PurposeQuality of life (QOL) is an important concept in the field of health and medicine. QOL is a complex concept that is interpreted and defined differently within and between disciplines, including the fields of health and medicine. The aims of this study were to systematically review the literature on QOL in medicine and health research and to describe the country of origin, target groups, instruments, design, and conceptual issues.MethodsA systematic review was conducted to identify research studies on QOL and health-related quality of life (HRQOL). The databases Scopus, which includes Embase and MEDLINE, CINAHL, and PsycINFO were searched for articles published during one random week in November 2016. The ten predefined criteria of Gill and Feinstein were used to evaluate the conceptual and methodological rigor.ResultsQOL research is international and involves a variety of target groups, research designs, and QOL measures. According to the criteria of Gill and Feinstein, the results show that only 13% provided a definition of QOL, 6% distinguished QOL from HRQOL. The most frequently fulfilled criteria were: (i) stating the domains of QOL to be measured; (ii) giving a reason for choosing the instruments used; and (iii) aggregating the results from multiple items.ConclusionQOL is an important endpoint in medical and health research, and QOL research involves a variety of patient groups and different research designs. Based on the current evaluation of the methodological and conceptual clarity of QOL research, we conclude that the majority QOL studies in health and medicine have conceptual and methodological challenges.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-019-02214-9) contains supplementary material, which is available to authorized users.

BackgroundThe objective of this review was to obtain an overview of the technologies that have been explored with older adults with mild cognitive impairment and dementia (MCI/D), current knowledge on the usability and acceptability of such technologies, and how people with MCI/D and their family carers (FCs) were involved in these studies.Materials and methodsPrimary studies published between 2007 and 2017 that explored the use of technologies for community-dwelling people with MCI/D were identified through five databases: MEDLINE, PsycINFO, Embase, AMED, and CINAHL. Twenty-nine out of 359 papers met the criteria for eligibility. We used the Mixed Methods Appraisal Tool for quality assessment.ResultsA wide range of technologies was presented in the 29 studies, sorted into four domains: 1) safe walking indoors and outdoors; 2) safe living; 3) independent living; and 4) entertainment and social communication. The current state of knowledge regarding usability and acceptability reveals that even if researchers are aware of these concepts and intend to measure usability and acceptability, they seem difficult to assess. Terms such as “user friendliness” and “acceptance” were used frequently. User participation in the 29 studies was high. Persons with MCI/D, FCs, and staff/other older adults were involved in focus groups, workshops, and interviews as part of the preimplementation process.ConclusionResearch regarding technologies to support people with MCI/D seems optimistic, and a wide range of technologies has been evaluated in homes with people with MCI/D and their FCs. A major finding was the importance of including people with MCI/D and their FCs in research, in order to learn about required design features to enhance usability and acceptability. Surprisingly, very few studies reported on the consequences of technology use with regard to quality of life, occupational performance, or human dignity.

ObjectiveTo summarise study descriptions of the James Lind Alliance (JLA) approach to the priority setting partnership (PSP) process and how this process is used to identify uncertainties and to develop lists of top 10 priorities.DesignScoping review.Data sourcesThe Embase, Medline (Ovid), PubMed, CINAHL and the Cochrane Library as of October 2018.Study selectionAll studies reporting the use of JLA process steps and the development of a list of top 10 priorities, with adult participants aged 18 years.Data extractionA data extraction sheet was created to collect demographic details, study aims, sample and patient group details, PSP details (eg, stakeholders), lists of top 10 priorities, descriptions of JLA facilitator roles and the PSP stages followed. Individual and comparative appraisals were discussed among the scoping review authors until agreement was reached.ResultsDatabase searches yielded 431 potentially relevant studies published in 2010–2018, of which 37 met the inclusion criteria. JLA process participants were patients, carers and clinicians, aged 18 years, who had experience with the study-relevant diagnoses. All studies reported having a steering group, although partners and stakeholders were described differently across studies. The number of JLA PSP process steps varied from four to eight. Uncertainties were typically collected via an online survey hosted on, or linked to, the PSP website. The number of submitted uncertainties varied across studies, from 323 submitted by 58 participants to 8227 submitted by 2587 participants.ConclusionsJLA-based PSP makes a useful contribution to identifying research questions. Through this process, patients, carers and clinicians work together to identify and prioritise unanswered uncertainties. However, representation of those with different health conditions depends on their having the capacity and resources to participate. No studies reported difficulties in developing their top 10 priorities.

The review included 47 papers. A total of 40 different measurements were applied in the studies, assessing most frequently functional status and symptoms. The most extensive psychometric evidence was documented for the SF-36. Although construct validity was reported in the majority of studies, minimal empirical evidence was given for other psychometric properties. Further, 87% of the studies lacked a conceptual framework and 55% did not report any methodological considerations related to older adults. Quality control standards, which can guide measurement assessment and subsequent data interpretation, are needed to enhance more consistent reporting of the psychometric properties of QoL instruments utilized. Future work on the development of common QoL assessment models that are both person-centered, causal and multidimensional based on collaborative efforts from professionals interested in QoL from the international gerontological research community are needed.

Aim and objectives. To provide knowledge about how immigrant parents of children with complex health needs manage their family lives and how this affects their own health and quality of life.Background. Caregivers of children with complex health needs have additional risk for

The values and beliefs represented in the different modified cornerstones based on Norwegian community nursing practice capture the essence of public health nursing in Norway. The similarities between the two countries show that nurses have much in common, despite different health and governmental systems and laws.

No abstract

Background: Dementia is recognised as one of the greatest global public health challenges. A central tenet of national health and social care policy is to ensure that services support people in achieving their personal wellbeing and outcomes, defined as the things important to people in their lives, also people with dementia. The aim of this study is to explore what matters to nursing home residents with dementia based on their perceptions of nursing homes as home. Methods: There were conducted 35 interviews with people with dementia in nursing homes. We conducted the in-depth unstructured qualitative interviews. Thematic analysis was applied to analyse the data. Results: The analysis resulted in one over-arching theme "tension between the experiences of a nursing home being a home and an institution" and five themes; "myself and my relationships with fellow residents", "creation of individualised living spaces", "single rooms with personal decor that enhances a sense of connectedness", "transition between the old home and the new home" and "significant activities providing meaning". The participants stated that the transition to the supported, structured living environment in nursing homes to be a clear need based on immediate, serious safety concerns. They went from being masters of their own lives to adhering to nursing home routines. Fellow residents could be both resources and burdens, creating feelings of security and insecurity. A home-like environment was created by allowing the participants to bring their important personal belongings into private spaces. The participants said they needed to be able to decorate their rooms to their own specifications. They wanted involvement in meaningful activities.