“Because if I don’t hold his hand then I might as well not be there”: Experiences of Dutch and UK care home visiting during the COVID-19 pandemic

Abstract

Objectives: To explore and compare the experiences of care home visits during the pandemic in the UK and the Netherlands. Design: Qualitative semi-structured interview studies Setting and Participants: Family carers of relatives residing in care homes in the UK and the Netherlands were interviewed remotely. Methods: Family carers were asked about their experiences of care home visits during the pandemic, and specifically in the Netherlands after care homes had reopened. Transcripts were analyzed in each country separately in the native language using thematic analysis, before discussing findings at multiple analysis meetings. Results: Across 125 interviews, we developed four themes: (1) different types of contact during lockdown; (2) deterioration of resident health and well-being; (3) emotional distress of both visitors and residents; and (4) compliance to guidelines and regulations. Visiting in both the UK and the Netherlands was beneficial, if possible in the UK, yet was characterized by alternative forms of face-to-face visits which was emotionally distressing for many family carers and residents. In the Netherlands, government guidance did enable early care home visitation, while the UK was lacking any guidance leading to care homes implementing restrictions differently. Conclusions and Implications: Early and clear guidance, as well as communication, is required in future pandemics, and in this ongoing pandemic, to enable care home visits between residents and loved ones. It is important to take learnings from this global pandemic to reimagine long-term care, highlighting the value of socializing for care home residents.

Comparisons on factors affecting residents fulfilling self-determination in ethno-specific and mainstream nursing homes: a qualitative study

“…Our finding that family visitors were unable to use meeting rooms to interact with their loved ones after COVID-19 restrictions eased indicated that nursing homes had individual policies in COVID-19 prevention. The finding is in line with a qualitative study that compared Dutch and UK nursing home visiting during the COVID-19 pandemic in which family members faced some restrictions accessing rooms and spaces and visiting experiences were less enjoyable [ 44 ]. The findings suggest that nursing homes are required to create spaces and resources to support person-centred family interactions.…”

Unintended Consequences of COVID-19 Non-Pharmaceutical Interventions (NPIs) for Population Health and Health Inequalities

“…On the other hand, the NPIs can have particularly severe consequences for residents in LTCF and for their carers. Residents in LTCF include those with dementia who may have difficulty in understanding the changes in routine and/or the restrictions on visiting [ 184 , 185 ]. They also include those with limited life expectancy.…”

Ethical Guidance on Family Caregiving, Support, and Visitation in Hospitals and Residential Health Care Facilities, Including During Public Health Emergencies: an American College of Physicians Position Paper

“…Social isolation/ loneliness have been associated with cognitive and physical decline, anxiety/distress, depression, delirium, and behavioral disturbances among patients and LTC residents. 3,5,[17][18][19][20][21][22][23] Social isolation increases risk for premature death as much or more than hypertension, obesity, or smoking. 24 Loved ones also suffer.…”

“…24 Loved ones also suffer. 20,25 A multicenter study of physically distanced family members of critically ill COVID-19 patients highlighted their "profound suffering and psychological illness," including "substantial stress and PTSD in 63% of 330 family members at 3-month follow-up." 25 Families experienced overwhelming guilt, helplessness, decisional conflict due to suboptimal communication, yearning for physical connection, and fear patients would feel abandoned.…”

“…36 Despite alternative attempts to connect (e.g., video chats), many LTC residents suffer from sensory or cognitive impairments, making these interactions confusing and distressing for residents and loved ones. 20,36 Particularly for vulnerable populations, there is no substitute for face-to-face interaction, companionship, touch, and in-person support.…”