BackgroundThe negative impacts of the COVID-19 pandemic on grief outcomes are well documented. However, less is known about the evolving support needs of people bereaved during this time, what support they used and, crucially, how this support helped (or hindered) their coping, with applicability to contemporary bereavement support contexts.MethodsA longitudinal survey of people bereaved during the COVID-19 pandemic in the UK, over four time points: baseline (T1; n = 711), c. 8 (T2; n = 384), 13 (T3; n = 295), and 25 (T4; n = 185) months post-bereavement. Support needs and support use were assessed at all time points, with the perceived helpfulness of support explored qualitatively. Future support preferences were obtained in the final survey (T4). At T2-T4, participants completed the Traumatic Grief Inventory (TGI-SR) which measured symptoms of Prolonged Grief Disorder (PGD).ResultsFindings demonstrate high levels of support needs across multiple domains at baseline, with the highest needs relating to managing grief and feelings surrounding the loss (49.9–59.8% across four items), feelings of anxiety and depression (52.8%) and social isolation and loneliness (52.0%). Support needs decreased over time but persisted for those with indicated PGD. Participants primarily relied on support from family and friends, followed by online community and one-to-one support. Those with indicated PGD engaged with all types of support more frequently, yet a third (35.3%) did not access any formal bereavement or mental health support during the first year. The qualitatively described benefits of different support sources reflected their efficacy in meeting support needs, though inadequacies were highlighted, particularly from friends and family. Support preferences for future bereavements most commonly included family and friends, in-person one-to-one support and self-help resources.ConclusionFindings illustrate the varied emotional and social support needs of bereaved people and how these can be effectively addressed by informal and formal support types. However, dissatisfaction with support from friends and family and under-utilisation of formal support services amongst high-risk groups suggest significant unmet need and missed opportunities, with important implications for improving social/community support and access to a range of support options which reflect individual needs and preferences.
BACKGROUND:Androgen deprivation therapy (ADT) for prostate cancer causes substantial adverse effects. Despite consistent national and international guideline recommendations, supervised exercise is rarely integrated into care. We aimed to determine whether the STAMINA lifestyle intervention, embedded into cancer care, would improve cancer-specific quality of life and fatigue versus behaviourally Optimised Usual Care in men with prostate cancer in England. METHODS:STAMINA was a multicentre, randomised trial done across 15 UK National Health Service (NHS) trusts in England. Men on ADT for prostate cancer were eligible. Participants were randomly assigned (5:4) via computer-generated minimisation, stratified by age, ADT duration, chemotherapy or androgen receptor pathway inhibitor therapy, and radiotherapy, to the STAMINA lifestyle intervention or to Optimised Usual Care. Participants were aware of treatment allocation. The STAMINA lifestyle intervention comprised supervised aerobic and resistance exercise for 12 months, dietary advice, behavioural support, and complimentary gym membership. Optimised Usual Care comprised clinician training, educational materials, behavioural prompts, and safety-to-exercise checks. Primary outcomes were the Functional Assessment of Cancer Therapy-prostate (FACT-P) and the Functional Assessment of Chronic Illness Therapy-fatigue (FACIT-F) subscale at 12 months, analysed by intention to treat (according to randomised treatment). This trial is registered with ISRCTN (ISRCTN46385239), and recruitment is complete. FINDINGS:Between Jan 20, 2022, and June 12, 2023, 700 men were randomly assigned to STAMINA lifestyle intervention (n=389) or Optimised Usual Care (n=311). Median age was 71·6 years (IQR 66·3-76·0), and 680 (97%) of 700 participants were White. Primary outcome data were available for 345 (89%) of 389 participants in the STAMINA lifestyle intervention group and 251 (81%) of 311 in the Optimised Usual Care group. The STAMINA lifestyle intervention was superior to Optimised Usual Care in terms of FACT-P score (adjusted mean difference 4·5, 97·232% CI 1·7-7·2; p=0·0004) and FACIT-F score (1·9, 0·4-3·4; p=0·0068). Three intervention-related serious adverse events occurred in the STAMINA lifestyle intervention group (transient loss of consciousness, leg pain or weakness, and back pain); all participants recovered. No treatment-related deaths occurred. INTERPRETATION:The STAMINA lifestyle intervention meets best practice guidelines, can be implemented in NHS trusts in England, and offers clinicians a clear basis for identification and prescription of a supervised exercise and dietary advice intervention to mitigate negative effects associated with ADT. FUNDING:National Institute for Health Research.
People bereaved during the Covid-19 pandemic experienced profoundly altered death, mourning and grieving practices. Worsened grief outcomes have been widely reported but less is known about how people coped during these unprecedented times. Using reflexive thematic analysis critically informed by theories of biographical disruption and meaning-making, we analysed 39 interview transcripts from 24 people bereaved during the pandemic in the UK. We describe five core domains of disruption and associated meaning making: difficult and traumatic death experiences; disrupted mourning practices; loss of relationship and sense of self; social relationships, isolation and support; and developing understandings of grief. While the multi-dimensionality and severity of the disruption experienced was striking, so too were the ways in which people reappraised and reconstructed more positive and coherent accounts, often in relational ways, helping to explain their varied grief and coping experiences. Findings demonstrate the utility of critically combining these theoretical frameworks for conceptualising and contextualising grieving during 'extraordinary', as well as more 'ordinary' times. Implications are identified for minimising the disruption inherent in stressful bereavement circumstances, whilst also supporting people to reconcile and make meaning in their experiences.
BACKGROUND:STAMINA is a randomised controlled trial of a complex lifestyle intervention incorporating exercise prescription into a prostate cancer care pathway. The 12-month intervention aims to improve disease specific quality of life and reduce fatigue of people receiving androgen deprivation therapy for prostate cancer. Previously published work outlines the development of the trial intervention which included recruitment and training of healthcare professionals and exercise professionals to embed a lifestyle intervention and referral pathway within NHS prostate cancer care. METHODS:A mixed-methods process evaluation, embedded within the STAMINA trial, will be conducted to assess quantitative process outcomes (recruitment, intervention reach, dose and fidelity), together with up to 45 qualitative interviews with patients, healthcare professionals and exercise professionals. Interviews will explore the perceptions and experiences of those involved in the STAMINA trial, and the organisational implications of embedding and sustaining the intervention. Quantitative process data will be analysed descriptively. Qualitative interview data will be analysed before trial outcomes are known using an inductive and deductive approach. Findings from the different elements will be reported separately and then integrated to inform interpretation of trial outcomes. CONCLUSION:This process evaluation protocol provides a detailed description of relevant data collection methods and trial processes of the STAMINA randomised controlled trial which will allow us to determine whether the intervention can be delivered with fidelity, is acceptable to patients, healthcare professionals and exercise professionals, and understand the implications for embedding and sustaining the intervention in the routine care. TRIAL REGISTRATION:ISRCTN 46385239, registered on 30/07/2020. Cancer Research UK 17002, retrospectively registered on 24/08/2022.
Abstract Background The National Institute for Health and Care Excellence (NICE) recommend that men with prostate cancer on androgen deprivation therapy (ADT) are offered twice weekly supervised aerobic and resistance exercise to address side effects of treatment. However, supervised exercise is not routinely offered in standard clinical practice. The STAMINA programme grant for applied research (PGfAR) has been designed to evaluate whether this recommendation can be delivered within standard NHS care. This paper describes how future implementation of NICE recommendations within the NHS was explored during complex intervention development to enable evaluation of a lifestyle intervention. Methods Two stakeholder workshops were conducted to explore factors pertinent to future implementation of the STAMINA Lifestyle intervention (SLI). Normalisation Process Theory (NPT) provided the theoretical framework for discussion and analysis. Stakeholder workshop 1 focussed on intervention coherence and buy-in. Stakeholder workshop 2 explored barriers and facilitators for embedding SLI into the context of the NHS, with delivery partner Nuffield Health, in the future. Results Workshops were attended by healthcare professionals (n = 16), exercise professionals (n = 17), members of public involved in PPI including patients (n = 12), health psychologists (n = 2), clinical commissioners (n = 4), cancer charities (n = 3), a cancer alliance (n = 1) and health economist (n = 1). Stakeholders agreed that professional training packages should emphasise the uniqueness of the SLI and underpinning theory and evidence (Coherence). To further engagement, the use of STAMINA champions and information about the delivery partner were recommended to enhance confidence and knowledge (Cognitive participation). Furthermore, a simple communication (Collective Action) and progress reporting system (Reflexive Monitoring) was suggested to fit into existing infrastructure within the NHS and community partner. Conclusions Application of NPT within two stakeholder workshops enhanced complex intervention development. Context-specific strategies to support implementation of SLI within the context of a trial were proposed, sensed-checked, and considered acceptable. The organisational implications of embedding and sustaining the intervention in preparation for wider NHS roll-out were considered (if proven to be effective) and will be explored in the qualitative component of a process evaluation underpinned by NPT. Trial registration (ISRCTN: 46385239 ). Registered on July 30, 2020.
Background:Emollients are recommended for children with eczema (atopic eczema/dermatitis). A lack of head-to-head comparisons of the effectiveness and acceptability of the different types of emollients has resulted in a 'trial and error' approach to prescribing. Objective:To compare the effectiveness and acceptability of four commonly used types of emollients for the treatment of childhood eczema. Design:Four group, parallel, individually randomised, superiority randomised clinical trials with a nested qualitative study, completed in 2021. A purposeful sample of parents/children was interviewed at ≈ 4 and ≈ 16 weeks. Setting:Primary care (78 general practitioner surgeries) in England. Participants:Children aged between 6 months and 12 years with eczema, of at least mild severity, and with no known sensitivity to the study emollients or their constituents. Interventions:Study emollients sharing the same characteristics in the four types of lotion, cream, gel or ointment, alongside usual care, and allocated using a web-based randomisation system. Participants were unmasked and the researcher assessing the Eczema Area Severity Index scores was masked. Main outcome measures:The primary outcome was Patient-Oriented Eczema Measure scores over 16 weeks. The secondary outcomes were Patient-Oriented Eczema Measure scores over 52 weeks, Eczema Area Severity Index score at 16 weeks, quality of life (Atopic Dermatitis Quality of Life, Child Health Utility-9 Dimensions and EuroQol-5 Dimensions, five-level version, scores), Dermatitis Family Impact and satisfaction levels at 16 weeks. Results:A total of 550 children were randomised to receive lotion (analysed for primary outcome 131/allocated 137), cream (137/140), gel (130/135) or ointment (126/138). At baseline, 86.0% of participants were white and 46.4% were female. The median (interquartile range) age was 4 (2-8) years and the median Patient-Oriented Eczema Measure score was 9.3 (SD 5.5). There was no evidence of a difference in mean Patient-Oriented Eczema Measure scores over the first 16 weeks between emollient types (global p = 0.765): adjusted Patient-Oriented Eczema Measure pairwise differences - cream-lotion 0.42 (95% confidence interval -0.48 to 1.32), gel-lotion 0.17 (95% confidence interval -0.75 to 1.09), ointment-lotion -0.01 (95% confidence interval -0.93 to 0.91), gel-cream -0.25 (95% confidence interval -1.15 to 0.65), ointment-cream -0.43 (95% confidence interval -1.34 to 0.48) and ointment-gel -0.18 (95% confidence interval -1.11 to 0.75). There was no effect modification by parent expectation, age, disease severity or the application of UK diagnostic criteria, and no differences between groups in any of the secondary outcomes. Median weekly use of allocated emollient, non-allocated emollient and topical corticosteroids was similar across groups. Overall satisfaction was highest for lotions and gels. There was no difference in the number of adverse reactions and there were no significant adverse events. In the nested qualitative study (n = 44 parents, n = 25 children), opinions about the acceptability of creams and ointments varied most, yet problems with all types were reported. Effectiveness may be favoured over acceptability. Parents preferred pumps and bottles over tubs and reported improved knowledge about, and use of, emollients as a result of taking part in the trial. Limitations:Parents and clinicians were unmasked to allocation. The findings may not apply to non-study emollients of the same type or to children from more ethnically diverse backgrounds. Conclusions:The four emollient types were equally effective. Satisfaction with the same emollient types varies, with different parents/children favouring different ones. Users need to be able to choose from a range of emollient types to find one that suits them. Future work:Future work could focus on how best to support shared decision-making of different emollient types and evaluations of other paraffin-based, non-paraffin and 'novel' emollients. Trial registration:This trial is registered as ISRCTN84540529 and EudraCT 2017-000688-34. Funding:This project was funded by the National Institute for Health and Care Research (NIHR) Health Technology Assessment programme (HTA 15/130/07) and will be published in full in Health Technology Assessment; Vol. 27, No. 19. See the NIHR Journals Library website for further project information.
Introduction The COVID-19 pandemic has had a huge impact on all aspects of life. The high number of deaths and bereavements increased demand on already stretched services, whilst the unique circumstances caused by enforced social distancing meant that people bereaved at this time faced many additional challenges and potentially problematic grief trajectories. Aims To explore in depth people’s lived experiences of bereavement during the Covid-19 pandemic, their adaptation and coping during this time, and the effect of informal and formal sources of bereavement support . Methods Semi-structured longitudinal telephone interviews were conducted with people bereaved during the first 10 months of the pandemic (March to December 2020), purposively sampled from a cohort of survey participants. Interview transcripts were analysed thematically. Results 24 participants (19 female; 5 men) took part in a first interview and 15 in a follow up interview, approximately four months later. Five major themes were identified: End of life experiences; Funerals and memorialisation; Grieving and psychological impacts; Coping and adaptation and Sources of support. Many challenges relating to the pandemic context were identified, including restrictions to end of life and memorialisation arrangements, dealing with personal affairs, and lack of support. Such experiences negatively impacted individual grieving and wellbeing, in particular feelings of isolation and guilt surrounding lack of contact with the deceased. Participants experienced difficulties accessing services, and sometimes received support that was not appropriate for their particular situations and needs. Despite these difficulties, some people demonstrated remarkable resilience, and ability to cope and find meaning. Conclusions People bereaved in the COVID-19 pandemic have navigated grief and bereavement through exceptionally challenging circumstances, often lacking the informal and formal support needed to help them cope. Impact These insights can be used to help improve the care and support provided to bereaved people throughout their bereavement journeys.
Introduction Millions became bereaved during the pandemic, with many facing challenges accessing support. Aims To describe the use and helpfulness of different types of support in a cohort of people bereaved during the pandemic in the UK. Methods A longitudinal survey of people bereaved during the pandemic over four time points. At 7- and 13-months post-bereavement (T2 and T3), participants rated the helpfulness of support used and described how they had been helped by this support. Results 420 participants completed at least one follow-up survey (T2, T3 or both). Most respondents were female (88.3%) and had lost a parent (57.6%) or partner (24.3%), with 3.3% from a minoritised ethnic background. Support from family and friends, reported by 89.3% of participants, was rated as ‘quite helpful’ (mean rating 4.3 out of 5), and included help with practical tasks, expressing feelings/sharing grief, remembering, feeling cared for and less isolated. The most commonly used form of other support was 1:1 support (e.g. counselling), used by 40.5% of participants, with an average helpfulness rating of 4.1, helping participants feel listened to and process their grief. Online community support, used by 31.0% of participants, was also rated ‘quite helpful’ (3.9), enabling sharing with similar others, feeling understood and less alone. Informal and formal bereavement groups were rated as similarly helpful (4.2) while helplines and specialist mental health support were slightly less helpful (3.6) (used by 9.3%, 4.8%, 7.1% and 4.5% of participants, respectively). Conclusions Results demonstrate the perceived benefits and helpfulness of different forms of bereavement support used during the pandemic. Impact These findings highlight the value of informal as well as formal support, particularly bereavement counselling. Policy makers must attend to the foundational and second tiers of the public health model of bereavement support, supporting communities as well as services.
Introduction Many children and young people have experienced the death of close family members during the Covid-19 pandemic, whilst also facing unprecedented disruption to their daily routines and support networks. Aims This study investigated their bereavement experiences and support needs as described by their parents/guardians. Method We disseminated a UK-wide online survey through social media platforms and community/charitable organisations, capturing the grief experiences of adults bereaved during the pandemic. Parent/guardian free-text responses (N=106) to a question on their child(ren)'s support needs were analysed thematically. Results Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic specific challenges include the impacts of not being able to be with the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective coping and grief-related communication within families, but some parents also described difficulties relating to their own grief and children's pre-existing mental health problems. The important role of schools and bereavement organisations in providing specialist support was valued, but there was evidence of unmet need and difficulties accessing bereavement and mental health support. Conclusion Children and young people have faced additional strains and challenges associated with pandemic bereavement, with some requiring specialist bereavement or mental health support. Impact This study provides insight into how children and young people experienced the death of a close family member during the pandemic. We recommend initiatives that facilitate open communication within family, peer and school settings, adequate resourcing of school and community-based specialist services, and increased information and signposting to support.
During the COVID-19 pandemic, many children and young people have experienced the death of close family members, whilst also facing unprecedented disruption to their lives. This study aimed to investigate the experiences and support needs of bereaved children and young people from the perspective of their parents and guardians. We analysed cross-sectional qualitative free-text data from a survey of adults bereaved in the UK during the pandemic. Participants were recruited via media, social media, national associations and community/charitable organisations. Thematic analysis was conducted on free text data collected from parent/guardian participants in response to a survey question on the bereavement experiences and support needs of their children. Free-text data from 104 parent/guardian participants was included. Three main themes were identified: the pandemic-related challenges and struggles experienced by children and young people; family support and coping; and support from schools and services. Pandemic-challenges include the impacts of being separated from the relative prior to their death, isolation from peers and other family members, and disruption to daily routines and wider support networks. Examples were given of effective family coping and communication, but also of difficulties relating to parental grief and children’s existing mental health problems. Schools and bereavement organisations’ provision of specialist support was valued, but there was evidence of unmet need, with some participants reporting a lack of access to specialist grief or mental health support. Children and young people have faced additional strains and challenges associated with pandemic bereavement. We recommend resources and initiatives that facilitate supportive communication within family and school settings, adequate resourcing of school and community-based specialist bereavement/mental health services, and increased information and signposting to the support that is available.
Resource-use measurement is essential for assessing cost-effectiveness within trial-based economic evaluations. ModRUM, a generic, modular resource-use measure designed for collecting self-report healthcare resource-utilisation data has recently been rigorously developed in the UK (bristol.ac.uk/modrum). We aimed to develop bolt-on modules for measuring informal care (i.e. unpaid care provided by relatives, friends or the community), social care and personal expenses.
IntroductionThe Covid-19 pandemic has been a mass bereavement event, causing major disruption to end-of-life, grieving and coping processes. Based on their Dual Process Model (DPM), Stroebe and Schut have identified pandemic-specific risk factors for poor bereavement outcomes and categorised these in terms of disruptions to loss-oriented and restoration-oriented coping processes which grieving people naturally oscillate between. Loss-oriented coping involves focussing on one’s loved one and their death, while restoration-oriented coping involves continuing with daily life and distracting oneself from one’s grief.AimsTo explore and describe bereavement experiences during the pandemic, relating our findings to the constructs of the DPM.MethodTwo independent online surveys were disseminated UK-wide via social media platforms and community and charitable organisations. They captured end-of-life and bereavement experiences (to all causes of death) from March 2020 to January 2021. Free-text data were analysed thematically, using the DPM as an analytic lens.ResultsSix main themes were identified: troubled and traumatic deaths;disrupted mourning, memorialisation and difficulties in death-related administration;mass bereavement, media and societal responses and the ongoing threat of the virus;grieving and coping (alone and with others);workplace and employment difficulties;and accessing health and social care support. Examples of loss-oriented stressors were being unable to visit or say goodbye and restricted funeral and memorialisation practices, leading to guilt and anger. Restoration-oriented stressors included severely restricted social networks and support systems, which affected peoples’ ability to cope.ConclusionThese results highlight significant disruptions to end-of-life, death and mourning practices, as well as usual coping mechanisms and support systems, during the Covid-19 pandemic. The DPM provides a useful framework for conceptualizing the additional challenges associated with pandemic bereavement and their impact on grieving and mental health.ImpactRecommendations are made for statutory, private and third sector organisations for improving experiences of people bereaved during this and future pandemics.
Background: Voluntary and community sector bereavement services are central to bereavement support in the UK. Aim: To determine service providers' perspectives on access to their support before and during the COVID-19 pandemic. Design: Mixed methods study using an explanatory sequential design: (1) Cross-sectional online survey of UK bereavement services; (2) Qualitative interviews with staff and volunteers at selected services. Settings/participants: 147 services participated in the survey; 24 interviews were conducted across 14 services. Results: 67.3% of services reported there were groups with unmet needs not accessing their services before the pandemic; most frequently people from minoritised ethnic communities (49%), sexual minority groups (26.5%), deprived areas (24.5%) and men (23.8%). Compared with before the pandemic, 3.4% of services were seeing more people from minoritised ethnic groups, while 6.1% were seeing fewer. 25.2% of services did not collect ethnicity data. Qualitative findings demonstrated the disproportionate impact of the pandemic on minoritised ethnic communities, including disruption to care/mourning practices, and the need for culturally appropriate support. During the pandemic outreach activities were sometimes deprioritised; however, increased collaboration was also reported. Online provision improved access but excluded some. Positive interventions to increase equity included collecting client demographic data; improving outreach, language accessibility and staff representation; supporting other professionals to provide bereavement support; local collaboration and co-production. Conclusions: Service providers report inequities in access to bereavement support. Attention needs to be paid to identifying, assessing and meeting unmet needs for appropriate bereavement support. Identified positive interventions can inform service provision and research.
Background: The COVID-19 pandemic has been a devastating, mass bereavement event characterised by high levels of disruption to end-of-life, grieving and coping processes. Quantitative evidence is emerging on the effects of the pandemic on grief outcomes, but rich qualitative evidence on the lived experiences of people bereaved during these times is lacking. Methods: We analysed qualitative data from two independent UK-wide online surveys to describe the experiences of 881 people bereaved during the pandemic. We analysed the data in two phases, conducting an inductive thematic analysis and then applying Stroebe and Schut’s Dual Process Model (DPM) and concepts of loss-oriented and restoration-oriented coping (1999; 2010) as an analytic lens to further contextualise and interpret the data. Results: We identified six main themes: troubled deaths; mourning, memorialisation and death administration; mass bereavement, the media and the ongoing threat of the pandemic; grieving and coping; work and employment; and support from the health and social care system. Examples of loss-oriented stressors included being unable to visit and say goodbye at the end of life and restricted funeral and memorialisation practices. Associated reactions were feelings of guilt, anger, and problems accepting the death and beginning to grieve. Examples of restoration-oriented stressors and reactions were severely curtailed support-systems and social/recreational activities, which impacted people’s ability to cope. Conclusion: Study results demonstrate the exceptionally difficult sets of experiences associated with pandemic bereavement, and the utility of the DPM for conceptualising these additional challenges and their impacts on grieving. Our analysis builds and expands on previous use of the DPM in explicating the impact of the pandemic on bereavement. We make recommendations for statutory, private and third sector organisations for improving the experiences of people bereaved during and following this and future pandemics.
Background To our knowledge, there are no trials comparing emollients commonly used for childhood eczema. We aimed to compare the clinical effectiveness and safety of the four main emollient types: lotions, creams, gels, and ointments. Methods We did a pragmatic, individually randomised, parallel group, phase 4 superiority trial in 77 general practice surgeries in England. Children aged between 6 months and 12 years with eczema (Patient Orientated Eczema Measure [POEM] score >2) were randomly assigned (1:1:1:1; stratified by centre and minimised by baseline POEM score and age, using a web-based system) to lotions, creams, gels, or ointments. Clinicians and parents were unmasked. The initial emollient prescription was for 500 g or 500 mL, to be applied twice daily and as required. Subsequent prescriptions were determined by the family. The primary outcome was parent-reported eczema severity over 16 weeks (weekly POEM), with analysis as randomly assigned regardless of adherence, adjusting for baseline and stratification variables. Safety was assessed in all randomly assigned participants. This trial was registered with the ISRCTN registry, ISRCTN84540529. Findings Between Jan 19, 2018, and Oct 31, 2019, 12 417 children were assessed for eligibility, 550 of whom were randomly assigned to a treatment group (137 to lotion, 140 to cream, 135 to gel, and 138 to ointment). The numbers of participants who contributed at least two POEM scores and were included in the primary analysis were 131 in the lotion group, 137 in the cream group, 130 in the gel group, and 126 in the ointment group. Baseline median age was 4 years (IQR 2-8); 255 (46%) participants were girls, 295 (54%) were boys; 473 (86%) participants were White; and the mean POEM score was 9.3 (SD 5.5). There was no difference in eczema severity between emollient types over 16 weeks (global p value=0.77), with adjusted POEM pairwise differences of: cream versus lotion 0.42 (95% CI -0.48 to 1.32), gel versus lotion 0.17 (-0.75 to 1.09), ointment versus lotion -0.01 (-0.93 to 0.91), gel versus cream -0.25 (-1.15 to 0.65), ointment versus cream -0.43 (-1.34 to 0.48), and ointment versus gel -0.18 (-1.11 to 0.75). This result remained unchanged following multiple imputation, sensitivity, and subgroup analyses. The total number of adverse events did not significantly differ between the treatment groups (lotions 49 [36%], creams 54 [39%], gels 54 [40%], and ointments 48 [35%]; p=0.79), although stinging was less common with ointments (12 [9%] of 138 participants) than lotions (28 [20%] of 137), creams (24 [17%] of 140), or gels (25 [19%] of 135). Interpretation We found no difference in effectiveness between the four main types of emollients for childhood eczema. Users need to be able to choose from a range of emollients to find one that they are more likely to use effectively. Copyright (C) 2022 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license.
Background The Covid-19 pandemic has caused c.131,000 excess deaths in the UK to date. During the pandemic, voluntary and community sector (VCS) bereavement services have played a central role in supporting the bereaved. We describe the impact on and response of these services to inform service development and policy. Methods Mixed-methods explanatory sequential design in two phases: (1) Online survey (March-May 2021) of VCS bereavement services in the UK, disseminated via national organisations, networks and social media; (2) Qualitative semi-structured telephone interviews with staff/volunteers at case study VCS bereavement services (June-December 2021). Interviews explored challenges/innovation in bereavement support during the pandemic, with transcripts analysed using thematic analysis. Results 147 organisations participated in the survey; 53% were regional, 16% UK-wide. 36% were hospice/palliative care services, 15% national bereavement charities/Non-Governmental Organisations; 12% local bereavement charities. During this period of the pandemic referrals increased for 46% of organisations and decreased for 35%. 78.2% changed services and 51.7% introduced new services (such as online/telephone support). 24 people across 14 organisations were interviewed. Challenges encountered included: rapidly setting up online/telephone provision and consequent changes to the therapeutic encounter; developing new policies/procedures; coping with fluctuating demand and clients' complex grief responses; supporting staff/volunteers working from home; and a loss of funding. Nevertheless, innovation and positive impacts were reported including: modernisation of services; expanding access for some groups (younger people, men, rural communities); increased cohesion amongst staff; and instigation of local collaborations. Conclusions UK bereavement services rapidly transformed during the pandemic, despite significant challenges. Important lessons have been learned and providers generally advocate a blended approach for future provision of bereavement support. To ensure positive changes are retained, the experiences and acceptability of new/adapted services among clients and staff require further investigation, while services' ability to meet demand requires sustained or additional resources.
Background Eczema affects one in five children in the UK. Regular application of emollients is routinely recommended for children with eczema. There are four main emollient types, but no clear evidence of which is best. The current ‘trial and error’ approach to find suitable emollients can be frustrating for parents, children, and clinicians. Aim To identify how parents and children experience and evaluate emollients. Design and setting Qualitative interview study, nested within a primary care trial of emollients (Best Emollients for Eczema [BEE] trial). Method Semi-structured interviews with children with eczema and their parents were conducted. Participants were purposively sampled on emollient type (lotion, cream, gel, or ointment), age, and eczema severity. Results Forty-four parents were interviewed, with children participating in 24 of those interviews. There was no clear preference for any one emollient type. The strongest theme was the variation of experience in each of the four types. Participants focused on thickness and absorbency, both positively and negatively, to frame their evaluations. Effectiveness and acceptability were both considered when evaluating an emollient but effectiveness was the primary driver for continued use. For some, participating in the trial had changed their knowledge and behaviour of emollients, resulting in use that was more regular and for a longer duration. Conclusion There is no one emollient that is suitable for everyone, and parents/children prioritise different aspects of emollients. Future research could evaluate decision aids and/or tester pots of different types, which could enable clinicians and parents/children to work collaboratively to identify the best emollient for them.
BackgroundTwice-weekly supervised aerobic and resistance exercise for 12weeks reduces fatigue and improves quality of life in men on Androgen Deprivation Therapy for prostate cancer. Despite the National Institute for Health and Care Excellence (NICE) proposing this as standard of care, it does not routinely take place in practice. Healthcare professionals are in a prime position to deliver and integrate these recommendations. A change in the behaviour of clinical teams is therefore required.In this paper, we describe the development of a training package for healthcare professionals using theory and evidence to promote delivery of such recommendations as standard care.MethodsThe intervention development process was guided by the Medical Research Council guidance for complex interventions and the Behaviour Change Wheel. Target behaviours were identified from the literature and thirty-five prostate cancer care healthcare professionals (including oncologists, consultant urologists, clinical nurse specialists, physiotherapists, general practitioners and commissioners) were interviewed to understand influences on these behaviours. The Theoretical Domains Framework was used to identify theoretical constructs for change. Behaviour change techniques were selected based on theory and evidence and were translated into intervention content. The intervention was refined with the input of stakeholders including healthcare professionals, patients, and exercise professionals in the form of rehearsal deliveries, focus groups and a workshop.ResultsSeven modifiable healthcare professional target behaviours were identified to support the delivery of the NICE recommendations including identifying eligible patients suitable for exercise, recommending exercise, providing information, exercise referral, providing support and interpret and feedback on progress. Ten domains from the Theoretical Domain's Framework were identified as necessary for change, including improving knowledge and skills, addressing beliefs about consequences, and targeting social influences. These were targeted through twenty-two behaviour change techniques delivered in a half-day, interactive training package. Based on initial feedback from stakeholders, the intervention was refined in preparation for evaluation.ConclusionsWe designed an intervention based on theory, evidence, and stakeholder feedback to promote and support the delivery of NICE recommendations. Future work will aim to test this training package in a multi-centre randomised trial. If proven effective, the development and training package will provide a template for replication in other clinical populations, where exercise has proven efficacy but is insufficiently implemented.