BEREAVEMENT IN ADULTS WITH LEARNING DIFFICULTIES

Two studies were undertaken to investigate grief in adults with learning difficulties. Study one involved the construction of an observer rated grief inventory which showed good reliability and certain aspects of validity. Using the grief inventory it was demonstrated that primary carers of learning disabled adult s perceived a significant change in clients post bereavement. There was no association between levels of expressive and receptive language or degree of dependency upon the deceased and grief inventory ratings. Similarly no differences were established on the basis of gender, expected/unexpected death, attendance/non attendance at funeral, maintenance/change of residence as a result of bereavement or presence/absence of religious beliefs. Qualitative data yielded significant information regarding specific types of observed changes in clients after bereavement and ways in which clients were perceived to communicate their grief. In Study Two, four recently bereaved adults with learning difficulties engaged with the researcher i n bereavement counselling over a ten week period. Carers completed the grief inventory on two occasions before counselling intervention, at two weekly interval s during intervention and at a two week follow up. Manova trend analysis indicated no significant change in clients’ grief inventory scores during this period. A structured interview on the concepts of death was completed before and after the intervention. All client s had some understanding of some concepts of death but there was a conspicuous difference between clients\u27 scores. Clients\u27 ratings on the interview before and after intervention were not statistically different. No relationship was found between scores on the concepts of death and grief inventory ratings. Finally a content analysis of three mid counselling sessions for each participant provide d some confirmation that bereaved adults with learning difficulties undergo a similar grief process to that described in the general population. Ideas for future research and implications for service delivery are discussed

Living well while providing support: validation of LTCQ-Carer for assessing informal carers’ quality of life

Purpose Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. Methods Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. Results Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on ‘time to yourself’. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach’s α = 0.95), and a general construct (single factor loadings 0.43–0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. Conclusion LTCQ-Carer is a valid new measure for assessing family caregivers’ quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway

The Development and Implementation of a Culturally Safe Survey for Measuring Knowledge, Attitudes and Values around FASD and Alcohol Use During Pregnancy in a Remote Australian Aboriginal Community Setting

Fetal Alcohol Spectrum Disorder (FASD) describes a lifelong neurodevelopmental disability caused by prenatal alcohol exposure that has a devastating impact on individuals, families and communities. The prevalence of FASD is high in some Indigenous communities around the World and the only active case ascertainment prevalence study conducted in Australia found a rate of 19.44 per 100 children in the remote Fitzroy Valley region of Western Australia. Following this study community led FASD prevention activities were implemented under the Marulu (“Worth Nurturing”) Strategy in the Fitzroy Valley. A Knowledge, Attitudes and Practices survey was designed to assess the impact of the prevention campaign and gather more information about knowledge of the dangers of alcohol use in pregnancy and FASD, local attitudes, and health behaviours both around alcohol and more generally including where residents received their health information. Best practices recommend including local Aboriginal people in the development of surveys and aiming to achieve cultural security. Actions taken included consulting with local health workers during survey development, translation of key sections of the survey into the local Kimberley Kriol, and performing the surveys with the assistance of Aboriginal Community Researchers. The full survey is made available in this paper. The surveys were conducted with 200 community members during August 2015 and 203 in October 2015. Surveys were updated between the first and second waves based on learnings during implementation. Key implementation details around weather and timing, gender/kinship issues, group participation, declining participation, problematic questions and responses to the survey are described. Cultural safety was achieved but further steps could be taken to ensure future cultural security by embedding cultural safety protocols in the survey and further community consultation

Pediatric hospital admissions in Indigenous children: a population-based study in remote Australia

Background: We analysed hospital admissions of a predominantly Aboriginal cohort of children in the remote Fitzroy Valley in Western Australia during the first 7 years of life. Methods: All children born between January 1, 2002 and December 31, 2003 and living in the Fitzroy Valley in 2009-2010 were eligible to participate in the Lililwan Project. Of 134 eligible children, 127 (95%) completed Stage 1 (interviews of caregivers and medical record review) in 2011 and comprised our cohort. Lifetime (0-7 years) hospital admission data were available and included the dates, and reasons for admission, and comorbidities. Conditions were coded using ICD-10-AM discharge codes. Results: Of the 127 children, 95.3% were Indigenous and 52.8% male. There were 314 admissions for 424 conditions in 89 (70.0%) of 127 children. The 89 children admitted had a median of five admissions (range 1-12). Hospitalization rates were similar for both genders (p = 0.4). Of the admissions, 108 (38.6%) were for 56 infants aged <12 months (median = 2.5, range = 1-8). Twelve of these admissions were in neonates (aged 0-28 days). Primary reasons for admission (0-7 years) were infections of the lower respiratory tract (27.4%), gastrointestinal system (22.7%), and upper respiratory tract (11.4%), injury (7.0%), and failure to thrive (5.4%). Comorbidities, particularly upper respiratory tract infections (18.1%), failure to thrive (13.6%), and anaemia (12.7%), were common. In infancy, primary cause for admission were infections of the lower respiratory tract (40.8%), gastrointestinal (25.9%) and upper respiratory tract (9.3%). Comorbidities included upper respiratory tract infections (33.3%), failure to thrive (18.5%) and anaemia (18.5%). Conclusion: In the Fitzroy Valley 70.0% of children were hospitalised at least once before age 7 years and over one third of admissions were in infants. Infections were the most common reason for admission in all age groups but comorbidities were common and may contribute to need for admission. Many hospitalizations were feasibly preventable. High admission rates reflect disadvantage, remote location and limited access to primary healthcare and outpatient services. Ongoing public health prevention initiatives including breast feeding, vaccination, healthy diet, hygiene and housing improvements are crucial, as is training of Aboriginal Health Workers to increase services in remote communities.The Lililwan project is supported by the National Health and Medical Research Council of Australia (NHMRC) (Elizabeth Elliott, Practitioner Fellowships 457,084 and 1,021,480, and project grant 1,024,474); the Australian Research Council (Jane Latimer, Future Fellowship 0130007); the Australian Government Departments of Health and Ageing (DoHA); and Families, Housing, Community Services and Indigenous Affairs (FaHCSIA); Save the Children Australia, the Foundation for Alcohol Research and Education and the University of Sydney Poche Institute (Philippa Dossetor, Poche Scholarship). Pro bono support has been provided by M&C Saatchi, Blake Dawson solicitors, and the Australian Human Rights Commission. Alexandra Martiniuk is funded by an NHMRC TRIP (Translating Research into Practice) Fellowship (2016–2018). Philippa Dossetor is supported by a parttime PhD scholarship through the Australian National University Medical School and the College of Biology, Medicine and the Environment

RESEARCH Open Access

Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australi

Estimating EQ-5D utilities based on the Short-Form Long Term Conditions Questionnaire (LTCQ-8)

Purpose: The aim of this work was to develop a mapping algorithm for estimating EuroQoL 5 Dimension (EQ-5D) utilities from responses to the Long-Term Conditions Questionnaire (LTCQ), thus increasing LTCQ’s potential as a comprehensive outcome measure for evaluating integrated care initiatives. Methods: We combined data from three studies to give a total sample of 1334 responses. In each of the three datasets, we randomly selected 75% of the sample and combined the selected random samples to generate the estimation dataset, which consisted of 1001 patients. The unselected 25% observations from each dataset were combined to generate an internal validation dataset of 333 patients. We used direct mapping models by regressing responses to the LTCQ-8 directly onto EQ-5D-5L and EQ-5D-3L utilities as well as response (or indirect) mapping to predict the response level that patients selected for each of the five EQ-5D-5L domains. Several models were proposed and compared on mean squared error and mean absolute error. Results: A two-part model with OLS was the best performing based on the mean squared error (0.038) and mean absolute error (0.147) when estimating the EQ-5D-5L utilities. A multinomial response mapping model using LTCQ-8 responses was used to predict EQ-5D-5L responses levels. Conclusions: This study provides a mapping algorithm for estimating EQ-5D utilities from LTCQ responses. The results from this study can help broaden the applicability of the LTCQ by producing utility values for use in economic analyses

The IG-DMR and the MEG3-DMR at Human Chromosome 14q32.2: Hierarchical Interaction and Distinct Functional Properties as Imprinting Control Centers

Human chromosome 14q32.2 harbors the germline-derived primary DLK1-MEG3 intergenic differentially methylated region (IG-DMR) and the postfertilization-derived secondary MEG3-DMR, together with multiple imprinted genes. Although previous studies in cases with microdeletions and epimutations affecting both DMRs and paternal/maternal uniparental disomy 14-like phenotypes argue for a critical regulatory function of the two DMRs for the 14q32.2 imprinted region, the precise role of the individual DMR remains to be clarified. We studied an infant with upd(14)pat body and placental phenotypes and a heterozygous microdeletion involving the IG-DMR alone (patient 1) and a neonate with upd(14)pat body, but no placental phenotype and a heterozygous microdeletion involving the MEG3-DMR alone (patient 2). The results generated from the analysis of these two patients imply that the IG-DMR and the MEG3-DMR function as imprinting control centers in the placenta and the body, respectively, with a hierarchical interaction for the methylation pattern in the body governed by the IG-DMR. To our knowledge, this is the first study demonstrating an essential long-range imprinting regulatory function for the secondary DMR