Family-centered care: addressing challenges and implementing countermeasures in response to novel coronavirus pneumonia prevention and control—a narrative review

Introduction

Since its introduction, the family-centered care (FCC) model has been widely used in the care of various diseases as a mutually beneficial approach to health care, especially in pediatrics, where it has an irreplaceable role (1-3). The pandemic of coronavirus disease 2019 (COVID-19) has resulted in an unprecedented challenge to the FCC model.

This review aims to explore the current state of research on and factors influencing the family-centered clinical model of care, and to reveal the challenges and coping strategies encountered by this model in NCP-like health crises. This review also aims to provide recommendations on how to transform the family-centered clinical care model to effectively respond to declared health emergencies. We present this article in accordance with the Narrative Review reporting checklist (available at https://jtd.amegroups.com/article/view/10.21037/jtd-24-960/rc).

Methods

Search strategy

Databases searched for this review included PubMed/MEDLINE, CINAHL, Embase, Cochrane Library, Web of Science and Scopus. The timeframe for the search was from January 01, 1900 to August 30, 2024. The search was conducted using the following terms. Search terms were (“patient- and family-centered care” OR “patient-centered care” OR “family -centered care” OR ((patient- OR person- OR client- OR relationship- OR family- OR resident-) COMBINED WITH (cent*red OR focused)) OR (individuali* OR personali*)) AND (COVID-19 OR Novel Coronavirus Pneumonia). In addition to this, a literature tracing method was used to refine the search results. The search strategy is shown in Table 1.

Inclusion and exclusion criteria

Inclusion criteria: (I) study subjects were irrespective of age, gender, environment, and health status; (II) theme was “family-centered care model” or “family-centered care model and COVID-19”; (III) literature included meta-analysis, guidelines, expert opinion, expert consensus, evidence summaries, reviews, clinical nursing practice, and case-control studies. Exclusion criteria: (I) low quality of literature; (II) duplicate publication of literature; (III) missing content of literature.

Study selection

The retrieved literature was entered into EndNote software, and duplicates were deleted. One of the authors (Y.D.) screened the literature according to the inclusion and exclusion criteria by first reading the titles and abstracts of the articles, and then reading the original articles for further screening. The results of the relevant reviews were checked and decided by a senior researcher (H.J.). We list the important literature mentioned in the sub-topics in Table 2.

Concept and historical progression of FCC

FCC traces its roots back to the 19th century within children’s hospitals established in major cities worldwide. These hospitals, grappling with healthcare worker shortages, permitted mothers to remain at the bedside of their hospitalized children to provide care (1,2). Early pioneers like John Bowlby in the early 1900s demonstrated the advantages of the mother-child model for the mental health of hospitalized children (3). In 1987, the Association for the Care of Children’s Health (ACCH) published the first multidisciplinary definition of FCC, outlining its various elements (4). Subsequently, in 1992, the Institute for Patient and Family-Centered Care (IPFCC) emerged in the United States offering substantial resources to healthcare providers. The IPFCC defined FCC as “an approach to healthcare planning, delivery, and evaluation based on a mutually beneficial partnership among healthcare providers, patients, and families (5)”. The primary objective of the FCC model is to establish standards of care and recommendations for the healthcare team that encompass the entire family, rather than focusing solely on the individual (6). Its fundamental principles include dignity and respect, information sharing, participation, and collaboration (7).

As the FCC model gains momentum and refinement, it has evolved into the standard for delivering healthcare services, surpassing mere policies and procedures. This enables its integration into diverse healthcare settings, regardless of hospital protocols, and allows for adaptation within existing healthcare frameworks (8).

Development and application areas of FCC

Kokorelias et al. (9) conducted a comprehensive review of available English-language literature on the FCC model from 1990 to August 1, 2018. They identified a variety of FCC initiatives tailored for pediatric patients, encompassing conditions such as cancer, acquired immunodeficiency syndrome (AIDS), motor dysfunction, obesity, asthma, oral disease, trauma, autism, and organ transplant recipients. For the adult population, models were proposed for palliative care, heart failure, mental health, cancer, and age-related chronic diseases. The principal components highlighted for the enhancement of FCC across these studies include: (I) fostering collaboration between family members and healthcare providers; (II) considering the home environment in care planning; (III) establishing FCC policies and procedures; and (IV) providing patient and family education in healthcare professions. These components were implemented through various methods such as family meetings, family-centered visits, and involving families in care decisions.

Assessment and measurement tools of FCC

Utilizing valid and reliable tools to assess clinical programs and research is crucial to ensuring the effective integration of FCC principles into nursing practice. One such tool is the Family Centered Care Assessment (FCCA) developed in 2015 by Advocates for Family Medicine of American civil society, experts from the American Academy of Pediatrics, and the Maternal and Child Health Bureau (10). The FCCA is specifically designed for parents to evaluate healthcare services with respect to FCC. It comprises of 24 items that address various aspects, including communication with family members, decision-making interactions, family direction and planning, a strength-based approach to care, care coordination, culturally and linguistically competent care, supportive practice structures and policies for FCC, and family support. This scale currently stands as the most comprehensive assessment tool available for evaluating FCC practices.

In addition, specific tools have been developed for assessing FCC scale in different healthcare settings. Curley et al. (11) developed the FCC scale for pediatric acute care nursing (also known as the FCC scale for pediatric acute care nursing) for inpatient care, while Jafarpoor et al. (12) introduced the FCC-ICU scale, specifically tailored to measure the implementation of FCC in the intensive care unit (ICU) setting. The Pediatric Transition Experience Measure (P-TEM), developed by Desai et al. focuses on the processes and outcomes of FCC. These tools offer valuable means for assessing and improving FCC practices in diverse healthcare environments (13).

Economic benefits of FCC

An economic evaluation conducted by Rasmussen et al. (14) found that neonatal tele-home care was economically favorable compared to hospital care, while family involvement in care has been shown to shorten hospital stays thereby saving health care costs and reducing pressure on payers (15). Mancuso et al. (16) rehabilitation interventions in FCC for neuropsychological rehabilitation of patients with post-stroke language disorders have varying degrees of cost-effectiveness, resulting in significant cost savings and health benefits.

Gaps in clinical implementation of the FCC

Willingness of family members to participate in care and barriers faced

Lack of effective communication and information sharing

A study by Mackie et al. (17) suggests that the majority of patients and their family members perceive communication from healthcare professionals as fragmented and inadequate, leading to hindrances in their engagement in the care process and decision-making. The primary factors contributing to barriers in effective communication and information sharing include: (I) lack of initiative in providing information by healthcare professionals: Ågård et al. (18) observed that when doctors or nurses did not promptly provide information, family members felt compelled to seek it themselves. The absence of proactive information shared by healthcare professionals was identified as significant barrier in healthcare information provision; (II) language barriers: An analysis of the survey by Sigurdson et al. (19) revealed that immigrant families and low socio-economic families perceived inconsistent access to high-quality interpreter services in neonatal intensive care unit (NICU) wards; (III) utilization of medical terminology: Scannell et al. (20) demonstrated that a lack of comprehension of medical terminology was one of the primary causes of miscommunication between healthcare providers and a considerable concern for family members.

Lack of trust

Studies have indicated that family members assess the competencies of clinical staff based on two primary domains (18,19): professional skills and interpersonal skills. Interpersonal skills encompass FCC principles such as compassion, emotional support, empathy, personalized patient care, recognition of patient and family values, and treating patients and families with dignity and respect. A breakdown in trust occurs when family members perceive the lack of respect and equality in their treatment. Miscommunication from NICU healthcare staff, as described by Sigurdson et al. (19), led to some families feeling unwelcome. This perception created significant obstacles to parental engagement in care, particularly when the dislike was perceived as stemming from socio-economically or racially biased attitudes.

Role of stress

The impact of illness on family members can induce significant stress in their lives encompassing both financial strains and psychological burdens. Family members may grapple with a spectrum of negative emotions as they navigate their own challenges alongside those of their loved ones (21). For instance, the admission of a patient to a hospital or medical facility due to a sudden deterioration in their condition can provoke feelings of anxiety, fatigue, and bewilderment among family members (22). Even during the initial phases of Parkinson’s disease progression, family dynamics may be disrupted by the necessity of adapting family roles to accommodate the changing functional abilities of the patient (23,24). Delays in addressing these changes linked to the disease can impact the well-being of family members. Moreover, families of children with autism may encounter difficulties in adapting to their evolving needs, influenced by cultural factors. This can lead to feelings of isolation and a defensive stance due to cultural rejection and social stigma, hindering their engagement in family activities and outings (25).

Lack of shared decision-making power

Family group decision-making (FGDM) constitutes a structured process designed to delegate decision-making authority from professionals to individuals in need and their families (26). Despite the involvement of patients and families in the decision-making process, these meetings often fail to empower them as primary decision makers (27). Huang et al. (28) identified that the primary source of conflict between patients with mild dementia and their family caregivers in healthcare decision-making stems from the inadequate understanding of the disease progression by family members. Alves et al. (29) underscored that negative interpersonal encounters within the mental health care system impede the participation of mentally ill patients and their families in decision-making processes.

The unequal distribution of decision-making authority within families influenced by cultural background also significantly impacts participation in FCC. Fernandez et al. (30) demonstrated that Latino cultural values such as familism and respect play a crucial role in shaping the involvement of families in health decision-making. Moreover, demonstration of obedience by adult children to their parents—filial piety—can significantly influence their selection of healthcare services. In many East Asian families, traditional gender roles assign men as the primary family authority, granting them greater decision-making power compared to women (31).

Impact on nurses’ implementation of FCC

Nurses’ education and work experience

Disparities in nursing education have notable implications for the implementation of FCC (18,32). According to the survey conducted by Ågård et al. (18) across ICU settings in four Nordic countries (Norway, Denmark, Sweden, and Finland), nurses who actively advocated for FCC generally possessed higher levels of education. Moreover, nurses with greater clinical experience tended to exhibit more favorable perceptions (33) of and engagement (33-35) in FCC. Specifically, those with longer tenures in the hospital sector tended to regard working with families in a more positive light compared to their less experienced counterparts (34,35).

Organizational support level for FCC

Other studies (36-38) revealed that verbal endorsement of the FCC managers alone, without concurrent provision of human and material resources to support it, is the primary obstacle preventing nurses from effectively implementing FCC. An inadequate work environment characterized by nurse shortages, heavy workloads, and a high nurse-to-patient ratio, exacerbates this challenge (36,38). Insufficient guidelines encompass various aspects, including the absence of reinforcement for positive FCC behavior, inadequate policy tools to promote FCC, and inadequate policies facilitating communication between families and patients throughout their hospital stay from admission to discharge (36,38). Despite nurses comprising the largest proportion of healthcare professionals, their impact on organizational decision-making has been limited, largely due to the perception of nurses primarily as practitioners rather than decision-makers (36).

Culture conflict

The introduction of the FCC theory from Western societies into other countries has sparked cultural conflicts. For instance, the traditional Korean concept of healthcare professionals as authorities in the medical environment deeply rooted in Confucian culture, has been challenged during the transition from the medical model to the FCC model (25). Similarly, countries like Iran and Saudi Arabia have encountered obstacles in adopting FCC due to cultural disparities (37,38). Furthermore, the prevailing team organization culture among healthcare professionals plays a significant role in determining the prevalence of FCC. In Thailand, nurses often perceive FCC as relevant only to educated family members (36). In China community nurses find themselves heavily burdened with paperwork and the prevailing disease-and-task-performance-oriented healthcare culture undermines their ability to implement FCC effectively (39).

Impact on FCC during NCP prevention and control

Ethical dilemma and crisis of trust

On March 11, 2020, the World Health Organization (WHO) declared the COVID-19 virus a pandemic, marking the onset of a global effort to prevent and control the novel coronavirus pneumonia (NCP) (40). Throughout this protracted struggle, the implementation of FCC encountered numerous challenges. A survey encompassing hospitals from 22 countries revealed that prior to the COVID-19 pandemic, 87% of hospitals embraced family involvement in care, with 92% actively promoting FCC (41). However, during the pandemic 83% of hospitals restricted family involvement, with 32% imposing limitations on family participation in infant care. Alarmingly only 16% of units reported an increase in psychosocial support for parents and primary caregivers. Research indicates that families are susceptible to post-intensive care syndrome-family (PICS-F) when they encounter barriers such as poor communication with the ICU team, limited involvement in decision-making, low education level of family members, or the loss of a loved one (42). Amidst this significant public health crisis, bereaved families often experience a profound sense of loss compounded by the absence of communication, visitation, and farewell ceremonies following the passing of a patient admitted to the ICU. This circumstance can engender deep-seated feelings of mistrust, potentially leading to complex grief reactions such as anxiety and depression (43,44), as well as the risk of developing post-traumatic stress disorder (PTSD) (44-47).

Human resource barriers

The COVID-19 pandemic has not only caused a shortage of medical resources within healthcare organizations but has also imposed a heavy burden on human resources, contributing to heightened stress levels (48-50). Many nurses perceive FCC as secondary in their nursing practice with their primary focus being on the demanding responsibilities of clinical care. This prioritization of clinical tasks can deplete nurses’ self-regulatory resources resulting in physical and emotional exhaustion, which may impede their ability to effectively support families (46). The pandemic has further exacerbated this perception primarily due to the limited time available for nurses to engage in collaboration and communication with families, as well as the heightened fear of contracting and transmitting the disease amidst the overwhelming workload during the epidemic (48,49).

Barriers to telehealth

Amidst the prevention and control of NCP, telemedicine and other telehealth models have experienced unprecedented adoption and advancement (51-54). Telemedicine technology has emerged as indispensable for realizing FCC due to its convenience, affordability, ability to reduce unnecessary travel, and facilitation of communication with families. Nonetheless, the absence of a structured framework for the telehealth model poses a challenge to their effective implementation. Surveys highlight several obstacles to the adoption of telemedicine technology including the expense associated with acquiring technology and equipment, challenges in equipment management, and the absence of reimbursement policies (55-59). Additionally, concerns regarding security, privacy, and confidentiality have been expressed by patients, healthcare providers and regulatory authorities (60). A significant hurdle in telemedicine lies in establishing and sustaining a trustworthy, genuine, and efficacious patient-care relationship solely through digital interfaces via voice and text communication (60,61).

Response strategies to promote FCC

Strengthen communication and information provision

Strategies aimed at improving communication and information provision during the prevention and control of NCP include: (I) ensuring clarity in visitation policies: hospitals need to ensure that the visitation system is clearly explained to the family members to mitigate misunderstanding (62,63). It is crucial for healthcare facilities to communicate to the public that any policies restricting family visitation should be uniformly applied across all demographics, irrespective of race, ethnicity, socio-economic status, culture, or religion. Emphasizing community protection, facility policies, and strategies to promote FCC can enhance public acceptance of restrictive visitation policies. (II) Leveraging digital technology: encouraging caregivers to use cell phones for capturing photos and videos of patients, particularly babies, and sharing them with families can facilitate communication (41,54,64). Promoting online visits and video calls through diaries along with conducting medical checkups and multidisciplinary consultations online can help keep families informed about the condition of the patient on a daily basis. (III) Implementing flexible visitation systems: adapting the visiting system according to the prevailing epidemic situation is essential. The results of a study revealed that when family members adhere to effective use of personal protective equipment under the supervision of healthcare professionals and visit the patient at the designated appointment times, visitation can be safely facilitated (65).

Rational assessment of family members’ ability to collaborate in care

Nurses are tasked with evaluating the abilities and requirements of individual family members when collaborating with them, considering varying levels of health literacy and basic knowledge. Acknowledging the significance of bridging knowledge gaps is crucial for the improvement of FCC and the advocacy for its implementation (66). A study by Chien et al. (67) using a questionnaire to assess the ability and knowledge of family members to care for infants with congenital heart disease at home during the COVID-19 pandemic, and adjusting the nursing education program in a timely manner to improve the learning outcomes of family care for infants by using cloud-based technology care. Accurately assessing collaborative care skills of families post-education and promptly addressing errors can significantly increase their motivation to participate in FCC and provide support during the transition from hospital discharge to home care. Additionally, a study by Fiest et al. (66) demonstrated the feasibility of family members testing patients for delirium following health education, though diagnostic accuracy is lower compared to delirium screening and clinical assessment in ICU settings. Therefore, further investigation is necessary to explore the involvement of families in empowering FCC rather than opting for complete disengagement.

Emotional and social support

Family members and support staff of patients in the ICU often undergo a spectrum of psychological challenges, including anxiety, PTSD, and depressive symptoms during the intensive care phase of the patient, referred to as PICS-F (68). The primary objective of psychosocial care in FCC is to enhance the emotional resilience of patients and their families (69). Currently, clinical emotional support methods primarily include clinical nurse-led support, peer support, and hospital-established family support teams. (I) Clinical nurse-led support: this aspect holds particular significance as clinical nurses who maintain the most frequent contact with family members are tasked with promptly assessing their emotions and referring them to appropriate professional psychological counseling (70). Collaboration between nurses in ICUs and NICUs with psychologists and social workers is crucial in providing consistent emotional support to family members experiencing stress syndromes (71,72). (II) Peer support: research has demonstrated the efficacy of peer support strategies in reducing PICS-F symptoms in families of ICU survivors (20,72). Sharing experiences of critical illness and recovery fosters interpersonal relationships and empathy, thereby contributing to an improved cultural climate in the ICU and reinforcing FCC principles. (III) Hospital-established family support teams: these teams play a vital role during the prevention and control of diseases like COVID-19. Tasked with assisting family members and loved ones of critically ill COVID-19-positive patients, they help manage challenges and address stress, anxiety, and grief. They offer comprehensive psychosocial support, referral resources, implement family connection strategies, and provide bereavement care (73,74).

Limitations

We searched only for articles published in English, which means that we did not consider publications in other languages as well as all papers, conference proceedings and trial registries, which may have led to the omission of some evidence. In addition, the research findings presented in this review are inevitably limited by the quality of the literature included. In addition, the concept of FCC has been expanding and evolving, and the literature searched covered a variety of participants, settings, purposes, and strategies, which makes the summary of the content of each subheading in this review more general and difficult to refine.

Conclusions

The evolution of FCC which spans more than a century signifies a transition from the authoritarian approach of traditional healthcare to a more humane and collaborative model. However, the emergence of the NCP model for prevention and control during the COVID-19 epidemic has posed significant challenges to the implementation and advancement of FCC. During periods of crisis, the unity within families and the collaboration between families and healthcare providers become increasingly crucial. It is during these trying times that the resilience and expertise of healthcare professionals are tested as they seek solutions to navigate these challenges. In the battle against this epidemic, the telemedicine model has emerged as holding promising long-term development prospects. The integration of the telemedicine model with FCC is seen as the future direction for the advancement of FCC.

Acknowledgments

We would like to acknowledge the hard and dedicated work of all the staff that implemented the intervention and evaluation components of the study.

Funding: None.

Footnote

Reporting Checklist: The authors have completed the Narrative Review reporting checklist. Available at https://jtd.amegroups.com/article/view/10.21037/jtd-24-960/rc

Peer Review File: Available at https://jtd.amegroups.com/article/view/10.21037/jtd-24-960/prf

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://jtd.amegroups.com/article/view/10.21037/jtd-24-960/coif). The authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This study is a narrative review and does not require ethical approval or informed consent from participants.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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