Lived experiences of informal caregivers of people with chronic musculoskeletal pain: a systematic review and meta-ethnography

BACKGROUND: People with chronic pain often seek support from friends and family for everyday tasks. These individuals are termed informal caregivers. There remains uncertainty regarding the lived experiences of these people who care for individuals with chronic musculoskeletal pain. The aim of this paper is to synthase the evidence on the lived experiences of informal caregivers providing care to people with chronic musculoskeletal pain. METHODS: A systematic literature review was undertaken of published and unpublished literature databases including: EMBASE, MEDLINE, CINAHL, PubMed, the WHO International Clinical Trial Registry and ClinicalTrials.gov registry (to September 2019). Qualitative studies exploring the lived experiences of informal caregivers of people with chronic musculoskeletal pain were included. Data were synthesised using a meta-ethnography approach. Evidence was evaluated using the Critical Appraisal Skills Programme (CASP) qualitative appraisal tool. RESULTS: From 534 citations, 10 studies were eligible (360 participants: 171 informal caregivers of 189 care recipients). The evidence was moderate quality. Seven themes arose: the relationship of caregivers to healthcare professionals, role reversal with care recipients; acting the confidant to the care recipient; a constant burden in caregiving; legitimising care recipient’s condition; knowledge and skills to provide caregiving; and the perception of other family members and wider-society to the caregiver/care recipient dyad. CONCLUSIONS: The lived experiences of caregivers of people with chronic musculoskeletal pain is complex and dynamic. There is an inter-connected relationship between caregivers, care recipients and healthcare professionals. Exploring how these experiences can be modified to improve a caregiving dyad’s lived experience is now warranted

Questionnaire study to gain an insight into the manufacturing and fitting process of artificial eyes in children: an ocularist perspective

Purpose To gain an insight into the manufacturing and fitting of artificial eyes in children and potential improvements to the process. Method An online qualitative survey was distributed to 39 ocularists/prosthetists in Europe and Canada. Participants were recruited through purposive sampling, specifically maximum variation sampling from the researcher’s contacts and an online search. Results The findings highlighted the current impression technique as being the most difficult yet most important part of the current process for both the ocularist and child patient. Negatively affecting obtaining a good impression, the child patients distress can be reduced by their parents by providing encouragement, reassurance, practicing the insertion and removal of the artificial eye and being matter of fact. Whilst improvements to the current process provided mixed views, the incorporation of current technology was perceived as not being able to meet the requirements to produce aesthetically pleasing artificial eyes. Conclusion The current artificial eye process can be seen as an interaction with its success being dependent on the child patient’s acceptance and adjustment which is dependent on the factors associated to the process. Investigation into the needs of the patient and whether technology can improve the process are the next steps in its advancement

"I try and smile, I try and be cheery, I try not to be pushy. I try to say ‘I’m here for help’ but I leave feeling… worried’’: A qualitative study of perceptions of interactions with health professionals by community-based older adults with chronic pain

Background: Over 50% of community-dwelling older adults experience chronic pain, which threatens their quality of life. Of importance to their pain management is older people’s interaction with health professionals that, if unsatisfactory, may impair the outcome. Aims: To add to the limited research specific to older people living with chronic pain in the community, we explored how they perceive their experiences of interacting with health professionals, seeking factors that might optimise these interactions. Methods: Purposive sampling was used to recruit men and women .65 years with self-reported musculoskeletal chronic pain. Qualitative individual interviews and one group interview were undertaken with 23 participants. Data were transcribed verbatim and underwent Framework Analysis. Results: Three themes were identified. Seeking help illustrates issues around why older people in the community may or may not seek help for chronic pain, and highlights the potential involvement of social comparison. Importance of diagnosis illustrates the desire for professional validation of their condition and an aversion to vague explanations based on the person’s age. Being listened to and being heard illustrates the importance of empathic communication and understanding expectations, with due respect for the person’s age. Conclusions: In common with people of all ages, an effective partnership between an older person in pain and health professionals is essential if pain is to be reported, appropriately assessed and managed, because of the subjective nature of pain and its treatment responses. For older people with pain, perception about their age, by both parties in the partnership, is an additional factor that can unnecessarily interfere with the effectiveness of this partnership. Health professionals should engage with older adults to clarify their expectations about pain and its management, which may be influenced by perceptions about age; and to encourage expression of their concerns, which may also be affected by perceptions about age

Estimating the Total Number of Susceptibility Variants Underlying Complex Diseases from Genome-Wide Association Studies

Recently genome-wide association studies (GWAS) have identified numerous susceptibility variants for complex diseases. In this study we proposed several approaches to estimate the total number of variants underlying these diseases. We assume that the variance explained by genetic markers (Vg) follow an exponential distribution, which is justified by previous studies on theories of adaptation. Our aim is to fit the observed distribution of Vg from GWAS to its theoretical distribution. The number of variants is obtained by the heritability divided by the estimated mean of the exponential distribution. In practice, due to limited sample sizes, there is insufficient power to detect variants with small effects. Therefore the power was taken into account in fitting. Besides considering the most significant variants, we also tried to relax the significance threshold, allowing more markers to be fitted. The effects of false positive variants were removed by considering the local false discovery rates. In addition, we developed an alternative approach by directly fitting the z-statistics from GWAS to its theoretical distribution. In all cases, the “winner's curse” effect was corrected analytically. Confidence intervals were also derived. Simulations were performed to compare and verify the performance of different estimators (which incorporates various means of winner's curse correction) and the coverage of the proposed analytic confidence intervals. Our methodology only requires summary statistics and is able to handle both binary and continuous traits. Finally we applied the methods to a few real disease examples (lipid traits, type 2 diabetes and Crohn's disease) and estimated that hundreds to nearly a thousand variants underlie these traits

Medical student teaching in the UK: how well are newly qualified doctors prepared for their role caring for patients with cancer in hospital?

A number of studies have identified problems with undergraduate oncology teaching. We have investigated how well prepared newly qualified doctors (first foundation year, or FY1 doctors) are for treating patients with cancer. Twenty-five FY1 doctors and 15 senior doctors participated in interviews. We turned the emergent themes into a questionnaire for all 5143 UK FY1 doctors in 2005. The response rate was 43% (2062 responses). Sixty-one percent of FY1 doctors had received oncology teaching at medical school, but 31% recalled seeing fewer than 10 patients with cancer. Forty percent of FY1 doctors felt prepared for looking after patients with cancer. Sixty-five percent felt prepared for diagnosing cancer, 15% felt they knew enough about chemotherapy and radiotherapy, and 11% felt prepared for dealing with oncological emergencies. Respondents believed medical students should learn about symptom control (71%) and communication skills (41%). Respondents who had received oncology teaching were more likely to feel prepared for looking after patients with cancer (OR 1.52; 95% CI 1.14–2.04). Preparedness also correlated with exposure to patients with cancer (OR 1.48; 95% CI 1.22–1.79). We have found worryingly low levels of exposure of medical students to patients with cancer. First foundation year doctors lack knowledge about cancer care and symptom control. Oncologists should maintain involvement in undergraduate teaching, and encourage greater involvement of patients in this teaching

Prehospital Electronic Patient Care Report Systems: Early Experiences from Emergency Medical Services Agency Leaders

Background: As the United States embraces electronic health records (EHRs), improved emergency medical services (EMS) information systems are also a priority; however, little is known about the experiences of EMS agencies as they adopt and implement electronic patient care report (e-PCR) systems. We sought to characterize motivations for adoption of e-PCR systems, challenges associated with adoption and implementation, and emerging implementation strategies. Methods: We conducted a qualitative study using semi-structured in-depth interviews with EMS agency leaders. Participants were recruited through a web-based survey of National Association of EMS Physicians (NAEMSP) members, a didactic session at the 2010 NAEMSP Annual Meeting, and snowball sampling. Interviews lasted approximately 30 minutes, were recorded and professionally transcribed. Analysis was conducted by a five-person team, employing the constant comparative method to identify recurrent themes. Results: Twenty-three interviewees represented 20 EMS agencies from the United States and Canada; 14 EMS agencies were currently using e-PCR systems. The primary reason for adoption was the potential for e-PCR systems to support quality assurance efforts. Challenges to e-PCR system adoption included those common to any health information technology project, as well as challenges unique to the prehospital setting, including: fear of increased ambulance run times leading to decreased ambulance availability, difficulty integrating with existing hospital information systems, and unfunded mandates requiring adoption of e-PCR systems. Three recurring strategies emerged to improve e-PCR system adoption and implementation: 1) identify creative funding sources; 2) leverage regional health information organizations; and 3) build internal information technology capacity. Conclusion: EMS agencies are highly motivated to adopt e-PCR systems to support quality assurance efforts; however, adoption and implementation of e-PCR systems has been challenging for many. Emerging strategies from EMS agencies and others that have successfully implemented EHRs may be useful in expanding e-PCR system use and facilitating this transition for other EMS agencies

Introduction to “Binary Binds”: Deconstructing Sex and Gender Dichotomies in Archaeological Practice

YesGender archaeology has made significant strides toward deconstructing the hegemony of binary categorizations. Challenging dichotomies such as man/woman, sex/gender, and biology/culture, approaches informed by poststructuralist, feminist, and queer theories have moved beyond essentialist and universalist identity constructs to more nuanced configurations. Despite the theoretical emphasis on context, multiplicity, and fluidity, binary starting points continue to streamline the spectrum of variability that is recognized, often reproducing normative assumptions in the evidence. The contributors to this special issue confront how sex, gender, and sexuality categories condition analytical visibility, aiming to develop approaches that respond to the complexity of theory in archaeological practice. The papers push the ontological and epistemological boundaries of bodies, personhood, and archaeological possibility, challenging a priori assumptions that contain how sex, gender, and sexuality categories are constituted and related to each other. Foregrounding intersectional approaches that engage with ambiguity, variability, and difference, this special issue seeks to “de-contain” categories, assumptions, and practices from “binding” our analytical gaze toward only certain kinds of persons and knowledges, in interpretations of the past and practices in the present

Is the impact of hospital performance data greater in patients who have compared hospitals?

<p>Abstract</p> <p>Background</p> <p>Public information on average has limited impact on patients' hospital choice. However, the impact may be greater in consumers who have compared hospitals prior to their hospital choice. We therefore assessed whether patients who have compared hospitals based their hospital choice mainly on public information, rather than e.g. advice of their general practitioner and consider other information important than patients who have not compared hospitals.</p> <p>Methods</p> <p>337 new surgical patients completed an internet-based questionnaire. They were asked whether they had compared hospitals prior to their hospital choice and which factors influenced their choice. They were also asked to select between four and ten items of hospital information (total: 41 items) relevant for their future hospital choice. These were subsequently used in a hospital choice experiment in which participants were asked to compare hospitals in an Adaptive Choice-Based Conjoint analysis to estimate which of the hospital characteristics had the highest Relative Importance (RI).</p> <p>Results</p> <p>Patients who have compared hospitals more often used public information for their hospital choice than patients who have not compared hospitals (12.7% vs. 1.5%, p < 0.001). However, they still mostly relied on their own (47.9%) and other people's experiences (31%) rather than to base their decision on public information. Both groups valued physician's expertise (RI 20.2 [16.6-24.8] in patients comparing hospitals vs. 16.5 [14.2-18.8] in patients not comparing hospitals) and waiting time (RI 15.1 [10.7-19.6] vs. 15.6 [13.2-17.9] respectively) as most important public information. Patients who have compared hospitals assigned greater importance to information on wound infections (p = 0.010) and respect for patients (p = 0.022), but lower importance to hospital distance (p = 0.041).</p> <p>Conclusion</p> <p>Public information has limited impact on patient's hospital choice, even in patients who have actually compared hospitals prior to hospital choice.</p

Instruments to measure patient experience of healthcare quality in hospitals: a systematic review

Improving and sustaining the quality of hospital care is an international challenge. Patient experience data can be used to target improvement and research. However, the use of patient experience data has been hindered by confusion over multiple instruments (questionnaires) with unknown psychometric testing and utility.MethodsWe conducted a systematic review and utility critique of questionnaires to measure patient experience of healthcare quality in hospitals. Databases (Medical Literature Analysis and Retrieval System (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychological Information (PsychINFO) and Web of Knowledge until end of November 2013) and grey literature were scrutinised. Inclusion criteria were applied to all records with a 10 % sample independently checked. Critique included (1) application of COSMIN checklists to assess the quality of each psychometric study, (2) critique of psychometric results of each study using Terwee et al. criteria and (3) development and critique of additional aspects of utility for each instrument. Two independent reviewers completed each critique. Synthesis included combining findings in a utility matrix.We obtained 1157 records. Of these, 26 papers measuring patient experience of hospital quality of care were identified examining 11 international instruments. We found evidence of extensive theoretical/development work. The quality of methods and results was variable but mostly of a high standard. Additional aspects of utility found that (1) cost efficiency was mostly poor, due to the resource necessary to obtain reliable samples; (2) acceptability of most instruments was good and (3) educational impact was variable, with evidence on the ease of use, for approximately half of the questionnaires.ConclusionsSelecting the right patient experience instrument depends on a balanced consideration of aspects of utility, aided by the matrix. Data required for high stakes purposes requires a high degree of reliability and validity, while those used for quality improvement may tolerate lower levels of reliability in favour of other aspects of utility (educational impact, cost and acceptability)