Using a narrative analysis, what is the lived experience of people (and their partners where appropriate) who have gastrointestinal symptoms following pelvic radiotherapy for pelvic cancer
Ontology highlight
ABSTRACT:
DISEASE(S): Pelvic Radiation Disease
PROVIDER: 2409345 | ecrin-mdr-crc |
REPOSITORIES: ECRIN MDR
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Project description:We investigate the genetic architecture of pelvis development at the regulatory and transcriptomic level.
2022-02-01 | GSE165936 | GEO
Project description:We investigate the genetic architecture of pelvis development at the regulatory and transcriptomic level.
2022-02-01 | GSE165930 | GEO
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Project description:Background: Behavioral and psychological symptoms of dementia (BPSD, also known as neuropsychiatric symptoms (NPS), changed behaviors and responsive behaviors), occur in up to 90 percent of people living with dementia (PLWD). These symptoms and behaviors strongly correlate with functional and cognitive impairment and contribute to ~30% of overall dementia costs. As decisions regarding care and strategies for BPSD are generally based on professional frames of reference, this study investigates whether the perspectives of PLWD and families/care partner on BPSD terminology can inform a more nuanced conceptualization of BPSD. Methods: PLWD and families/care partners participated in one-on-one semi-structured interviews. A thematic iterative approach was used to code the data and identify common themes until theoretical saturation was reached. Themes were compared between groups. Data were analyzed deductively in relation to pre-existing terminology regarding BPSD, and inductively to discover new ideas on use of such terminology as perceived by PLWD and others. Results: Forty-one volunteers were interviewed: 21 PLWD, mean age 71 yrs, mean Mini-Mental State Examination score 25, and 20 family members/care partners. Three main themes emerged from the data: (1) descriptions of BPSD from people with lived experience compared to clinical terms, (2) viewpoints on interpreting causes, and (3) experiences of concurrent BPSD. The experiences described and terms used by PLWD and families/care partners differed from terms used in existing professional frameworks (e.g., "disinhibition" described as 'loss of filter') and there were differences between PLWD and family members' interpretations of BPSD causes. Discussion/Conclusion: Reports from PLWD and families/carers describing their experiences of BPSD suggest a reconceptualization of BPSD terminology is needed to understand and de-stigmatize these symptoms and behaviors. For example, the term "agitated/hard to handle" would benefit by clearer, contextualized description, such as "frustrated with cognitive decline, discriminatory behavior and inadequate support systems." In better understanding individual expressions of BPSD, families, professionals and societies will be able to respond in ways that are helpful for PLWD. An informed, integrated understanding of BPSD and improved terminology use will have the potential to improve the quality of care and support for PLWD.
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Project description:BackgroundNonalcoholic fatty liver disease (NAFLD) is a highly prevalent condition strongly associated with obesity that can result in premature death. Little is known about the symptoms experience in this progressive disease, preventing health care providers from intervening in the early stages.PurposeThis study explicated symptoms in persons with NAFLD at higher risk of disease progression defined as the presence of one or two copies of the PNPLA3 (rs738409)-G allele.MethodGuided by the Symptoms Experience Model, 42 persons older than 21 years of age with diagnosed NAFLD were recruited from Western Michigan specialty offices in this cross-sectional descriptive study design. The Memorial Symptom Assessment Scale was used to measure the symptoms experience.DiscussionParticipants (97%) experienced 1 or more symptoms (average number of symptoms 12.02, standard deviation = 8.817). There was no statistically significant relationship between symptoms and the PNPLA3 (rs738409) variants. Significant predictors of mean frequency, severity, and distress of symptoms (the Total Memorial Symptom Scale) (F[15, 25] = 2.609, p = .016) were identified.ConclusionPeople with NAFLD experience an average of 12 symptoms.
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Project description:The Cancer Experience Registry: An Online Survey Research Study to Understand the Experiences of Those Impacted By a Cancer Diagnosis. The Registry is a web-based platform to distribute cross-sectional and longitudinal surveys. Study surveys are designed based on input from advisor experts, including patients and caregivers, and focus on the social, emotional, physical, financial and decision-making experiences of those who have been diagnosed with cancer and their caregivers. Findings contribute toward enhancing care for patients, survivors and caregivers via programming and policy initiatives.
| 2181551 | ecrin-mdr-crc
Project description:ObjectiveAs cognitive impairment progresses, people with dementia increasingly rely on surrogate decision-makers for everyday activities. Yet, little is known about concordance on everyday preferences between persons with cognitive impairment and their care partners.MethodsThe sample included 69 dyads of persons with cognitive impairment (Clinical Dementia Rating Scale ≥0.5) and their care partners. We used the Preferences for Everyday Living Inventory (PELI) to assess preferences for activities and lifestyle choices among persons with cognitive impairment. The PELI was concurrently but separately administered to care partners, who answered as surrogate decision-makers. Factor analysis was used to ascertain factor structure of the PELI; reliability measures were computed within the sample. Paired sample t-tests were used to estimate differences in scores of corresponding PELI items for each factor. Multiple regression models were used to relate predictors, including neuropsychiatric symptoms, to agreement levels.ResultsFour factors were identified from the PELI: autonomous choice, social engagement, personal growth, and keeping a routine. Significant participant-care partner discrepancy was found in "social engagement" preferences (e.g., regular contact with family, meeting new people, volunteering). Geriatric Depression Scale-15 score and care partner sex were significantly associated with participant-care partner discrepancies in "social engagement" preferences.ConclusionThis study yields new insights regarding the most important preferences for persons with cognitive impairment and clarifies a path to optimizing surrogate decision-making around everyday preferences by highlighting areas of apparent disagreement and identifying potential predictors of discrepancy.
| S-EPMC7415491 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic is impacting the physical and emotional health of older adults living with dementia and their care partners.ObjectiveUsing a patient-centered approach, we explored the experiences and needs of people living with dementia and their care partners during the COVID-19 pandemic as part of an ongoing evaluation of dementia support services in British Columbia, Canada.MethodsA survey instrument was developed around the priorities identified in the context of the COVID-19 and Dementia Task Force convened by the Alzheimer Society of Canada.ResultsA total of 417 surveys were analyzed. Overall, respondents were able to access information that was helpful for maintaining their own health and managing a period of social distancing. Care partners reported a number of serious concerns, including the inability to visit the person that they care for in long-term or palliative care. Participants also reported that the pandemic increased their levels of stress overall and that they felt lonelier and more isolated than they did before the pandemic. The use of technology was reported as a way to connect socially with their loved ones, with the majority of participants connecting with others at least twice per week.ConclusionLooking at the complex effects of a global pandemic through the experiences of people living with dementia and their care partners is vital to inform healthcare priorities to restore their quality of life and health and better prepare for the future.
| S-EPMC8075406 | biostudies-literature
Project description:See https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-of-5ala-in-bowel-cancer-surgery-glisten
| 2423999 | ecrin-mdr-crc
Project description:Positive experiences, such as social interaction, cognitive training and physical exercise, have been shown to ameliorate some of the harms to cognition associated with ageing. Animal models of positive interventions, commonly known as environmental enrichment, strongly influence neuronal morphology and synaptic function and enhance cognitive performance. While the profound structural and functional benefits of enrichment have been appreciated for decades, little is known as to how the environment influences neurons to respond and adapt to these positive sensory experiences. We show that adult and aged male wild-type mice that underwent a 10-week environmental enrichment protocol demonstrated improved performance in a variety of behavioural tasks, including those testing spatial working and spatial reference memory, and an enhancement in hippocampal LTP. Aged animals in particular benefitted from enrichment, performing spatial memory tasks at levels similar to healthy adult mice. Many of these benefits, including in gene expression, were absent in mice with a mutation in an enzyme, MSK1, which is activated by BDNF, a growth factor implicated in rodent and human cognition. We conclude that enrichment is beneficial across the lifespan and that MSK1 is required for the full extent of these experience-induced improvements of cognitive abilities, synaptic plasticity and gene expression.
2023-06-20 | GSE235037 | GEO