Care homes as a setting for research and policy development

Juliet MacArthur

Jo Hockley

First Published

May 15, 2018
   

       
           Editorial
       

   
     

In
many countries around the world, there are increasingly more care home
than acute hospital beds. In the United Kingdom (UK) the figure is three
times higher (Laing, 2015).
That is why this focus edition, examining the work of care homes, is of
particular importance to nursing and makes the need for high quality
research compelling. Gone are the days when older people admitted
themselves for companionship. In care homes, both those with and without
on-site nursing, residents are considerably frailer on admission than
10 years ago, and often have significant palliative care needs from
advanced, progressive, incurable disease(s) (Kinley et al., 2014).

Four
inter-related themes have emerged from international contributions from
Austria, Australia, England, the Netherlands, Norway, Scotland and
Spain. These are:

  • dementia;
  • experience and culture of care homes;
  • palliative and end-of-life care; and
  • teaching models within care home settings.
image

The
contributions are important not only in terms of the research outcomes,
but also in demonstrating the diversity of methodological approaches
open to researchers. Methodologies in this edition include
quasi-experimental studies using validated tools for measuring specific
patient outcomes (Traynor et al.) and control groups (Zwakhalen et al.),
institutional ethnography (Reid et al), case study phenomenology
(Lillo-Crespo and Riquelme), Q Methodology (Fleming and Kydd) and other
qualitative techniques (Reitinger et al. and Kinley et al.). Each of the
studies addresses complex and often ethically sensitive matters, where
issues of recruitment, consent (particularly relating to participants
who may lack capacity) and research governance come into focus.

In
two contrasting papers focusing on people living with dementia, Traynor
et al. evaluated the effects of structured physical activity on
behavioural and psychological symptoms in Australia, whilst Zwakhalen
et al. conducted a study in the Netherlands examining the effects of
working in small-scale dementia units. Both papers give interesting
insights into environments, models and philosophies of care for people
living with dementia. Traynor et al. stress that whilst physiotherapists
were directly employed within the studied care homes, they concentrated
on pain management and mobility (treatment model) without much
attention on optimising physical and mental functioning (wellness
model). The structured physical activity programme being evaluated aimed
to introduce a wellness model of care that might have an impact on
agitation and wandering. Zwakhalen et al. report in the background to
their study that in the Netherlands and Sweden around a quarter of
people with dementia live in small-scale facilities, something that
stands in contrast to many other countries. The philosophy of care
within such environments is based on staff, residents and families
negotiating how daily routines will take place with all participating,
where possible, in domestic activities, compared to more traditional
institutions where fixed routine tends to dominate the care delivery.

The
notion of experience of care homes is addressed at both a macro and a
micro level. In examining the transition of the care of older people
from home care to care homes in Spain as a cultural phenomenon,
Lillo-Crespo and Riquelme identify a number of important themes that are
identified as new to Spain but resonate with findings and experience
internationally. As Burton highlights in her commentary, what is
particularly significant for nursing is their observation that in Spain
there is a lack of specific education and training in the care of older
people in any settings or of recognition of the specialised role for
nurses in this sphere. Fleming and Kydd address the issue of ‘homely’
environments within care home settings (both communal and personal),
something that is a policy requirement in Scottish National Care
Standards (Scottish Government, 2017).
They look at how this influences the experience of care for both
residents and relatives. Their findings point to the importance of a
sense of belonging, which carries resonance with Nolan et al.’s (2006)
Senses Framework, as well as to the importance of retaining identity,
participating in activities and knowing that the environment is
supportive.

Given the fact that more than 50% of nursing care home residents die within the first year of admission (Kinley et al., 2014),
the issue of end-of-life care is paramount for all care home staff. The
systematic review by Spacey et al. on end-of-life care in UK care homes
gives a good overview of the different methodologies that have been
used and areas of research that have been covered over the last 10
years. With many media stories denigrating work in care homes, it was
very encouraging to read about Lawrence et al.’s (2011)
study, where care home staff were found to give greater holistic care
to their residents, compared to their more task-orientated counterparts
within acute hospitals. However, as Spacey et al.’s systematic review
reiterates, there remains considerable need for support of care home
staff, especially when it comes to caring for frail older people at the
end of their lives. Care home staff may have little health care training
and therefore rely on the wider community and interdisciplinary team
not only to help them have conversations with regard to plans towards
the end of life, but also to actually diagnose the phases of dying
within the often-dwindling trajectory of dementia (Hockley, 2015).
Interestingly, many care home staff do foresee the dying phase because
they get to know the residents so well in their day-to-day care.
However, to actually speak about a resident as ‘dying’, especially
within a culture where the palliative care approach is not acknowledged,
is sometimes more difficult.

Advance care planning (ACP) is a
subject that is explored not only as part of the systematic review by
Spacey et al., but also in studies in Scotland by Reid et al. and in
Germany by Reitinger et al. Care home staff are generally in a good
place to discuss preferences and wishes for end-of-life care. However,
discussions relating to health, such as admission to a hospital at the
end of life and ‘do not attempt cardiopulmonary resuscitation’ (DNACPR)
decisions, must be carried out by health care professionals. As the
majority of care homes in the UK do not have on-site nurses, the current
pressure on community services puts care homes at a disadvantage.
Whilst the other papers discuss the difficulty care home staff have in
undertaking ACP conversations in general, Reid et al., in their
institutional ethnography, examine the specific subject of DNACPR in
relation to ACP decisions. This important study highlights the pressure
that staff in care home organisations (especially those without on-site
nurses) may feel when undertaking ACP discussions while trying to comply
with what Reid et al. describe as ‘powerful political and fiscal drives
to reduce government spending’ without adequate support from external
health care professionals.

How one measures the quality of
palliative and end-of-life care (other than simply through the number of
ACPs completed or reduction in deaths in acute hospitals) is taken
forward in two interesting studies by Reitinger et al. and Kinley et al.
Both studies looked to relatives for answers regarding the degree to
which care homes provide a positive palliative care culture. Reitinger
et al. explored the views of bereaved relatives through focus groups
conducted in four German care homes. Kinley et al. analysed the
qualitative comments from bereaved relatives who had completed an
adapted version of the Family Perception of Care Scale (Vohra et al., 2006)
as part of a larger study and found they emphasised the importance of
building relationships with external health care professionals. As
Reitinger et al. highlight, the perspective of relatives on the
palliative care culture of nursing care homes has not been studied
extensively, which makes both these papers unique.

The three
papers by Kirkevold, Barnett et al. and Loffler et al. reflect the
important position that nursing care home organisations can have in
teaching and training health and social care professionals. For too
long, care homes have become isolated from general health and social
care to the extent that they have been known as ‘islands of the old’ (Owen et al., 2012).
Kirkevold reflects on how an action research project that originated in
Norway more than 20 years ago has influenced health and social care
policy in such a way that the Norwegian government has funded and
developed an infrastructure to support a number of teaching nursing
homes (TNHs) down the spine of the country. As Kirkevold concludes, TNHs
are not a new invention, but it seems that their time has now arrived –
a message that may be relevant for many other countries to emulate.

More
recently, the Australian government took a different approach to engage
with care home organisations (Barnett et al., 2016). They funded a
number of projects within the Teaching and Research Aged Care (TRACS)
programme, encouraging a greater partnership between local universities
and care home organisations. This is the overarching programme being
evaluated in the contribution by Barnett et al. One of these projects,
evaluated by Loffler et al., involves student placements between the
Helping Hand Aged Care organisation and different universities in
Adelaide, and stands out in terms of sustainability. Loffler et al.
detail this specific model of collaboration and address issues of
resource, staffing, approach and integration of both vocational and
health care students from a variety of disciplines. In 2016 alone,
Helping Hands offered more than 600 student placements across their
different aged care organisations, with a high level of student
satisfaction and recognition of the impact on understanding the care of
older people. As Christie states in her commentary, care homes offer an
ideal setting for students to explore the ‘balance between empathic
practice and self-care in order to support the well-being and resilience
of the workforce’.

What this edition demonstrates is that the
important work in care homes is beginning to draw in not only
universities, but also government bodies and organisations establishing
national and local policies relating to the care of older people. A core
theme emerging across many studies is the importance of ongoing
political and strategic buy-in, especially where there is an emphasis on
collaboration and inter-professional working. What is also vital is
that policy initiatives integrate robust research with a particular
emphasis on developing methodologies that allow meaningful involvement
of care home residents, as well as relatives and staff, in order to
evaluate outcomes.

Finally, what Hector reminds us of, in the five
vignettes within her Perspective piece ‘Who am I?’, is the importance
of personhood and respect in all aspects of care, policy making and
research with older people. Each portrait poignantly brings to life the
very essence of being known as an individual with memories, opinions and
feelings despite increasing frailty towards the end of life.

References

Juliet MacArthur
is Chief Nurse Research and Development in NHS Lothian, Edinburgh. Her
role involves building research capacity in nursing, midwifery and
allied health professions. Her research interests include compassionate
care, care of people with a learning disability in general hospital care
and discharge decision making from acute hospitals to care homes.

Jo Hockley
is Senior Research Fellow in the Primary Palliative Care Research Group
at the University of Edinburgh. She has extensive clinical and research
experience in palliative care and care homes with specific interest in
pain management, supporting care home staff following a death and
student placements.

Published by Residential Forum

The Residential Forum is to promote the achievement of high standards of care and support for children and adults living in residential care and nursing homes, supported housing, residential schools and colleges, hospices and hostels. It contributes to improving the quality of service to the public. Members of the Forum are people of standing and experience drawn from the public, private and voluntary sectors, as well as some who can speak for service users and carers.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: