Feelings of burden among family caregivers of people with spinal cord injury in Turkey

Study design: The study was designed as a cross-sectional survey. Objectives: The purpose of the study was to examine the level of feelings of burden in family caregivers of people with spinal cord injury (SCI) in Turkey, and to explore its predictors. Setting: Turkey. Methods: One hundred family caregivers of people with SCI completed measures of burden of caregiving, depression, social support and physical health. The SCI participants completed a measure of functional independence. Multivariate statistics and structural equation modeling (SEM) were conducted to identify significant predictors of caregiver burden. Results: Caregiver burden was significantly related to caregivers’ feelings of depression. SEM analysis showed that social support from family and from friends predicted caregiver burden via depression. Caregivers’ age, sex, educational level, physical health and household income did not significantly predict their feelings of depression or burden. Conclusions: Our findings revealed that support received from both families and friends is an important source for alleviating the depressive feelings of caregivers and, in return, their burden in the caregiving. In Turkey, high support from family members is expected and is important for psychological well-being, yet the current study showed that the support received from friends also has unique contribution to the well-being of the caregivers of persons with SCI. Overall, our findings highlight the importance of supportive relationships between family as well as friends for the caregivers who may have to provide lifetime care for their family member with special needs.WOS:000407265700012Scopus - Affiliation ID: 60105072PMID: 28169295Science Citation Index Expanded - Social Sciences Citation IndexQ2 - Q3ArticleUluslararası işbirliği ile yapılan - EVETAğustos2017YÖK - 2016-1

Improving patient experience and safety at transitions of care through the Your Care Needs You (YCNY) intervention: a study protocol for a cluster randomised controlled feasibility trial

Background Patients, particularly older people, often experience safety issues when transitioning from hospital to home. Although the evidence is currently equivocal as to how we can improve this transition of care, interventions that support patient involvement may be more effective. The ‘Your Care Needs You’ (YCNY) intervention supports patients to ‘know more’ and ‘do more’ whilst in hospital in order that they better understand their health condition and medications, maintain their daily activities, and can seek help at home if required. The intervention aims to reduce emergency hospital readmissions and improve safety and experience during the transition to home. Methods As part of the Partners At Care Transitions (PACT) programme of research, a multi-centred cluster randomised controlled trial (cRCT) will be conducted to explore the feasibility of the YCNY intervention and trial methodology. Data will be used to refine the intervention and develop a protocol for a definitive cRCT. Ten acute hospital wards (the clusters) from varying medical specialties including older peoples’ medicine, trauma and orthopaedics, cardiology, intermediate care, and stroke will be randomised to deliver YCNY or usual care on a 3:2 basis. Up to 200 patients aged 75 years and over and discharged to their own homes will be recruited to the study. Patients will complete follow-up questionnaires at 5-, 30-, and 90-days post-discharge and readmission data up to 90-days post-discharge will be extracted from their medical records. Study outcomes will include measures of feasibility (e.g. screening, recruitment, and retention data) and processes required to collect routine data at a patient and ward level. In addition, interviews and observations involving up to 24 patients/carers and 28 staff will be conducted to qualitatively assess the acceptability, usefulness, and feasibility of the intervention and implementation package to patients and staff. A separate sub-study will be conducted to explore how accurately primary outcome data (30-day emergency hospital readmissions) can be gathered for the definitive cRCT. Discussion This study will establish the feasibility of the YCNY intervention which aims to improve safety and experience during transitions of care. It will identify key methodological and implementation issues that need to be addressed prior to assessing the effectiveness of the YCNY intervention in a definitive cluster randomised controlled trial. Trial registration UK Clinical Research Network Portfolio: 42191; ISTCRN: ISRCTN51154948. Registered 16/07/2019

Health system and patient-level factors associated with multidisciplinary care and patient education among hospitalized, older cancer survivors

Objective: The purpose of this study was to examine system- and patient-level factors associated with the number of healthcare disciplines involved in delivery of patient education among hospitalized older cancer survivors. Methods: We used electronic health record (EHR) data from a single institution documenting patient education among hospitalized older patients (≥65 years) with a history of cancer between 9/1/2018 and 10/1/2019. We used parametric ordinal logistic regression to assess the number of healthcare disciplines involved in documented education activities. Results: The sample (n = 446) was predominantly male, White, and on average 74 years old. Adjusting for patient and system-level variables, men and larger department units had higher odds of receiving education from fewer healthcare disciplines. Patients with a history of breast or prostate cancer and longer lenths of stay had lower odds of receiving patient education from fewer healthcare disciplines. Conclusion: Hospital size, severity of illness, and cancer type are associated with delivery of multidisciplinary education in this sample. Innovation: EHR provides an opportunity to identify patterns in patient education among cancer survivors. Future research should investigate provider perspectives of the findings to inform provider- and system-level strategies to improve patient education

Aging with physical disabilities: experience intersected by stigma, social isolation and finitude

Abstract Objective: To understand the experience from a perspective of elderly people with physical disabilities. Method: Qualitative study that interviewed 15 people from the Mato Grosso Association of Disabled Person. Testimonies were obtained from 2016 July to 2017 June in the metropolitan region of Cuiabá/Brazil. Data were organized in thematic categories and analyzed through social phenomenology of Alfred Schütz. Results: It was evidenced that the stigma intersects the experience of the physical deficiency including in the old age. The perpetuation of stigma translated into impaired identity, social isolation, lack of perspective and acceptance of finitude as inevitable, contributing to a negative experience in old age. Conclusion and implications for practice: The experience of aging with physical disability has an intrinsically multidimensional nature, confronting complex lives and social contexts hostile to the body diversity, which need to be considered in public policies, by service managers and professionals involved in the processes of care for the elderly with physical disability