women's needs. Currently, intensive home treatment, as offered by CRTs, may not be well suited to women with perinatal mental health difficulties. Findings suggest a need to develop community crisis responses that are better tailored to the needs of this population. [ABSTRACT FROM AUTHOR]

Background: Physical inactivity is the fourth leading cause of mortality worldwide. Early childhood is a critical period when healthy behaviours can be instilled for a future active lifestyle. We explored community, societal and environmental factors affecting child and family physical activity and sought parent recommendations to support physical activity in families with young children. Methods: We interviewed 61 parents expecting a child or with a baby ≤12 months (35 mother and father paired interviews and 26 interviews with mothers only). We purposively sampled families for neighbourhood deprivation status (Townsend Index; 26 affluent; 35 deprived). We conducted thematic analysis of interview transcripts using Bronfenbrenner's socio‐ecological framework to guide interpretation. Results: We identified four themes: work family‐life balance; spaces for activity; beliefs and attitudes; and physical activity facilitators. We found that parents from deprived neighbourhoods were more likely to be underactive because of a complex web of community, social and personal factors which reduced motivation and hindered opportunity for physical activity. To increase knowledge and opportunity, respondents suggested 'help not tell' messages covering 'why', 'how' and 'where' information about physical activity, and using physical activity to support community engagement and social interaction. Conclusions: Recommendations from parents highlight effective communication about the importance of early child and family physical activity and improved community access to safe facilities and opportunities. Both parents need to be engaged in designing interventions to support greater physical activity and healthy behaviours which are relevant and achievable in individuals' lives. [ABSTRACT FROM AUTHOR]

Survivors of clerical institutional childhood abuse (ICA) experience poor mental health outcomes in adulthood. Resilience research with this group has focused on psychological adjustment and we know less about the factors across the social ecology that support positive adaptation, including the impact of migration. This study explores the influence of resilience‐enhancing factors across the social ecology on the mental wellbeing (MWB) of Irish emigrant survivors of ICA and how this compares with non‐migrant survivors. Fifty‐six survivors based in the UK and 46 based in Ireland completed a quantitative survey that assessed resilience‐potentiating resources and associations with MWB. A further nine participants, resident in the UK, engaged in a structured interview which aimed to further explain these quantitative data. Results indicate more resilience‐enhancing resources across the ecology of emigrant survivors of ICA. Personal skills and competencies, such as problem‐focused coping, altruism and defiance, and social inclusion were associated with MWB regardless of country of residence. For the migrant group, social identity not defined by institutional care facilitated social inclusion. Migration to the UK and informal instrumental support in the aftermath of institutional care were identified as key turning points towards resilience. Key Practitioner Messages: Multiple factors across the ecology influence the resilience of survivors of institutional childhood abuse (ICA).Resilience strategies for survivors of ICA are contextual and may appear maladaptive to practitioners unfamiliar with the cultural context of this abuse.For Irish emigrant survivors of ICA, problem‐focused coping, defiance, altruism, social inclusion, instrumental support and a social identity not defined by childhood abuse enhanced resilience.Resilience is dynamic and emerges over time for adult survivors of chronic childhood abuse. 'Explores the influence of resilience‐enhancing factors across the social ecology on the mental wellbeing... of Irish emigrant survivors of institutional childhood abuse' [ABSTRACT FROM AUTHOR]

Background: There is increasing recognition that dysphagia has significant implications for a person's psychological well‐being, social participation and quality of life (QOL). However, a paucity of research exists regarding the clinical management of this area. To inform future research and the development of appropriate and beneficial resources and guidelines, a better understanding of the current practice of speech and language therapists (SLTs) in this area would be useful. This information will highlight current challenges to clinical practice and the ongoing development needs of the profession, which are, as of yet, undocumented. Aims: To determine the practices of SLTs when addressing QOL issues in individuals with dysphagia, the beliefs of SLTs regarding the impact of dysphagia on QOL, the current trends in assessing and managing QOL in dysphagia, and if variations in beliefs and practices in this area exist. Methods & Procedures: An anonymous cross‐sectional, non‐experimental survey study was used. The survey consisted of 18 questions exploring participants' beliefs and opinions regarding dysphagia and QOL, current clinical practice in the area, perceived facilitators and barriers, and education, training and development needs. The survey was created on Survey Monkey and disseminated by e‐mail link to SLT professional bodies. Purposive and snowball sampling were used and participants self‐selected based on the information provided alongside the e‐mail link. Inclusion criteria for the study were a qualification in speech and language therapy, proficiency in the English language, and access to a computer with the internet. Outcomes & Results: A total of 148 SLTs working across the UK, Ireland and South Africa completed the survey. Over 90% of respondents believe that dysphagia has a negative impact on QOL, but only 25% are currently satisfied with the amount of clinical time they can dedicate to this area. Staffing, resources, a lack of best‐practice guidelines and disease‐specific QOL assessment tools were cited as contributing factors. A number of facilitators and barriers to best practice were also highlighted. Based on these findings, professional development actions for the future are suggested. Conclusions & Implications: SLTs believe they have an important role to play in supporting QOL issues in dysphagia. However, it is reported that the area is currently under‐developed, under‐resourced and under‐supported. Increased awareness raising of the role of SLT, alongside the development of best‐practice guidelines and disease‐specific QOL assessment tools, will enhance the quality of care that can be offered in this area. [ABSTRACT FROM AUTHOR]

The aim of this article was to establish registered nurses experiences of discussing sexuality with urinary catheter patients. A urinary catheter is used to provide drainage for those people who are unable to drain their bladder independently. Urinary catheters can cause issues with sex, sexuality and body image. This is a qualitative research study using thematic concept analysis to review data. The study used semi‐structured interviews that were audio‐taped during 2015. Nine community nurses participated in this study. Four themes emerged: the importance of the nurse–patient relationship, peer support and role models, maintaining professionalism and lack of experience, training and knowledge. The nurses reported barriers that they felt discouraged them from discussing sexuality, such as their own lack of knowledge, discussing sexuality with older people, nurse embarrassment and causing patient embarrassment. Nurses at all levels were reluctant to discuss issues relating to a patients' sexuality, and they were often uncomfortable doing so. Further training is required for nurses in supporting urinary catheter patients with sexual quality of life. Nursing assessments that allow sexuality to be assessed as part of any holistic nursing assessment are needed in practice. More acknowledgement of older urinary catheter users' sexual quality of life is required by nurses. It is the responsibility of the nurse to address any issues relating to a patients' sexuality with a urinary catheter as part of holistic care. [ABSTRACT FROM AUTHOR]

Background: Shunts, the main treatment for hydrocephalus, are problematic because they frequently malfunction. Detecting shunt malfunction is challenging because symptoms are similar to those of common childhood illnesses, particularly viral infections. Parents are responsible for identifying shunt malfunction and responding accordingly. Understanding parents' experiences has the potential to improve parent–professional collaboration and the management of the child's condition. Aim: To explore parents' experiences of living with a child with hydrocephalus and their decisions when they suspect shunt malfunction. Design and methods: A cross‐sectional interview‐based survey using qualitative methods was undertaken. Twenty‐five parents participated in the interviews. Framework approach underpinned data analysis. Findings: Three concepts, ‘uncertainty’, ‘developing expertise’, and ‘a normal life’, were identified. These concepts were dynamic in nature as parents learned through experience, adapted to changes in their child's health status and made decisions about their needs. Uncertainty because of the unpredictability and life‐threatening nature of shunt malfunction dominated parents' accounts. Through experience, parents learned to differentiate between symptoms that suggested a shunt problem and those of other childhood illnesses, but perceived their expertise was not always valued by health professionals or used to inform clinical decisions. Decisions about where or when to seek advice related to prior experiences of health‐care services and minimizing disruption for the whole family. Conclusion: Parents can recognize illness symptoms suggestive of shunt malfunction and want to collaborate with health professionals about the management of their child's condition. Collaboration with parents requires health professionals to listen to parents' concerns and value their experiences. [ABSTRACT FROM AUTHOR]

Aims and objectives: This article reports a study exploring experiences of the relatives of adult patients receiving extracorporeal membrane oxygenation (ECMO) within the CESAR trial. Background: Relatives of ECMO patients have undergone unique experiences which have not previously been addressed in the literature and thus may have different needs which may not be met by present practice. Design and methods: A grounded theory approach was adopted. In-depth unstructured interviews were conducted with family members of 10 surviving adult patients who had been randomized and received ECMO within the CESAR trial. Results: Relatives have a range of needs specific to the ECMO experience, these include the depth and positivity of information. Particular areas for support were concerning a perceived self-inflicted nature of illness, personal guilt, distance from home, receiving 'the call', weaning from sedation and transfer/discharge from the ECMO unit. Conclusions: Relatives would benefit from the opportunity to talk about their 'ECMO experiences' following the patient's recovery to enable them and their families to 'move on'. Relevance to clinical practice: Interventions need to be in place to follow-up relatives and patients to provide ongoing support to the family unit. [ABSTRACT FROM AUTHOR]

Background: In clinical weight-loss trials, the majority of those who lose weight will regain almost all of it within 5 years, yet there is limited evidence about effective strategies to support weight maintenance. The present study aimed to increase understanding of the experiences of those who have been successful at weight maintenance. Methods: This qualitative study used a phenomenological approach. Semistructured interviews were undertaken with a purposive sample of 10 participants who had maintained a minimum of 10% weight loss for at least 1 year. Interviews were transcribed and then analysed using a foundational thematic approach based on the Colaizzi method. Results: Participants believed that a more relaxed approach to weight management with realistic, long-term goals was more appropriate for long-term control. They had a strong reason to lose weight often with a medical trigger and had elicited support to help them. Most described the presence of saboteurs. Participants took personal responsibility for their weight management and were in tune with their nutrition and activity needs. Self-monitoring was a strategy commonly used to support this. They described the lack of positive reinforcement in the maintenance phase as a major difficulty. Conclusions: This small-scale study provides evidence to suggest the importance of a medical prompt to lose weight; planning for how to manage saboteurs and identifying methods of minimising the impact of a reduction in positive reinforcement. It reinforces the importance of many of the strategies known to support the weight-loss phase. [ABSTRACT FROM AUTHOR]