Maskosis the healing journey of Little Bear : a narrative analysis of the life of an Aboriginal man with quadriplegia

A narrative analysis was used to explore the question, “What does it mean to be an Aboriginal man with quadriplegia?” Six in-depth semi-structured interviews and follow-up reviews were conducted with Dennis Sapp, a 52-year old Plains Cree man with quadriplegia who requested that his full name be used in the thesis document. The results of the study appear in the form of a life story written in the first person derived through a process of narrative analysis of the interview transcripts. The narrative details Dennis’ early beginnings on the Little Pine Reserve near North Battleford, Saskatchewan, Canada and his memories of his maternal grandfather, Cree elder and WWII Veteran, Tom Sapp, who raised Dennis in the traditional way until he was forced to go to the St. Anthony’s Residential School at Onion Lake at six years of age. The narrative includes an account of Dennis’ life before being taken to residential school, his experiences at residential school, and his life after leaving the school. In the narrative Dennis recounts the experience of losing his traditional culture and spirituality at residential school and the difficulties he encountered in his life as a result of the trauma of the residential school experience. He gives an account of sustaining a spinal cord injury and his experience post-injury and in rehabilitation. After reconnecting with his grandfather and returning to school to complete his education, Dennis rediscovered his traditional culture and spirituality and gained a renewed sense of meaning and purpose as a counsellor, disabilities advocate, and storyteller. Through regaining his culture and spirituality and sharing his story Dennis found balance and healing

Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Fourteen adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data; however, there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future

Understanding the Barriers and Facilitators to Sharing Patient-Generated Health Data Using Digital Technology for People Living with Long-Term Health Conditions: A Narrative Review

Using digital technology to share patient-generated health data has the potential to improve the self-management of multiple long-term health conditions. Sharing these data can allow patients to receive additional support from healthcare professionals and peer communities, as well as enhance their understanding of their own health. A deeper understanding of the concerns raised by those living with long-term health conditions when considering whether to share health data via digital technology may help to facilitate effective data sharing practices in the future. The aim of this review is to identify whether trust, identity, privacy and security concerns present barriers to the successful sharing of patient-generated data using digital technology by those living with long-term health conditions. We also address the impact of stigma on concerns surrounding sharing health data with others. Searches of CINAHL, PsychInfo and Web of Knowledge were conducted in December 2019 and again in October 2020 producing 2,581 results. An iterative review process resulted in a final dataset of 23 peer-reviewed articles. A thorough analysis of the selected articles found that issues surrounding trust, identity, privacy and security clearly present barriers to the sharing of patient-generated data across multiple sharing contexts. The presence of enacted stigma also acts as a barrier to sharing across multiple settings. We found that the majority of literature focuses on clinical settings with relatively little attention being given to sharing with third parties. Finally, we suggest the need for more solution-based research to overcome the discussed barriers to sharing

Understanding the attitudes and experiences of people living with potentially stigmatised long-term health conditions with respect to collecting and sharing health and lifestyle data

Background: The emerging landscape of patient-generated data (PGData) provides an opportunity to collect large quantities of information that can be used to develop our understanding of different health conditions and potentially improve the quality of life for those living with long-term health condition (LTHCs). If the potential benefits of PGData are to be realised, we need a better understanding of the psychological barriers and facilitators to the collection and beneficial sharing of health and lifestyle data. Due to the understudied role that stigma plays in sharing PGData, we explore the attitudes and experiences of those living with potentially stigmatised LTHCs with respect to collecting and sharing health and lifestyle data. Methods: This study used semi-structured interviews and a card sorting task to explore the attitudes and experiences of people living with potentially stigmatised LTHCs. Adult participants who reported having a range of conditions were recruited in England. Template analysis was used to analyse interview transcripts and descriptive statistics were used for the card sorting task. Results: The findings present four overarching themes: Preferences for collecting health and lifestyle data, Importance of anonymity, Expected use of data, and Sources of emotional support. Participants illustrated a general willingness to share health and lifestyle data however there were some notable differences in sharing experiences, varying both by information type and recipient group. Overall, participants did not identify health-related stigma as a barrier to collecting or sharing their personal health and lifestyle data. Conclusions: We outline a number of preferences that participants feel would encourage them to collect and share data more readily, which may be considered when developing data sharing tools for the future

Collecting and sharing self-generated health and lifestyle data: understanding barriers for people living with long-term health conditions – a survey study

Background: The growing popularity of collecting self-generated health and lifestyle data presents a valuable opportunity to develop our understanding of long-term health conditions (LTHCs) and improve care. Barriers remain to the effective sharing of health and lifestyle data by those living with LTHCs which include beliefs around concepts of Trust, Identity, Privacy and Security (TIPS), experiences of stigma, perceptions of risk and information sensitivity.Method:We surveyed 250 UK adults who reported living with a range of LTHCs. We recorded data to assess self-reported behaviours, experiences, attitudes and motivations relevant to sharing self-generated health and lifestyle data. We also asked participants about their beliefs about TIPS, stigma, and perceptions of risk and information sensitivity regarding their health and lifestyle data.Results: Three quarters of our sample reported recording information about their health and lifestyle on a daily basis. However two thirds reported never or rarely sharing this information with others. TIPS concerns were considered to be ‘very important’ by those with LTHCs when deciding whether or not to share self-generated health and lifestyle data with others, with security concerns considered most important. Of those living with a LTHC, 58 reported experiencing stigma associated with their condition. The greatest perceived risk from sharing with others was the potential for future harm to their social relationships.Conclusions:Our findings suggest that, in order for health professionals and researchers to benefit from the increased prevalence of self-generated health and lifestyle data, more can be done to address security concerns and to understand perceived risks associated with data sharing. Digital platforms aimed at facilitating the sharing of self-generated health and lifestyle data may look to highlight security features, enable users to control the sharing of certain information types, and emphasise the practical benefits to users of sharing health and lifestyle data with others

The Relationship of Maternal Prepregnancy Body Mass Index and Pregnancy Weight Gain to Neurocognitive Function at Age 10 Years among Children Born Extremely Preterm

OBJECTIVE: To assess the association between maternal prepregnancy body mass index and adequacy of pregnancy weight gain in relation to neurocognitive function in school-aged children born extremely preterm. STUDY DESIGN: Study participants were 535 ten-year-old children enrolled previously in the prospective multicenter Extremely Low Gestational Age Newborns cohort study who were products of singleton pregnancies. Soon after delivery, mothers provided information about prepregnancy weight. Prepregnancy body mass index and adequacy of weight gain were characterized based on this information. Children underwent a neurocognitive evaluation at 10 years of age. RESULTS: Maternal prepregnancy obesity was associated with increased odds of a lower score for Differential Ability Scales-II Verbal IQ, for Developmental Neuropsychological Assessment-II measures of processing speed and visual fine motor control, and for Wechsler Individual Achievement Test-III Spelling. Children born to mothers who gained an excessive amount of weight were at increased odds of a low score on the Oral and Written Language Scales Oral Expression assessment. Conversely, children whose mother did not gain an adequate amount of weight were at increased odds of a lower score on the Oral and Written Language Scales Oral Expression and Wechsler Individual Achievement Test-III Word Reading assessments. CONCLUSION: In this cohort of infants born extremely preterm, maternal obesity was associated with poorer performance on some assessments of neurocognitive function. Our findings are consistent with the observational and experimental literature and suggest that opportunities may exist to mitigate risk through education and behavioral intervention before pregnancy

Girls and Boys Born before 28 Weeks Gestation: Risks of Cognitive, Behavioral, and Neurologic Outcomes at Age 10 Years

To compare the prevalence of cognitive, neurological, and behavioral outcomes at 10 years of age in 428 girls and 446 boys who were born extremely preterm (EP)

The mammalian gene function resource: the International Knockout Mouse Consortium.

In 2007, the International Knockout Mouse Consortium (IKMC) made the ambitious promise to generate mutations in virtually every protein-coding gene of the mouse genome in a concerted worldwide action. Now, 5 years later, the IKMC members have developed high-throughput gene trapping and, in particular, gene-targeting pipelines and generated more than 17,400 mutant murine embryonic stem (ES) cell clones and more than 1,700 mutant mouse strains, most of them conditional. A common IKMC web portal (www.knockoutmouse.org) has been established, allowing easy access to this unparalleled biological resource. The IKMC materials considerably enhance functional gene annotation of the mammalian genome and will have a major impact on future biomedical research

BHPR research: qualitative1. Complex reasoning determines patients' perception of outcome following foot surgery in rheumatoid arhtritis

Background: Foot surgery is common in patients with RA but research into surgical outcomes is limited and conceptually flawed as current outcome measures lack face validity: to date no one has asked patients what is important to them. This study aimed to determine which factors are important to patients when evaluating the success of foot surgery in RA Methods: Semi structured interviews of RA patients who had undergone foot surgery were conducted and transcribed verbatim. Thematic analysis of interviews was conducted to explore issues that were important to patients. Results: 11 RA patients (9 ♂, mean age 59, dis dur = 22yrs, mean of 3 yrs post op) with mixed experiences of foot surgery were interviewed. Patients interpreted outcome in respect to a multitude of factors, frequently positive change in one aspect contrasted with negative opinions about another. Overall, four major themes emerged. Function: Functional ability & participation in valued activities were very important to patients. Walking ability was a key concern but patients interpreted levels of activity in light of other aspects of their disease, reflecting on change in functional ability more than overall level. Positive feelings of improved mobility were often moderated by negative self perception ("I mean, I still walk like a waddling duck”). Appearance: Appearance was important to almost all patients but perhaps the most complex theme of all. Physical appearance, foot shape, and footwear were closely interlinked, yet patients saw these as distinct separate concepts. Patients need to legitimize these feelings was clear and they frequently entered into a defensive repertoire ("it's not cosmetic surgery; it's something that's more important than that, you know?”). Clinician opinion: Surgeons' post operative evaluation of the procedure was very influential. The impact of this appraisal continued to affect patients' lasting impression irrespective of how the outcome compared to their initial goals ("when he'd done it ... he said that hasn't worked as good as he'd wanted to ... but the pain has gone”). Pain: Whilst pain was important to almost all patients, it appeared to be less important than the other themes. Pain was predominately raised when it influenced other themes, such as function; many still felt the need to legitimize their foot pain in order for health professionals to take it seriously ("in the end I went to my GP because it had happened a few times and I went to an orthopaedic surgeon who was quite dismissive of it, it was like what are you complaining about”). Conclusions: Patients interpret the outcome of foot surgery using a multitude of interrelated factors, particularly functional ability, appearance and surgeons' appraisal of the procedure. While pain was often noted, this appeared less important than other factors in the overall outcome of the surgery. Future research into foot surgery should incorporate the complexity of how patients determine their outcome Disclosure statement: All authors have declared no conflicts of interes