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
Project description:See https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-at-different-types-of-stent-to-treat-bowel-obstruction-in-people-with-bowel-cancer
| 2419603 | ecrin-mdr-crc
Project description:BackgroundWomen participate in sport at lower rates than men, and face unique challenges to participation. One in three women across all sports experience pelvic floor (PF) symptoms such as urinary incontinence during training/competition. There is a dearth of qualitative literature on women's experiences of playing sport/exercising with PF symptoms. The purpose of this study was to explore the lived experience of symptomatic women within sports/exercise settings and the impact of PF symptoms on sports/exercise participation using in-depth semi-structured interviews.ResultsTwenty-three women (age 26-61 years) who had experienced a breadth of PF symptom type, severity and bother during sport/exercise participated in one-one interviews. Women played a variety of sports and levels of participation. Qualitative content analysis was applied leading to identification of four main themes: (1) I can't exercise the way I would like to (2) it affects my emotional and social well-being, (3) where I exercise affects my experience and (4) there is so much planning to be able to exercise. Women reported extensive impact on their ability to participate in their preferred type, intensity and frequency of exercise. Women experienced judgement from others, anger, fear of symptoms becoming known and isolation from teams/group exercise settings as a consequence of symptoms. Meticulous and restrictive coping strategies were needed to limit symptom provocation during exercise, including limiting fluid intake and careful consideration of clothing/containment options.ConclusionExperiencing PF symptoms during sport/exercise caused considerable limitation to participation. Generation of negative emotions and pain-staking coping strategies to avoid symptoms, limited the social and mental health benefits typically associated with sport/exercise in symptomatic women. The culture of the sporting environment influenced whether women continued or ceased exercising. In order to promote women's participation in sport, co-designed strategies for (1) screening and management of PF symptoms and (2) promotion of a supportive and inclusive culture within sports/exercise settings are needed.
| S-EPMC10127961 | biostudies-literature
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.
| S-EPMC8415310 | biostudies-literature
Project description:BackgroundUp to 50% of women will develop pelvic organ prolapse (POP) over their lifetime. Symptoms include pain, bulge, urinary, bowel and sexual symptoms affecting all aspects of a woman's life. This study explores the lived experience of women with POP.MethodologyA qualitative study was undertaken. Following institutional ethical approval women from an online peer support group (n = 930 members) were recruited to participate in semi-structured interviews. Inclusion criteria stipulated women (> 18years), pre-menopausal, at least one-year post-partum, diagnosed with POP and aware of their diagnosis. Semi-structured interviews were undertaken with a clinician specialising in pelvic health. A battery of questions was designed to elicit discussion on their experience of being diagnosed with POP and its impact on daily life and relationships. Interviews were carried out via Zoom, recorded and transcribed. Thematic analysis was undertaken.FindingsFourteen women (32-41 years), para 1-3 participated. All had at least one vaginal birth; three had vacuum, four had forceps operative births. All had Grade 1-3 POP. Interviews lasted 40-100 minutes. Three core themes with subthemes were identified; biological/physical, psychological and social. Women were particularly affected in terms of sport and exercise participation, their own perceptions of their ability as mothers and fear of their condition worsening. They described societal attitudes, reporting stigma around POP and women's pelvic health in general, expectations placed on women to put up with their symptoms and an idealised perception of new motherhood.ConclusionsThe impact of POP from a biopsychosocial perspective reflects other chronic conditions. Prevention, early education and supports for developing strong self-management approaches would be beneficial for long term management of this condition.
| S-EPMC9629641 | biostudies-literature
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.
| S-EPMC3799949 | biostudies-literature
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:BackgroundWearing high-heeled shoes is a common phenomenon among women. However, the association between wearing high heels and pelvic floor function is largely unknown. Our aim was to evaluate the effects of wearing different height shoes on pelvic floor function and to analyze the influencing factors.MethodsThis was a population-based, cross-sectional study performed in general hospitals with a pelvic floor subspecialty in some cities of China. All participants completed a Urogenital Distress Inventory (UDI-6) questionnaire that consisted of demographic data, information about wearing shoes, and information about pelvic floor function (UDI-6). One-way ANOVA was carried out to compare the differences among 4 groups according to the heel height (<3, 3-5, 5-7, and >7 cm groups). Multivariate logistic regression was performed to identify the factors influencing the effect of wearing 3-5 cm high-heeled shoes on pelvic floor function.ResultsIn total, 1,263 participants finished the questionnaire and full data were collected. The 4 groups were comparable for clinical data, and participants who wore 3-5 cm high-heeled shoes had the lowest UDI-6 scores. Multivariate analysis revealed that the number of hours (≥8 h) wearing high heels per day and the thickness diameter (≥3 cm) of the heel were important factors affecting the protective effect of wearing 3-5 cm high-heeled shoes on pelvic floor function.ConclusionsWearing heeled shoes with a 3-5 cm heel height and ≥3 cm thickness for a long period of time is good for the pelvic floor function of women.
| S-EPMC8261421 | biostudies-literature
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