The treatment-related experiences of parents, children and young people with regular prescribed medication

Background Taking regular medication has been shown to have an impact on the daily lives of patients and their families. Objective To explore the medication-related experiences of patients and their families when a child or young person is prescribed regular medication. Setting A specialist U.K. paediatric hospital. Method Semi-structured face-to-face interviews of 24 parents/carers, children or young people, who had been taking two or more medications for 6 weeks or longer. The themes explored included the medication regimen, formulation, supplies, social aspects and adverse effects. The data was analysed using NVIVO version 11. Main outcome measure The experiences of patients, and their parents/carers, when a child/young person takes regular medication. Results Participants described a range of experiences associated with taking regular medication. Medication-related challenges were experienced around the timing of administration which was managed over 24 h rather than waking hours. Updating medication doses for administration at school was often delayed. Unintended nonadherence was cited as the biggest challenge with a range of strategies employed to manage this. The internet was commonly used as a source of additional information accessed for reassurance and adverse effects but there were varying experiences of using patient forums/help groups. Other challenges included the adequacy of information, travelling with medication, formulation issues, arranging supplies and adverse effects. Conclusion Patients and parents experience many challenges with children’s medication. Individualised treatment options should be considered. Further research is required to determine how these experiences may be managed including the role of paediatric medication review

Family support for physical activity in girls from 8th to 12th grade in South Carolina

Objective - To examine the relationship between perceived family support and other selected correlates of physical activity (PA) with changes in PA over time. Methods - A total of 421 girls in South Carolina completed questionnaires at 8th, 9th and 12th grades (1998-2003). Family support for PA, PA self-efficacy, perceived behavioral control, attitudes, availability of equipment, and PA were measured. Results - Growth curve analysis showed that family support, perceived behavioral control, and self-efficacy were independently related to age-related changes in PA as reflected by a total METs. Girls who reported lower family support at the 8th grade measure had more rapid declines in PA, and a unit change in family support was related to approximately 1/3 of a standard deviation change in total METs. Conclusions - Maintenance of support from family members may reduce the decline in PA independent of girl\u27s self-efficacy and perceived behavioral control

Priority setting for health in the context of devolution in Kenya: implications for health equity and community-based primary care

Devolution changes the locus of power within a country from central to sub-national levels. In 2013, Kenya devolved health and other services from central government to 47 new sub-national governments (known as counties). This transition seeks to strengthen democracy and accountability, increase community participation, improve efficiency and reduce inequities. With changing responsibilities and power following devolution reforms, comes the need for priority-setting at the new county level. Priority-setting arises as a consequence of the needs and demand for healthcare resources exceeding the resources available, resulting in the need for some means of choosing between competing demands. We sought to explore the impact of devolution on priority-setting for health equity and community health services. We conducted key informant and in-depth interviews with health policymakers, health providers and politicians from 10 counties (n = 269 individuals) and 14 focus group discussions with community members based in 2 counties (n = 146 individuals). Qualitative data were analysed using the framework approach. We found Kenya’s devolution reforms were driven by the need to demonstrate responsiveness to county contexts, with positive ramifications for health equity in previously neglected counties. The rapidity of the process, however, combined with limited technical capacity and guidance has meant that decision-making and prioritization have been captured and distorted for political and power interests. Less visible community health services that focus on health promotion, disease prevention and referral have been neglected within the prioritization process in favour of more tangible curative health services. The rapid transition in power carries a degree of risk of not meeting stated objectives. As Kenya moves forward, decision-makers need to address the community health gap and lay down institutional structures, processes and norms which promote health equity for all Kenyans

Review of school vision screening guidelines

Abstract: Background: Vision screenings are important in identifying visual anomalies likely to disrupt the physical, intellectual, social and emotional development of children. School health services globally include vision screenings, complementing a variety of associated screening services. Aim: This review article provides evidence for content, provision and efficacy of the vision screening services for children of school-going age and reports on the current practice of children’s vision screenings worldwide including in South Africa. Methods: Studies were identified from PubMed, Ebscohost and Science Direct with the search terms utilised during the selection of electronic articles and journals for the review. The target population includes children of school-going age from 6 to 19 years without previously known conditions associated with visual anomalies and learning-related problems. The quality of vision screening programmes and policies for the school-going age children in different countries were evaluated using Wilson and Jungner criteria.1 Results: Vision screening programmes worldwide appear to support comprehensive vision screening methods among pre-schoolers (from birth to ≤ 6 years vs. children of school-going age). The development of vision screening procedures in some countries in the United States of America (USA) was found to be grounded on epidemiologic findings and principles. These may have contributed towards the formulation of national vision screening guidelines for preschoolers that supported the detection of amblyopia and its associated conditions such as strabismus, anisometropia and myopia. School-going children’s vision screenings are not supported worldwide as research has shown that there is lack of benefits for detecting other visual anomalies such as vergence and accommodative dysfunctions. This is despite evidence provided by the literature reviewed that an association exists between prevalent accommodation and vergence dysfunctions including poor ocular motilities and poor near-vision, among children of school-going age with poor academic performance. Conclusion: The guidelines worldwide support school vision screenings, especially for the pre-schoolers by the school health nurses, with other programs having considered the teachers, optometrists or orthoptists as the appropriate personnel to conduct the school vision screenings. There is still a need for the effectiveness of the school vision-screening programmes to be investigated related to the importance of detecting convergence and accommodative dysfunctions for the school going age children

Embracing plurality through oral language

The transmission and dissemination of knowledge in Aboriginal societies for the most part occurs orally in an Aboriginal language or in Aboriginal English. However, whilst support is given to speaking skills in Indigenous communities, in our education system less emphasis is given to developing equivalent oral communicative competence in Standard Australian English (SAE). Instead the focus is given to the ongoing assessment of reading and writing skills and grammatical knowledge – this is in direct contrast to the existing language experience of Aboriginal students. Therefore, for Aboriginal students to participate in mainstream society, we suggest that there is a need to nurture oral language skills in SAE and provide learners with the experience to develop their code-switching ability to maintain continuity with their first language or dialect. Drawing on previous research that we and others have undertaken at several schools, this paper highlights the need for three fundamental changes to take place within language education: (1) school policies to change and explicitly accept and support Aboriginal English in code-switching situations; (2) familiarity among school staff about the major differences between Aboriginal English and SAE; and (3) tasks that focus on developing and practising the ‘when, why and how’ of code-switching

A randomised controlled trial to evaluate the impact of a human rights based approach to dementia care in inpatient ward and care home settings

BackgroundAlthough it is widely recognised that adopting a person-centred approach is beneficial in the care of people living with dementia, a gap remains between the rhetoric and the reality of quality care. Some widely adopted care practices can result in the personhood of this group being threatened and their human rights being undermined.ObjectivesTo evaluate the impact of applying a human rights based approach in dementia inpatient wards and care homes on the quality of care delivered and the well-being of the person living with dementia.DesignA cluster randomised design was employed to compare the impact of implementing a human rights based approach intervention (i.e. training, applying the ‘Getting It Right’ assessment tool and receiving booster sessions) at 10 intervention sites with 10 control sites.SettingEight NHS dementia inpatient wards and 12 care homes in the north-west of England.ParticipantsPeople living with dementia who were residing on dementia inpatient wards or in care homes, and staff working at these sites. The aim was to recruit 280 people living with dementia.InterventionsA sample of staff (an average of 8.9 per site) at each of the sites was trained in a human rights based approach to care, including the application of the ‘Getting It Right’ assessment tool. The tool was then introduced at the site and monthly booster sessions were delivered.Main outcome measuresThe primary outcome measure used in the research was the Quality of Life in Alzheimer’s Disease scale to assess the subjective well-being of the person with dementia. Secondary outcome measures included measures of the quality of care provided (dementia care mapping) and direct measures of the effectiveness of the training in increasing knowledge of and attitudes towards human rights. The study also included an economic evaluation utilising the EuroQol-5 Dimensions, three-level version, and the Adult Social Care Outcomes Toolkit measure.ResultsThe study recruited 439 people living with dementia: 213 to the intervention arm and 226 to the control arm. Primary outcome data were analysed using a linear mixed model. There were no significant differences found in the reported quality of life of residents between the control and intervention groups after the intervention [F(1,16.51) = 3.63;p = 0.074]. The mean difference between the groups was 1.48 (95% confidence interval –7.86 to 10.82).ConclusionsDespite the fact that the training increased staff knowledge of and positive attitudes towards human rights, and although there were some changes in staff decision-making strategies in clinical situations, there was no change in the quality of care provided or in the reported well-being of people living with dementia in these settings. This led to questions about the efficacy of training in bringing about cultural change and improving care practices.LimitationsThere was limited uptake of the training and booster sessions that were integral to the intervention.Future workFuture work could usefully focus on understanding the difficulty in translating change in attitude and knowledge into behaviour.Trial registrationCurrent Controlled Trials ISRCTN94553028.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 6, No. 13. See the NIHR Journals Library website for further project information.</jats:sec

Facet-joint injections for non-specific low back pain: a feasibility RCT

Background: Pain of lumbar facet-joint origin is a common cause of low back pain in adults and may lead to chronic pain and disability, with associated health and socioeconomic implications. The socioeconomic burden includes an inability to return to work resulting in loss of productivity in addition to direct and indirect health-care utilisation costs. Lumbar facet-joints are paired synovial joints between the superior and inferior articular processes of consecutive lumbar vertebrae and between the fifth lumbar vertebra and the sacrum. Facet-joint pain is defined as pain that arises from any structure that is part of the facet-joints, including the fibrous capsule, synovial membrane, hyaline cartilage and bone. This pain may be treated by intra-articular injections with local anaesthetic and steroid, although this treatment is not standardised. At present, there is no definitive research to support the use of targeted lumbar facet-joint injections to manage this pain. Because of the lack of high-quality, robust clinical evidence, the National Institute for Health and Care Excellence (NICE) guidelines on the management of chronic low back pain [NICE. Low Back Pain in Adults: Early Management. Clinical guideline (CG88). London: NICE; 2009] did not recommend the use of spinal injections despite their perceived potential to reduce pain intensity and improve rehabilitation, with NICE calling for further research to be undertaken. The updated guidelines [NICE. Low Back Pain and Sciatica in Over 16s: Assessment and Management. NICE guideline (NG59). London: NICE; 2016] again do not recommend the use of spinal injections. Objectives: To assess the feasibility of carrying out a definitive study to evaluate the clinical effectiveness and cost-effectiveness of lumbar facet-joint injections compared with a sham procedure in patients with non-specific low back pain of > 3 months’ duration. Design: Blinded parallel two-arm pilot randomised controlled trial. Setting: Initially planned as a multicentre study involving three NHS trusts in the UK, recruitment took place in the pain and spinal orthopaedic clinics at Barts Health NHS Trust only. Participants: Adult patients referred by their GP to the specialist clinics with non-specific low back pain of at least 3 months’ duration despite NICE-recommended best non-invasive care (education and one of a physical exercise programme, acupuncture or manual therapy). Patients who had already received lumbar facet-joint injections or who had had previous back surgery were excluded. Interventions: Participants who had a positive result following a diagnostic test (single medial branch nerve blocks) were randomised and blinded to receive either intra-articular lumbar facet-joint injections with steroids (intervention group) or a sham procedure (control group). All participants were invited to attend a group-based combined physical and psychological (CPP) programme. Main outcome measures: In addition to the primary outcome of feasibility, questionnaires were used to assess a range of pain-related (including the Brief Pain Inventory and Short-Form McGill Pain Questionnaire version 2) and disability-related (including the EuroQol-5 Dimensions five-level version and Oswestry Low Back Pain Questionnaire) issues. Health-care utilisation and cost data were also assessed. The questionnaire visits took place at baseline and at 6 weeks, 3 months and 6 months post randomisation. The outcome assessors were blinded to the allocation groups. Results: Of 628 participants screened for eligibility, nine were randomised to receive the study intervention (intervention group, n = 5; sham group, n = 4), six completed the CPP programme and eight completed the study. Limitations: Failure to achieve our expected recruitment targets led to early closure of the study by the funder. Conclusions: Because of the small number of participants recruited to the study, we were unable to draw any conclusions about the clinical effectiveness or cost-effectiveness of intra-articular lumbar facet-joint injections in the management of non-specific low back pain. Although we did not achieve the target recruitment rate from the pain clinics, we demonstrated our ability to develop a robust study protocol and deliver the intended interventions safely to all nine randomised participants, thus addressing many of the feasibility objectives. Future work: Stronger collaborations with primary care may improve the recruitment of patients earlier in their pain trajectory who are suitable for inclusion in a future trial. Trial registration: EudraCT 2014-003187-20 and Current Controlled Trials ISRCTN12191542. Funding: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 21, No. 74. See the NIHR Journals Library website for further project information

Towards improved decision support in the assessment and management of pain for people with dementia in hospital: a systematic meta-review and observational study

BackgroundPain and dementia are common in older people, and impaired cognitive abilities make it difficult for them to communicate their pain. Pain, if poorly managed, impairs health and well-being. Accurate pain assessment in this vulnerable group is challenging for hospital staff, but essential for appropriate management. Robust methods for identifying, assessing and managing pain are needed.Aims and objectivesTwo studies were undertaken to inform the development of a decision support tool to aid hospital staff in the recognition, assessment and management of pain. The first was a meta-review of systematic reviews of observational pain assessment instruments with three objectives: (1) to identify the tools available to assess pain in adults with dementia; (2) to identify in which settings they were used and with what patient populations; and (3) to assess their reliability, validity and clinical utility. The second was a multisite observational study in hospitals with four objectives: (1) to identify information currently used by clinicians when detecting and managing pain in patients with dementia; (2) to explore existing processes for detecting and managing pain in these patients; (3) to identify the role (actual/potential) of carers in this process; and (4) to explore the organisational context in which health professionals operate. Findings also informed development of health economics data collection forms to evaluate the implementation of a new decision support intervention in hospitals.MethodsFor the meta-review of systematic reviews, 12 databases were searched. Reviews of observational pain assessment instruments that provided psychometric data were included. Papers were quality assessed and data combined using narrative synthesis. The observational study used an ethnographic approach in 11 wards in four UK hospitals. This included non-participant observation of 31 patients, audits of patient records, semistructured interviews with 52 staff and four carers, informal conversations with staff and carers and analysis of ward documents and policies. Thematic analysis of the data was undertaken by the project team.ResultsData from eight systematic reviews including 28 tools were included in the meta-review. Most tools showed moderate to good reliability, but information about validity, feasibility and clinical utility was scarce. The observational study showed complex ward cultures and routines, with variations in time spent with patients, communication patterns and management practices. Carer involvement was rare. No pain decision support tools were observed in practice. Information about pain was elicited in different ways, at different times, by different health-care staff and recorded in separate documents. Individual staff made sense of patients’ pain by creating their own ‘overall picture’ from available information.LimitationsGrey literature and non-English-language papers were excluded from the meta-review. Sample sizes in the observational study were smaller than planned owing to poor documentation of patients’ dementia diagnoses, gatekeeping by staff and difficulties in gaining consent/assent. Many patients had no or geographically distant carers, or a spouse who was too unwell and/or reluctant to participate.ConclusionsNo single observational pain scale was clearly superior to any other. The traditional linear concept of pain being assessed, treated and reassessed by single individuals did not ‘fit’ with clinical reality. A new approach enabling effective communication among patients, carers and staff, centralised recording of pain-related information, and an extended range of pain management interventions is proposed [Pain And Dementia Decision Support (PADDS)]. This was not tested with users, but a follow-on study aims to codesign PADDS with carers and clinicians, then introduce education on staff/patient/carer communications and use of PADDS within a structured implementation plan. PADDS will need to be tested in differing ward contexts