Charity Partners Research Articles

Childhood Health and Educational outcomes afteR perinatal Brain injury (CHERuB): protocol for a population-matched cohort study

IntroductionOver 3000 infants suffer a brain injury around the time of birth every year in England. Although these injuries can have important implications for children and their families, our understanding...

"How I would like AI used for my imaging": children and young persons' perspectives.

Artificial intelligence (AI) tools are becoming more available in modern healthcare, particularly in radiology, although less attention has been paid to applications for children and young people. In the development of these, it is critical their views are heard. A national, online survey was publicised to UK schools, universities and charity partners encouraging any child or young adult to participate. The survey was "live" for one year (June 2022 to 2023). Questions about views of AI in general, and in specific circumstances (e.g. bone fractures) were asked. One hundred and seventy-one eligible responses were received, with a mean age of 19 years (6-23 years) with representation across all 4 UK nations. Most respondents agreed or strongly agreed they wanted to know the accuracy of an AI tool that was being used (122/171, 71.3%), that accuracy was more important than speed (113/171, 66.1%), and that AI should be used with human oversight (110/171, 64.3%). Many respondents (73/171, 42.7%) felt AI would be more accurate at finding problems on bone X-rays than humans, with almost all respondents who had sustained a missed fracture strongly agreeing with that sentiment (12/14, 85.7%). Children and young people in our survey had positive views regarding AI, and felt it should be integrated into modern healthcare, but expressed a preference for a "medical professional in the loop" and accuracy of findings over speed. Key themes regarding information on AI performance and governance were raised and should be considered prior to future AI implementation for paediatric healthcare. Artificial intelligence (AI) integration into clinical practice must consider all stakeholders, especially paediatric patients who have largely been ignored. Children and young people favour AI involvement with human oversight, seek assurances for safety, accuracy, and clear accountability in case of failures. Paediatric patient's needs and voices are often overlooked in AI tool design and deployment. Children and young people approved of AI, if paired with human oversight and reliability. Children and young people are stakeholders for developing and deploying AI tools in paediatrics.

Randomised placebo-controlled trial of antenatal corticosteroids for planned birth in twins (STOPPIT-3): study protocol

IntroductionThe aim of the STOPPIT-3 study is to determine the clinical and cost effectiveness of antenatal corticosteroids (ACS) prior to planned birth of twins in a multicentre placebo-controlled trial with...

‘The current mental health status of children and young people with JIA, and their wider family’: a charity partner collaboration survey

BackgroundThis paper presents insight into the scale of mental health concerns for families who have a child or young person with a diagnosis of Juvenile Idiopathic Arthritis (JIA) living in any of the four nations of the United Kingdom (UK). The study’s objective is to share the current experiences of those that responded to a charity survey and consider future work to improve mental health support.MethodsThis work was initiated and led by five UK charity partner organisations working with families affected by JIA. Parents/carers of a child or young person with JIA, and young people with JIA, submitted self-completion online questionnaires. The questionnaire asked 19 core questions, with a focus on the mental health impact of having and living with a JIA diagnosis. Questionnaires were delivered via charity partner UK-wide mailing lists and social media.ResultsQuestionnaire were completed by 291 participants over a 3-week period in February 2022. The majority of respondents were parents (229, 79%), 103 children had been diagnosed for over six years (35%), and 131 (45%) received shared care between paediatric rheumatology centres. In total, 168 (59%) children and young people with JIA had received, were currently receiving or were waiting for mental health support. Parents reported that their child’s diagnosis impacted their own mental health (218, 82%). Children and young people reported never being offered mental health support during appointments for JIA (157, 54%), and 71 (50%) of these had never received support.ConclusionChildren and young people with JIA have significant mental health sequelae from their diagnosis. Our findings found that nearly 60% of our respondents have had or are requiring mental health support, with significant numbers of parents/carers reporting difficulties in accessing care for their child’s mental health or their own mental health, due to their child’s diagnosis. This unique collaborative charity-led study, illustrates the importance of timely and accessible mental health support. Further work is needed to understand why best practice guidance for mental health support is not being met consistently and to identify how to embed it into standard rheumatology care.

An exploratory study on support for caregivers of people with vision impairment in the UK.

PurposeMany of the UK's 2.5 million individuals living with vision loss receive support from relatives or friends (so‐called ‘informal caregivers’). However, there is limited understanding of how caregivers of people with visual impairment (PVI) are, or feel, supported by UK healthcare/statutory services and charities. This exploratory study was conducted to explore caregivers' experiences and their suggestions for enhancing support.MethodsParticipants self‐identifying as UK‐based caregivers of PVI (N = 100) volunteered to undertake an online survey, distributed through charity partners. The survey was comprised of the Client Satisfaction Questionnaire‐8 (CSQ‐8, a validated, self‐report measure of satisfaction with support services), Likert‐type questions and two open‐ended, free‐text questions. Interview participants (N = 22) were then selected from survey respondents, and semi‐structured interviews were conducted to focus on caregivers' ideas for improving support. The Framework Method was used for inductive analysis of the free‐text question responses and interview data.ResultsThe mean (SD) CSQ‐8 score was 21.60 (7.2), with no significant differences by demographic, relationship or vision‐related factors, likely limited by the small subgroup sizes. Qualitative data demonstrated the heterogeneity of participating caregivers' experiences, highlighting the importance of personalised support for caregivers. Many participants advocated enhancing informational, practical, emotional and social support for caregivers, and stressed the importance of accessible services and consistent points of contact to turn to for support and advice.ConclusionsAlthough our sample was arguably better connected to support services than the general caregiver population, this study identified concrete suggestions to improve practical, emotional and peer support for caregivers of PVI.

The Childhood Cancer Diagnosis (CCD) Study: a UK observational study to describe referral pathways and quantify diagnostic intervals in children and young people with cancer

IntroductionChildhood cancer is diagnosed in 400 000 children and young people (CYP) aged 0–19 years worldwide annually. In the UK, a child’s cumulative cancer risk increases from 1 in 4690...

What support do caregivers of people with visual impairment receive and require? An exploratory study of UK healthcare and charity professionals’ perspectives

BackgroundPrevious research has established that some informal caregivers (relatives/friends) of people with visual impairment (PVI) may require support themselves. However, there is limited understanding of how healthcare services and sight charities in the UK currently support caregivers. This study was therefore conducted to explore what support, information, and advice healthcare and charity professionals (HCCPs) currently provide for caregivers, and which additional support HCCPs would recommend in order to benefit caregivers.MethodsHCCPs filled out an online survey, distributed among UK-based professional bodies and charity partners. Of 104 individuals who consented to participate, 68 (65%) HCCPs completed the survey in September–November 2019. Participants responded to Likert-type questions about how they interact with and support caregivers of PVI. Thirty-eight (56%) participants provided responses to open-ended questions about improving support for caregivers; qualitative analysis was conducted using the Framework Method.ResultsThe survey showed that caregiver support activities most commonly undertaken related to onward signposting (90% (95% CI: 82–97%) of participants), or providing information about low vision aids and adaptations (85% (95% CI: 77–94%)), compared to activities focused on broader caregiver wellbeing. In open-ended responses, HCCPs highlighted the difficulties caregivers face in navigating an under-resourced and complex system. They recommended improving coordination and accessibility of information, as well as provision of emotional support and tangible assistance such as respite care and financial support.ConclusionsThe study suggests that HCCPs perceive significant unmet needs among caregivers of PVI, and would welcome further resources, information, and training to support caregivers.

'Oh no, not a group!' The factors that lonely or isolated people report as barriers to joining groups for health and well-being.

Belonging to groups can significantly affect people's health and well-being for the better ('the social cure') or worse ('the social curse'). Encouraging people to join groups is a central component of the Social Prescribing movement; however, not everyone who might benefit from Social Prescribing aspires to participating in groups. This study aims to identify what barriers are preventing people from experiencing the associated health and well-being benefits of group belonging. Semi-structured interviews analysed using reflexive thematic analysis. Participants were 11 white British people (aged 48-86), 1 male and 10 female, recruited by a charity partner of a Social Prescribing project. The themes derived from the interviews are as follows: (1) 'The dread, the fear of being in a group': When groups do not meet needs; (2) 'I can remember as quite a young child backing out of things': Accumulative barriers over the lifetime, and (3) 'I'm singing away and feeling terribly miserable': the challenges of fitting in with others in groups. The themes reflect how people can feel deterred from social interaction, which interferes with their ability to derive a sense of belonging or shared identity associated with the 'social cure'. A key challenge for Social Prescribing is to meet the social needs of people disinclined to join groups; groups can be detrimental to health and well-being if there are barriers to integration. Alternative ways of structuring groups or activities may be more effective and can still avail of the belonging and identity associated with 'the social cure'.

Art boxes supporting parents and infants to share creative interactions at home: an art-based response to improve well-being during COVID-19 restrictions

ObjectivesThis article seeks to demonstrate the impact of distributing boxes of art resources and guided activities for vulnerable parents and infants to do together at home. Study designDesigned in conjunction with the local arts centre and the psychology team at the University of Dundee, the art boxes were a response to planned face-to-face art interventions with families being cancelled due to COVID-19 restrictions. The aim of the art boxes is to encourage parents to make art together with their infants, fostering connection through playful, creative shared experiences. This research is currently being expanded to reach out to new families through referrals from health visitors, family nurses, and charity partners. MethodsData is being collected on how the art boxes are experienced by families using a mixed-methods approach. Families complete feedback cards (online, or using the stamped addressed card included in the box) rating their experience on quantitative scales and providing open comments. Visual data are gathered through parents sharing images with us on social media. An initial sample of 10 participants has been interviewed using semistructured interviews, allowing more in-depth qualitative understanding of their experiences. These preliminary findings are discussed here. ResultsThe thematic analysis of initial interviews provided a rich picture of the disconnection families experienced during lockdown, why art boxes may be beneficial to parental well-being, and the mechanisms by which the boxes may help to develop connections for the parent and infant together. ConclusionsPreliminary findings show parents reporting feeling more confident and undertaking new activities which they plan to continue. This was of particular importance during lockdown where parents report opportunities for different experiences being more limited. Parent’s describe positive playful interactions and reported improvements to their own well-being from doing creative activities together with their child. Analysis of these initial interviews gives a framework of barriers and supports to connection which highlights how art boxes can facilitate connectedness between dyads with the potential to strengthen attachments.

Examining corporate social responsibility awareness: An unaided recall measure

AbstractAs professional sports teams commonly partner with multiple charity organizations to achieve corporate social responsibility objectives, the purpose of this research was to measure charity brand awareness among sports fans via unaided recall. Further, this study proposed antecedents to awareness, including; level of fandom, overall season‐ticket holder (STH) satisfaction, perceptions of on‐field performance, live game viewership frequency, televised game viewership frequency, and digital channel interaction frequency. A survey was used to collect data from STHs across three professional sports teams (n = 8,414). Fan recall of charity partners was low with 1.3% recalling three, 3.5% recalling two, and 9.6% able to recall at least one charity partner. Of the antecedents, overall STH satisfaction and frequency of live game viewership were the most influential while, perceptions of on‐field performance returned a significant and negative result. It is advocated sports teams reduce the number of charity partners and charity managers focus communication efforts on more contented STHs who attend live games regularly.

The impact of using negative versus positive Karma framing in donation appeals at grocery checkouts on the facilitating store's outcomes

AbstractThere has been an increasing trend of soliciting donations for a store's charity partner by cashiers at grocery checkouts. A number of such charity appeals use the philosophical concept of Karma, which suggests equivalent outcomes to an individual's actions. Even though this concept is inherently neutral in stating the corresponding outcomes to both types of actions (i.e., good or bad), a majority of donation appeals use Karma's negative tenant alone (e.g., “when you don't donate, someone in your neighborhood goes without food”). Where previous message‐framing research has mainly focused on donation outcomes (e.g., pledged‐dollars), this research is a first of its kind to not only investigate the impact of using Karma's negative (vs. positive) tenants in prosocial messaging separately, but to also assess its effects on the largely‐ignored but critical store outcomes of purchase satisfaction and revisit intentions. Results from four scenario‐based experiments demonstrate that using a negative (vs. positive) Karma connotation in donation appeals at grocery checkouts significantly lowers consumers' purchase satisfaction at the store as well as their intentions to revisit the store in the future (with no major impact on the donation outcomes). Following established research on negativity bias, affect and moral consciousness, this research also shows that instead of emotions, lowered consumer mood mediates these effects. Furthermore, it evidences that the negative effect of using Karma's negative (vs. positive) connotation in checkout donation solicitations on the store outcomes attenuates when consumers' grocery basket consists of more hedonic (vs. utilitarian) products based on the former's mood‐uplifting properties.

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects

BackgroundThe University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours.MethodsUsing independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement.ResultsThe workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to ‘openness’ was the ‘spaces’ and ‘places’ in which meetings between partners could occur in an accessible and equitable way. The issue of ‘space’ is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values.ConclusionsThis work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.

The Boston Marathon: A Tale of Two Races.

The Boston Marathon: A Tale of Two Races.

Erase COVID: An Interview with Artists Creating PSAs to Take On a Global Pandemic

Abstract: How do people respond to a crisis like the COVID-19 pandemic? How do people find creative ways to help others in their communities? A look at the Erase COVID project helps answer these questions. The Erase COVID project is a global artist collective that formed around the time COVID-19 was declared a pandemic in March 2020. Artists from about a dozen countries came together to make a series of visually rich public service announcements (PSAs) to recommend important health safety practices and draw attention to major concerns impacting society: washing hands, disinfecting and cleaning, social distancing, not touching one's face or nose, seeking out quality and fact-based information, self care, and thinking about one's impact on others through their actions. The Erase COVID project sells posters, cards, postcards, apparel, and other items on its website, EraseCOVID.com, which distributes proceeds equally among the artists, the printer/distributor, and its charity partner MusiCares, an organization supporting music industry workers in need. This article features an interview with the Erase COVID co-founder Michael Buchmiller as well as seven artists contributing to the project. All reveal background details about the project, their work as artists, their PSAs, and their hopes about what will come out of the COVID-19 crisis.

P267 Getting the know-how: the feasibility of delivering a digital self-management programme for axSpA

Abstract Background Despite recommendations by NICE in the management of axial spondyloarthritis (AS), adherence to exercise and self-management education is reported to be variable. The Axial Spondyloarthritis Know-How (ASK) self-management programme is a single attendance exercise and education workshop supported by a self-management digital toolkit. The ASK digital toolkit consists of a short educational film, a self-assessment tool and interactive self-management handbook to support health behaviour change following attendance. The feasibility of delivering a digital self-management programme for adults with AS was explored prior to implementation. Methods The development of the ASK digital toolkit involved service-users and charity partners from the National Ankylosing Spondylitis Society (NASS) with user-testing and feedback contributing to the reiterative design of the digital resource. Service-users were also involved in the co-production of the ASK film. The feasibility of delivering the ASK self-management digital toolkit via a link in an automated pre-appointment SMS was evaluated using a patient questionnaire. Results 23 patients (12 male; 11 female) completed the feasibility questionnaire between February and April 2019. The acceptability of the ASK digital toolkit was rated 9.6/10. The trustworthiness and safety of data were rated 9.4/10 and 8.6/10 respectively. The helpfulness of receiving the ASK self-management handbook prior to attendance was rated 8.2/10. The overall helpfulness of the ASK digital tool in supporting self-management was rated 9.1/10. The acceptability of receiving the self-assessment tool at 3-, 6- and 12-month follow-ups to support adherence to self-management was rated 9.5/10. 67 patients completed the ASK self-assessment tool prior to attendance. 10.5% (7/67) reported not being sure of their diagnosis on attendance. 83.5% (56/67) viewed the ASK film prior to attendance with 81.5% (44/54) rating it ≥ 7/10 in managing expectations of the workshop. 62.7% downloaded the ASK digital self-management handbook with 62.7% (32/42) rating the ASK handbook ≥7/10 in helping to prepare to attend ASK. 23.1% (15/65) reported performing ≤ 30 minutes of physical activity/week. 11.3% (7/62) were smokers. 12 Patients completed the 3-month follow-up self-assessment tool (June-August 2019). 100% understood their diagnosis. 75% (9/12) were using the ASK self-management handbook on a range of devices with 25% using the ASK handbook weekly and 75% when they had a new problem e.g flare.100% were happy to receive the ASK self-assessment tool in a further 3 months for support. 9.09% (1/11) report performing ≤ 30 minutes of physical activity/week. 100% were non-smokers. Conclusion A digital-first approach to the delivery of the ASK self-management programme was acceptable and rated highly for helpfulness in preparing patients for a journey of self-management. Delivery of the ASK toolkit appears to be feasible using digital technology and has the potential in supporting adherence to self-management for patients with AS. Disclosures M.J. Martin Honoraria; Novartis, Abbvie. Grants/research support; National Ankylosing Spondylitis Society.

Development of an education and self-management intervention for chronic headache \u2013 CHESS trial (Chronic Headache Education and Self-management Study)

BackgroundSelf-management interventions are well recognised and widely used in chronic conditions. Their application to chronic headaches has been limited and generally of low quality. We describe here our process for developing an evidence based, and theory driven, education and self-management intervention for those living with chronic headache.MethodsOur intervention was designed using several core information sources; the results of three systematic reviews, qualitative material from those living with chronic headaches, our knowledge from existing self-management interventions; and finally collaborative input from a multidisciplinary team of clinicians, academics, patients, and charity partners. We manualised the intervention and associated training as a package for use in a feasibility study. We made adaptations for its use in a randomised controlled trial.ResultsWe piloted the intervention in four groups with a total of 18 participants. Qualitative feedback from 12 participants and five facilitators allowed the intervention to be refined for the main randomised controlled trial. Some of the key changes included shortening of the overall intervention, changes to the originally planned facilitators and spreading the facilitator training over three days rather than two.We are now testing the final revised intervention in a randomised controlled trial of its clinical and cost effectiveness. The group component of the intervention is delivered over two days with the first day focused on living, understanding and dealing with chronic headaches and the second day exploring how to adapt and take control of one’s life with chronic headaches.ConclusionOur pilot work indicates that our intervention is feasible to deliver, and with the relevant changes would be acceptable for use with this population. Our randomised control trial is ongoing. We anticipate publishing final results in 2021.Trial registrationISRCTN79708100. Registered 16th December 2015, http://www.isrctn.com/ISRCTN79708100

The MediStori. A personal health record and standardised self-management toolkit which can improve integrated care systems

The MediStori. A personal health record and standardised self-management toolkit which can improve integrated care systems

Gilt and Guilt: Should Luxury and Charity Partner at the Point of Sale?

If luxury retail strategy aims to generate awe rather than community, while charities convey community rather than awe, should luxury and charity partner at the point of sale? This research suggests that an association with charity at the point of sale can increase choice of (Study 1) and purchase intent toward (Study 2) a luxury brand and can facilitate upselling to a luxury (vs. value) store brand (Study 3). Further, it implicates guilt reduction as the underlying process mechanism (Studies 2 and 3). Managerial and retailing implications for cause-related marketing of luxury (vs. value) brands are discussed.

Corporate Perspectives on Cause Related Marketing

ABSTRACT Executives in 94 large UK companies engaging in cause related marketing (CRM) completed a questionnaire concerning (i) their firms' approaches to the management and evaluation of CRM, (ii) the benefits perceived to accrue to the practice, and (iii) whether these businesses applied commercial rather than philanthropic principles when selecting CRM partners. It emerged that, in general, the sample firms employed mainly commercial criteria when choosing CRM projects, that selections were frequently influenced by employee opinion, and that most of the evaluation techniques conventionally used to appraise commercial sponsorship and advertising were also utilised to assess CRM programmes. Companies were reported to demand close and obvious links between their products and the activities of partner charities. Typically, they preferred to affiliate with well-known charities and tended to dislike “controversial” causes. In the main the respondents held low opinions of their charity partners' marketing abilities. The article concludes with a number of recommendations regarding the ways in which charities should formulate proposals when inviting businesses to participate in CRM programmes.