Understanding the health and social care needs of people living with IBD: A meta-synthesis of the evidence

AIM: To undertake a metasynthesis of qualitative studies to understand the health and social needs of people living with inflammatory bowel disease (IBD). METHODS: A systematic search strategy identified qualitative studies exploring the phenomenon of living with inflammatory bowel disease. Databases included MEDLINE, PsychInfo, EMBASE, CINAHL and the British Nursing Index via the OVID platform. Qualitative search filters were adapted from Hedges database (http://www.urmc.rochester.edu/hslt/miner/digital_library/tip_sheets/Cinahl_eb_filters.pdf). Qualitative empirical studies exploring the health and social needs of people living with inflammatory bowel disease were selected. Study eligibility and data extraction were independently completed using the Critical Appraisal Skills Programme for qualitative studies. The studies were analysed and synthesised using metasynthesis methodology. The themes from the studies allowed for common translations into a new interpretation of the impact of living with inflammatory bowel disease. RESULTS: Of 1395 studies, six published studies and one unpublished thesis fulfilled the inclusion criteria. First iteration of synthesis identified 16 themes, 2nd iteration synthesised these into three main 2nd order constructs: “detained by the disease”; “living in a world of disease” and “wrestling with life”. “Detained by the disease” is the fear of incontinence, the behaviour the patients display due to the fear, and the impact this has on the individual, such as social isolation and missing out on life events. All of these serve to “pull” the patient back from normal living. “Living in a world of disease” is the long term effects of living with a long term condition and the fear of these effects. “Wrestling with life” is the continued fight to thrive, the “push” to continue normal living. CONCLUSION: The metasynthesis provides a comprehensive representation of living with IBD. The unmistakeable burden of incontinence is exposed and its ongoing effects are demonstrated. The combined overall impact of living with IBD is the tension these patients live with: “Pushed and pulled: a compromised life”, people living with IBD experience a constant conflict throughout their lives, they push to be normal but IBD pulls them back. The impact of the fear of incontinence and behaviour of the individual as a result, requires further qualitative enquiry

A qualitative exploration of barriers and facilitatorsto adherence to an online self-help intervention for cancer-related distress

This author accepted manuscript is made available following 12 month embargo from date of publication (March 2017) in accordance with the publisher’s copyright policyObjective This study qualitatively explored barriers and facilitators of adherence to an online psychological intervention for cancer-related distress. Methods Semi-structured interviews were conducted with 13 adults with cancer, randomised to receive either a 6-week intervention (n = 8) or attention control (n = 5) as part of a larger RCT. Transcripts were coded for themes and subthemes, and recruitment ceased when saturation of themes occurred. Results Adherence overall was high: six participants completed all six modules, three completed five modules, two completed four modules, one completed one module, and one did not access the program. The total numbers of barriers (n = 19) and facilitators (n = 17) identified were equivalent and were categorised into five overarching themes: illness factors, psychological factors, personal factors, intervention factors and computer factors. However, the prevalence with which themes were discussed differed: illness factors (specifically cancer treatment side effects) were the main reported barrier to adherence; intervention factors (email reminders, program satisfaction, ease of use, program content) were the most common facilitators. Conclusion While some factors were cited as both facilitating and barring adherence, and therefore reflective of personal preferences and circumstances, a number of recommendations were derived regarding (i) the best timing for online interventions and (ii) the need for multi-platform programs

Consideration of First Nations’ cultural values in mine site rehabilitation by environmental professionals

Rehabilitation of mined land on First Nations’ country after mine closure must achieve particular criteria to be considered successful. Generally, these conditions are based on achieving a habitable condition that is more or less similar to analogue sites or to the pre–mining state. Rehabilitating a site to a habitable condition requires the restoration of cultural values, as well as environmental and economic values. This study investigates the extent to which First Nations’ cultural values are considered in mine rehabilitation in northern Australia. Interviews were conducted with environment professionals who had experience rehabilitating mine sites on First Nations’ land in the Northern Territory, Australia. The participants were asked about their experiences restoring First Nations’ cultural values to mined land. Thematic analysis found six main themes: “Values” (which need to be restored); “Planning” (of rehabilitation activities); “Impediments/barriers” (to successful rehabilitation); “Solutions” (to the barriers); “Traditional Owners” and “Principles”. This study shows that mining environmental professionals argue that, with suitable political and corporate support, many cultural values could be restored. However, it was generally agreed that government oversight and regulation in relation to reinstatement of First Nations’ cultural values needed to be improved. Several participants suggested that greater consideration should be given to closure plans generally, to financial means to carry out rehabilitation, and specifically to planning to identify and address the rehabilitation of First Nations’ cultural values prior to approval. Other findings were also that First Nations’ cultural values and environmental values are closely aligned, and that consultation and effective communication with Traditional Owners are the key to integrating awareness of First Nations’ cultural values into mine rehabilitation practices

Understanding the information needs of perinatal women: the role of technology support tools for new mothers

Information seeking during the perinatal period (the period spanning pregnancy to twelve months post giving birth) comprises of several methods women use to meet information needs and gain support through pregnancy and early motherhood. Perinatal women have been shown to rely on healthcare professionals such as midwives and technology-based platforms to provide information relating to maternal and infant health. However, women have described ‘gaps in care’ which occur during early pregnancy (first trimester), prior to labour and the postnatal period. Postnatal mothers have a need for additional support and information after giving birth as new mothers experience less contact with healthcare professionals and access to referral services is limited in the UK. Less is known about the postnatal ‘gap in care’, how digital information sources tailor towards this period and how maternity services are providing postnatal care to new mothers. This thesis set out to examine further i) the changing information needs of perinatal women, ii) the role of healthcare professionals in providing information and support to new mothers, and iii) how technology sources are utilised during the perinatal period. Three research questions were investigated through a mixed-methods approach across five studies. Qualitative findings identified a ‘timeline of information needs’ during pregnancy and motherhood, particularly focusing on the gaps in care experienced and the need for information often acquired through technology-based platforms. Mobile health apps for pregnancy have been shown to be beneficial for perinatal women seeking information and they increase wellbeing and encouraging self-reflection. Mobile apps specific to motherhood are seldom seen, however. A final quantitative study examined predictors of a journal-based concept app tailored towards new mothers based on an extended Technology Acceptance Model and found ‘perceived usefulness’ to be the most important predictor of intention to use. Findings from this thesis have provided a deeper understanding of the information work of new mothers and shown how the implementation of technology-based support tools to maternity services for new mothers has the potential to encourage self-reflection increase communication with healthcare professionals and improve the mental health and wellbeing of new mothers

The Evaluation and Followup of Children Referred to Pediatric Endocrinologists for Short Stature

Objective. To characterize the pediatric endocrinologists' evaluation and followup of short-statured patients. Study Design. Observational study of 21,548 short-statured children (April 1996 to December 1999). Baseline demographics, laboratory testing, height standard deviation score (SDS), target height, and height relative to target height were analyzed at initial and return visits with the specialist. Patients were scheduled for at least one return visit and no recombinant human growth hormone therapy was administered. Results. Mean patient age was 8.6 years with a mean height SDS of −2.1. Patients were predominantly male (69%), prepubertal (73%), and white (76%). Few screening tests were obtained during initial evaluation. Nearly 40% of children did not return for their second scheduled visit. The follow-up rate was unrelated to demographics or degree of short stature. Conclusions. Low return rates limit specialists' ability to monitor growth or obtain laboratory testing over time. Further studies are needed to determine which tests should be obtained at the initial clinic visit as well as the basis for the low return rate in this group of children

Evidence from Detrital Zircon Ages for Middle Pennsylvanian Uplift and Drainage in the Source Area of the Chariton Conglomerate and Marmaton Group Sandstones, Southern Iowa and Northern Missouri

The Chariton Conglomerate is a quartz/limestone conglomerate of Middle Pennsylvanian age sparsely exposed in southern Iowa and northern Missouri. In Iowa it is characterized by quartz granules and rounded crinoid columnals. The objective of this study was to use detrital zircon ages to determine the provenance of the Chariton Conglomerate and possibly associated Marmaton Group sandstone beds. Detrital zircon ages were obtained for five conglomerate and two sandstone beds of the Chariton Conglomerate in Iowa, three conglomerate beds of the Chariton Conglomerate in Missouri, and two sandstone beds of the Marmaton Group in Iowa. According to the Kolmogorov-Smirnoff Test, the 12 detrital zircon age spectra were statistically indistinguishable, consistent with a common provenance for all beds. The combined age spectrum (879 zircons) showed both a young cluster (1.1 % of zircons) in the range 320-364 Ma (Late Devonian Period - Late Mississippian Subperiod) and a much older cluster (0.3% of zircons) in the range 3198-3269 Ma (Paleoarchean - Mesoarchean Eras). The Devonian Period - Mississippian Subperiod (318--416 Ma) and the Paleoarchean-Mesoarchean Eras (2800-3600 Ma) accounted for 2.8% and 3.6% of zircon ages, respectively. A model consistent with the above ages and the paleocurrent directions in the Chariton Conglomerate is an Early - Middle Pennsylvanian river originating in the Devonian - Mississippian crystalline rocks of New England and entering Minnesota - Wisconsin from the northeast to collect sediments from crystalline rocks of Paleoarchean - Mesoarchean age. However, a Middle Pennsylvanian uplift in the Minnesota - Wisconsin region is also required to produce the headwaters necessary for the production of quartz granules, which is consistent with the model of hotspot epeirogen

Finding My Way: protocol of a randomised controlled trial evaluating an internet self-help program for cancer-related distress

© 2015 Beatty et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.BACKGROUND: A cancer diagnosis elicits greater distress than any other medical diagnosis, and yet very few studies have evaluated the efficacy of structured online self-help therapeutic programs to alleviate this distress. This study aims to assess the efficacy over time of an internet Cognitive Behaviour Therapy (iCBT) intervention ('Finding My Way') in improving distress, coping and quality of life for individuals with a recent diagnosis of early stage cancer of any type. METHODS/DESIGN: The study is a multi-site Randomised Controlled Trial (RCT) seeking to enrol 188 participants who will be randomised to either the Finding My Way Intervention or an attention-control condition. Both conditions are delivered online; with 6 modules released once per week, and an additional booster module released one month after program-completion. Participants complete online questionnaires on 4 occasions: at baseline (immediately prior to accessing the modules); post-treatment (immediately after program-completion); then three and six months later. Primary outcomes are general distress and cancer-specific distress, with secondary outcomes including Health-Related Quality of Life (HRQoL), coping, health service utilisation, intervention adherence, and user satisfaction. A range of baseline measures will be assessed as potential moderators of outcomes. Eligible participants are individuals recently diagnosed with any type of cancer, being treated with curative intent, aged over 18 years with sufficient English language literacy, internet access and an active email account and phone number. Participants are blinded to treatment group allocation. Randomisation is computer generated and stratified by gender. DISCUSSION: Compared to the few prior published studies, Finding My Way will be the first adequately powered trial to offer an iCBT intervention to curatively treated patients of heterogeneous cancer types in the immediate post-diagnosis/treatment period. If found efficacious, Finding My Way will assist with overcoming common barriers to face-to-face therapy in a cost-effective and accessible way, thus helping to reduce distress after cancer diagnosis and consequently decrease the cancer burden for individuals and the health system. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613000001796 16.10.13

Autobed: A Web-Controlled Robotic Bed

We (the Healthcare Robotics Lab at Georgia Tech) have developed an additional module for an Invacare fully electric hospital bed (Model 5410IVC) so that the bed can be controlled from a web-based interface. This module can be easily plugged between the hand control and the Invacare bed, without having to modify any existing hardware on the bed. We call a bed so modified an 'Autobed.' With this feature, users who are unable to operate the standard bed controls, but can access a web browser, are able to position the bed by themselves without having to rely on a caregiver (for example, patients with quadriplegia). This page describes how to make the Autobed module using relatively inexpensive, commercially available hardware. This document is a representation of the content provided at http://hsi.gatech.edu/hrl/project_autobed_v2.shtml as of February 15th, 2016, and is intended to create a lasting, citable, and archival copy of this material, which details the design and instructions for building the 'Autobed' device