A mixed methods study of hope, transitions, and quality of life in family caregivers of persons with Alzheimer's disease

<p>Abstract</p> <p>Background</p> <p>Several research studies have reported the poor quality of life of family caregivers of persons with Alzheimer's disease (AD). However, factors that influence their quality of life have not been clearly defined. The purpose of this study was to examine factors associated with the quality of life of these caregivers such as demographic variables, their transition experience, and hope. A secondary aim was to explore the transition experience of family caregivers of persons with AD.</p> <p>Methods</p> <p>A cross-sectional triangulation data transformation model mixed method design (Quant +Qual) was utilized to address the purpose of the study. Eighty family caregivers of persons with AD completed a survey with quantitative measures [demographic variables, Herth Hope Index (HHI-hope), World Health Organization Quality of Life -BREF (WHOQOL-BREF)] and a qualitative survey about their transitions experience. The qualitative data (transition open ended- survey) was converted to quantitative data using content analysis. Variables significant at the p < 0.10 level in the univariate analysis were entered in the multivariate generalized linear model used to determine significant factors associated with quality of life.</p> <p>Results</p> <p>Subjects with higher hope scores (p < 0.0001) (Factor 1: temporality and future-cognitive-temporary dimension of hope) and who dealt with their transitions by actively seeking out knowledge and assistance (p = 0.02) had higher overall quality of life scores. HHI scores were associated with overall quality of life and for each of the four quality of life domains (physical psychosocial, relationships, and environment).</p> <p>Conclusions</p> <p>Hope played a significant role in the subjects' perceptions of overall quality of life as well as the 4 quality of life domains. This underscores the need to develop ways to foster hope in family caregivers. Moreover, the active engagement of families in seeking information and help, as a way to deal with their transitions, suggests encouraging this engagement is important. The findings of this study also suggest many directions for future research, such as increasing our understanding of the processes of transitions for this population.</p

Psychosocial impact of undergoing prostate cancer screening for men with BRCA1 or BRCA2 mutations.

OBJECTIVES: To report the baseline results of a longitudinal psychosocial study that forms part of the IMPACT study, a multi-national investigation of targeted prostate cancer (PCa) screening among men with a known pathogenic germline mutation in the BRCA1 or BRCA2 genes. PARTICPANTS AND METHODS: Men enrolled in the IMPACT study were invited to complete a questionnaire at collaborating sites prior to each annual screening visit. The questionnaire included sociodemographic characteristics and the following measures: the Hospital Anxiety and Depression Scale (HADS), Impact of Event Scale (IES), 36-item short-form health survey (SF-36), Memorial Anxiety Scale for Prostate Cancer, Cancer Worry Scale-Revised, risk perception and knowledge. The results of the baseline questionnaire are presented. RESULTS: A total of 432 men completed questionnaires: 98 and 160 had mutations in BRCA1 and BRCA2 genes, respectively, and 174 were controls (familial mutation negative). Participants' perception of PCa risk was influenced by genetic status. Knowledge levels were high and unrelated to genetic status. Mean scores for the HADS and SF-36 were within reported general population norms and mean IES scores were within normal range. IES mean intrusion and avoidance scores were significantly higher in BRCA1/BRCA2 carriers than in controls and were higher in men with increased PCa risk perception. At the multivariate level, risk perception contributed more significantly to variance in IES scores than genetic status. CONCLUSION: This is the first study to report the psychosocial profile of men with BRCA1/BRCA2 mutations undergoing PCa screening. No clinically concerning levels of general or cancer-specific distress or poor quality of life were detected in the cohort as a whole. A small subset of participants reported higher levels of distress, suggesting the need for healthcare professionals offering PCa screening to identify these risk factors and offer additional information and support to men seeking PCa screening

Can Older Women Residing in Nursing Homes Feel Empowered? An Exploration of Narrative

It is assumed that those individuals residing in nursing homes have poor health and little control over their lives. As a consequence there has been little research on this group of people in connection with empowerment. This paper draws upon the narratives of older women residing in two Ontario nursing homes and the frontline workers providing their care. It will illustrate how living environments and the practices of health care workers influence residents’ personal narratives. Emphasis will also be given to how past lifestyles and personal biographies can help older people to maintain empowering thoughts even when experiencing various health conditions

Analyses Of The Chondritic Meteorite Orvinio (H6): Insight Into The Origins And Evolution Of Shocked H Chondrite Material

We have studied the petrography, reflectance spectra, and Ar-Ar systematics of the Orivinio meteorite. Orvinio is an H chondrite not an L chondrite as sometimes reported. The material in the meteorite was involved in several impact events. One impact event produced large swaths of impact melt from H chondrite material surrounding relict clasts of chondrule-bearing material. Not only were portions of a bulk H chondrite planestesimal melted during the impact event, but shock redistribution of metal and sulfide phases in the meteorite dramatically altered its reflectance spectra. Both the melt and relict clasts are darker than unshocked H chondrite material, bearing spectral similarities to some C-class asteroids. Such shock metamorphism, which lowers the albedo of an object without increasing its spectral slope, may partially explain some of the variation among S-class asteroids and some of the trends seen on asteroid 433 Eros. Noble gases record the evidence of at least two, and perhaps three, impact events in the meteorite and its predecessor rocks. The most significant evidence is for an event that occurred 600 Ma ago or less, perhaps ∼325 Ma ago or less. There is also a signature of 4.2 Ga in the Ar-Ar systematics, which could either reflect complete degassing of the rock at that time or partial degassing of even the most retentive sites in the more recent event. © Meteoritical Society, 2004

Music Connects Us: Development of a Music-Based Group Activity Intervention to Engage People Living with Dementia and Address Loneliness

There is a need for intervention research to understand how music-based group activities foster engagement in social interactions and relationship-building among care home residents living with moderate to severe dementia. The purpose of this conceptual paper is to describe the design of ‘Music Connects Us’, a music-based group activity intervention. Music Connects Us primarily aims to promote social connectedness and quality of life among care home residents living with moderate to severe dementia through engagement in music-making, supporting positive social interactions to develop intimate connections with others. To develop Music Connects Us, we adapted the ‘Music for Life’ program offered by Wigmore Hall in the United Kingdom, applying an intervention mapping framework and principles of engaged scholarship. This paper describes in detail the Music Connects Us program, our adaptation approach, and key adaptations made, which included: framing the project to focus on the engagement of the person living with dementia to ameliorate loneliness; inclusion of student and other community-based musicians; reduced requirements for care staff participation; and the development of a detailed musician training approach to prepare musicians to deliver the program in Canada. Description of the development, features, and rationale for Music Connects Us will support its replication in future research aimed to tests its effects and its use in clinical practice

Music Connects Us: Development of a Music-Based Group Activity Intervention to Engage People Living with Dementia and Address Loneliness

There is a need for intervention research to understand how music-based group activities foster engagement in social interactions and relationship-building among care home residents living with moderate to severe dementia. The purpose of this conceptual paper is to describe the design of ‘Music Connects Us’, a music-based group activity intervention. Music Connects Us primarily aims to promote social connectedness and quality of life among care home residents living with moderate to severe dementia through engagement in music-making, supporting positive social interactions to develop intimate connections with others. To develop Music Connects Us, we adapted the ‘Music for Life’ program offered by Wigmore Hall in the United Kingdom, applying an intervention mapping framework and principles of engaged scholarship. This paper describes in detail the Music Connects Us program, our adaptation approach, and key adaptations made, which included: framing the project to focus on the engagement of the person living with dementia to ameliorate loneliness; inclusion of student and other community-based musicians; reduced requirements for care staff participation; and the development of a detailed musician training approach to prepare musicians to deliver the program in Canada. Description of the development, features, and rationale for Music Connects Us will support its replication in future research aimed to tests its effects and its use in clinical practice

Self-Administered Intervention for Caregivers of Persons With Alzheimer&apos;s Disease

Abstract The purpose of this article is to describe the development and feasibility testing of a Transition Toolkit to support caregivers of persons with Alzheimer&apos;s disease (AD) in dealing with transitions. Using the Medical Research Council (MRC; UK) guidelines for complex intervention development, Step 1 was to develop a theoretical understanding of the likely processes of change, by reviewing existing evidence and theory, and conducting new primary research. Based on Step 1, the intervention was developed with the Alzheimer&apos;s Society experts (Step 2), followed by concept mapping of the critical inputs of the intervention with the theoretical understanding (Step 3). A feasibility study was then conducted with 20 caregivers of persons with AD (Step 4) using a mixed methods concurrent design. The preliminary findings of the pilot study were positive with the participants describing the Transition Toolkit as acceptable, easy to use, and having the potential to help deal with transitions