Informal caregiver and nurse perceptions of access to culturally appropriate health care for ethnic minority persons with dementia: A qualitative study.

AIMS: This study explored what informal caregivers of ethnic minority (EM) persons with dementia in the Netherlands perceive as culturally accessible health care and nurses' perceptions of how cultural competence can be improved to facilitate access to health care for EM persons with dementia and their informal caregivers. DESIGN: Qualitative description research with semi-structured individual interviews and focus group discussions (FGDs). METHODS: Semi-structured interviews with 15 nurses and 6 informal caregivers provided input for two FGDs with nurses about the need to strengthen their cultural competence to improve access to health care for EM persons with dementia and their informal caregivers. Interview data were collected between September 2020 and April 2021 in the Netherlands. Focus group discussion data were collected between June and September 2021 in the Netherlands. RESULTS: Nurses and informal caregivers experienced difficulty building and maintaining a relationship. Contrary to informal caregivers' experiences, nurses felt a shared cultural background with the persons with dementia and informal caregiver is necessary. Although nurses acknowledged the importance of cultural knowledge, cultural skills, in particular, were mentioned as needing improvement. Examples are mapping involved family members and their roles, asking the right questions and letting go of personal judgements. Nurses frequently mentioned stereotypical thinking and seeing 'the other' as different, and collaboration with(in) family proved difficult for informal caregivers and nurses. CONCLUSION: Strengthening cultural skills will contribute to facilitating better access to cultural appropriate health care for EM persons with dementia and their informal caregivers. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. IMPACT: This study explores what is perceived as culturally accessible health care and what nurses need to improve their cultural competence. We show that strengthening nurses' cultural competence by addressing which skills should be improved can improve access to health care for EM persons with dementia and their informal caregivers.

Accessibility of health care experienced by persons with dementia from ethnic minority groups and formal and informal caregivers: A scoping review of European literature.

The number of persons with dementia from ethnic minority backgrounds is increasing. However, ethnic minority groups use health care services less frequently compared to the general population. We conducted a scoping review and used the theoretical framework developed by Levesque to provide an overview of the literature concerning access to health care for ethnic minority people with dementia and (in)formal caregivers. Studies mentioned barriers in (1) the ability to perceive a need for care in terms of health literacy, health beliefs and trust, and expectations; (2) the ability to seek care because of personal and social values and the lack of knowledge regarding health care options; and (3) lack of person-centered care as barrier to continue with professional health care. Studies also mentioned barriers experienced by professionals in (1) communication with ethnic minorities and knowledge about available resources for professionals; (2) cultural and social factors influencing the professionals' attitudes towards ethnic minorities; and (3) the appropriateness of care and lacking competencies to work with people with dementia from ethnic minority groups and informal caregivers. By addressing health literacy including knowledge about the causes of dementia, people with dementia from ethnic minorities and their informal caregivers may improve their abilities to access health care. Health care professionals need to strengthen their competencies in order to facilitate access to health care for this group.

Goal planning in person-centred care supports older adults receiving case management to attain their health-related goals.

PURPOSE: Care for older adults should preferably be provided in a person-centred way that includes goal planning. The aim of the present cohort study is to gain an insight into the results of goal planning, in a person-centred care setting for community-living older adults. MATERIALS AND METHODS: Within Embrace, a person-centred and integrated care service, older adults set goals with the aim to improve health-related problems. For every goal, they rated severity scores ranging from 0 (no problem) to 10 (extremely severe): a baseline score, a target score and, within one year, an end score to evaluate these goals. The differences between baseline and end scores (goal progress) and target and end scores (goal attainment), and the percentage of goals attained were calculated and compared between health-related domains (i.e., mental health, physical health, mobility, and support). RESULTS: Among 233 older adults, 836 goal plans were formulated of which 74% (95% Confidence Interval: 71-77) were attained. Goals related to physical health were the most likely to be attained and goals for mobility and pain the least likely. CONCLUSIONS: Older adults are able to attain health-related goals through collaborative goal planning. We recommend future integrated care programmes for older adults to incorporate goal-planning methods to achieve person-centred care.IMPLICATIONS FOR REHABILITATIONOlder adults experiencing frailty or complex care needs and receiving individual support within an integrated care setting are able to formulate and attain goals using goal planning with severity scores.Goal plans of community-living older adults mostly aim at improving health-related problems concerning physical health, mobility, or support.Goals related to physical health are the most likely to be attained, while goals for mobility and pain are the least likely to be attained.

Health-Related Problems and Changes After 1 Year as Assessed With the Geriatric ICF Core Set (GeriatrICS) in Community-Living Older Adults Who Are Frail Receiving Person-Centered and Integrated Care From Embrace.

OBJECTIVE: To assess the prevalence, severity, and change in health-related problems in a sample of older adults who received individual care and support from Embrace, for the whole sample, per subgroup based on complexity of care needs and frailty, and for those who had at baseline a health-related problem. DESIGN: A pretest-posttest study with assessments at baseline and after 12 months. SETTING: Community. PARTICIPANTS: Older adults aged 75 years and older (N=136) who are frail (n=56) or who have complex care needs (n=80). INTERVENTION: Participants received care and support by Embrace, a person-centered and integrated care service for community-living older adults supporting them to age in place. A multidisciplinary team provided care and support, with intensity depending on the older adults' risk profile. MAIN OUTCOME MEASURE: Health-related problems as perceived by older adults and measured with the Geriatric International Classification of Functioning, Disability and Health Core Set. RESULTS: Health-related problems were related to 6 coherent clusters: (1) Mental Functions; (2) Physical Health; (3) Mobility; (4) Personal Care; (5) Nutrition; and (6) Support. The most prevalent and most severe problems at baseline were related to Mental Functions and Mobility. Changes in the prevalence of problems after 12 months varied. Severity scores decreased or remained stable, except for Mobility items which showed a varying changing pattern in participants with complex care needs. Prevalence and severity of problems for those with a problem at baseline decreased after 12 months. Frail participants with a problem had higher baseline severity scores than those with complex care needs experiencing a problem, but differences in changes between individuals who are frail and those with complex care needs were small. CONCLUSIONS: The results are encouraging and may indicate that individual, person-centered and integrated care and support from Embrace offers a route to counteracting the decline in physical, cognitive and social functioning associated with aging.

Experiences of case managers in providing person-centered and integrated care based on the Chronic Care Model: A qualitative study on embrace.

BACKGROUND: Due to the rise in the number of older adults within the population, healthcare demands are changing drastically, all while healthcare expenditure continues to grow. Person-centered and integrated-care models are used to support the redesigning the provision of care and support. Little is known, however, about how redesigning healthcare delivery affects the professionals involved. OBJECTIVES: To explore how district nurses and social workers experience their new professional roles as case managers within Embrace, a person-centered and integrated-care service for community-living older adults. METHODS: We performed a qualitative study consisting of in-depth interviews with case managers (district nurses, n = 6; social workers, n = 5), using a topic-based interview guide. Audiotaped interviews were transcribed verbatim and analyzed using qualitative content analysis. RESULTS: The experiences of the case managers involved four major themes: 1) the changing relationship with older adults, 2) establishing the case-manager role, 3) the case manager's toolkit, and 4) the benefits of case management. Within these four themes, subthemes addressed the shift to a person-centered approach, building a relationship of trust, the process of case management, knowledge and experience, competencies of and requirements for case managers, and the differences in professional background. DISCUSSION: We found that this major change in role was experienced as a learning process, one that provided opportunities for personal and professional growth. Case managers felt that they were able to make a difference, and found their new roles satisfying and challenging, although stressful at times. Ongoing training and support were found to be a prerequisite in helping to shift the focus towards person-centered and integrated care.

Integrated and Person-Centered Care for Community-Living Older Adults: A Cost-Effectiveness Study.

OBJECTIVES: To assess the cost-effectiveness of Embrace, an integrated primary care service for older adults. DATA SOURCES: Care and support claims from health care insurers, long-term care administration, and municipalities for enrolled older adults between 2011 and 2013. STUDY DESIGN: A total of 1,456 older adults, listed with 15 general practitioners practices in the Netherlands, were stratified into risk profiles ("Robust," "Frail," and "Complex care needs") and randomized to Embrace or care-as-usual groups. Incremental costs were calculated per quality-adjusted life year, per day able to age in place, and per percentage point risk profile improvement. PRINCIPAL FINDINGS: Total average costs were higher for Embrace compared to care-as-usual. Differences in health-associated outcomes were small and not statistically significant. Probabilities that Embrace is cost-effective were below 80 percent, except for "risk profile improvements" within risk profile "Complex care needs." Complete case analysis resulted in smaller differences in total average costs across conditions and differences in health-associated outcomes remained small. CONCLUSIONS: According to current standards, Embrace is not considered cost effective after 12 months. However, it could be considered worthwhile in terms of "risk profile improvements" for older adults with "Complex care needs," if society is willing to invest substantially.

Effects of a population-based, person-centred and integrated care service on health, wellbeing and self-management of community-living older adults: A randomised controlled trial on Embrace.

OBJECTIVE: To evaluate the effects of the population-based, person-centred and integrated care service 'Embrace' at twelve months on three domains comprising health, wellbeing and self-management among community-living older people. METHODS: Embrace supports older adults to age in place. A multidisciplinary team provides care and support, with intensity depending on the older adults' risk profile. A randomised controlled trial was conducted in fifteen general practices in the Netherlands. Older adults (≥75 years) were included and stratified into three risk profiles: Robust, Frail and Complex care needs, and randomised to Embrace or care as usual (CAU). Outcomes were recorded in three domains. The EuroQol-5D-3L and visual analogue scale, INTERMED for the Elderly Self-Assessment, Groningen Frailty Indicator and Katz-15 were used for the domain 'Health.' The Groningen Well-being Indicator and two quality of life questions measured 'Wellbeing.' The Self-Management Ability Scale and Partners in Health scale for older adults (PIH-OA) were used for 'Self-management.' Primary and secondary outcome measurements differed per risk profile. Data were analysed with multilevel mixed-model techniques using intention-to-treat and complete case analyses, for the whole sample and per risk profile. RESULTS: 1456 eligible older adults participated (49%) and were randomized to Embrace (n(T0) = 747, n(T1) = 570, mean age 80.6 years (SD 4.5), 54.2% female) and CAU (n(T0) = 709, n(T1) = 561, mean age 80.8 years (SD 4.7), 55.6% female). Embrace participants showed a greater-but clinically irrelevant-improvement in self-management (PIH-OA Knowledge subscale effect size [ES] = 0.14), and a greater-but clinically relevant-deterioration in health (ADL ES = 0.10; physical ADL ES = 0.13) compared to CAU. No differences in change in wellbeing were observed. This picture was also found in the risk profiles. Complete case analyses showed comparable results. CONCLUSIONS: This study found no clear benefits to receiving person-centred and integrated care for twelve months for the domains of health, wellbeing and self-management in community-living older adults.

Integrated Care for Older Adults Improves Perceived Quality of Care: Results of a Randomized Controlled Trial of Embrace.

BACKGROUND: All community-living older adults might benefit from integrated care, but evidence is lacking on the effectiveness of such services for perceived quality of care. OBJECTIVE: To examine the impact of Embrace, a community-based integrated primary care service, on perceived quality of care. DESIGN: Stratified randomized controlled trial. PARTICIPANTS: Integrated care and support according to the "Embrace" model was provided by 15 general practitioners in the Netherlands. Based on self-reported levels of case complexity and frailty, a total of 1456 community-living older adults were stratified into non-disease-specific risk profiles ("Robust," "Frail," and "Complex care needs"), and randomized to Embrace or control groups. INTERVENTION: Embrace provides integrated, person-centered primary care and support to all older adults living in the community, with intensity of care dependent on risk profile. MEASUREMENTS: Primary outcome was quality of care as reported by older adults on the Patient Assessment of Integrated Elderly Care (PAIEC). Effects were assessed using mixed model techniques for the total sample and per risk profile. Professionals' perceived level of implementation of integrated care was evaluated within the Embrace condition using the Assessment of Integrated Elderly Care. KEY RESULTS: Older adults in the Embrace group reported a higher level of perceived quality of care than those in the control group (B = 0.33, 95 % CI = 0.15-0.51, ES d = 0.19). The advantages of Embrace were most evident in the "Frail" and "Complex care needs" risk profiles. We found no significant advantages for the "Robust" risk profile. Participating professionals reported a significant increase in the perceived level of implementation of integrated care (ES r = 0.71). CONCLUSIONS: This study shows that providing a population-based integrated care service to community-living older adults improved the quality of care as perceived by older adults and participating professionals.

The Partners in Health scale for older adults: design and examination of its psychometric properties in a Dutch population of older adults.

BACKGROUND: Self-management is an important asset in helping older adults remain independent and in control for as long as possible. There is no reliable and valid measurement instrument to evaluate self-management behaviour of older adults. OBJECTIVE: This study aims to design a measurement instrument, that is the Partners in Health scale for older adults (PIH-OA), to assess self-management knowledge and behaviour of community-living older adults and to examine its psychometric properties in a Dutch context. METHODS/DESIGN: The original PIH scale was translated into Dutch and adapted to the context of community-living older adults, resulting in the PIH-OA. Data for 1127 participants (mean age 81.7, SD=4.5) from the Embrace study were used to assess the psychometric properties. RESULTS: Data fitted a three-factor model, covering the constructs Knowledge, Management and Coping, with good internal consistencies (Cronbach's alphas ranging from .77 to .84). Known groups validity was confirmed: no differences were found between gender, age and marital status groups, and differences were found between the education level and health status groups. Discriminant validity was confirmed by weak correlations between PIH-OA scales and scales evaluating "Perceived integrated care" and "Activities of daily living (ADL)" (r<.30), and a moderate correlation between the PIH-OA subscale "Coping" and the scale evaluating "ADL" (r=.41). CONCLUSION: The PIH-OA appears to be a reliable and valid measurement instrument for assessing the self-management knowledge and behaviour of older adults. This could help professionals provide tailored support to improve the well-being and independence of older adults.

Development and psychometric evaluation of a measure to evaluate the quality of integrated care: the Patient Assessment of Integrated Elderly Care.

BACKGROUND: Novel population-based integrated care services are being developed to adequately serve the growing number of elderly people. Suitable, reliable and valid measurement instruments are needed to evaluate the quality of care delivered. OBJECTIVE: To develop a measure to evaluate the quality of integrated care from the perspective of elderly people, the Patient Assessment of Integrated Elderly Care (PAIEC), and then to assess its psychometric properties. METHODS/DESIGN: After the Patient Assessment of Chronic Illness Care was adapted to the PAIEC, a cross-sectional postal-survey study was performed among 223 elderly people who received integrated elderly care and support. We assessed the factor structure, internal consistency, known groups and divergent validity using robust nonparametric tests. RESULTS: Mean age of participants was 83 years (standard deviation 4.7), and 69% was female. The original five-factor model was rejected; a good fit was found for a three-factor model, when excluding the item on patients' satisfaction with care. The PAIEC and its subscales showed good internal consistency (ordinal alphas > 0.90). Known-groups validity was supported regarding number of medications, prevalence of chronic conditions and home care received. No differences were found between groups based on sociodemographic aspects. Divergent validity was supported by low correlations (Spearman's rank correlation coefficients < 0.30) between PAIEC scales and measures of quality of life, complexity of care needs and frailty. CONCLUSION: The PAIEC seems to have considerable potential as a reliable and valid measurement instrument that evaluates quality of integrated care and support from the perspective of elderly people.

The Geriatric ICF Core Set reflecting health-related problems in community-living older adults aged 75 years and older without dementia: development and validation.

PURPOSE: The aim of the present study was to develop a valid Geriatric ICF Core Set reflecting relevant health-related problems of community-living older adults without dementia. METHODS: A Delphi study was performed in order to reach consensus (≥70% agreement) on second-level categories from the International Classification of Functioning, Disability and Health (ICF). The Delphi panel comprised 41 older adults, medical and non-medical experts. Content validity of the set was tested in a cross-sectional study including 267 older adults identified as frail or having complex care needs. RESULTS: Consensus was reached for 30 ICF categories in the Delphi study (fourteen Body functions, ten Activities and Participation and six Environmental Factors categories). Content validity of the set was high: the prevalence of all the problems was >10%, except for d530 Toileting. The most frequently reported problems were b710 Mobility of joint functions (70%), b152 Emotional functions (65%) and b455 Exercise tolerance functions (62%). No categories had missing values. CONCLUSION: The final Geriatric ICF Core Set is a comprehensive and valid set of 29 ICF categories, reflecting the most relevant health-related problems among community-living older adults without dementia. This Core Set may contribute to optimal care provision and support of the older population. Implications for Rehabilitation The Geriatric ICF Core Set may provide a practical tool for gaining an understanding of the relevant health-related problems of community-living older adults without dementia. The Geriatric ICF Core Set may be used in primary care practice as an assessment tool in order to tailor care and support to the needs of older adults. The Geriatric ICF Core Set may be suitable for use in multidisciplinary teams in integrated care settings, since it is based on a broad range of problems in functioning. Professionals should pay special attention to health problems related to mobility and emotional functioning since these are the most prevalent problems in community-living older adults.

Embrace, a model for integrated elderly care: study protocol of a randomized controlled trial on the effectiveness regarding patient outcomes, service use, costs, and quality of care.

BACKGROUND: Ongoing growth in health care expenditures and changing patterns in the demand for health care challenge societies worldwide. The Chronic Care Model (CCM), combined with classification for care needs based on Kaiser Permanente (KP) Triangle, may offer a suitable framework for change. The aim of the present study is to investigate the effectiveness of Embrace, a population-based model for integrated elderly care, regarding patient outcomes, service use, costs, and quality of care. METHODS/DESIGN: The CCM and the KP Triangle were translated to the Dutch setting and adapted to the full elderly population living in the community. A randomized controlled trial with balanced allocation was designed to test the effectiveness of Embrace. Eligible elderly persons are 75 years and older and enrolled with one of the participating general practitioner practices. Based on scores on the INTERMED-Elderly Self-Assessment and Groningen Frailty Indicator, participants will be stratified into one of three strata: (A) robust; (B) frail; and (C) complex care needs. Next, participants will be randomized per stratum to Embrace or care as usual. Embrace encompasses an Elderly Care Team per general practitioner practice, an Electronic Elderly Record System, decision support instruments, and a self-management support and prevention program - combined with care and support intensity levels increasing from stratum A to stratum C. Primary outcome variables are patient outcomes, service use, costs, and quality of care. Data will be collected at baseline, twelve months after starting date, and during the intervention period. DISCUSSION: This study could provide evidence for the effectiveness of Embrace. TRIAL REGISTRATION: The Netherlands National Trial Register NTR3039.