By Fayaz Ahmad Paul
Family-centered care is threatened during the pandemic the participation of family members in a manner that allows families, patients, and the health-care team to collaborate is the core of family-centered care. Strategies for delivering family-centered care typically include open family presence at the bedsides regular, structured communication with family members; and multidisciplinary support. These prepare family members for decision making and care giving roles, with the goal of reducing family members’ experiences of anxiety, depression, and posttraumatic stress after hospitalization. Family-centered care is desired by patients and families, may improve their outcomes, and may also reduce burnout and moral distress among clinicians.
Large-scale disasters intensify stressors and basic human needs to feel safe, connected, calm, useful, and hopeful infectious disease outbreaks make proximity dangerous. Physical, or social, distancing is the principal mitigation strategy used to reduce transmission in the pandemic, with a profound impact on the delivery of family centered inpatient care. Health-care systems must severely restrict or eliminate family presence for all patients, to protect the health of patients, family members, and workers. Restrictions on family presence should not undermine adherence to the principles of family-centered care. Defining patients’ goals of care is a priority during the pandemic and typically necessitates family engagement. Therefore, it is essential to rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence.
The goals of family-centered care during physical distancing remain the same and are focused on respecting the role of family members as care partners, collaboration between family members and the health-care team, and maintenance of family integrity. The pandemic necessitates that efforts to meet these goals adapt to a rapidly changing clinical culture. Family-centered care has primarily relied on family members’ physical presence at the bedside to promote trust, communication, involvement in caretaking, and shared decision-making.
During the pandemic, family presence must be supported in non physical ways to achieve the goals of family centered care. In this pandemic, as in prior infectious outbreaks, governments, health-care systems, and individual clinicians change their typical practices to focus on public health rather than individuals’ outcomes. Clinicians may also be performing unfamiliar duties, including learning new clinical procedures and providing care in novel spaces with newly formed teams. Family centered care strategies in this context must acknowledge the changed ethical perspective and clinicians’ limited time, attention, and effort to devote to learning and assimilation. Strategies to support family presence during physical distancing rely heavily on existing patient or family smart phones, computers and technological literacy. These strategies are likely to cause differential access to family-centered care. In the Developed countries like America, England France, Germany Japan where majority of the population reports use of the internet or a smart phone, there are wide racial and socio economic disparities in access to computers and broadband internet. Therefore, the use of technology-heavy family- centered care strategies requires assessing individual families’ access to these resources and devising ways to overcome these potential barriers to avoid worsening existing health disparities.
Despite the need for physical distancing, permitting limited family presence at the bedside may be necessary for the protection and safety of the patient or to maintain family integrity. For example, physical family presence should be supported when possible for pediatric patients, laboring or postpartum patients, and people with severe neuro cognitive disability or who are nearing the end of life. Exceptions allowing for physical presence should be clearly defined and communicated to clinicians, families, and patients. The delivery of family-centered care begins at entry to the health system. The patient and family should receive an explanation of any restrictive policies that limit the physical presence of family members. As families often have limited face-to-face contact at the point of entry, a public-facing website should provide additional information. The explanation of the policy should include rationale and the use of language and tone that seek to defuse and avoid conflict. The Public facing material should also empower patients and families to anticipate and prepare for next steps. The website should also link to community resources, free or low-cost public internet programs, and information about the health system’s preferred communication platforms. Finally, hospitals should provide a mechanism for delivery of essential items to the patient, such as glasses, phone chargers, and advance directives.
Delivery of family-centered care may require reinterpreting or reinventing roles within the multidisciplinary team as clinical staff become a scarce resource. Medical, nursing, or Psychiatric social work students removed from clinical rotations may be able to provide skilled support while advancing their own education and skills. Students can virtually visit families and patients to promote coping strategies, coordinate engagement efforts, and stream line communication with the clinical team. In addition, the health-care system should leverage partnerships with community organizations to collaboratively assist family members. Proactive outreach to community partners about policies limiting family presence may alleviate health-care system stress as the need for supportive care increases.
Family-centered care is more, not less, important during a pandemic. Physical distancing requires nimble adaptation of standard practices. Innovative approaches that involve family members in inpatient care during the pandemic may lead to long-lasting progress in, rather than regression from, the standards of family-centered care the health-care community has recently achieved.
Fayaz Ahmad Paul is a Research Scholar , Department of Psychiatry Government Medical College and Hospital.