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Towards a universal model of family centered care: a scoping review.

ABSTRACT: BACKGROUND:Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. METHODS:A scoping review guided by Arksey & O'Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. RESULTS:The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n?=?40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. CONCLUSIONS:The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.

SUBMITTER: Kokorelias KM

PROVIDER: S-EPMC6693264 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Towards a universal model of family centered care: a scoping review.

Kokorelias Kristina M KM Gignac Monique A M MAM Naglie Gary G Cameron Jill I JI

BMC health services research 20190813 1

<h4>Background</h4>Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key comp ...[more]

PMID: 31409347

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Project description:IntroductionFollowing a cancer diagnosis, patients and their caregivers face crucial decisions regarding goals of care and treatment, which have consequences that can persist throughout their cancer journey. To foster informed and value-driven treatment choices, evidence-based information on outcomes relevant to patients is needed. Traditionally, clinical studies have largely focused on a few concrete and easily measurable outcomes such as survival, disease progression and immediate treatment toxicities. These outcomes do not capture other important factors that patients consider when making treatment decisions. Patient-centred outcomes (PCOs) reflect the patients' individual values, preferences, needs and circumstances that are essential to directing meaningful and informed healthcare discussions. Often, however, these outcomes are not included in research protocols in a standardised and practical fashion. This scoping review will summarise the existing literature on PCOs in gastrointestinal (GI) cancer care as well as the tools used to assess these outcomes. A comprehensive list of these PCOs will be generated for future efforts to develop a core outcome set.Methods and analysisThis scoping review will follow Arksey and O'Malley's expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL, Cochrane Library and APA PsycINFO databases for studies examining PCOs in the context of GI cancer. We will include studies published in or after the year 2000 up to the date of the final searches, with no language restrictions. Studies involving adult patients with GI cancers and discussion of any PCOs will be included. Opinion pieces, protocols, case reports and abstracts will be excluded. Two authors will independently perform two rounds of screening to select studies for inclusion. The data from full texts will be extracted, charted and summarised both quantitatively and qualitatively.Ethics and disseminationNo ethics approval is required for this scoping review. Results will be disseminated through scientific publication and presentation at relevant conferences.

Project description:IntroductionPatient-centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries.MethodsScientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient-centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC.ResultsThirty-two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient-centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient-centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family-centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse.ConclusionA considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient-centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist.Patient contributionThis scoping review takes the patient's perspective based on the integrative model of patient-centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved.

Project description:ObjectivesTo explore the opportunities and challenges within the health system to facilitate the achievement of universal health coverage (UHC) for people with stroke (PWS) in South Africa (SA).SettingSA.DesignScoping review.Search methodsWe conducted a scoping review of opportunities and challenges to achieve UHC for PWS in SA. Global and Africa-specific databases and grey literature were searched in July 2020. We included studies of all designs that described the healthcare system for PWS. Two frameworks, the Health Systems Dynamics Framework and WHO Framework, were used to map data on governance and regulation, resources, service delivery, context, reorientation of care and community engagement. A narrative approach was used to synthesise results.ResultsFifty-nine articles were included in the review. Over half (n=31, 52.5%) were conducted in Western Cape province and most (n=41, 69.4%) were conducted in urban areas. Studies evaluated a diverse range of health system categories and various outcomes. The most common reported component was service delivery (n=46, 77.9%), and only four studies (6.7%) evaluated governance and regulation. Service delivery factors for stroke care were frequently reported as poor and compounded by context-related limiting factors. Governance and regulations for stroke care in terms of government support, investment in policy, treatment guidelines, resource distribution and commitment to evidence-based solutions were limited. Promising supporting factors included adequately equipped and staffed urban tertiary facilities, the emergence of Stroke units, prompt assessment by health professionals, positive staff attitudes and care, two clinical care guidelines and educational and information resources being available.ConclusionThis review fills a gap in the literature by providing the range of opportunities and challenges to achieve health for all PWS in SA. It highlights some health system areas that show encouraging trends to improve service delivery including comprehensiveness, quality and perceptions of care.

Project description:Background: Delivering person-centered care is one of the core values in general practice. Due to the complexity and multifaceted character of person-centered care, the effects of person-centered care cannot be easily underpinned with robust scientific evidence. In this scoping review we provide an overview of research on effects of person-centered care, exploring the concepts and definitions used, the type of interventions studied, the selected outcome measures, and its strengths and limitations. Methods: Systematic reviews on person-centered care compared to usual care were included from Pubmed, Embase, and PsycINFO. The search was conducted in February 2021. Data selection and charting was done by two reviewers. Results: The literature search yielded 481 articles. A total of 21 full-text articles were assessed for eligibility for inclusion. Four systematic reviews, published between 2012 and 2018, were finally included in this review. All reviews used different definitions and models and classified the interventions differently. The explicit distinction between interventions for providers and patients was made in two systematic reviews. The classification of outcomes also showed large differences, except patient satisfaction that was shared. All reviews described the results narratively. One review also pooled the results on some outcome measures. Most studies included in the reviews showed positive effects, in particular on process outcomes. Mixed results were found on patient satisfaction and clinical or health outcomes. All review authors acknowledged limitations due to lack of uniform definitions, and heterogeneity of interventions and outcomes measures. Discussion: Person-centered care is a concept that seems obvious and understandable in real life but is complex to operationalize in research. This scoping review reinforces the need to use mixed qualitative and quantitative methods in general practice research. For spreading and scaling up person-centered care, an implementation or complexity science approach could be used. Research could be personalized by defining therapeutic goals, interventions, and outcome variables based on individual preferences, goals, and values and not only on clinical and biological characteristics. Observational data and patient satisfaction surveys could be used to support quality improvement. Integrating research, education, and practice could strengthen the profession, building on the fundament of shared core values.

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Towards a universal model of family centered care: a scoping review.

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Towards a universal model of family centered care: a scoping review.

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