Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

Abstract

Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying.

How the COVID-19 pandemic has reaffirmed the priorities for end-of-life care in critical care: Looking to the future

“…A systematic review that sought to describe clinical practice interventions to support family-centred care in critical care during the COVID-19 pandemic identified family support and engagement, and systems to facilitate communication with families as key to family-centred care ( Fernández-Martínez et al, 2022 ); a finding consistent with another systematic review that examined how family members of dying patients are supported during infectious disease outbreaks, including COVID-19 ( Bloomer & Walshe, 2021 ). Common to both reviews was the importance of building connectedness through the sharing of information ( Bloomer and Walshe, 2021 , Fernández-Martínez et al, 2022 ), particularly at the end of life ( Bloomer & Walshe, 2021 ). Information about the patient’s condition and care are essential to family coping ( Bloomer & Walshe, 2021 ), so long as communication is delivered with cultural sensitivity, in accordance with the norms, customs and practices of the patient and their family ( Brooks et al, 2019 ).…”

“…Common to both reviews was the importance of building connectedness through the sharing of information ( Bloomer and Walshe, 2021 , Fernández-Martínez et al, 2022 ), particularly at the end of life ( Bloomer & Walshe, 2021 ). Information about the patient’s condition and care are essential to family coping ( Bloomer & Walshe, 2021 ), so long as communication is delivered with cultural sensitivity, in accordance with the norms, customs and practices of the patient and their family ( Brooks et al, 2019 ). Facilitating communication between the patient and family is also critical to humanisation in which the patient is recognised and respected as a person ( Fernández-Martínez et al, 2022 ), attenuating the negative impacts of separation ( Bloomer & Walshe, 2021 ).…”

“…Due to COVID-19 however, in many critical care settings, visitor access was restricted to mitigate transmission risks. Whilst the rationale as an infection prevention and control measure may be mostly understood, keeping families away from dying patients opposes cultural norms and prevents families from fulfilling their desired caring role, and contributes to family suffering and distress at the end of life ( Bloomer & Walshe, 2021 ). A survey designed to explore how family visitor restrictions during the COVID-19 pandemic impacted ICU clinicians in the USA identified that whilst clinicians spent more time using telephone and web-based applications to facilitate communication and a connection between patients, families and clinicians, clinicians also reported negative impacts on end-of-life care, associated with decreased comprehension and greater emotional distress for family members ( Wendlandt et al, 2022 ).…”

“…Connect patients and family through virtual visiting (telephone or web-based applications) ( Bloomer and Walshe, 2021 , Fernández-Martínez et al, 2022 )…”

“…Seek to understand and respect patient and family wishes before and after patient death ( Bloomer & Walshe, 2021 )…”