RHAPSODY - Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study

YesBackground: Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling and support to this vulnerable yet underserved group. Methods: The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer’s disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed. Conclusions: The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.RHAPSODY is an EU Joint Program - Neurodegenerative Disease Research (JPND) project. The project is supported through the following funding organizations under the aegis of JPND (www.jpnd.eu). France: National Research Agency; Germany: Ministry of Education and Research; The Netherlands: The Netherlands Organization for Health Research and Development; Portugal: Foundation for Science and Technology; Sweden: The Swedish Research Council; United Kingdom: Economic and Social Research Council

Job satisfaction, strain and stress of conscience among nurse assistants working in residential care for older people

The overall aim of the thesis was to investigate and explore job satisfaction, strain and stress of conscience (SC) among nurse assistants (NAs) working in residential care for older people. The thesis had a descriptive, cross-sectional and correlational design and consisted of one paper where qualitative methodology was used and three where quantitative methodology was used. The qualitative study (I) was based on six focus group interviews with NAs (n=36) and the quantitative studies (II-IV) were based on questionnaires. A total of 225 NAs participated in studies II-III and a sub sample of these NAs (n=114) participated in study IV. All data was collected in the south of Sweden. A conventional content analysis was used for exploring the NAs’ experiences of job satisfaction (I), and descriptive and analytical statistics were used in order to investigate and explore associations of job satisfaction (II), strain/SC (III) and associated variables. In addition the psychometric properties in terms of the construct validity, data quality and reliability were investigated for the instruments used as dependent variables (IV). The results showed that the NAs’ job satisfaction and strain/SC constitute a complex web of interrelated aspects. Study I showed that the NAs’ job satisfaction was based on the encounter with the residents and their next of kin and the ability to establish significant relationships with them. They also experienced job satisfaction when they had the prerequisites to use and develop their competence and when they worked in a harmonious and inspiring environment. In studies II and III a positive caring climate was associated with high levels of job satisfaction and inversely to low levels of strain/SC. In addition the extent of personalizing care, amount of organizational and environmental support and, leadership also contributed to positive as well as negative aspects of their wellbeing. Furthermore, health complaints showed to be related to negative affectivities of work. The psychometric properties of the instruments used in studies II-IV showed varying strengths and weaknesses (IV) and further development is thus needed. In conclusion, getting the prerequisites for providing high quality care, a positive caring climate, a high extent of personalizing care, a high amount of organizational and environmental support and last but not least having leaders and managers with good leadership characteristics appears to be important for the NAs’ wellbeing at work

Oasen i vården. En litteraturstudie om omvårdnadshandledningens påverkan på vårdpersonals arbetssituation

The purpose of this review was to investigate in scientific literature what impact clinical supervision actually contains from the perspective of the working conditions for nursingstaff. Goodman formed the working process in our review and is based on a systematic scrutiny and analysis of ten scientific articles inspired of evidencebased method. Willman & Stoltz and Pearson's FAME scale was used sifting through evidence of the articles.The result has been divided thematic in professional development, personal development, development of knowledge, communicationskills, feeling of fellowship, working environment and the patientinteraction. The conclusion of the evidens grading (A-D), in the quantitative results, showed no evidens (D). The qualitative articles was graded (1-5) through the concepts Feasibility, Appropriatness, Meaningfulness and Effectiveness. The result from the qualitative evidens grading was positive. None of the articles scored less than 3. In reference to Appropriateness and Meaningfulness all the studies scored maximum. The result shows that clinical supervision has got several positive impacts on the working situation for nursing staff.Syftet med denna systematiska litteraturstudie var att i vetenskaplig litteratur utifrån vårdpersonals perspektiv undersöka vilken påverkan omvårdnadshandledning har för vårdpersonals arbetssituation. Goodman låg till grund för arbetsprocessen i examensarbetet. Metoden baserades på systematisk granskning och analys av tio vetenskapliga artiklar inspirerad av evidensbaserad metod. Resultatet delades in tematiskt efter påverkan på vårdpersonals yrkesutveckling, -personlig utveckling, -kunskap, -kommunikationsförmåga, -känsla av gemenskap, -arbetsmiljö och -patientkontakt. Vid evidensgraderingen utgick de kvantitativa artiklarna ifrån Willman & Stoltz och de kvalitativa artiklarna utgick från Pearsons FAME-skala. Slutsatsen av evidensgraderingen A-D, resulterade i ingen evidens (D) för de kvantitativa resultaten. De kvalitativa artiklarna graderades från 1-5 utifrån koncepten Genomförbarhet, Lämplighet, Mening och Effektivitet. Resultatet av den kvalitativa evidensgraderingen var positivt, ingen av studierna fick sämre poäng än 3. Avseende Lämplighet och Mening fick alla studier högst poäng. Resultatet av denna systematiska litteraturstudie visar att handledning av vårdpersonal ger positiv påverkan på vårdpersonals arbetssituation

Job satisfaction and associated variables among nurse assistants working in residential care.

Background: While the work situation for nurse assistants in residential care is strenuous, they themselves often state that they are satisfied with their job. More knowledge is clearly needed of the interrelationship of variables associated with job satisfaction. This study aims to investigate job satisfaction and explore associated variables among nurse assistants working in residential care. Methods: A total of 225 respondents completed a questionnaire measuring general job satisfaction, satisfaction with nursing-care provision and measures concerning person-centered care, work climate, leadership, and health complaints. Job satisfaction was the outcome measure and comparisons were made among those reporting low, moderate, and high levels of job satisfaction; multiple regression analyses were used to explore associated variables. Results: The caring climate and personalized care provision were associated with general job satisfaction. High levels of satisfaction with nursing-care provision were also associated with the general work climate, organizational and environmental support, and leadership. Low job satisfaction was mainly associated with health complaints. Conclusions: Nurse assistants working in a positive work climate, caring climate, with a positive attitude to their leaders, who receive organizational and environmental support, provide person-centered care and experience a higher degree of job satisfaction. It seems essential, however, to include both general and context-specific measures when investigating job satisfaction in this field as they reveal different aspects of the nurse assistant's work situation

Job strain and stress of conscience among nurse assistants working in residential care.

The aim was to investigate job strain and stress of conscience among nurse assistants working in residential care and to explore associations with personal and work-related aspects and health complaints

Psychometric properties concerning four instruments measuring job satisfaction, strain, and stress of conscience in a residential care context.

There are many instruments assessing the wellbeing of staff, but far from all have been psychometrically investigated. When evaluating supportive interventions directed toward nurse assistants in residential care, valid and reliable instruments are needed in order to detect possible changes. The aim of the study was to investigate validity in terms of data quality, construct validity, convergent and divergent validity and reliability in terms of the internal consistency and stability of the Job Satisfaction Questionnaire, the Psychosocial Aspects of Job Satisfaction, the Strain in Dementia Care Scale (SDCS), and the Stress of Conscience Questionnaire (SCQ) in a residential care context. The psychometric properties of the instruments were investigated in terms of data quality, construct validity, convergent and divergent validity and reliability, including test-retest reliability, in a residential care context with a sample consisting of nurse assistants (n=114). The four instruments responded with different psychometric-related problems such as internal missing data, floor and ceiling effects, problems with construct validity and low test-retest reliability, especially when assessed on the item level. These problems were however reduced or disappeared completely when assessed for total and factor scores. From a psychometric perspective, the SDCS seemed to stand out as the best instrument. However, it should be modified in order to reduce floor effects on item level and thereby gain sensitivity. The Job Satisfaction Questionnaire seemed to have problems both with the construct validity and test-retest reliability. The final choice of instrument must, however, be made dependent on what one intends to measure

Availability of information on young onset dementia for patients and carers in six European countries

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