The composite first person narrative: Texture, structure, and meaning in writing phenomenological descriptions

This paper illustrates the use of composite first person narrative interpretive methods, as described by Todres, across a range of phenomena. This methodology introduces texture into the presently understood structures of phenomena and thereby creates new understandings of the phenomenon, bringing about a form of understanding that is relationally alive that contributes to improved caring practices. The method is influenced by the work of Gendlin, Heidegger, van Manen, Gadamer, and Merleau-Ponty. The method's applicability to different research topics is demonstrated through the composite narratives of nursing students learning nursing practice in an accelerated and condensed program, obese female adolescents attempting weight control, chronically ill male parolees, and midlife women experiencing distress during menopause. Within current research, these four phenomena have been predominantly described and understood through quantified articulations that give the reader a structural understanding of the phenomena, but the more embodied or “contextual” human qualities of the phenomena are often not visible. The “what is it like” or the “unsaid” aspects of such human phenomena are not clear to the reader when proxies are used to “account for” a variety of situated conditions. This novel method is employed to re-present narrative data and findings from research through first person accounts that blend the voices of the participants with those of the researcher, emphasizing the connectedness, the “we” among all participants, researchers, and listeners. These re-presentations allow readers to develop more embodied understandings of both the texture and structure of each of the phenomena and illustrate the use of the composite account as a way for researchers to better understand and convey the wholeness of the experience of any phenomenon under inquiry

Rural HIV Stigma: It’s Not What We Thought It Was

Presenters describe an NIMH-study on the relationships between (1) HIV stigma and psychological symptoms, (2) how people with HIV describe their communities and their well-being, and (3) the actual expression of HIV stigma in the rural communities in which people with HIV reside and their perception that they are stigmatized. These findings challenge current thinking about research and intervention

The everyday experience of living with and managing a neurological condition (the LINC study): study design

Background: The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The “Living with the Impact of a Neurological Condition (LINC)” study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful. Methods/design: The LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a populationbased survey of adults (n = 1500), aged 17 and over and parents (n = 200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways. Discussion: The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life

Influence of Opioid Prescription Policy on Overdoses and Related Adverse Effects in a Primary Care Population

BACKGROUND: In response to the opioid epidemic, many states have enacted policies limiting opioid prescriptions. There is a paucity of evidence of the impact of opioid prescribing interventions in primary care populations, including whether unintended consequences arise from limiting the availability of prescribed opioids. OBJECTIVE: Our aim was to compare changes in opioid overdose and related adverse effects rate among primary care patients following the implementation of state-level prescribing policies. DESIGN: A cohort of primary care patients within an interrupted time series model. PARTICIPANTS: Electronic medical record data for 62,776 adult (18+ years) primary care patients from a major medical center in Vermont from January 1, 2016, to June 30, 2018. INTERVENTIONS: State-level opioid prescription policy changes limiting dose and duration. MAIN MEASURES: Changes in (1) opioid overdose rate and (2) opioid-related adverse effects rate per 100,000 person-months following the July 1, 2017, prescription policy change. KEY RESULTS: Among primary care patients, there was no change in opioid overdose rate following implementation of the prescribing policy (incidence rate ratio; IRR: 0.64, 95% confidence interval; CI: 0.22-1.88). There was a 78% decrease in the opioid-related adverse effects rate following the prescribing policy (IRR: 0.22, 95%CI: 0.09-0.51). This association was moderated by opioid prescription history, with decreases observed among opioid-naïve patients (IRR: 0.18, 95%CI: 0.06-0.59) and among patients receiving chronic opioid prescriptions (IRR: 0.17, 95%CI: 0.03-0.99), but not among those with intermittent opioid prescriptions (IRR: 0.51, 95%CI: 0.09-2.82). CONCLUSIONS: Limiting prescription opioids did not change the opioid overdose rate among primary care patients, but it reduced the rate of opioid-related adverse effects in the year following the state-level policy change, particularly among patients with chronic opioid prescription history and opioid-naïve patients. Limiting the quantity and duration of opioid prescriptions may have beneficial effects among primary care patients

Prescription opioid policies and associations with opioid overdose and related adverse effects

BACKGROUND: United States (US) policies to mitigate the opioid epidemic focus on reducing access to prescription opioids to prevent overdoses. We examined the impact of state policies in Vermont (July 2017) and Maine (July 2016) on opioid overdoses and opioid-related adverse effects. METHODS: Study population included patients 15 years and older in all-payer claims of Vermont (N = 597,683; Jan.2016-Dec.2018) and Maine (N = 1,370,960; Oct.2015-Dec.2017). We used interrupted time series analyses to assess the impact of opioid prescribing policies on monthly opioid overdose rate and opioid-related adverse effects rate. We used the International Classification of Disease-10-CM to identify overdoses (T40.0 × 1-T40.4 × 4, T40.601-T40.604, T40.691-T40.694) and adverse effects (T40.0 × 5, T40.2 × 5-T40.4 × 5, T40.605, T40.695). RESULTS: Immediately after the policy, the level of Vermont\u27s opioid overdose rate increased by 34% (95% confidence interval, CI: 1.09, 1.65) while the level of opioid-related adverse effects rate decreased by 29% (95% CI: 0.58, 0.87). In Maine, there was no level change in opioid overdose rate, but the slope of the adverse effects rate after the policy decreased by 3.5% (95% CI: 0.94, 0.99). These results varied within age and rurality subgroups in both states. CONCLUSION: While the decrease in rate of adverse effects following the policy changes is promising, the increase in Vermont\u27s opioid overdose rate may suggest there is an association between policy implementation and short-term risk to public health

The impact of disease duration on quality of life in children with nephrotic syndrome: a Midwest Pediatric Nephrology Consortium study

BACKGROUND: The Patient Reported Outcomes Measurement Information System (PROMIS) II is a prospective study that evaluates patient reported outcomes in pediatric chronic diseases as a measure of health-related quality of life (HRQOL). We have evaluated the influence of disease duration on HRQOL and, for the first time, compared the findings of the PROMIS measures to those of the PedsQL(™) 4.0 Generic Scales (PedsQL) from the PROMIS II nephrotic syndrome (NS) longitudinal cohort. METHODS: This was a prospective study in which 127 children (age range 8–17 years) with active NS from 14 centers were enrolled. Children with active NS defined as the presence of nephrotic range proteinuria (>2+ urinalysis and edema or urine protein/creatinine ratio >2 g/g) were eligible. Comparisons were made between children with prevalent (N=67) and incident (N=60) disease at the study enrollment visit. RESULTS: The PROMIS scores were worse in prevalent patients in the domains of peer relationship (p=0.01) and pain interference (p < 0.01). The PedsQL showed worse scores in prevalent patients for social functioning (p < 0.01) and school functioning (p = 0.03). Multivariable analyses showed that prevalent patients had worse scores in PROMIS pain interference (p=0.02) and PedsQL social functioning (p<0.01). CONCLUSION: The PROMIS measures detected a significant impact of disease duration on HRQOL in children, such that peer relationships were worse and pain interfered with daily life to a greater degree among those with longer disease duration. These findings were in agreement with those for similar domains in the PedsQL legacy instrument