scholarly journals Longitudinal study: understanding the lived experience of couples across the trajectory of dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Mary S. Mittelman ◽  
Maureen K. O’Connor ◽  
Tiffany Donley ◽  
Cynthia Epstein-Smith ◽  
Andrew Nguyen ◽  
...  

Abstract Background The longitudinal study, “Couples Lived Experiences,” focuses on whether and how relationship characteristics of older couples change with the cognitive decline of one member of the couple, and how these changes affect each individual’s emotional and physical health outcomes. Until now, most psychosocial research in dementia has focused either on the person with dementia (PWD) or the caregiver separately. The previous literature examining relationship characteristics and their role in outcomes for the caregiver and PWD is scant and suffers from methodological issues that limit the understanding of which relationship characteristics most influence outcomes for caregivers and care-receivers and what other factors may mitigate or exacerbate their effects. Methods We will enroll 300 dyads and collect information via online interviews of each member of the couple, every 6 months for 3 years. Relationship characteristics will be measured with a set of short, well-validated, and reliable self-report measures, plus the newly developed “Partnership Approach Questionnaire.” Outcomes include global quality of life, subjective physical health, mental health (depression and anxiety), and status change (transitions in levels of care; i.e., placement in a nursing home). Longitudinal data will be used to investigate how relationship characteristics are affected by cognitive, functional, and behavioral changes, and the impact of these changes on health outcomes. Qualitative data will also be collected to enrich the interpretation of results of quantitative analyses. Discussion Psychosocial interventions have demonstrated effectiveness in promoting the wellbeing of PWD and their caregivers. The knowledge gained from this study can lead to the development or enhancement of targeted interventions for older couples that consider the impact of cognitive and functional decline on the relationship between members of a couple and thereby improve their wellbeing. Trial registration This study has been registered with ClinicalTrials.gov. ClinicalTrials.gov Identifier is: NCT04863495.

2021 ◽  
pp. bmjspcare-2020-002722
Author(s):  
Carmen Salaverria ◽  
Erin Plenert ◽  
Roberto Vasquez ◽  
Soad Fuentes-Alabi ◽  
George A Tomlinson ◽  
...  

ObjectivesPaediatric patients with leukaemia with relapse or induction failure have poor prognosis. Anticipated quality of life (QoL) is important in treatment decision making. The objective was to determine if curative intent at relapse or induction failure, when compared with palliative intent, was associated with child’s physical health, pain or general fatigue and parents’ QoL over time among patients with paediatric leukaemia in El Salvador.MethodsThis was a prospective observational cohort study. Children 2–18 years with acute leukaemia at first relapse or induction failure were eligible. Assessments occurred every 2 months for up to 2 years using validated proxy report and self-report scales, where guardians were the primary respondents. Initial curative or palliative intent was categorised at enrolment by physicians. The impact of initial intent on QoL was assessed using linear mixed effects models and interaction between QoL and time.ResultsOf the 60 families enrolled, initial treatment intent was curative in 31 (51.7%) and palliative in 29 (48.3%). During the 2-year observation period, 44 children died. Initial curative intent significantly improved child’s physical health (estimate=8.4, 95% CI 5.1 to 11.6), pain (estimate=5.4, 95% CI 1.5 to 9.2) and fatigue (estimate=6.6, 95% CI 3.2 to 9.9) compared with palliative intent, but not parents’ QoL (estimate=1.0, 95% CI −0.8 to 2.8).ConclusionsAmong paediatric patients with acute leukaemia at relapse or induction failure, initial curative intent treatment plan was associated with better physical health, pain and fatigue when compared with palliative intent. A curative approach may be a reasonable option for patients with acute leukaemia even when prognosis is poor.


2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Jodi Oakman ◽  
Natasha Kinsman ◽  
Rwth Stuckey ◽  
Melissa Graham ◽  
Victoria Weale

Abstract Background The coronavirus (COVID-19) pandemic has resulted in changes to the working arrangements of millions of employees who are now based at home and may continue to work at home, in some capacity, for the foreseeable future. Decisions on how to promote employees’ health whilst working at home (WAH) need to be based on the best available evidence to optimise worker outcomes. The aim of this rapid review was to review the impact of WAH on individual workers’ mental and physical health, and determine any gender difference, to develop recommendations for employers and employees to optimise workers’ health. Method A search was undertaken in three databases, PsychInfo, ProQuest, and Web of Science, from 2007 to May 2020. Selection criteria included studies which involved employees who regularly worked at home, and specifically reported on physical or mental health-related outcomes. Two review authors independently screened studies for inclusion, one author extracted data and conducted risk of bias assessments with review by a second author. Results Twenty-three papers meet the selection criteria for this review. Ten health outcomes were reported: pain, self-reported health, safety, well-being, stress, depression, fatigue, quality of life, strain and happiness. The impact on health outcomes was strongly influenced by the degree of organisational support available to employees, colleague support, social connectedness (outside of work), and levels of work to family conflict. Overall, women were less likely to experience improved health outcomes when WAH. Conclusions This review identified several health outcomes affected by WAH. The health/work relationship is complex and requires consideration of broader system factors to optimise the effects of WAH on workers’ health. It is likely mandated WAH will continue to some degree for the foreseeable future; organisations will need to implement formalised WAH policies that consider work-home boundary management support, role clarity, workload, performance indicators, technical support, facilitation of co-worker networking, and training for managers.


BMJ Open ◽  
2017 ◽  
Vol 7 (9) ◽  
pp. e017296 ◽  
Author(s):  
Naeemah Abrahams ◽  
Soraya Seedat ◽  
Carl Lombard ◽  
Andre P Kengne ◽  
Bronwyn Myers ◽  
...  

IntroductionSouth Africa is a country known for its high levels of HIV infection and sexual violence. Although the interface between gender-based violence, HIV and mental health has been described, there are substantial gaps in knowledge of the medium-term and long-term health impact. The 2010 Global Burden of Disease study excluded many health outcomes associated with rape and other forms of gender-based violence because systematic reviews revealed huge gaps in data and poor evidence of health effects. This study aims to describe the incidence and attributable burden of physical and mental health problems (including HIV acquisition) in adult women over a 2-year postrape period, through comparison with a cohort of women who have not been raped. The study will substantially advance our understanding of the impact of rape and will generate robust data to assist in the development of postrape health services and the delivery of evidence-based care.Methods and analysisThis longitudinal study seeks to recruit 1008 rape-exposed and 1008 rape non-exposed women. Women were recruited from health services, and assessments were carried out at baseline, 3, 6, 9, 12, 18 and 24 months. Outcome measures include exposure to risk factors; mental health status; cardio-metabolic risks; and biomarkers for HIV, sexually transmitted infections, pregnancy and stress. The primary analysis will be to compare HIV incidence in the two groups using log-rank tests. Appropriate models to predict health outcomes over time will also be applied.Ethics and disseminationThe South African Medical Research Council’s Ethics Committee approved the study. As rape is a key element of the study, the safety and protection of participants guides the research process. We will adopt a research uptake strategy to ensure dissemination to policy makers, service providers and advocacy groups. Peer-reviewed journal articles will be published.


2021 ◽  
Author(s):  
Olivia J Kirtley ◽  
Robin Achterhof ◽  
Noëmi Hagemann ◽  
Karlijn Susanna Francisca Maria Hermans ◽  
Anu Pauliina Hiekkaranta ◽  
...  

Background: Over half of all mental health conditions have their onset in adolescence. Large-scale epidemiological studies have identified relevant environmental risk factors for mental health problems. Yet, few have focused on potential mediating inter- and intrapersonal processes in daily life, hampering intervention development. Objectives: To investigate 1) the impact of environmental risk factors on changes in inter- and intrapersonal processes; 2) the impact of altered inter- and intrapersonal processes on the development of (sub)clinical mental health symptoms in adolescents and; 3) the extent to which changes in inter- and intrapersonal processes mediate the association between environmental risk factors and the mental health outcomes in adolescents.Methods: ‘SIGMA’ is an accelerated longitudinal study of adolescents aged 12 to 18 from across Flanders, Belgium. Using self-report questionnaires, experience sampling, an experimental task, and wearables, we are investigating the relationship between environmental risk factors (e.g. trauma, parenting), inter- and intrapersonal processes (e.g. real-life social interaction and interpersonal functioning) and mental health outcomes (e.g. psychopathology, self-harm) over time. Results: N= 1913 adolescents (63% female) aged 11 – 20, from 22 schools, participated. The range of educational trajectories within the sample was broadly representative of the Flemish general adolescent population.Conclusions: Our findings will enable us to answer fundamental questions about inter- and intrapersonal processes involved in the development and maintenance of poor mental health in adolescence. This includes insights regarding the role of daily-life social and cognitive-affective processes, gained by using experience sampling. The accelerated longitudinal design enables rapid insights into developmental and cohort effects.


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