International research consistently demonstrates that family members continue to provide instrumental, emotional, and personal care support after their loved one moves into a nursing home (Davies & Nolan, 2006; Gaugler, 2005; Ryan & McKenna, 2015), contradicting the myth that family members relinquish their roles as caregivers after this transition. In one piece of research, families were seen to be involved in the timely detection of changes in health in three key ways: noticing signs of changes in health, informing nursing home staff about what they noticed and educating nursing home staff about their family members’ changes in health. Yet, they often occupy ambiguous positions in these settings. Even though family members adopt roles that can contribute to their relative’s overall physical and psychosocial well-being (Cohen et al., 2013; Port, 2006), they experience increased levels of burden and strain (Gaugler, 2005) related to challenges of negotiating their relatives’ care with care staff and nursing home administration (Baumbusch & Phinney, 2014).
Despite all the positive benefits associated with the ongoing involvement of family, nursing homes in Ireland are not required to consult with residents and relatives. This results in inconsistent and ad hoc practice. Some nursing homes are to be applauded for having residents’ and relatives’ groups, but the practice is not uniform. There are other examples where engagement is lacking. While the Nursing Home Expert Panel was given a short-term focus and an extremely narrow timeline in which to complete its work, we were disappointed with the Group’s overall lack of engagement with residents and relatives, although a number of submissions were provided by stakeholders. While HIQA incorporates feedback from relatives in its nursing home inspection process, this is not by open invitation – the process seems to rely on the nursing home to communicate the announced visit and select relatives to participate. From an informal survey of all the relatives I know, none of us were ever invited to participate!
This apparent unwillingness or inability to involve relatives seems to come from a somewhat institutional culture and corresponds with some of my own personal experiences. When my aunt started acting out of character during my regular visit, I flagged it to the nursing home care staff. They had not noticed anything amiss, but it subsequently transpired she had a serious UTI. In my mother’s case, I was frequently asked to leave the room when she needed to go to the bathroom or be changed for bed, despite her requesting me to stay. When I queried this, I was simply told I had entrusted my mother to the nursing home’s care. Likewise, I was not consulted or asked in the development of my mother’s care plan. When I asked to see it, parts of it were clearly cut-and-paste as some of the details did not even apply to my mother’s condition. I was often made to feel awkward and difficult for voicing my desire to remain an active and engaged partner in my mother’s care.
During levels 2 and 3 COVID-19 lockdowns, there was huge variation reported by relatives around the country, seeking to visit their loved ones. It seems that much depended on the judgement of the individual nursing home provider. While many nursing homes were motivated by safety concerns, for some, it seems to have been an all too easy option to just stop relative visits. There appeared to be little consultation or dialogue with nursing homes arbitrarily developing their own rules. NHQI believes that stopping all visits should be the last line of defence – not the first.
Reports by the Expert Panel and HIQA on the COVID-related challenges facing nursing homes recognise the deprivation that residents are enduring across the entire spectrum of care. This includes disruption of daily routine, loss of personal contact with staff, abandonment of social and therapeutic activities and visits by loved ones. Both reports give priority to the health and safety of residents and staff and, without question, this is absolutely appropriate. Both signal the need to be sensitive to the psychological and sociological dimensions of care and the need for a balanced approach. However, no specific recommendations for the promotion or achievement of that balance have been put forward. Both parties would appear to betray a rather limiting appreciation of the holistic nature of long-stay care which includes: ‘objective domains such as the physical and care environment, physical and mental health, level of functioning and socio-economic status; and subjective domains such as psychological well-being, autonomy and independence, purposeful activity, social relationships, spirituality and identity/sense of self’ (Murphy et al., 2006). These quality of life dimensions cannot be put on ice indefinitely.
NHQI calls on policy-makers and regulators to engage immediately with service users and other stakeholders to implement best possible arrangements for visitations and other essential social activities in each and every nursing home. We note with interest the imaginative use of hug rooms in Italy as reported in Italian media here. We also note the UK Government’s plans to give iPads to care home to facilitate residents remaining connected with their families as reported in the UK Independent here. The UK is also running a pilot programme for relatives to get regular testing for safer care home visits with plans to roll out nationally by December – details are here.
NHQI wholeheartedly agrees with the desire to provide person-centric, dignified care. That aspiration is usually part of the mission statement of many nursing homes. However, that concept by its very definition places the resident firmly at the centre. Without the active involvement of residents and families, it is difficult to see how this can be achieved. The resident, the relative and the nursing home do not currently appear to be equal partners. NHQI believes that a proper consultation process with residents and relatives is vitally important and would result in improved standards through constructive feedback and an overall better user service experience. Looking to the future, we expect to see new regulatory frameworks and new nursing home oversight structures implemented. In that context, we are proposing to Government that a service user role be recognised in the new statutory regulations and we propose to Government that it look to such arrangements in other jurisdiction in the course of drafting the new measures.