Seek to Focus on Family Strengths and Holistic Family Needs

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• Published: 13 August 2019

Towards a universal model of family centered intendance: a scoping review

BMC Health Services Research volume 19, Article number:564 (2019) Cite this article

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Abstruse

Background

Families play an important role meeting the intendance needs of individuals who require assistance due to illness and/or inability. Yet, without adequate back up their own health and wellbeing can be compromised. The literature highlights the demand for a move to family-centered care to improve the well-being of those with illness and/or inability and their family unit caregivers. The objective of this paper was to explore existing models of family-centered intendance to determine the fundamental components of existing models and to identify gaps in the literature.

Methods

A scoping review guided by Arksey & O'Malley (2005) examined family-centered intendance models for diverse affliction and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published betwixt 1990 to August i, 2018. Articles describing the evolution of a family-centered model in whatsoever patient population and/or healthcare field or on the evolution 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 intendance models are most commonly bachelor for pediatric patient populations (north = 40). Beyond all family-centered intendance 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 betwixt family members and health intendance providers, 2) consideration of family unit contexts, 3) policies and procedures, and 4) patient, family, and health care professional pedagogy. Some of these aspects are universal and some of these are illness specific.

Conclusions

The review identified core aspects of family unit-centred care models (e.1000., 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 disease specific (e.1000., illness-specific teaching). This review identified areas in need of further research specifically related to the relationship betwixt care plan decision making and privacy over medical records within models of family unit centred care. Few studies have evaluated the touch of the diverse models on patient, family, or health system outcomes. Findings can inform motility towards a universal model of family-centered care for all populations and care contexts.

Peer Review reports

Background

Families play an integral role providing care to individuals with health conditions. As the number of individuals facing chronic affliction continues to rise worldwide, there is a timely need to increment recognition of the care input fabricated by family members. Near half of Canadians anile 15 years and older accept provided care to persons with disease and/or disabilities [1]. Definitions of caregivers vary, simply in full general they are an unpaid family unit fellow member, shut friend, or neighbor who provides assistance with every solar day activities, including hands-on intendance, care coordination and financial management [2]. We apply the term caregivers to reflect this definition. Nosotros utilise the term family to include the patient, caregiver(s) and other family members. When caring for patients with progressively deteriorating weather condition and increasing care needs, over fourth dimension, caregivers perform more complex care duties similar to those carried out by professional person wellness or social service providers [3, 4]. Thus, caregivers play an important role in the intendance of persons with illnesses or disability across the entire illness trajectory.

Caregiving can exist associated with negative outcomes. Caregivers' physical and mental health, fiscal status, and social life are often negatively impacted, regardless of the care recipients' affliction [2,3,4]. Equally a upshot, the quality and sustainability of intendance provision at home may be threatened [v, vi]. Policies and programs to help sustain the caregiving part may reduce the negative consequences of caregiving and optimize intendance provision in the home.

The need to support caregivers to minimize negative outcomes and optimize the care they provide has received considerable attention in recent policy initiatives. In 2007, the Ontario Ministry of Health and Long-Term Care (MOHLTC) announced the Aging at Home Strategy, "to enable people to continue leading healthy and contained lives in their own homes" [7]. The strategy implies a shift away from institutional (e.g., long-term intendance) care towards home care, using population-based funding allocations to offer wellness and social services to seniors and their caregivers [7]. This is similar to initiatives in other provinces, such every bit British Columbia's Selection in Supports for Independent Living (CSIL) program, introduced in 1994. Equally these strategies place increasing demands on caregivers, a broader initiative, the National Carer Strategy launched in 2008 and updated in 2014 articulates the need for universal priorities to back up caregivers [8]. Changes in Canada are echoed in other countries, including Sweden and Vietnam [nine,10,11]. These initiatives aim to facilitate a collaborative action plan to back up seniors through policy.

Family-centered care has been proposed to address the needs of not only the patient, but also their family members. To date, family-centered intendance has been defined by a number of organizations. The Institute for Patient- and Family-Centered Care (IPFCC) [12] defines family-centered intendance as mutually benign partnerships betwixt health care providers (HCPs), patients, and families in wellness care planning, delivery, and evaluation. Alternatively, Perrin and colleagues [xiii] define family-centered intendance as an organized organization of healthcare, education and social services offered to families, that permits coordinated care across systems. In palliative intendance, family-centered care is defined by Gilmer [14] as a seamless continuity in addressing patient, family, and community needs related to last conditions through interdisciplinary collaboration. In the broadest scope, the notion of family unit-centred care embraces the view of the intendance-client equally the patient and their family, rather than just the patient [14].

Edifice upon existing definitions, models of family-centered intendance have been proposed for a number of patient populations. The family-centered approach to healthcare delivery, developed nearly notably for pediatric-intendance, values a partnership with family unit members in addressing the medical and psychosocial health of patients. Parents are considered experts apropos their child's abilities and needs [15, 16]. In the context of critical care, family unit-centered interventions may decrease the strain of caregiving in families during a crunch [17]. In the context of stroke, a family-centered arroyo to rehabilitation showed an comeback in developed children caregivers' low and health status one-year post stroke [xviii]. Other researchers have argued that family unit-centered intendance offers an opportunity to support families and strengthen a working partnership between the patient, family, and health professionals during end of life care [19]. With an aging population and a growing number of people living with chronic disease, family-centered care tin can help health care systems to provide back up and improve quality-of-life, for patients and their families.

To appointment, there has been no synthesis of central components of original family-centered care models across all illness populations. Therefore, the objective of this paper was to conduct a scoping review of original models of family-centered care to determine the key model components and to identify aspects that are universal across illness populations, and care contexts and aspects that are illness- or intendance-context specific. This paper likewise aimed to identify gaps in the literature to provide recommendations for future enquiry. A scoping review was selected as optimum because its goals are to generate a profile of the primal concepts in the existing literature on a topic and place gaps in the literature [20].

Methods

Nosotros used a scoping review methodology guided by Arksey & O'Malley [21] to gather and summarize the existing literature on family-centred care models.

Search strategy

A literature search of MEDLINE (including ePub ahead of print, in procedure & other non-indexed citations), CINAHL, PSYCHInfo and EMBASE databases was conducted. The search terms "family-centered", "family unit-centred" were practical. The search strategy utilized a narrow focus due to the high degree of dissonance boosted keywords generated. All searches were express to English language language publications from 1990 to August 1, 2018. We did not limit the patient population as nosotros believed that the expected number of models in whatever sub-set of populations would be low. Searches were conducted past an Data Specialist. EndNote was used to organize the literature and assist with removal of duplicates. Encounter Boosted file i for an instance of the search strategy.

Inclusion and exclusion criteria

Inclusion criteria

• The focus of the article was on the development and/or evaluation of a family unit-centered model or a family-centered service commitment intervention

• The commodity considered healthcare providers' communication/interactions with patients and families

• The focus of the commodity was on the evolution of a family-centered model in any patient population and/or location of care (i.east., acute intendance hospital, inpatient rehabilitation, community, institutional long-term care).

For the purposes of this newspaper, we used The Agency for Clinical Innovation (ACI)'s definition of a model of care: "the way wellness services are delivered" ([22], p., 3). The definition includes where, by whom and how the intervention is delivered.

Exclusion criteria

• The focus of the commodity was an cess or the evaluation of a tool that measured the degree of family unit-centeredness of a program, intervention or setting and not the evaluation of an original family-centered care model

• The article considered only interactions betwixt family members

• The article was a review paper that did not propose an original model of family-centered care

• The article pertained primarily to ethical issues or the theoretical understandings of family-centered intendance

• The commodity was focused on training healthcare providers on how to deliver family unit-centered intendance and did not offering an original model of family-centered intendance.

• The article reviewed or discussed only the history, implications or rationale for family-centered care (e.g., the study conclusions suggested the need for a model of family-centered intendance)

• The commodity described a patient-centered care model that only included discussion of family interactions

• The focus of the article was on the evolution of a family-centered model exclusively for social support, rather than in a clinical, health-care context.

Written report pick and charting the data

The search identified 14,393 papers. Ane of the authors (G.M.1000.) reviewed the citations and abstracts using the inclusion and exclusion criteria. Two other individuals reviewed 30% of the retrieved abstracts. Whatsoever discrepancies were discussed until consensus was reached. The inclusion/exclusion criteria were modified as needed to enhance clarity (final inclusion/exclusion criteria same). Full-text articles of all potentially relevant references were retrieved, and each was independently assessed for eligibility by one of the authors (K.One thousand.G.) and the 2 other reviewers. At that place was 100% concordance between all reviewers on this 2nd step. Reference lists of the included articles were reviewed by one of the authors (G.M.M.) and the two other reviewers, but no boosted articles were added to the review.

Data were extracted by the pb author (K.1000.K.) and the abstracted information content was reviewed for accuracy by the ii other reviewers. Data were extracted relating to elements of the family-centered intendance model including details of the targeted population, objectives, intervention (if applicable), fundamental findings and desired outcomes of the model. The key components of the models were systematically charted using a data charting form developed in Microsoft Word with a priori categories to guide the data extraction (come across Additional file ii).

Data synthesis

The purpose of this scoping review was to amass the family-centred model descriptions and present an overview of the key elements of the models. Methodological rigour of the publications was not examined, as consequent with scoping review methodologies [21].

The extracted data were collated to identify primal components of models of family-centered care. Yard.M.K extracted the data and J.I.C reviewed the extracted data. K.M.Chiliad and J.I.C then followed qualitative thematic analysis using techniques of scrutinizing, charting and sorting the extracted data according to crucial nuances of the data, and this was summarized into descriptive themes characterizing model components [21, 23]. Data were synthesized using summary tables with tentative thematic headings. Themes and potential components of family-centered intendance models were discussed betwixt K.M.K and J.I.C until consensus was achieved, and final themes were developed. When discussing themes, K.M.K and J.I.C analyzed the data within and so beyond different patient populations (diagnoses), age groups (pediatric vs. adult literature), and intendance contexts (e.thou., acute care, community care) to identify aspects of models that are universal (i.eastward., do not differ across populations and care contexts) and aspects that are illness-specific. Final themes were and then discussed with all authors. These themes represent answers to our study objective.

Results

L-five articles were included in this review (run into Fig. 1). The majority of articles were non grounded in empirical research simply proposed models for family-centered intendance and offered practical suggestions to inform implementation (91%). Of the nine empirical studies, four articles (seven%) described randomized control trials (RCTs) and i (two%) described a pre-test, post-examination evaluation of their model. 3 of the models tested in RCTs were adult to support families at the cease of the patients' lives, with the other model focused on behavioural change as part of childhood obesity treatment. The commodity describing a pre-examination, post-exam evaluation aimed to reduce alcohol and drug use through positive peer and family influences. Another report used longitudinal experimental quantitative design to measure the bear on of their family unit-centered care model over two fourth dimension points, using t-test analysis [24]. These studies demonstrated benefits of the models including enhanced feelings of mastery and empowerment for family members in intendance planning through skill building [24,25,26].

Fig. i

Search Pick

Full size image

Two manufactures (3%) examined the feasibility of applying the concepts of family-centered models into practice. 8 articles (14%) described case studies of an implemented model that included families and children with complex medical needs in palliative and sub-acute settings with weather including HIV, cancer and stem-cell transplantations. Another described patients and families in cardiac intensive care units (CICU) after operative procedures. Nine (xvi%) articles were literature reviews on FCC that lead to the description of a single hypothetical family-centered care model, but did not review all existing FCC models. One article (2%) compared HCPs' roles in traditional models of care with their roles the family-centered model.

Out of the 55 included papers, xl (73%) were explicitly designed for pediatric care recipients. In the pediatric literature, family-centered intendance models were proposed for a variety of populations which included, but were non express to, cancer (due north = 5), AIDS/HIV (northward = iii), motor dysfunction (e.g. cerebral palsy) (north = 3), non-illness specific disabilities (n = 2), obesity (n = 3), asthma (n = 1), oral disease (i paper), trauma (n = ii), autism (due north = 1) and transplant recipients (n = 1). 18 studies did non report on a specific population. In adult populations, models accept been presented for palliative care (due north = 3), centre failure (n = 1), mental wellness (n = 1), cancer (north = ane), age-related chronic conditions (northward = one) and unspecified populations (n = viii).

Many of the family unit-centered care models have been adult for a variety of care contexts (due east.g., customs, astute care) and incorporate a variety of health care professionals. Intendance contexts included home/customs care, astute infirmary wards, emergency departments, disquisitional intendance units, inpatient rehabilitation units and palliative care units. Professionals identified in the models primarily included nurses, social workers, physicians and nutritionists. In some models, psychologists, rehabilitation therapists and chaplains likewise were included. The core elements of FCC models did not differ by diagnosis, age or care context. This suggested that some aspects of FCC models were universal. We apply the term "universal" to refer to this notion of high-level concepts that can be practical across illness populations, ages and intendance contexts. Universal and illness-specific aspects of FCC will be discussed in detail beneath.

Thematic assay revealed a universal goal of FCC models to develop and implement patient care plans within the context of families. To facilitate this aim, family-centered intendance models require: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) teaching for patients, families, and HCPs, and four) dedicated policies and procedures. Figure 2 provides a graphical overview of the key components of FCC. This figure highlights the overarching goal of FCC models and the fundamental components required to help facilitate this goal including both universal and illness-specific components.

Fig. 2

Universal Model of Family-Centered Care

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Overarching theme: family-centred intendance programme evolution and implementation

This overarching theme describes the universal goal of family unit-centered care models to develop and implement patient care plans that are created within the context of unique family situations.

All 55 models supported the development of family-centered care plans with specific short and long-term outcomes [27,28,29]. Patients, families and HCPs were considered central partners who should contribute to the description of care programme goals [30,31,32,33]. Care plans should consider the day-to-twenty-four hours means of living for patients and families [34,35,36,37,38,39,40] by encouraging the maintenance of home routines [41]. Potential goals identified included achieving family unit and patient identified functional milestones like a new motor skill (east.one thousand., running) [30]; decreasing delays or complications at infirmary discharge [42]; improving patient and family satisfaction with care [forty,41,42]; and improving caregiver support [43]. Patient involvement in intendance plans was acknowledged as provisional upon the patient's chapters to participate (information technology may exclude young children, people with illnesses affecting their cognition, etc.). From the initial diagnosis, the models championed that all members of the patients care team should elicit families' perspectives regarding priorities, families' needs and concerns, and their abilities to provide intendance [14, 29, 37, 44,45,46,47,48]. Agreement families' needs and priorities was accounted important and as contributing to realistic and better-defined outcomes [24, 45], likewise equally important to heighten families' abilities to support the programme and optimize patient outcomes [41, 49,fifty,51].

The models also emphasized that HCPs and family members should share in the implementation of the care plan. Intendance delivery should embark when everyone is in understanding with the care program [42]. It was noted that family members should be encouraged to communicate any issues or priorities they accept regarding intendance to HCPs [27, 44]. Family members of relatives who are inpatients also should be involved in discharge planning, such equally describing their concerns and ability to perform care duties [42] so as to troubleshoot and optimize care in the customs. Some models noted that care plans can be made achievable past breaking them down into smaller steps for the family unit [27]. Ane model as well hypothesized that monitoring the success of the care plan has the potential to optimize service use by bridging service gaps and eliminating any duplication of resource [52].

Model components

In add-on to the overarching theme related to intendance plan development and implementation (described above), other cardinal model components needed to facilitate family-centered care plans were identified. These encompassed collaboration and communication; educational activity and support; consideration of the family context; and the demand for policies and procedures.

Collaboration

Family-centered care models highlighted collaboration between HCPs, patients and families as cardinal in the development of intendance plans. Collaboration was noted as being required across the illness and care trajectory [53] to enhance patients' and families' abilities to maintain control over the patient'south intendance plan and delivery [54], particularly as care becomes increasingly complex [55].

Many of the family-centered care models offered some insight into how families and HCPs could work together in the delivery of care beyond the intendance trajectory. Trusting [54], caring and collaborative relationships [44] betwixt families and HCPs were identified as cardinal and efforts should be undertaken to cultivate them. In this collaborative relationship, HCPs were encouraged to relinquish their function every bit a single authorisation. Some authors even argued that families should have decision-making say-so to determine upon the part and the caste of interest of HCPs in developing care plans [28]. Attharos and colleagues [55] farther suggested that family-centered care models should have defined roles for each family member, the patient, and all involved HCPs. All roles are essential to the development of care plans [56].

Communication

Family-centered care models were thought to better facilitate communication and exchange of information and insights among family members, patients and HCPs related to the evolution and delivery of intendance plans [54]. One model suggested that clinicians should offer intendance options and patients and families should abet for patient preferences and family values [57]. The exchange of information was encouraged to be open, timely, complete and objective [27, 55].

The models encouraged HCPs to use a diversity of strategies to communicate with and support caregivers and patients, including interdisciplinary care and diagnostic reports, community follow-up in-person or by virtual meetings, and resource notebooks listing community supports to help care for the patient [29]. HCPs were also encouraged to communicate illness-specific information to help patients and family members make accordingly-informed disease-related decisions [32, 39, 57].

Instruction

Education about care provision and the disease was deemed necessary to enable family-centered care. Education was typically approached from the concept of common learning, whereby patients, family members and HCPs all learn and support each other [38, 54]. In general, models advocated for training of HCPs to effectively elicit information and communicate with patients and family members. This was thought to decrease anxiety and increase control for patients and caregivers [14, 32, 58, 59].

Various researchers posited ways to all-time provide education about the illness and care provision to patients and families. Connor [sixty] suggested that written information, describing the family-centered approach to care should exist provided to patients and caregivers. Further, all information should be presented at a linguistic communication level that is understandable to the family and patient [42, 43, sixty], which means minimizing technical (e.g., medical) jargon [59].

Pedagogy was though to exist ongoing, meaning that information technology often doesn't end when a patient is discharged from an inpatient setting. Models highlighted a need to constitute methods to continue educating caregivers across inpatient intendance [49], such every bit past providing the patient and family unit with a follow–upwardly intendance programme later on belch and possibly follow-up contact by HCPs [33]. Accordingly communicated education is believed to foster a sense of trust [42] and help patients and family unit members become more knowledgeable. Equally a result, patients and families were thought to become more than contained in making informed handling decisions [14, 35, 37].

Some models noted that patients and their family unit members observe it helpful to learn from other patients and caregiver peers [32]. Peer sharing of mutually supportive resources and other experiences related to living with an illness or providing care can serve as an of import means of improving noesis most back up resources [32] and enhancing emotional support [sixty, 61]. This was idea to be possible as part of family centered care models by care teams helping to cultivate friendships and general peer back up with other families in similar caregiving situations (for instance, those caring for care recipients with the same affliction). Other mechanisms to offer peer support could include patient and caregiver back up groups, workshops, group retreat trips, and shared respite care [14].

Family unit support needs

Family members may experience a negative impact on their ain well-being as role of the ongoing demands of caregiving. Recognizing that families are oft psychologically stressed and can take difficulties coping [59], family-centered intendance models emphasized support for family unit members' well-being [62]. Supporting families oftentimes included emotional back up and providing education and training on care delivery that takes into account caregiver needs and preferences. Family-centered models acknowledge that caregivers are experts in matters concerned with their own well-beingness [47]. HCPs were idea to support caregivers' by providing education to foster caregivers' confidence in their ability to provide care and develop care plans.

Family-centered intendance models emphasized that care recipients function best in a supportive family environment [41]. Identifying the impact of the disease on the patient and the family is crucial to providing emotional support [42]. At a minimum, information about support needs should be gathered from both patient and family unit [63]. Particularly in pediatric patient populations, authors spoke of identifying types of back up that are based on the patient'southward developmental capacities [64] and needs, while also taking into consideration the social context of the patient and family's life [48]. Back up needs can be determined through well-designed, semi-structured activities, including questionnaires [48] and discussions with the family.

Health systems utilizing a family-centered care model were idea to assist sustain caregivers by providing them with resources to support their caregiving activities [65]. Goetz and Caron [49] country that organizational support should brand existing health service community resource more family-centered by considering the family in all aspects of program delivery. Topics that need to be addressed by services offered to family unit members included, mental health, home intendance, insurance/financing, transportation, public wellness, housing, vocational services, education and social services [13].

Consideration of family unit context

Family was conceptualized in different ways across models. For example, some models described including the family unit-as-a-whole (every family member, not just those that provide care) [63, 64], whereas others described the family as those who provide care [44]. Authors highlighted that families accept 'the ultimate responsibility' [63] and should have a abiding presence throughout the care and illness trajectory [sixty]. Consistently across family unit-centered care models, families were seen as vital members of the care team [38] who provide emotional, physical, and instrumental levels of support to the patient [32, 54].

Family strengths

Iii of the models underscored that family-centered care is based on a conventionalities that all families have unique strengths that should be identified, enhanced, and utilized [41, 53, 66]. Models identified various examples of family strengths in care delivery including resilience [41], coping strategies [58], competence and skill in providing care [25, 26] and motivation [49]. None of the models discussed how these strengths would be identified when implementing family centered care. 3 of the models stated that family-centered intendance should continuously encourage caregivers to utilize these strengths [53, 57, 64] although specific examples of how to exercise then were not included. Identifying areas of weakness that may require education and preparation was not discussed in the models.

Cultural values

Families were thought to contribute to a culturally sensitive intendance plan by discussing their specific cultural needs, every bit well as their strengths related to personal values, preferences and ideas. Caregivers' social, religious, and/or cultural backgrounds tin influence the provision of care to their family fellow member [29, 49, 57, 58]. One model suggested that HCPs need to elicit data almost families' behavior [26] to help guide culturally sensitive care plans (due east.g. religious participation). The process by which this would occur was not discussed in detail.

Dedicated policies and procedures to back up implementation

To support implementation, family unit-centered care models should have dedicated policies and procedures that are also transparent [56, 67, 68]. Both the macro and micro levels of guild need to exist considered when trying to implement family-centered practices [thirteen]. Perrin and colleagues [thirteen] described macro level issues equally including government policies and agencies (e.m., national, provincial, municipal), while micro level factors include customs service systems (e.g., physicians, other HCPs, schools, public transportation, etc.). Examples of macro-level considerations include incorporating families in nation-wide policy making and program development [29, 53, 56, 60]. Micro-level considerations include incorporating family members and patients in determination-making for local community organizations [69], the implementation of health programs and care policies at regional hospitals, every bit well as in HCP teaching [29].

Family-centered care policies were identified equally of import as they legitimize and back up families' contributions to the care of their family member. For example, in pediatrics, Regan and colleagues [39] suggested changing policy to open visitation hours to increase family members' roles as partners in intendance. This could increase the number of interactions between HCPs, patients and families, and, every bit a result, further support caregivers in their caring part [24].

Family-centered care models also noted the importance of considering the physical surround when developing policies and practices. The physical surroundings of care settings should be created and tailored to come across the needs of patients and families [54], although concreate examples were non provided. Both the patient and family should be included in the development and evaluation of facility blueprint [29], where possible, likewise as modifications to the home environs.

Give-and-take

The purpose of this scoping review was to identify cadre components of family-centered intendance models and to identify components that are universal and can be practical across care populations. This paper too aimed to place gaps in the literature to provide recommendations for time to come research. Most models were developed for pediatric populations with a number of models emerging for the care of adult populations. The synthesis suggests that there are core components of family unit-centered care models that were not unique to specific illness populations or care contexts making them applicable across diverse health conditions and experiences. From a theoretical perspective, our review adds to our understanding of how FCC is conceptualized within the current country of the literature and suggests the possibility of moving towards a universal model of FCC. This includes developing a care plan with defined outcomes and that incorporates patient and family perspectives and their unique characteristics. This also includes collaboration between HCPs and family members and flexible policies and procedures. However, there were some aspects of models that were specific to illness populations such as affliction-specific patient and family education.

Currently, person-centered intendance is considered best practise for improving intendance and outcomes for many illness populations. Patient-centered care has been described as being "respectful of and responsive to private patient preferences, needs and values, and ensuring that patient values guide all clinical decisions" [70]. Person-centered intendance involves: acknowledging the individuality of persons in all aspects of care, and personalizing care and environs; offering shared decision making; interpreting behavior from the person'due south viewpoint; and prioritizing relationships to the aforementioned extent as intendance tasks [71]. Aspects of patient and person-centered care were identified equally key components of family unit-centered care models including focusing on patient and family values, preferences and needs, related to their own circumstances and family unit contexts. In addition, this review identified specific components that go across patient-centered intendance that are required to accost the needs of families including focusing on respectful communication to facilitate the necessary patient/family unit-professional partnerships and collaboration needed to develop and implement care plans. Moreover, there is the need for the patient/family unit-professional partnerships to respect the strengths, cultures and expertise that all members of this partnership bring to the evolution and delivery of care plans.

Implementation of affliction-specific models of intendance for multiple different illnesses may be challenging for health care systems. Every bit many individuals live with multi-morbidity, a non-disease specific family-centered care model may meet the needs of more than individuals [72]. Yet, in that location is a lack of discussion in the literature of physical strategies to help implement the fundamental concepts identified in our review. Moreover, the enquiry on implementing FCC models in real world situations is scant. In club to encourage changes in health care systems there is a demand for evidence that the concepts of FCC lead to improvements.

This review identified aspects of family unit-centered intendance that are illness-specific. Affliction-specific pedagogy and support is required at each stage of the disease recognizing differences in illness trajectories across patient populations [73]. Currently, the models are described with static concepts that are not reflective of ongoing and irresolute illness trajectories. Providing illness-specific intendance, communication, and data that is sensitive to their place in the illness trajectory may greatly influence caregivers' capacity to back up the care recipient. Further inquiry is needed to understand how family-centered care may evolve across the illness and care trajectory.

More research is needed to raise the potential of a universal family unit-centered intendance model that crosses age groups, conditions, and care settings. For instance, in the current models of FCC, there is not consequent definition of what constitutes the family. In the pediatric literature the family primarily includes the parents of the kid, but does not ordinarily include siblings or extended family unit members who may be providing intendance. Moreover, current FCC models neglect to address conflict and mediation for circumstances where in that location is the potential for family members to disagree with one another, with the patient or with the HCPs regarding care plans or other aspects of care.

As many of the models were developed for pediatric populations, they fail to admit aspects such as privacy issues and cognitive chapters. These issues become relevant as we consider models of care for adult populations. In instances where patients' cognitive chapters influences their power to participate in decision-making, family caregivers become agile contributors to care programme evolution and implementation. Caregivers can benefit from having access to patients' medical information to contribute to handling decision making and inform care and service use. Current privacy legislation does not automatically requite families access to relevant data. Future research should explore developed patients' preferences for family unit members to accept admission to their medical records, as their preferences volition influence the management of privacy in models of FCC.

Lastly, the articles included in this review were primarily descriptive and not evaluative. Evaluations are needed to demonstrate the benefit of FCC to patient, caregiver and health system outcomes. Potential evaluation outcomes can include satisfaction with care, improvements in patient health and caregiver health and stress, and efficient utilise of health services. There should be consensus regarding outcome measures to be used when evaluating FCC models to enhance our ability to compare across models. Model evaluation is needed to provide empirical evidence to support or refuse the concepts of FCC in both universal and illness-specific contexts. Moreover, nosotros need methods to assess implementation of FCC in practice. For example, measures to assess the family-centered nature of care are existence developed [24,25,26]. The review suggests we may demand new assessment tools to assess, for example, family strengths.

Concrete steps are needed to implement a universal FCC care model into practice. While we accept defined the components of a model, we have too highlighted additional empirical research that is needed to further ascertain model components in real-world settings, within and across various care contexts and illness populations. In item, we recommend the testing of our universal model in the context of a randomized control trial (RCT).

Lastly, we recommend the development of outcomes measures to decide if FCC leads to improvements in patient and family unit satisfaction, mental and physical health outcomes, enhanced efficiency, health system utilization (due east.k., decreased length of hospital stay or return hospital visits), customs reintegration and cost-effectiveness. Of import outcomes should relate to families, patients of all ages and health care professionals. Consequence measures related to health care professionals may include enhanced comfort working with families and patients. Valid and reliable measures are essential for the evaluation of a model'south effectiveness and to translate FCC models into practice.

Study limitations

This scoping review is not without limitations. Merely published, English language manufactures were included, thus excluding other models that may exist in other languages. This may have also express models to those that were developed and/or tested in predominantly English language-speaking counties. We likewise did not explore grey literature, limiting our models to only those that underwent peer review. Many of the included models were designed for the pediatric population, so findings have express awarding to adult populations.

Decision

This paper used an established scoping review methodology to synthesize 55 models of family unit-centered intendance. We were able to make up one's mind the universal components of the models that place both the patient and family unit at the center of intendance, regardless of the patient'south illness or care context. Findings outline aspects of FCC that are universal and aspects that are disease specific. Universal aspects include collaboration between family unit members and health intendance providers to ascertain care plans that take into consideration the family contexts. It also includes the need for flexible policies and procedures and the need for patient, family unit, and health care professional instruction. Non-universal aspects include illness-specific patient and family unit education. Futurity research should evaluate the ability of FCC to ameliorate important patient, family, caregiver, and wellness system outcomes. Health care policies and procedures are needed that contain FCC to create system level change. Our review moves the field of FCC forward by identifying the universal and illness-specific model components that tin can inform model development, testing, and implementation. Advancing FCC has the potential to optimize outcomes for patients, families, and caregivers.

Availability of data and materials

Not applicable.

Abbreviations

FCC:

Family-centered care

HCPs:

Health care professionals

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Acknowledgements

G. Naglie is supported by the George, Margaret and Gary Hunt Family Chair in Geriatric Medicine, University of Toronto.

We would like to thank and acknowledge the contributions of Jessica Babineau, Information Specialist at the Toronto Rehabilitation Institute - University Health Network, for providing guidance on the search strategy development, and conducting the literature search.

Nosotros would like to thank and admit the contributions of Jazmine Que. and John Nguyen, Masters of Occupational Therapy Students- The University of Toronto, for reviewing subsets of the retrieved manufactures and extracted study data.

Author information

Affiliations

1. Rehabilitation Sciences Institute, Faculty of Medicine, University of Toronto, 500 University Avenue, Suite 160, Toronto, ON, Canada

   Kristina One thousand. Kokorelias & Jill I. Cameron

2. Dalla Lana School of Public Health, Institute for Work and Health, Academy of Toronto, 481 University Artery, Suite 800, Toronto, ON, Canada

   Monique A. M. Gignac

3. Department of Medicine and Institute of Health Policy, Management and Evaluation, University of Toronto, 3560 Bathurst Street, Room 278, Kimel Family Building, Toronto, ON, Canada

   Gary Naglie

4. Department of Medicine, and Affiliated Scientist, Rotman Inquiry Institute, Baycrest Health Sciences, 3560 Bathurst Street, Room 278, Kimel Family Building, Toronto, ON, Canada

   Gary Naglie

5. Department of Occupational Science and Occupational Therapy, Rehabilitation Sciences Found, Faculty of Medicine, University of Toronto, 500 University Avenue, Suite 160, Toronto, ON, Canada

   Jill I. Cameron

Contributions

KMK and JIC conceptualised and designed the written report. KMK, JIC, GN and MAMG contributed to the interpretation of the data and to the drafting of the initial and revised manuscripts. All authors read and approved the last manuscript.

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Correspondence to Jill I. Cameron.

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Kokorelias, K.M., Gignac, One thousand.A.M., Naglie, Thou. et al. Towards a universal model of family centered care: a scoping review. BMC Health Serv Res 19, 564 (2019). https://doi.org/x.1186/s12913-019-4394-v

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• Received: xiv February 2019

• Accepted: 01 August 2019

• Published: 13 August 2019

• DOI : https://doi.org/ten.1186/s12913-019-4394-5

Keywords

• Caregivers
• Family centered care
• Family caregiving
• Patient-intendance
• Patient educational activity
• Scoping review

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