Educational and psychological interventions for managing atopic dermatitis (eczema).

BACKGROUND: Atopic dermatitis (eczema), can have a significant impact on well-being and quality of life for affected people and their families. Standard treatment is avoidance of triggers or irritants and regular application of emollients and topical steroids or calcineurin inhibitors. Thorough physical and psychological assessment is central to good-quality treatment. Overcoming barriers to provision of holistic treatment in dermatological practice is dependent on evaluation of the efficacy and economics of both psychological and educational interventions in this participant group. This review is based on a previous Cochrane review published in 2014, and now includes adults as well as children. OBJECTIVES: To assess the clinical outcomes of educational and psychological interventions in children and adults with atopic dermatitis (eczema) and to summarise the availability and principal findings of relevant economic evaluations. SEARCH METHODS: We searched the Cochrane Skin Specialised Register, CENTRAL, MEDLINE, Embase, APA PsycINFO and two trials registers up to March 2023. We checked the reference lists of included studies and related systematic reviews for further references to relevant randomised controlled trials (RCTs) and contacted experts in the field to identify additional studies. We searched NHS Economic Evaluation Database, MEDLINE and Embase for economic evaluations on 8 June 2022. SELECTION CRITERIA: Randomised, cluster-randomised and cross-over RCTs that assess educational and psychological interventions for treating eczema in children and adults. DATA COLLECTION AND ANALYSIS: We used standard Cochrane methods, with GRADE to assess the certainty of the evidence for each outcome. Primary outcomes were reduction in disease severity, as measured by clinical signs, patient-reported symptoms and improvement in health-related quality-of-life (HRQoL) measures. Secondary outcomes were improvement in long-term control of symptoms, improvement in psychological well-being, improvement in standard treatment concordance and adverse events. We assessed short- (up to 16 weeks after treatment) and long-term time points (more than 16 weeks). MAIN RESULTS: We included 37 trials (6170 participants). Most trials were conducted in high-income countries (34/37), in outpatient settings (25/37). We judged three trials to be low risk of bias across all domains. Fifteen trials had a high risk of bias in at least one domain, mostly due to bias in measurement of the outcome. Trials assessed interventions compared to standard care. Individual educational interventions may reduce short-term clinical signs (measured by SCORing Atopic Dermatitis (SCORAD); mean difference (MD) -5.70, 95% confidence interval (CI) -9.39 to -2.01; 1 trial, 30 participants; low-certainty evidence) but patient-reported symptoms, HRQoL, long-term eczema control and psychological well-being were not reported. Group education interventions probably reduce clinical signs (SCORAD) both in the short term (MD -9.66, 95% CI -19.04 to -0.29; 3 studies, 731 participants; moderate-certainty evidence) and the long term (MD -7.22, 95% CI -11.01 to -3.43; 3 studies, 1424 participants; moderate-certainty evidence) and probably reduce long-term patient-reported symptoms (SMD -0.47 95% CI -0.60 to -0.33; 2 studies, 908 participants; moderate-certainty evidence). They may slightly improve short-term HRQoL (SMD -0.19, 95% CI -0.36 to -0.01; 4 studies, 746 participants; low-certainty evidence), but may make little or no difference to short-term psychological well-being (Perceived Stress Scale (PSS); MD -2.47, 95% CI -5.16 to 0.22; 1 study, 80 participants; low-certainty evidence). Long-term eczema control was not reported. We don't know whether technology-mediated educational interventions could improve short-term clinical signs (SCORAD; 1 study; 29 participants; very low-certainty evidence). They may have little or no effect on short-term patient-reported symptoms (Patient Oriented Eczema Measure (POEM); MD -0.76, 95% CI -1.84 to 0.33; 2 studies; 195 participants; low-certainty evidence) and probably have little or no effect on short-term HRQoL (MD 0, 95% CI -0.03 to 0.03; 2 studies, 430 participants; moderate-certainty evidence). Technology-mediated education interventions probably slightly improve long-term eczema control (Recap of atopic eczema (RECAP); MD -1.5, 95% CI -3.13 to 0.13; 1 study, 232 participants; moderate-certainty evidence), and may improve short-term psychological well-being (MD -1.78, 95% CI -2.13 to -1.43; 1 study, 24 participants; low-certainty evidence). Habit reversal treatment may reduce short-term clinical signs (SCORAD; MD -6.57, 95% CI -13.04 to -0.1; 1 study, 33 participants; low-certainty evidence) but we are uncertain about any effects on short-term HRQoL (Children's Dermatology Life Quality Index (CDLQI); 1 study, 30 participants; very low-certainty evidence). Patient-reported symptoms, long-term eczema control and psychological well-being were not reported. We are uncertain whether arousal reduction therapy interventions could improve short-term clinical signs (Eczema Area and Severity Index (EASI); 1 study, 24 participants; very low-certainty evidence) or patient-reported symptoms (visual analogue scale (VAS); 1 study, 18 participants; very low-certainty evidence). Arousal reduction therapy may improve short-term HRQoL (Dermatitis Family Impact (DFI); MD -2.1, 95% CI -4.41 to 0.21; 1 study, 91 participants; low-certainty evidence) and psychological well-being (PSS; MD -1.2, 95% CI -3.38 to 0.98; 1 study, 91 participants; low-certainty evidence). Long-term eczema control was not reported. No studies reported standard care compared with self-help psychological interventions, psychological therapies or printed education; or adverse events. We identified two health economic studies. One found that a 12-week, technology-mediated, educational-support programme may be cost neutral. The other found that a nurse practitioner group-education intervention may have lower costs than standard care provided by a dermatologist, with comparable effectiveness. AUTHORS' CONCLUSIONS: In-person, individual education, as an adjunct to conventional topical therapy, may reduce short-term eczema signs compared to standard care, but there is no information on eczema symptoms, quality of life or long-term outcomes. Group education probably reduces eczema signs and symptoms in the long term and may also improve quality of life in the short term. Favourable effects were also reported for technology-mediated education, habit reversal treatment and arousal reduction therapy. All favourable effects are of uncertain clinical significance, since they may not exceed the minimal clinically important difference (MCID) for the outcome measures used (MCID 8.7 points for SCORAD, 3.4 points for POEM). We found no trials of self-help psychological interventions, psychological therapies or printed education. Future trials should include more diverse populations, address shared priorities, evaluate long-term outcomes and ensure patients are involved in trial design.

Current nursing and midwifery contribution to leading digital health policy and practice: An integrative review.

AIM: To review the current nursing and midwifery contribution to leading digital health (DH) policy and practice and what facilitates and/or challenges this. DESIGN: Integrative literature review. METHODS: Pre-defined inclusion criteria were used. Study selection and quality assessment using the appropriate critical appraisal tools were undertaken by two authors, followed by narrative synthesis. DATA SOURCES: Six databases and hand searching for papers published from 2012 to February 2024. FINDINGS: Four themes were identified from 24 included papers. These are discussed according to the World Health Organization's Global Strategic Directions for Nursing and Midwifery and indicate nurses/midwives are leading DH policy and practice, but this is not widespread or systematically enabled. CONCLUSION: Nurses and midwives are ideally placed to help improve health outcomes through digital healthcare transformation, but their policy leadership potential is underused. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Nurses/midwives' DH leadership must be optimized to realize maximum benefit from digital transformation. A robust infrastructure enabling nursing/midwifery DH policy leadership is urgently needed. IMPACT: This study addresses the lack of nursing/midwifery voice in international DH policy leadership. It offers nurses/midwives and health policymakers internationally opportunity to: drive better understanding of nursing/midwifery leadership in a DH policy context; enhance population outcomes by optimizing their contribution; Develop a robust infrastructure to enable this. REPORTING METHOD: Reporting adheres to the EQUATOR network, Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

Digitizing nursing: A theoretical and holistic exploration to understand the adoption and use of digital technologies by nurses.

BACKGROUND: With healthcare undergoing rapid digitalization, the effective integration of new technologies is crucial for nursing professionals, who form the largest group in the healthcare workforce. However, barriers within the nursing profession may impede digitalization efforts, leading to under utilization of available technologies and missed opportunities for enhancing healthcare quality and population health. AIMS: This article aims to investigate the adoption and use of digital technologies by nurses, considering how key demographics, such as gender, age, and voluntariness of technology use, interact to influence their acceptance and utilization of these technologies. METHODS: Employing the Unified Theory of Acceptance and Use of Technology (UTAUT) as a framework, we conducted a discursive exploration, supplemented by a literature review from diverse academic sources. Keywords related to UTAUT, digitalization, nursing practice and technology adoption were searched on PubMed, CINAHL and Google Scholar. Additionally, UK government and professional regulator reports were examined to understand current recommendations concerning digital technologies in nursing practice and the profession's demography. Searches focused on moderating factor domains, and the last search was conducted on 26 April 2023. RESULTS: The study revealed that the successful implementation of digital technologies in nursing practice requires a nuanced understanding of the nursing workforce's characteristics and preferences. Gender, age and voluntariness of technology use were found to intersect and influence nurses' acceptance and utilization of digital tools. DISCUSSION: By applying UTAUT in the context of nursing, this study highlights the importance of tailored implementation strategies for digital technologies. A technologically deterministic perspective is insufficient; instead, consideration of social factors specific to nursing is essential for successful adoption. CONCLUSION: To maximize the benefits of digitalization in healthcare, it is imperative to address the barriers faced by nursing professionals. A comprehensive understanding of how key demographics impact technology adoption will inform targeted strategies, enhancing the engagement of nurses with digital tools and fostering innovation in healthcare practices. Further research and primary data are needed, but this study lays the foundation for future advancements in digital healthcare integration for nursing professionals. RELEVANCE TO CLINICAL PRACTICE: The issues highlighted in this article are relevant to nurse leaders and those responsible for implementing technologies within nursing contexts. They are also relevant to technology developers who may benefit from considering the evidence associated with the moderating demographic factors highlighted in this article. Without a holistic approach to the implementation of technology, challenges associated with the use of digital technology by nurses are likely to persist. By considering the moderating demographic factors highlighted within the UTAUT (age, gender, voluntariness of use and experience) nurse leaders and technology developers may have greater success obtaining greater clinical outcomes from digital technology. This work was completed in 2022. NO PATIENT OR PUBLIC CONTRIBUTION: Due to the focus of this article being one on professional challenges within the nursing profession, no involvement from patients or the public was sought.

Health and social impacts of open defecation on women: a systematic review.

BACKGROUND: The significance of sanitation to safeguard human health is irrefutable and has important public health dimensions. Access to sanitation has been essential for human dignity, health and well-being. Despite 15 years of conjunctive efforts under the global action plans like Millennium Development Goals (MDGs), 2.3 billion people have no access to improved sanitation facilities (flush latrine or pit latrine) and nearly 892 million of the total world's population is still practicing open defecation. METHODS: The study provides a systematic review of the published literature related to implications of open defecation that goes beyond the scope of addressing health outcomes by also investigating social outcomes associated with open defecation. The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) was used to frame the review, empirical studies focusing upon open defecation in women aged 13-50 in low and middle income countries were included in the review. Research papers included in the review were assessed for quality using appropriate critical appraisal tools. In total 9 articles were included in the review; 5 of these related to health effects and 4 related to social effects of open defecation. RESULTS: The review identified 4 overarching themes; Health Impacts of open defecation, Increased risk of sexual exploitation, Threat to women's privacy and dignity and Psychosocial stressors linked to open defecation, which clearly present a serious situation of poor sanitation in rural communities of Lower-Middle Income Countries (LMICs). The findings of the review identified that open defecation promotes poor health in women with long-term negative effects on their psychosocial well-being, however it is a poorly researched topic. CONCLUSION: The health and social needs of women and girls remain largely unmet and often side-lined in circumstances where toilets in homes are not available. Further research is critically required to comprehend the generalizability of effects of open defecation on girls and women. PROSPERO REGISTRATION: CRD42019119946 . Registered 9 January 2019 .

The etemic model of Gypsy Roma Traveller community vulnerability: is it time to rethink our understanding of vulnerability?

AIMS AND OBJECTIVES: To present a new etemic model of vulnerability. BACKGROUND: Despite vulnerability being identified as a core consequence of health and health experiences, there has been little research exploring the meaning of vulnerability as a concept. Yet, being vulnerable is known to have dire physical/mental health consequences. It is therefore a fundamental issue for nurses to address. To date, the meaning of the term vulnerability has been influenced by the work of Spiers (Journal of Advanced Nursing, 31, 2000, 715, The Essential Concepts of Nursing: Building Blocks for Practice, 2005, Elsevier, London). Spiers identified two aspects of vulnerability: the etic (external judgment of another persons' vulnerability) and the emic (internal lived experience of vulnerability). This approach has led to a plethora of research which has explored the etic (external judgment) of vulnerability and rendered the internal lived (or emic) experience invisible. Consequences of this, for marginalised communities such as Gypsy Roma Travellers include a lack of culturally sensitive services compounding health inequalities. DESIGN: Position paper. METHOD: Drawing upon a qualitative phenomenological research study exploring the lived experience of vulnerability from a Gypsy Roma Travelling community (published previously), this paper presents a new model of vulnerability. This etemic model of vulnerability values both external and internal dimensions of vulnerability and argues for a fusion of these two opposing perspectives. CONCLUSIONS: If nurses and other health- and social care professionals wish to develop practice that is successful in engaging with Gypsy Roma Travellers, then there is a need to both understand and respect their community. This can be achieved through an etemic approach to understanding their vulnerability achieved by eliciting lived experience alongside the appreciation of epidemiological studies. RELEVANCE TO CLINICAL PRACTICE: If nurses and health practitioners used this etemic approach to practice then it would enable both the development and delivery of culturally sensitive services facilitating health access to this community. Only then, will their poor health status be successfully addressed.

Improving equity and cultural responsiveness with marginalised communities: Understanding competing worldviews.

AIM: To explore the impact of culture on health, healthcare provision and its contribution towards health inequity experienced by some marginalised communities. BACKGROUND: Health inequity is a global issue, which occurs across and within countries, and is the greatest barrier to worldwide health and the development of the human race. In response to this challenge, there is an international commitment to ensure universal health coverage based on the fundamental principle that individuals should be able to access healthcare services they need. Despite this, there is clear evidence that indigenous and other cultural minorities such as New Zealand Maori and Gypsy Roma Travellers still experience far poorer health outcomes when compared to the majority population. Furthermore, when they do access health care, their experiences are often not positive and this in turn results in reluctance to access preventative health care, instead accessing health services much later, reducing treatment options and compounding higher mortality rates. What is often not explored or examined is the impact of the different cultural beliefs of individuals in these communities and the nurses caring for them. DESIGN: This is a position paper drawing upon research experience with New Zealand Maori and Gypsy Roma Travellers. We critically review the experiences of health inequity of marginalised communities. It does so by examining how these communities may have a different world view to the nurses caring for them, and it is this lack of understanding and valuing of alternative worldviews that contributes to the poorer health outcomes both communities face. CONCLUSION AND RELEVANCE TO CLINICAL PRACTICE: As nurses work with many different individuals and groups, we have to find ways of ensuring a more embracing, culturally responsive healthcare environment which respects and values the beliefs of others.

Real world challenges in delivering person-centred care: A community-based case study.

Community nurses face many challenges when trying to practice evidence-based, person-centred care. Ongoing concerns regarding the impact of the 2013 Francis Report ( Ford and Lintern, 2017 ) suggest that individualised and holistic care is an impossible dream, one made harder when the client appears uncooperative. This paper presents a case study that sets out how some of these challenges were met in a potentially difficult situation experienced by a student nurse and her mentor in practice, in which the student was supported to further examine and explore issues that may have influenced the situation. In this instance, the solution came with the recognition that the client had expertise and knowledge that needed to be taken into account, alongside that of the nurses looking after him. His care became a partnership, not an imposition of expertise; a principle which is transferable to many other situations. Underpinning it was the recognition of our shared humanity, wherein lies the essence of truly holistic care, and student nurses learning this, through the guidance and support of their mentor.

Service user involvement in preregistration general nurse education: a systematic review.

AIMS AND OBJECTIVES: A systematic review of published studies on service user involvement in undergraduate, preregistration general nursing education (excluding mental health-specific programmes). The objective is to examine how students are exposed to engagement with service users. BACKGROUND: The requirement of service user involvement in all nurse education is policy expectation of health professional education providers, in response to the increased public and political expectations. Previous literature reviews have focused solely on mental health. DESIGN: Systematic review using the Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines; timeframe 1997-2014; published in English. METHODS: Search of CINAHL, Cochrane Review, Education Research Complete, Internurse, MEDLINE, PsychINFO, Scopus, SocINDEX and Web of Science yielded 229 citations; 11 studies met the review eligibility criteria. RESULTS: Seven studies used qualitative methodology, two quantitative and two mixed methods. Studies from the United Kingdom dominated (n = 9), the remainder from South Africa and Turkey. The results are described using four themes: benefits and limitations of service user involvement; nursing student selection; education delivery; practice-based learning and assessment. Most studies were small scale; nine had less than 30 participants. Overall the evidence suggests that student, lecturers and service users valued service user involvement in nurse education, to provide an authentic insight into the illness experience. Logistical considerations around support and student cohort size emerged. CONCLUSIONS: This is the first systematic review to focus on service user involvement in general nurse education. It reveals that service user involvement commenced later and is more limited in general programmes as compared to equivalent mental health education provision. Most of the evidence focuses on perceptions of the value of involvement. Further research is required to more clearly establish impact on learning and clinical practice. RELEVANCE TO CLINICAL PRACTICE: Service user involvement in nurse education is valued by stakeholders but preparation and support for those involved, including mentors is underestimated.

Lived experience of vulnerability from a Gypsy Roma Traveller perspective.

AIMS AND OBJECTIVES: To describe the lived experience of vulnerability of individuals within a Gypsy Roma Travelling community. BACKGROUND: People experience vulnerability whenever their health or usual functioning is compromised. This may increase when they enter unfamiliar surroundings, situations or relationships. One's experience of vulnerability can also be heightened through interactions between the individual and the society within which they live. Gypsy Roma Travellers are often identified as vulnerable owing to increased morbidity and mortality as well as their marginalised status within society. Yet little is known of the experiences of vulnerability by the individuals themselves. Without their stories and experiences, health professionals cannot effectively develop services that meet their needs. DESIGN: This descriptive phenomenological study sought to explore the lived experience of vulnerability in a Gypsy Roma Travelling community. METHODS: Seventeen Gypsy Roma Travellers were interviewed in 2013-2014 about their experiences of feeling vulnerable. This paper reports on the findings from the depth phase in which 13 individuals were interviewed. The interviews were conducted and analysed using Giorgi's descriptive phenomenological approach. FINDINGS: Six constituents of the phenomenon of vulnerability were identified as feeling: defined and homogenised as a group; pressurised to conform to live in a particular way; split in one's identity; a loss of one's heritage; discriminated, persecuted and threatened; and powerlessness. RELEVANCE TO CLINICAL PRACTICE: There is a wealth of evidence that Gypsy Roma Travellers experience high levels of morbidity and mortality, which has led to them being identified by health professionals and policy makers as a vulnerable community. Exploring their lived experience of vulnerability presents a different perspective regarding this concept and can help explain why they may experience poorer levels of physical and mental health.

Addressing older people's mental health needs in the community setting.

It is estimated that more than one third of older people may experience problems with their mental health. While, in some of these cases, people will be able to self-manage with little or no support, individuals who are socially isolated or physically unwell may experience significant mental distress. Community nurses are ideally placed to identify mental health problems in patients who are housebound, and to make appropriate referrals. Yet many nurses report apprehension regarding a perceived lack of knowledge and skills in which to undertake an initial assessment. This article outlines the most common mental illnesses experienced by older people living in the community and provides guidance for community nurses on conducting an initial assessment to ensure that patients' holistic needs are met.

Use of removable support boot versus cast for early mobilisation after ankle fracture surgery: cost-effectiveness analysis and qualitative findings of the Ankle Recovery Trial (ART).

OBJECTIVES: To estimate the cost-effectiveness of using a removable boot versus a cast following ankle fracture from the National Health Service and Personal Social Services (NHS+PSS) payer and societal perspectives and explore the impact of both treatments on participants' activities of daily living. DESIGN: Cost-effectiveness analyses and qualitative interviews performed alongside a pragmatic multicentre randomised controlled trial. SETTING: Eight UK NHS secondary care trusts. PARTICIPANTS: 243 participants (60.5% female, on average 48.2 years of age (SD 16.4)) with ankle fracture. Qualitative interviews with 16 participants. Interventions removable air boot versus plaster cast 2 weeks after surgery weight bearing as able with group-specific exercises. PRIMARY AND SECONDARY OUTCOME MEASURES: Quality-adjusted life years (QALYs) estimated from the EQ-5D-5L questionnaire, costs and incremental net monetary benefit statistics measured 12 weeks after surgery, for a society willing-to-pay £20 000 per QALY. RESULTS: Care in the boot group cost, on average, £88 (95% CI £22 to £155) per patient more than in the plaster group from the NHS+PSS perspective. When including all societal costs, the boot saved, on average, £676 per patient (95% CI -£337 to £1689). Although there was no evidence of a QALY difference between the groups (-0.0020 (95% CI -0.0067 to 0.0026)), the qualitative findings suggest participants felt the boot enhanced their quality of life. Patients in the boot felt more independent and empowered to take on family responsibilities and social activities. CONCLUSIONS: While the removable boot is slightly more expensive than plaster cast for the NHS+PSS payer at 12 weeks after surgery, it reduces productivity losses and the need for informal care while empowering patients. Given that differences in QALYs and costs to the NHS are small, the decision to use a boot or plaster following ankle surgery could be left to patients' and clinicians' preferences. TRIAL REGISTRATION NUMBER: ISRCTN15497399, South Central-Hampshire A Research Ethics Committee (reference 14/SC/1409).

District nursing: the hidden giant of the NHS?

The recent 65th birthday of the NHS is a reminder of the purpose of the NHS: to provide a service that puts people that need it at the heart of care. However, recent negative reports have questioned nurses' ability to provide this care, which led to the development of the 6Cs. This article examines each of these values from the viewpoint of the district nursing service, in particular from a district nurse's perspective, as well as providing a critical commentary regarding the future of the service.

Promoting young people's mental health: the role of community nurses.

There are growing concerns about the mental health and well-being of young people, including how these have been negatively affected by factors such as the coronavirus disease 2019 (COVID-19) pandemic and social media. Community nurses are in an ideal position to promote positive mental health and ensure timely referral to appropriate services to enable young people to access the support they need. This article explores how the pandemic and social media have affected young people's mental health, particularly in relation to anxiety. It also explains how nurses can discuss these issues with young people and their parents or guardians.

What Is Important to the Younger Person (≤50 Years) When Having a Total Hip Arthroplasty: A Systematic Literature Review.

Total hip arthroplasties (THAs) are usually performed in older patients. Despite a growing number of THAs in younger adults, it is unclear whether they have similar priorities in recovery compared with their older counterparts. The purpose of this systematic review was to explore younger patients' priorities when undergoing a THA. Multiple databases were searched in September 2021 prioritizing qualitative data. This review was reported using the Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. Of 14,495 articles screened, nine remained for analysis. Four common themes were discovered: improving function and mobility; pain; relationships; and patient expectations and education. However, there was insufficient information to clarify whether these themes could be attributed directly to younger adults undergoing a THA. The absence of research on THA patients younger than 50 years results in the loss of the voices of these patients. Further research is essential to ensure their needs are identified, addressed, and met.

Quality of life in adults with Down syndrome: A mixed methods systematic review.

BACKGROUND: As the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life. OBJECTIVE: Using Schalock and Verdugo's multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting. METHODS: Five databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. RESULTS: Thirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered. CONCLUSION: This review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome. INTERNATIONAL PROSPECTIVE REGISTER OF SYSTEMATIC REVIEWS REGISTRATION NUMBER: CRD42019140056.

Protecting children or creating vulnerability?

Children are, rightly, viewed as vulnerable and in need of safeguarding. However, protecting children from harm should not eclipse their need to learn about managing risky situations and those in which they are vulnerable. How adults view risk and vulnerability will affect the way in which they enable children to learn through activities which carry a degree of risk. Community practitioners may be well placed to discuss with parents how the risk and benefit of various activities can be considered, and children enabled to learn and develop resilience through acceptable risk taking activities. This paper discusses the challenges which community practitioners may encounter when working with parents on enabling them to achieve a balance between risk and safety for their children. It presents some key concepts and perspectives which may assist them to facilitate discussions with children and families.