Investigating falls in adults with intellectual disability living in community settings and their experiences of post-fall care services: Protocol for a prospective observational cohort study

Background: Falls among older adults with intellectual disability (ID) are recognised as a serious health problem potentially resulting in reduced health-related quality of life and premature placement in residential care. However there are limited studies that have investigated this problem and thus falls rates among older adults with ID remain uncertain. Furthermore, people with ID rely heavily on familial and professional care support to address health problems, such as after having a fall. No studies have explored the post-fall care that people with ID receive. Method: This research will be carried out in two phases using a convergent mixed methods design. The aim of Phase 1 is to estimate the falls rate by prospectively observing a cohort of older adults (≥ 35 years) with ID (n = 90) for six months. Phase 1 will be conducted according to STROBE guidelines. In Phase 2, participants from Phase 1 who have experienced a fall(s) will be asked to participate in a semi-structured interview to explore their post-fall experience. Discussion: This study will determine the rate of falls among older adults with ID living in community based settings, which will assist to identify the extent of this problem. Data collected from the study will also aid in understanding the circumstance of falls and related falls risk factors in this cohort. This will include exploring any barriers that older adults with ID may encounter when seeking or undertaking recommended post-fall care advice. Findings from this research will potentially inform future development of falls prevention services for older adults with ID. This study has been approved by the University Human Research Ethics Committee. Trial registration: The protocol for this study is registered with the Australian New Zealand Clinical Trial Registry (ACTRN12615000926538) on 7 September 2015. www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=368990&isReview=tru

Improving Quality of Life Outcomes in Supported Accommodation for People with Intellectual Disability: What Makes a Difference?

Background: The quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes. Methods: A realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters. Results: Evidence was strongest for the presence of staff practices (use of Active Support), front-line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front-line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings. Conclusions: The evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains

Justified Concern or Exaggerated Fear: The Risk of Anaphylaxis in Percutaneous Treatment of Cystic Echinococcosis—A Systematic Literature Review

Percutaneous treatment (PT) emerged in the mid-1980s as an alternative to surgery for selected cases of abdominal cystic echinococcosis (CE). Despite its efficacy and widespread use, the puncture of echinococcal cysts is still far from being universally accepted. One of the main reasons for this reluctance is the perceived risk of anaphylaxis linked to PTs. To quantify the risk of anaphylactic reactions and lethal anaphylaxis with PT, we systematically searched MEDLINE for publications on PT of CE and reviewed the PT-related complications. After including 124 publications published between 1980 and 2010, we collected a total number of 5943 PT procedures on 5517 hepatic and non-hepatic echinococcal cysts. Overall, two cases of lethal anaphylaxis and 99 reversible anaphylactic reactions were reported. Lethal anaphylaxis occurred in 0.03% of PT procedures, corresponding to 0.04% of treated cysts, while reversible allergic reactions complicated 1.7% of PTs, corresponding to 1.8% of treated echinococcal cysts. Analysis of the literature shows that lethal anaphylaxis related to percutaneous treatment of CE is an extremely rare event and is observed no more frequently than drug-related anaphylactic side effects

“Charity Begins at Home”: Informal Caring Barriers to Formal Volunteering Among Older People

Formal volunteering is an important economic and social activity. In many countries, prevalence of volunteering is decreasing overall, including among older people who constitute a major volunteering resource. This qualitative study explored reasons for non-volunteering among seniors, with a focus on those who attribute their non-volunteering to their existing helping commitments. Forty-nine Australian interviewees aged 60 + years described a range of social, psychological, and temporal factors that resulted in their prioritization of informal rather than formal volunteering activities. These factors are mapped onto a theoretical framework matrix, with social identity and social capital theories appearing to possess the most explanatory power. The findings suggest that programs designed to encourage formal volunteering among older people need to be implemented in a manner that recognizes that members of this group can hold many other responsibilities that limit their ability to participate, especially those assisting in the care of multiple generations

Development and evaluation of an instrument for the critical appraisal of randomized controlled trials of natural products

<p>Abstract</p> <p>Background</p> <p>The efficacy of natural products (NPs) is being evaluated using randomized controlled trials (RCTs) with increasing frequency, yet a search of the literature did not identify a widely accepted critical appraisal instrument developed specifically for use with NPs. The purpose of this project was to develop and evaluate a critical appraisal instrument that is sufficiently rigorous to be used in evaluating RCTs of conventional medicines, and also has a section specific for use with single entity NPs, including herbs and natural sourced chemicals.</p> <p>Methods</p> <p>Three phases of the project included: 1) using experts and a Delphi process to reach consensus on a list of items essential in describing the identity of an NP; 2) compiling a list of non-NP items important for evaluating the quality of an RCT using systematic review methodology to identify published instruments and then compiling item categories that were part of a validated instrument and/or had empirical evidence to support their inclusion and 3) conducting a field test to compare the new instrument to a published instrument for usefulness in evaluating the quality of 3 RCTs of a NP and in applying results to practice.</p> <p>Results</p> <p>Two Delphi rounds resulted in a list of 15 items essential in describing NPs. Seventeen item categories fitting inclusion criteria were identified from published instruments for conventional medicines. The new assessment instrument was assembled based on content of the two lists and the addition of a Reviewer's Conclusion section. The field test of the new instrument showed good criterion validity. Participants found it useful in translating evidence from RCTs to practice.</p> <p>Conclusion</p> <p>A new instrument for the critical appraisal of RCTs of NPs was developed and tested. The instrument is distinct from other available assessment instruments for RCTs of NPs in its systematic development and validation. The instrument is ready to be used by pharmacy students, health care practitioners and academics and will continue to be refined as required.</p

Specialist hospital treatment and care as reported by children with intellectual disabilities and a cleft lip and/or palate, their parents and healthcare professionals

Background - Research into hospital treatment and care of children with intellectual disabilities (IDs) is extremely limited but available literature points to difficulties. Some children have a co-occurring condition alongside an ID which requires ongoing treatment, such as a cleft lip/palate. To date, their experiences remain untapped. Method - Semi-structured interviews with 23 participants comprising children (n=5) (aged 11-16) with intellectual disabilities, their parents (n=9) and healthcare professionals (n=9) working in cleft care. Thematic Analysis determined patterns across the data. Results- Three key themes were found; struggles (stress and distress, power imbalance) tensions (perceived levels of choice and control in decision-making, lack of training around IDs assumptions and jargon) and good practice (appropriate communication and information, tailored treatment). Conclusion - Good practice was evident, but was ad-hoc. Individualised treatment and communication based upon children’s needs is required as is further investigation into general anaesthetic induction for children with IDs

A systematic review evaluating the psychometric properties of measures of social inclusion

Introduction: Improving social inclusion opportunities for population health has been identified as a priority area for international policy. There is a need to comprehensively examine and evaluate the quality of psychometric properties of measures of social inclusion that are used to guide social policy and outcomes. Objective: To conduct a systematic review of the literature on all current measures of social inclusion for any population group, to evaluate the quality of the psychometric properties of identified measures, and to evaluate if they capture the construct of social inclusion. Methods: A systematic search was performed using five electronic databases: CINAHL, PsycINFO, Embase, ERIC and Pubmed and grey literature were sourced to identify measures of social inclusion. The psychometric properties of the social inclusion measures were evaluated against the COSMIN taxonomy of measurement properties using pre-set psychometric criteria. Results: Of the 109 measures identified, twenty-five measures, involving twenty-five studies and one manual met the inclusion criteria. The overall quality of the reviewed measures was variable, with the Social and Community Opportunities Profile-Short, Social Connectedness Scale and the Social Inclusion Scale demonstrating the strongest evidence for sound psychometric quality. The most common domain included in the measures was connectedness (21), followed by participation (19); the domain of citizenship was covered by the least number of measures (10). No single instrument measured all aspects within the three domains of social inclusion. Of the measures with sound psychometric evidence, the Social and Community Opportunities Profile-Short captured the construct of social inclusion best. Conclusions: The overall quality of the psychometric properties demonstrate that the current suite of available instruments for the measurement of social inclusion are promising but need further refinement. There is a need for a universal working definition of social inclusion as an overarching construct for ongoing research in the area of the psychometric properties of social inclusion instruments

Diagnosis of cancer as an emergency: a critical review of current evidence

Many patients with cancer are diagnosed through an emergency presentation, which is associated with inferior clinical and patient-reported outcomes compared with those of patients who are diagnosed electively or through screening. Reducing the proportion of patients with cancer who are diagnosed as emergencies is, therefore, desirable; however, the optimal means of achieving this aim are uncertain owing to the involvement of different tumour, patient and health-care factors, often in combination. Most relevant evidence relates to patients with colorectal or lung cancer in a few economically developed countries, and defines emergency presentations contextually (that is, whether patients presented to emergency health-care services and/or received emergency treatment shortly before their diagnosis) as opposed to clinically (whether patients presented with life-threatening manifestations of their cancer). Consistent inequalities in the risk of emergency presentations by patient characteristics and cancer type have been described, but limited evidence is available on whether, and how, such presentations can be prevented. Evidence on patients' symptoms and health-care use before presentation as an emergency is sparse. In this Review, we describe the extent, causes and implications of a diagnosis of cancer following an emergency presentation, and provide recommendations for public health and health-care interventions, and research efforts aimed at addressing this under-researched aspect of cancer diagnosis