BackgroundSymptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.MethodsThe PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach.ResultsFive themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.ConclusionsThis study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0314-4) contains supplementary material, which is available to authorized users.
IntroductionThere can be a mismatch between what the public see as important unanswered questions and those which are actually researched. The Palliative and end of life care Priority Setting Partnership, facilitated by the James Lind Alliance (JLA), identified and prioritised questions about palliative and end of life care that people in the last years of life, current/bereaved carers and professionals feel are important for research to address.Aim(s) and method(s)A UK public survey (December 2013–April 2014) identified questions about support, care and treatment of people in the last years of life. Some 83 questions were formulated and prioritised via a second public survey. The resulting top 28 were prioritised in a workshop comprising patients, carers and clinicians to determine the top 10 research questions.Results1403 surveys were returned. Most respondents identified as bereaved family/friends and health or social care professionals. Respondents submitted a range of questions on services, communication, symptoms and perceptions of palliative care. 1331 respondents completed the second survey. In November 2014, 24 people participated in a workshop to prioritise the ‘top 10’ questions (using the Nominal Group Technique) which will be reported in January 2015.Responses that are ‘out of scope’ of the JLA protocol will be analysed and reported separately.Conclusion(s)The ‘top 10’ uncertainties will guide project partners' and other organisations' funding strategies, ensuring that future research is relevant to palliative care populations. We will discuss how the results of this project will guide the palliative and end of life care research agenda in future.
Young people's wellbeing is often lowest where they assume a relatively low position within their school's socioeconomic hierarchy, for example, among poorer children attending more affluent schools. Transition to secondary school is a period during which young people typically enter an environment which is more socioeconomically diverse than their primary school. Young people joining a school with a higher socioeconomic status intake relative to their primary school may assume a relatively lowered position within their school's socioeconomic hierarchy, experiencing a detriment to their wellbeing as a consequence. This article draws on data from 45,055 pupils in Years 7 and 8, from 193 secondary schools in Wales, who completed the 2017 Student Health Research Network (SHRN) Student Health and Wellbeing (SHW) survey. Pupils reported which primary school they previously attended, and survey data on wellbeing were linked to publicly available data on the free school meal entitlement of schools attended. In cross-classified linear mixedeffects models, with primary and secondary school as levels, mental wellbeing varied significantly according to both primary and secondary school attended. A higher school-level deprivation was associated with worse mental wellbeing in both cases. Mental wellbeing was significantly predicted by the relative affluence of a child's primary and secondary school, with movement to a secondary school of higher overall socioeconomic status associated with lowered wellbeing. These findings highlight transition to secondary school as a key point in which socioeconomic inequality in wellbeing may widen, and thus as an important focal point for intervention to reduce health inequalities.
Background Physical inactivity is a persistent challenge among girls. School-based physical activity (PA) interventions have shown mixed effects on girl’s activity levels, with multi-component approaches involving both school and community links appearing more effective for sustainable change. The purpose of the current research was to gather views from preadolescent girls, parents, teachers and stakeholders in order to co-produce a multi-component school-based, community linked PA intervention programme. Methods Focus groups were conducted in two primary schools with 34 girls aged 9–11 years and 11 parents (10 female, 1 male). In-depth interviews were conducted with four female teachers (including two head teachers). Focus groups and interviews focused on programme design (structure, content and delivery) and potential factors affecting intervention uptake and continued PA participation. A series of stakeholder engagement events occurred throughout the study period. All data were transcribed verbatim and thematically analysed in NVivo 11. Results Girls reported that fun taster sessions delivered by role models would encourage them to participate in a school-based role model programme, with tailored taster sessions each week to enhance continued PA participation. Parents and teachers identified a number of barriers to uptake and continued PA participation, and active involvement of stakeholders facilitated the development of intervention strategies. Strategies included; single-sex after-school sessions, use of female role models, low-cost activity options and mapping community provision. Analyses revealed the importance of tailoring the programme to align with local needs, demands and provision. Conclusions Data show numerous barriers to intervention uptake and continued PA participation when designing a school-based, community-linked intervention. Adopting a co-production approach, this formative work highlights a number of potential strategies for overcoming these barriers. Findings from the research directed the development and implementation of the CHARMING role model intervention and informed the creation of an intervention logic model. Electronic supplementary material The online version of this article (10.1186/s12889-019-6741-1) contains supplementary material, which is available to authorized users.
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