scholarly journals Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: a systematic review

2019 ◽  
pp. 1-15 ◽  
Author(s):  
Laura J. Hughes ◽  
Nicolas Farina ◽  
Thomas E. Page ◽  
Naji Tabet ◽  
Sube Banerjee

ABSTRACTBackground:Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings.Design:Systematic review.Methods:Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review.Results:Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use.Conclusions:Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.

2020 ◽  
Vol 32 (S1) ◽  
pp. 180-180
Author(s):  
Philippe Landreville ◽  
Alexandra Champagne ◽  
Patrick Gosselin

Background.The Geriatric Anxiety Inventory (GAI) is a widely used self-report measure of anxiety symptoms in older adults. Much research has been conducted on the psychometric properties of the GAI in various populations and using different language versions. Previous reviews of this literature have examined only a small proportion of studies in light of the body of research currently available and have not evaluated the methodological quality of this research. We conducted a systematic review of the psychometric properties of the GAI.Method.Relevant studies (N = 30) were retrieved through a search of electronic databases (Pubmed, PsycINFO, CINAHL, EMBASE and Google Scholar) and a hand search. The methodological quality of the included studies was assessed by two independent reviewers using the ‘‘COnsensusbased Standards for the selection of health status Measurement INstruments’’ (COSMIN) checklist.Results.Based on the COSMIN checklist, internal consistency and test reliability were mostly rated as poorly assessed (62.1% and 70% of studies, respectively) and quality of studies examining structural validity was mostly fair (60% of studies). The GAI showed adequate internal consistency and test-retest reliability. Convergent validity indices were highest with measures of generalized anxiety and lowest with instruments that include somatic symptoms. A substantial overlap with measures of depression was reported. While there was no consensus on the factorial structure of the GAI, several studies found it to be unidimensional.Conclusions.The GAI presents satisfactory psychometric properties. However, future efforts should aim to achieve a higher degree of methodological quality.


2014 ◽  
Vol 26 (6) ◽  
pp. 1011-1019 ◽  
Author(s):  
Orii McDermott ◽  
Vasiliki Orgeta ◽  
Hanne Mette Ridder ◽  
Martin Orrell

ABSTRACTBackground:Music in Dementia Assessment Scales (MiDAS), an observational outcome measure for music therapy with people with moderate to severe dementia, was developed from qualitative data of focus groups and interviews. Expert and peer consultations were conducted at each stage of the scale development to maximize its content validity. This study aimed to evaluate the psychometric properties of MiDAS.Methods:Care home residents with dementia attended weekly group music therapy for up to ten sessions. Music therapists and care home staff were requested to complete weekly MiDAS ratings. The Quality of Life Scale (QoL-AD) was completed at three time-points.Results:A total of 629 (staff = 306, therapist = 323) MiDAS forms were completed. The statistical analysis revealed that MiDAS has high therapist inter-rater reliability, low staff inter-rater reliability, adequate staff test-retest reliability, adequate concurrent validity, and good construct validity. High factor loadings between the five MiDAS Visual Analogue Scale (VAS) items, levels of Interest, Response, Initiation, Involvement, and Enjoyment, were found.Conclusions:This study indicates that MiDAS has good psychometric properties despite the small sample size. Future research with a larger sample size could provide a more in-depth psychometric evaluation, including further exploration of the underlying factors. MiDAS provides a measure of engagement with musical experience and offers insight into who is likely to benefit on other outcomes such as quality of life or reduction in psychiatric symptoms.


Dementia ◽  
2017 ◽  
Vol 19 (4) ◽  
pp. 1316-1324
Author(s):  
Claire Royston ◽  
Gary Mitchell ◽  
Colin Sheeran ◽  
Joanne Strain ◽  
Sue Goldsmith

There are an increasing number of people living with dementia in care home settings. Recent reports suggest that people who deliver care to residents living with dementia in care homes require specialist support to provide optimum care. To address this need Four Seasons Health Care, the largest provider of care homes within the UK today, sought to design a dementia care framework that enhanced the quality of life for people living with dementia in their care homes. The framework was designed using a robust evidence base, engagement with people living with dementia, their care partners, policy-writers, multidisciplinary professionals and people within the organisation. This paper describes the methodology behind the dementia care framework and outcomes data from the first phase (of 20 care homes that included the care of 451 people living with dementia). The main outcome was a significant improvement in the quality of the lives of residents across biological, psychological, social and spiritual needs.


2020 ◽  
Author(s):  
Tahereh Mokhtarian-Gilani ◽  
Nourossadat kariman ◽  
Hamid Sharif-Nia ◽  
Mahbobeh Ahmadi-Doulabi ◽  
Malihe Nasiri

Abstract Background:The postpartum quality of life refers to women's understanding of their standing in the postpartum crisis that differs depending on their health status, social support, cultural status and values, attitudes, goals and standards. The present systematic review will identify, describe, and critically assess the psychometric properties of postpartum quality of life questionnaires.Methods/Design:A systematic review will be conducted in databases including PubMed, Embase, Scopus, Web of Science, PsycINFO, and CINAHL from January 2000 to January 2020. The psychometric properties (validity and reliability) of the instruments used in the primary studies will be assessed, and the selection, methodological quality assessment and data extraction processes of the studies will be independently assessed by two reviewers with expertise in conducting systematic reviews, so as to minimize potential personal bias. Eligible resources are selected after any lack of consensus is put to debate.The risk of bias is assessed using the COSMIN RISK of Bias checklist, and to evaluate the quality of the studies, the protocol is written based on the PRISMA-P1 standards. The results of the studies will be judged based on good measurement properties, and the results of all the studies are qualitatively summarized to produce a reference for the general quality of the results. The general quality of the evidence will be determined using a modified GRADE method.Discussion:This study assessed the psychometric properties of questionnaires used for assessing postpartum quality of life and its results can be used to identify the most appropriate tool for health applications in measuring postpartum quality of life. Systematic review registration: reference number in PROSPRO CRD42020166301


2019 ◽  
Vol 50 (1) ◽  
pp. 86-95 ◽  
Author(s):  
S. Robertson ◽  
C. Cooper ◽  
J. Hoe ◽  
K. Lord ◽  
P. Rapaport ◽  
...  

AbstractBackgroundImproving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes.MethodsWe compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews.ResultsStaff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family's (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia.ConclusionProxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently.


2020 ◽  
Vol 21 (4) ◽  
pp. 217-228
Author(s):  
Annie Stevenson

Purpose The purpose of this paper is to explore the link between age discrimination and the injustices that have taken place in our care homes during the COVID-19 pandemic in this country. It seeks to show how destructive age discrimination is to those who live in our care homes and attempts to shake up our attitudes to older people, as the pandemic continues. It is hoped that shifts in attitude would lead to a societal revolution in care and support for older people as the pandemic shows us how the current system is breaking down. Design/methodology/approach This is a personal insight into the plight of the care home sector during the COVID-19 pandemic in the UK. The writer has worked in the field of social care and older people’s services for many years and felt compelled to share her learning and observations. This led to venturing more deeply into understanding why those who live, work and visit care homes have been so neglected and “cast into the shadows” in the face of such desperate danger. Whilst tracking the media narrative during the first wave, she attempts to apply her knowledge, in particular gained from working for Help the Aged (now Age UK) as a policy manager for Quality Care, but also draws on experiences as a social worker, commissioner and care provider from the 1980’s to the present. By “shining a light” on care homes, revealing that the darker practices that have taken place contravene the Human Rights Act 1998, it is hoped that the recognition of age discrimination will happen at every level and become better known in its application. The paper observes how deeply rooted it is in us all. Findings Having highlighted some shocking examples of bad practice from the authorities relating to care homes, the article concludes that Government policy on care homes from March to July 2020 was discriminatory and questions how far lessons have been learned. The legislation is in place in the form of the Human Rights Act 1998 to protect older people in care homes but is not being widely implemented at regional policy level. Government rhetoric remains far from reality Instead of redressing the gap and admitting mistakes, there is evidence at a high level of continued denial and the projection of blame on to the care homes themselves. Originality/value The author’s professional background includes meeting the founder of the Gray Panthers, Maggie Kuhn, in the United States in the 1988. This was a defining moment that gave her an original insight into age discrimination and influenced her entire career. It eventually led to her working in national policy for one of the most influential charities for older people at the turn of the millennium, Help the Aged. Here, she co-founded the My Home Life Programme (promoting quality of life in care homes). The paper offers a unique insight into why it is so challenging to achieve quality of life for older people needing care and should be of interest to policymakers, clinical commissioning groups, local authorities, older people’s care providers and carer and user organisations.


BJPsych Open ◽  
2017 ◽  
Vol 3 (4) ◽  
pp. 171-178 ◽  
Author(s):  
Gill Livingston ◽  
Julie Barber ◽  
Louise Marston ◽  
Penny Rapaport ◽  
Deborah Livingston ◽  
...  

BackgroundAgitation is reportedly the most common neuropsychiatric symptom in care home residents with dementia.AimsTo report, in a large care home survey, prevalence and determinants of agitation in residents with dementia.MethodWe interviewed staff from 86 care homes between 13 January 2014 and 12 November 2015 about residents with dementia with respect to agitation (Cohen-Mansfield Agitation Inventory (CMAI)), quality of life (DEMQOL-proxy) and dementia severity (Clinical Dementia Rating). We also interviewed residents and their relatives. We used random effects models adjusted for resident age, gender, dementia severity and care home type with CMAI as a continuous score.ResultsOut of 3053 (86.2%) residents who had dementia, 1489 (52.7%) eligible residents participated. Fifteen per cent of residents with very mild dementia had clinically significant agitation compared with 33% with mild (odds ratios (ORs)=4.49 95% confidence interval (CI)=2.30) and 45% with moderate or severe dementia (OR=6.95 95% CI=3.63, 13.31 and OR=6.23 95% CI=3.25, 11.94, respectively). More agitation was associated with lower quality of life (regression coefficient (rc)=-0.53; 95% CI=-0.61, -0.46) but not with staffing or resident ratio (rc=0.03; 95% CI=-0.04, 0.11), level of residents' engagement in home activities (rc=3.21; 95% CI=-0.82, 7.21) or family visit numbers (rc=-0.03; 95% CI=-0.15, 0.08). It was correlated with antipsychotic use (rc=6.45; 95% CI=3.98, 8.91).ConclusionsCare home residents with dementia and agitation have lower quality of life. More staffing time and activities as currently provided are not associated with lower agitation levels. New approaches to develop staff skills in understanding and responding to the underlying reasons for individual resident's agitation require development and testing.


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