Development of a Person-Centred Integrated Care Approach for Chronic Disease Management in Dutch Primary Care: A Mixed-Method Study.

To reduce the burden of chronic diseases on society and individuals, European countries implemented chronic Disease Management Programs (DMPs) that focus on the management of a single chronic disease. However, due to the fact that the scientific evidence that DMPs reduce the burden of chronic diseases is not convincing, patients with multimorbidity may receive overlapping or conflicting treatment advice, and a single disease approach may be conflicting with the core competencies of primary care. In addition, in the Netherlands, care is shifting from DMPs to person-centred integrated care (PC-IC) approaches. This paper describes a mixed-method development of a PC-IC approach for the management of patients with one or more chronic diseases in Dutch primary care, executed from March 2019 to July 2020. In Phase 1, we conducted a scoping review and document analysis to identify key elements to construct a conceptual model for delivering PC-IC care. In Phase 2, national experts on Diabetes Mellitus type 2, cardiovascular diseases, and chronic obstructive pulmonary disease and local healthcare providers (HCP) commented on the conceptual model using online qualitative surveys. In Phase 3, patients with chronic conditions commented on the conceptual model in individual interviews, and in Phase 4 the conceptual model was presented to the local primary care cooperatives and finalized after processing their comments. Based on the scientific literature, current practice guidelines, and input from a variety of stakeholders, we developed a holistic, person-centred, integrated approach for the management of patients with (multiple) chronic diseases in primary care. Future evaluation of the PC-IC approach will show if this approach leads to more favourable outcomes and should replace the current single-disease approach in the management of chronic conditions and multimorbidity in Dutch primary care.

Promoting empowerment for people living with dementia in nursing homes: Development and feasibility evaluation of an empowerment program.

OBJECTIVES: This article describes the development and feasibility evaluation of an empowerment program for people living with dementia in nursing homes. METHODS: Development and feasibility evaluation of the empowerment program was guided by the British Medical Research Council's (MRC) framework. In the developmental phase, we used intervention mapping to develop the theory- and evidence-based intervention. During the feasibility phase, two care teams utilised the program from September to December 2020. We evaluated the feasibility in terms of demand, acceptability, implementation, practicality, integration and limited efficacy. FINDINGS: This study showed that, according to healthcare professionals, the program was feasible for promoting empowerment for people living with dementia in a nursing home. Healthcare professionals mentioned an increased awareness regarding the four themes of empowerment (sense of identity, usefulness, control and self-worth), and greater focus on the small things that matter to residents. Healthcare professionals experienced challenges in involving family caregivers. CONCLUSION: An important step is to take into account the implementation prerequisites that follow from our findings, and to further investigate feasibility, as the use of the program and data collection was hindered by the COVID-19 pandemic. Subsequent research could investigate the effects of the empowerment program.

Empowerment for people living with dementia: An integrative literature review.

BACKGROUND AND OBJECTIVES: Although the concept of empowerment seems useful for good care and support for people living with dementia, there is a lack of understanding of the process of empowerment. Therefore, more insight is needed into the concept of empowerment, and the environment's role in the empowerment process. RESEARCH DESIGN AND METHODS: We performed an integrative literature review (PubMed, CINAHL, PsychINFO), including studies that addressed empowerment for people living with dementia in their title or abstract. Using qualitative data analysis software ATLAS.ti, we applied open codes to describe all relevant aspects of included articles. Common themes and categories were identified using inductive reasoning and constant comparison. RESULTS: Sixty-nine articles were included. We identified four themes: (1) description of the state of being empowered, (2) the process of empowerment, (3) contribution of the environment to the empowerment process, and (4) effects on other variables. We combined these results with the conceptual framework of our previous qualitative study on the definition of empowerment for people living with dementia based on stakeholders' perspectives. Subsequently, the combined information of both studies was visualized in a revised conceptual framework. DISCUSSION AND IMPLICATIONS: This literature review provides more details as to the role of the environment for empowerment of people living with dementia and suggests that empowerment can be considered a dynamic process, taking place through interaction between the person living with dementia and their environment. Our revised conceptual framework of empowerment can serve as a basis for future studies on empowerment for people living with dementia, and to support (in)formal caregivers in the empowerment process.

Defining empowerment for older people living with dementia from multiple perspectives: A qualitative study.

BACKGROUND AND OBJECTIVES: The concept of empowerment seems promising for people living with dementia to live their life as they want to for as long as possible. Therefore, this study aimed to explore what the concept of empowerment means and includes for people living with dementia from the perspectives of people living with dementia themselves, their informal caregivers, and healthcare professionals. RESEARCH DESIGN AND METHODS: Qualitative research using focus group discussions and individual interviews with people living with dementia (n = 15), informal caregivers (n = 16) and healthcare professionals (n = 46) to explore perspectives on empowerment. Audio-recordings were transcribed verbatim, and separately analyzed by two researchers using inductive thematic analysis. RESULTS: Four themes were identified as important aspects of empowerment: (1) having a sense of personal identity, (2) having a sense of choice and control, (3) having a sense of usefulness and being needed, and (4) retaining a sense of worth. Based on these themes, a conceptual framework of empowerment for older people living with dementia was developed. Empowerment takes place within the person living with dementia, but is achieved through interaction with their environment. The four themes seem to be important both at home and in nursing homes, and in different stages of dementia. However, practical detailing of support differed. DISCUSSION AND IMPLICATIONS: Our empowerment framework may provide a basis for developing interventions to empower people living with dementia and to strengthen (in)formal caregivers in this empowerment process. Support for people living with dementia must be adjusted to their personal situation and individual capabilities.

Valued activities and informal caregiving in stroke: a scoping review.

Purpose: Map the literature about valued activities and informal caregiving post stroke and determine the nature, extent, and consequences of caregivers' activity changes. Methods: A scoping review was undertaken, searching Pubmed, Cinahl, PsycInfo, and Google Scholar. Two researchers independently identified relevant articles, extracted study characteristics and findings, and assigned codes describing the topics and outcomes. Using thematic analysis, the main study topics and study outcomes were described. Results: The search yielded 662 studies, 30 of which were included. These were mainly qualitative and cross-sectional studies assessing caregivers' activity changes and related factors, or exploring caregivers' feelings, needs and strategies to deal with their activity challenges. Although caregivers often lost their social and leisure activities, which made them feel unhappy and socially isolated, we found no studies about professional interventions to help caregivers maintain their activities. Over the years, caregivers' activity levels generally increased. However, some caregivers suffered from sustained activity loss, which, in turn, relates to depression. Conclusion: Loss of valued activities is common for stroke caregivers. Although high-level evidence is lacking, our results suggest that sustained activity loss can cause stroke caregivers to experience poor mental health and wellbeing. Suggestions to help caregivers maintain their valued activities are presented. Implications for rehabilitation Not only stroke survivors but also their informal caregivers tend to lose their valued activities, such as their social and leisure activities. Although many caregivers manage to resume their valued activities over time, others suffer from sustained activity loss up to at least two years post stroke. Loss of valued activities in stroke caregivers can result in lower levels of wellbeing, depression, and social isolation. Rehabilitation professionals should screen stroke caregivers for activity loss and assist them in resuming their valued activities and maintaining their social contacts.

Phenylalanine requirements of enterally fed term and preterm neonates.

BACKGROUND: Phenylalanine, which is an essential aromatic amino acid, is either used for protein synthesis or irreversibly hydroxylated to tyrosine. The provision of optimal amounts of dietary phenylalanine is not only important for growth and development but might also influence catecholamine synthesis and release rates. The current recommended aromatic amino acid requirement for infants aged 0-6 mo is based on the amino acid content of human milk. OBJECTIVE: We quantified the requirements for phenylalanine in the presence of excess tyrosine (166 or 177 mg/kg per day for term and preterm infants, respectively) for term and preterm neonates by using the indicator amino acid oxidation method with l-[1-(13)C]lysine 2HCl as an indicator. Hence, we determined the minimum obligatory phenylalanine requirement. DESIGN: Fully enterally fed term and preterm infants received randomly graded amounts of phenylalanine (5-177 mg/kg per day) as part of an elemental formula. Data are expressed as means ± SDs. RESULTS: Twenty term (birth weight: 3.19 ± 0.34 kg; gestational age: 38.9 ± 1 wk) and 16 preterm (birth weight: 1.75 ± 0.17 kg; gestational age: 32.5 ± 0.6 wk) Asian infants participated at a postnatal age of 17 ± 8 d. In total, 44 studies were performed. The minimum obligatory phenylalanine requirement was 58 mg/kg per day (95% CI: 38-78 mg/kg per day) and 80 mg/kg per day (95% CI: 40-119 mg/kg per day) for term and preterm infants, respectively. CONCLUSION: The determined mean phenylalanine-requirement estimates are lower than the contents of term and preterm formulas currently on the market. This trial was registered at www.trialregister.nl as NTR1610.