Development of an instrument measuring the quality of residential care facilities for older people

Aims. To validate the Swedish version of the Sheffield Care Environment Assessment Matrix (S-SCEAM). The instrument’s items measure environmental elements important for supporting the needs of older people, and conceptualized within eight domains. Methods. Item relevance was assessed by a group of experts and measured using content validity index (CVI). Test-retest and inter-rater reliability tests were performed.  The domain structure was assessed by the inter-rater agreement of a second group of experts, and measured using Fleiss kappa. Results. All items attained a CVI above 0.78, the suggested criteria for excellent content validity. Test-retest reliability showed high stability (96% and 95% for two independent raters respectively), and inter-rater reliability demonstrated high levels of agreement (95% and 94% on two separate rating occasions). Kappa values were very good for test-retest (κ = 0.903 and 0.869) and inter-rater reliability (κ = 0.851 and 0.832). Domain structure was good,  Fleiss’ kappa was 0.63 (range 0.45 to 0.75).    Conclusion. The S-SCEAM of 210 items and eight domains showed good content validity and construct validity. The instrument is suggested for use in measuring of the quality of the physical environment in residential care facilities for older persons.

The quality of the physical environment and its association with activities and well-being among older people in residential care facilities

The physical environment can influence older people’s health and well-being, and is often mentioned as being an important factor for person-centred care. Due to high levels of frail health, many older people spend a majority of their time within care facilities and depend on the physical environment for support in their daily life. However, the quality of the physical environment is rarely evaluated, and knowledge is sparse in terms of how well the environment meets the needs of older people. This is partly due to the lack of valid and reliable instruments that could provide important information on environmental quality. Aim: The aim of this thesis was to study the quality of the physical environment in Swedish care facilities for older people, and how it relates to residents’ activities and well-being. Methods: The thesis comprises four papers where both qualitative and quantitative methods were used. Study I involved the translation and adaptation of the Sheffield Care Environment Assessment Matrix (SCEAM) into a Swedish version (S-SCEAM). Several methods were used including forward and backward translation, test of validity via expert consultation and reliability tests. In Study II, S-SCEAM was used to assess the quality of the environment, and descriptive data were collected from 20 purposively sampled residential care facilities (RCFs). Study III was a comparative case study conducted at two RCFs using observations, interviews and S-SCEAM to examine how the physical environment relates to older people’s activities and interactions. In study IV, multilevel modeling was used to determine the association between the quality of the physical environment and the psychological and social well-being of older people living in RCFs. The data in the thesis were analysed using qualitative content analysis, and descriptive, bivariate and multilevel statistics. Results: A specific result was the production of the Swedish version of SCEAM. The instrument contains 210 items structured into eight domains reflecting the needs of older people. When using S-SCEAM, the results showed a substantial variation in the quality of the physical environment between and within RCFs. In general, private apartments and dining areas had high quality, whereas overall building layout and outdoor areas had lower quality. Also, older people’s safety was supported in the majority of facilities, whereas cognitive support and privacy had lower quality. Further, the results showed that environmental quality in terms of cognitive support was associated with residents’ social well-being. Specific environmental features, such as building design and space size, were also noted, through observation, as influencing residents’ activities, and several barriers were found that seemed to restrict residents’ full use of the environment. Conclusions: This thesis contributes to the growing evidence-based design field. The S-SCEAM can be used in future research on the association between the environment and people’s health and well-being. The instrument could also serve as a guide in the planning and design process of new RCFs.

Tha contribution of home-based technology to older people's quality of life in extra care housing

Background: British government policy for older people focuses on a vision of active ageing and independent living. In the face of diminishing personal capacities, the use of appropriate home-based technology (HBT) devices could potentially meet a wide range of needs and consequently improve many aspects of older people's quality of life such as physical health, psychosocial well-being, social relationships, and their physical or living environment. This study aimed to examine the use of HBT devices and the correlation between use of such devices and quality of life among older people living in extra-care housing (ECH).  Methods: A structured questionnaire was administered for this study. Using purposive sampling 160 older people living in extra-care housing schemes were selected from 23 schemes in England. A face-to-face interview was conducted in each participant's living unit. In order to measure quality of life, the SEIQoL-Adapted and CASP-19 were used.  Results: Although most basic appliances and emergency call systems were used in the living units, communally provided facilities such as personal computers, washing machines, and assisted bathing equipment in the schemes were not well utilised. Multiple regression analysis adjusted for confounders including age, sex, marital status, living arrangement and mobility use indicated a coefficient of 1.17 with 95% CI (0.05, 2.29) and p = 0.04 [SEIQoL-Adapted] and 2.83 with 95% CI (1.17, 4.50) and p = 0.001 [CASP-19].  Conclusions: The findings of the present study will be value to those who are developing new form of specialised housing for older people with functional limitations and, in particular, guiding investments in technological aids. The results of the present study also indicate that the home is an essential site for developing residential technologies.

Assessing the physical environment of older people’s residential care facilities: development of the Swedish version of the Sheffield Care Environment Assessment Matrix (S-SCEAM)

Background There is emerging evidence that the physical environment is important for health, quality of life and care, but there is a lack of valid instruments to assess health care environments. The Sheffield Care Environment Assessment Matrix (SCEAM), developed in the United Kingdom, provides a comprehensive assessment of the physical environment of residential care facilities for older people. This paper reports on the translation and adaptation of SCEAM for use in Swedish residential care facilities for older people, including information on its validity and reliability. Methods SCEAM was translated into Swedish and back-translated into English, and assessed for its relevance by experts using content validity index (CVI) together with qualitative data. After modification, the validity assessments were repeated and followed by test-retest and inter-rater reliability tests in six units within a Swedish residential care facility that varied in terms of their environmental characteristics. Results Translation and back translation identified linguistic and semantic related issues. The results of the first content validity analysis showed that more than one third of the items had item-CVI (I-CVI) values less than the critical value of 0.78.  After modifying the instrument, the second content validation analysis resulted in I-CVI scores above 0.78, the suggested criteria for excellent content validity. Test-retest reliability showed high stability (96% and 95% for two independent raters respectively), and inter-rater reliability demonstrated high levels of agreement (95% and 94% on two separate rating occasions). Kappa values were very good for test-retest (κ= 0.903 and 0.869) and inter-rater reliability (κ= 0.851 and 0.832). Conclusions Adapting an instrument to a domestic context is a complex and time-consuming process, requiring an understanding of the culture where the instrument was developed and where it is to be used. A team, including the instrument’s developers, translators, and researchers is necessary to ensure a valid translation and adaption. This study showed preliminary validity and reliability evidence for the Swedish version (S-SCEAM) when used in a Swedish context. Further, we believe that the S-SCEAM has improved compared to the original instrument and suggest that it can be used as a foundation for future developments of the SCEAM model.

Health and quality of care from older peoples' and formal caregivers' perspective

Aim: The overall aim of this thesis was to gain a deeper understanding of older people's view of health and care while dependent on community care. Furthermore to describe and compare formal caregivers' perceptions of quality of care, working conditions, competence, general health, and factors associated with quality of care from the caregivers' perspective. Method: Qualitative interviews were conducted with 19 older people in community care who were asked to describe what health and ill health((I), good and bad care meant for them (II). Data were analyzed using content analysis (I) and a phenomenological analysis (II). The formal caregivers; 70 nursing assistants (NAs) 163 enrolled nurses (ENs) and 198 registered nurses (RNs), answered a questionnaire consisting of five instruments: quality of care from the patient's perspective modified to formal caregivers, creative climate questionnaire, stress of conscience, health index, sense of coherence and items on education and competence (III). Statistical analyses were performed containing descriptive statistics, and comparisons between the occupational groups were made using Kruskal-Wallis ANOVA, Mann-Whitney U-test and Pearson's Chi-square test (III). Pearson's  product moment correlation analysis and multiple regression analysis were performed studying the associations between organizational climate, stress of conscience, competence, general health and sense of coherence with quality of care (IV). Results: The older people's health and well-being were related to their own ability to adapt to and compensate for their disabilities and was described as negative and positive poles of autonomy vs. dependence, togetherness vs. being an onlooker, security vs. insecurity and tranquility vs. disturbance (I).  The meaning of good care (II) was that the formal caregivers respected the older people as unique individuals, having the opportunity to live their lives as usual and receiving a safe and secure care. Good care could be experienced when the formal caregivers had adequate knowledge and competence in caring for older people, adequate time and continuity in the care organization (II). Formal caregivers reported higher perceived quality of care in the dimensions medical-technical competence and physical-technical conditions than in identity-oriented approach and socio-cultural atmosphere (III). In the organizational climate three of the dimensions were close to the value of a creative climate and in seven near a stagnant climate. The formal caregivers reported low rate of stress of conscience. The RNs reported to a higher degree than the NAs/ENs a need to gain more knowledge, but the NAs and the ENs more often received training during working hours. The RNs reported lower emotional well-being than the NAs/ENs (III). The formal caregivers' occupation, organizational climate and stress of conscience were associated with perceived quality of care (IV). Implications: The formal caregivers should have an awareness of the importance of kindness and respect, supporting the older people to retain control over their lives. The nursing managers should employ highly competent and adequate numbers of skilled formal caregivers, organize formal caregivers having round the clock continuity. Improvements of organizational climate and stress of conscience are of importance for good quality of care.

Push or pull? : The relationship between quality of care and use of complementary and alternative medicine among patients with lung cancer in Sweden

Little is known about relationships between quality of care (QoC) and use of complementary and alternative medicine (CAM) among patients with lung cancer (LC). Purpose: This study examines CAM-use among patients with LC in Sweden, associations between QoC and CAM-use among these patients, and reported aspects of LC-care perceived as particularly positive and negative by patients, as well as suggestions for improving QoC. Methods: Survey data from 94 patient members of the Swedish LC patient organization about CAM-use and QoC as measured by the instrument “Quality from the patient’s perspective” were analyzed. Results: Fifty (53%) LC-patients used CAM, with 40 of the CAM-users reporting that CAM helped them. The most common CAMs used were dietary supplements and natural remedies, followed by prayer. Significantly more patients reported using prayer and meditation for cure than was the case for other types of CAM used. Less than half the CAM-users reported having spoken with staff from the biomedical health care system about their CAM-use. Patients provided numerous suggestions for improving LC-care in a variety of areas, aiming at a more effective and cohesive care trajectory. No differences in QoC were found between CAM-users and non-CAM-users, but differences in CAM-use i.e. type of CAM, reasons for using CAM, and CAM-provider consulted could be associated with different experiences of care. Conclusions: It is important to recognize that CAM-users are not a homogeneous group but might seek different types of CAMs and CAM-providers in different situations depending on experiences of care.

Formal caregivers' perceptions of quality of care for older people : associating factors

Background: Despite the growing number of studies concerning quality of care for older people, there is a lack of studies depicting factors associated with good quality of care from the formal caregivers' perspective. The aim was to describe formal caregivers' perceptions of quality of care for older people in the community and explore factors associated with these perceptions. In total, 70 nursing assistants, 163 enrolled nurses and 198 registered nurses from 14 communities in central Sweden participated in the study. They filled out the following questionnaires: a modified version of Quality from the Patient's Perspective, Creative Climate Questionnaire, Stress of Conscience Questionnaire, items regarding education and competence, Health Index and Sense of coherence questionnaire. The overall response rate was 57 % (n = 431). Results: In the perceived reality of quality of care respondents assessed the highest mean value in the dimension medical-technical competence and physical technical conditions and lower values in the dimensions; identity-oriented approach, socio-cultural atmosphere and in the context specific dimension. The caregivers estimated their competence and health rather high, had lower average values in sense of coherence and organizational climate and low values in stress of conscience. Conculsions: The PR of quality of care were estimated higher among NA/ENs compared to RNs. Occupation, organizational climate and stress of conscience were factors associated with quality of care that explained 42 % of the variance. Competence, general health and sense of coherence were not significantly associated to quality of care. The mentioned factors explaining quality of care might be intertwined and showed that formal caregivers' working conditions are of great importance for quality of care.

Depicting the interplay between organisational tiers in the use of a national quality registry to develop quality of care in Sweden

BACKGROUND: With a pending need to identify potential means to improved quality of care, national quality registries (NQRs) are identified as a promising route. Yet, there is limited evidence with regards to what hinders and facilitates the NQR innovation, what signifies the contexts in which NQRs are applied and drive quality improvement. Supposedly, barriers and facilitators to NQR-driven quality improvement may be found in the healthcare context, in the politico-administrative context, as well as with an NQR itself. In this study, we investigated the potential variation with regards to if and how an NQR was applied by decision-makers and users in regions and clinical settings. The aim was to depict the interplay between the clinical and the politico-administrative tiers in the use of NQRs to develop quality of care, examining an established registry on stroke care as a case study. METHODS: We interviewed 44 individuals representing the clinical and the politico-administrative settings of 4 out of 21 regions strategically chosen for including stroke units representing a variety of outcomes in the NQR on stroke (Riksstroke) and a variety of settings. The transcribed interviews were analysed by applying The Consolidated Framework for Implementation Research (CFIR). RESULTS: In two regions, decision-makers and/or administrators had initiated healthcare process projects for stroke, engaging the health professionals in the local stroke units who contributed with, for example, local data from Riksstroke. The Riksstroke data was used for identifying improvement issues, for setting goals, and asserting that the stroke units achieved an equivalent standard of care and a certain level of quality of stroke care. Meanwhile, one region had more recently initiated such a project and the fourth region had no similar collaboration across tiers. Apart from these projects, there was limited joint communication across tiers and none that included all individuals and functions engaged in quality improvement with regards to stroke care. CONCLUSIONS: If NQRs are to provide for quality improvement and learning opportunities, advances must be made in the links between the structures and processes across all organisational tiers, including decision-makers, administrators and health professionals engaged in a particular healthcare process.

Visual functioning and health-related quality of life in diabetic patients about to undergo anti-vascular endothelial growth factor treatment for sight-threatening macular edema

Purpose To examine patient-reported outcome (PRO) in a selected group of Swedish patients about to receive anti-vascular endothelial growth factor (VEGF) treatment for diabetic macular edema (DME). Material and methods In this cross-sectional study, 59 patients with diabetes mellitus, who regularly visited the outpatient eye-clinics, were included. Sociodemographic and clinical data were collected and the patients completed PRO measures before starting anti-VEGF treatment. PRO measures assessed eye-specific outcomes (NEI-VFQ-25) and generic health-related quality of life (SF-36). Results The participants consisted of 30 men and 29 women (mean age, 68.5 years); 54 (92 %) patients had type 2 diabetes; Five (9%) patients had moderate or severe visual impairment; 28 (47 %) were classified as having mild visual impairment. Some of the patients reported overall problems in their daily lives, such as with social relationships, as well as problems with impaired sight as a result of reduced distance vision. Conclusions Further studies are needed to investigate PRO factors related to low perceived general health in this patient population. It is important to increase our understanding of such underlying mechanisms to promote improvements in the quality of patient care.