See discussions, stats, and author profiles for this publication at: https://www.researchgate.

net/publication/352227218

Psychological and emotional support for carers and home care staff
supporting people with intellectual disabilities during Covid-19

Article  in  Clinical Psychology Forum · June 2021

CITATIONS READS

0 10

2 authors, including:

Ilaria Tercelli
University of Essex and Tavistock and Portman NHS Foundation Trust
4 PUBLICATIONS   10 CITATIONS   

SEE PROFILE

All content following this page was uploaded by Ilaria Tercelli on 08 June 2021.

The user has requested enhancement of the downloaded file.

Psychological and emotional support for
carers and home care staff supporting
people with intellectual disabilities during
Covid-19
Ilaria Tercelli & Sabiha Azmi
D
URING the recent pandemic of coro-
navirus (Covid-19), individuals with
Intellectual Disabilities (ID)1 have expe-
rienced significant levels of physical and
psychological vulnerability. The Care and
Quality Commission (CQC) published a target
analysis that examined the impact of Covid-19
on individuals with ID and how the number
of deaths during this period compared to the
number of deaths in the previous year. This
information was submitted from care homes
about the people in their care to the CQC and
was published weekly as part of the Office of
National Statistics (ONS). Between 10 April
and 15 May, there was a 134 per cent increase
1
The term Intellectual Disabilities (ID) is used to refer to people with Learning Disabilities (LD).
Clinical Psychology Forum 341 – May 2021 33
in the number of deaths of individuals with ID.
Moreover, the Learning Disability Mortality
Review (LeDeR, 2020) highlighted that there
was a 400 per cent increase in mortality for
people with ID from April to July 2020. Conse-
quently, the pandemic has led to feelings of
uncertainty, fear and anxiety that brought
considerable challenges for individuals with
ID where their routines have been interrupted
and some have experienced difficulties appre-
ciating rules for social distancing and infection
control (Social Care Institute for Excellence,
2020).
During the Covid-19 pandemic, the
support provision to people with LD requires
Ilaria Tercelli & Sabiha Azmi
skills to manage very complex situations. The
Trauma Response Working Group (2020),
coordinated by staff at University College
London and the Traumatic Stress Clinic at
Camden and Islington NHS Trust, highlighted
the importance to provide a coordinated,
evidence-based and trauma-informed response
to the Covid-19 crisis. They emphasised that
frontline care and healthcare staff expe-
rience direct threats to their lives, primary
traumatic exposure, and also witnessing the
death of others, secondary traumatic expo-
sure. Frontline staff may also experience
losses among their family and friends during
the pandemic. These factors may have led to
a higher level of distress, anxiety, burnout and
also post-traumatic stress disorder (PTSD).
The Trauma Response Working Group (2020)
recommendations were to ensure that front
line staff are physically safe and had access to
appropriate psychological support.
The emotional and psychological support
group
In light of the difficulties that staff were expe-
riencing in the local area under the four
boroughs served by the North East London
NHS Foundation Trust (NELFT), an online
weekly group was created to provide emotional
and psychological support for carers and home
care staff who support people with ID. The
group was shaped around the guidelines of
trauma-informed response to the Covid-19 crisis.
The Inter-Agency Standing Committee (IASC)
Reference Group on Mental Health and Psycho-
social Support (MHPSS) in Emergency Settings
in response to Covid-19 recommended activi-
ties that include: promotion of self-care strat-
egies, such as breathing exercises; relaxation
exercises; normalisation about fear and anxiety
and ways people can support others. There-
fore, a Compassion Focused Therapy approach
(CFT) was adopted in order to increase
the capacity of caregivers for self-soothing,
self-directed compassion, and process potential
shame-based memories within their window of
tolerance (Gilbert, 2010). Moreover, elements
of Mindfulness-Based Stress Reduction (MBSR)
were used to improve resilience and wellbeing
34 Clinical Psychology Forum 341 – May 2021
during times of adaptation and change to the
challenges that Covid-19 posed (Behan, 2020).
There is a considerable amount of research
literature on staff stress and burnout amongst
caregivers of individuals with intellectual disa-
bilities (Panicker & Ramesh, 2018). Chronic
stress arises when we perceive that the demands
placed on us exceed our coping resources
and can lead to psychological distress that
manifests as depression, anxiety or health
difficulties. Staff may have less emotional and
psychological capacity and resources needed
to provide sensitive and well attuned care
for people with intellectual disabilities. This
may in turn lead to escalations in expressions
of behaviours exhibited when the needs of
people with ID are not met including behav-
iours of concern and behaviours that chal-
lenge. This further can elevate stress levels
among staff. As such creating a vicious cycle of
high levels of carer’s stress leading to difficul-
ties of attuning and establishing high-quality
social relationships with service users and as
such a rise in behaviours of concern. This
vicious cycle is likely to pose a risk for both
staff, carers and the service users they support.
Focus of the carers’ group
The group took place online and the sessions
were 1.5 hours long, running once a week for
eight weeks between May and June 2020 and
was led by a consultant clinical psychologist
and a trainee clinical psychologist.
Participants: Care staff participants were
from care homes across the four North East
London boroughs supporting people with
intellectual disabilities. Participants were
from both Local Authority and private care
providers. The vast majority of participants
were from BAME backgrounds and largely
female care staff. The participants approxi-
mate age ranged from 23 to 55 years. Their
roles varied from home managers, deputy
managers to direct care staff and health care
assistants These care staff were supporting
individuals with ID presenting with a range
of complex needs including behaviours that
challenge and complex mental health needs
across the full range of ID severity.
 Psychological and emotional support for carers and home care staff supporting people with IDs during Covid-19
The average number of participants
remained below 8 and the range of regular
attendees were from 1–8. An open group
format was adopted rather than a closed group
to ensure the support offered can be both
flexible and accessible for care staff where
possible. This was especially the case for
staff working on shifts and rotas who would
ordinarily struggle to access the support on
a consistent basis.
Group facilitators did however try to ensure
the group numbers did not exceed more than
6–8 care staff per session by asking care staff
to get in touch with us if they were thinking of
attending the session.
Session format
The session outline consisted of: (1) review and
reflections of participants’ thoughts and feel-
ings; (2) psycho-educational element incorpo-
rating a number of therapeutic approaches as
outlined below (3) final part of session ended
with mindfulness and self soothing experien-
tial exercises.
(1) Review and reflections of participants’
thoughts and feelings
One initial theme that was identified among
participants was around the emotional
responses due to traumatic events such as the
loss of family members and service users in
their services. This led to a discussion about
the sense of fear that both service users and
staff are experiencing. Accordingly, there were
concerns around keeping service users safe
and engaged in meaningful activities.
One participant of the group, who was
a manager in an LD residential setting,
reported that there were significant concerns
around the use of personal protective equip-
ment (PPE), swabs and testing for people with
LD, staff availability, and the difficulties that
they encounter within the home environment
due to Covid-19. The responsibility of keeping
service users safe during the pandemic led
to experiences of extreme stress for home
managers. Manifestations of this led to staff
being in constant state of high anxiety, sleep-
less nights and constantly making plans and
Clinical Psychology Forum 341 – May 2021 35
checking to ensure they are being imple-
mented with other colleagues and staff, even
when off duty.
(2) Psycho-educational element incorporating
a number of therapeutic approaches
Therefore, based on reflections made by
participants, we provided psychoeducation
on how the responses that the participants
have discussed, may increase level of cortisol
and may cause individuals to hyper-focus on
potential threats. Following a CFT model, this
phenomenon is referred to as threat-focused
emotion regulation system. We also consid-
ered the functions of the drive-excitement
system to provide positive feelings and
resources in order to survive and prosper.
We finally explored the soothing emotional
regulation system in the brain that helps to
soothe us when we are frightened (Gilbert,
2010). Accordingly, we discussed as a group
how the current Covid-19 context may lead to
feelings of fear where mostly threat responses
are being activated. This led to a discussion
around the importance to nurture an inner
psychic state where the self-soothing responses
can become more present, and we highlighted
the role of self-compassion.
(3) Mindfulness and self-soothing experiential
exercises
A traditional cognitive behavioural therapy
(CBT) approach might have focused on tech-
niques where participants would have been
encouraged to assess anxious and distressing
thoughts and find different or more balanced
ways in responding to them. Instead, in this
group we encouraged participants to use
a variety of compassionate skills based on CFT
and MBSR. Compassionate skills were defined
by Gilbert (2010) as: ‘they involve learning to
direct our attention in a compassionate and
helpful way; learning to think and reason in
a compassionate and helpful way; and learning
to behave in a rational and compassionate
way. We do each of these with the feelings of
warmth, support and kindness’ (p.23).
Firstly, we practised compassion exercises
in order to bring into consciousness a sense
Ilaria Tercelli & Sabiha Azmi
of compassionate self and feelings towards
others. We also discussed the importance of
receiving kindness from others, in order to
stimulate areas of the brain systems that are
responsive to this (Gilbert, 2010). Different
exercises have been introduced to the group
including the use of the compassionate letters
and visual imagery. We also utilised the tech-
nique of the ‘butterfly hug’ in order to induce
a sense of safety and calm and consequently
allow the participants to experience a sense of
self-comfort and self-soothe (Artigas & Jarero,
2014).
Secondly, we practiced mindfulness exer-
cises to bring ourselves to the present moment.
The breath was used as a precious anchor
to bring back the attention to the present
moment and disengage from other worries.
We practiced soothing rhythm breathing,
body scan and loving-kindness meditation,
among others. We encouraged the practice of
mindfulness in different contexts, including:
preparing food, eating, and walking (Williams
& Penman, 2011).
Moreover, we demonstrated simple mind-
fulness exercises that carers were encouraged to
practice with service users and other members
of staff on a regular basis. One member of the
group expressed her enthusiasm in learning
about non-judgemental listening and mindful
acceptance on the present moment by looking
at the bigger picture. We discussed how our
minds tend to focus on negative thoughts and
it is important to train our mind in order to
experience more balanced views of ourselves
and others.
Thirdly, we have been using the ‘Chal-
lenging Your Thoughts With Compassion’ work-
sheet, where participants were encouraged
to practice responding to anxious thoughts
with kindness and compassion (Whalley &
Kaur, 2020). Due to the current pandemic,
we discussed ‘real’ and ‘hypothetical’ worries,
which also lead to catastrophic thinking and
snowballing. We provided information on
the importance to have a daily routine that
involves a balance between activities that give
us a sense of achievement, help us feel close
and connected with others and activities that
36 Clinical Psychology Forum 341 – May 2021
give us pleasure and enjoyment. One member
of the group reflected on how meaningful
it was for her to learn about the importance
of taking a specific time to worry and writing
it down. In turn, this allowed her to create a
‘distance’ from the problems. We explored
how defusing from our thoughts helps to
lessen their negative impact on our behav-
iour. We also highlighted how defusion can be
a vital step towards being able to act flexibly,
in accordance with values, instead of being
dictated to by inflexible rules.
Reflections on group outcomes and
impact for care staff
Feedback and reflections from participants
were gathered using qualitative feedback at
the end of each session and also towards the
end of the group programme. Given that the
group was an open group consisting of a small
group of care staff attending the various
different sessions, aiming to gather quantita-
tive outcome measures was deemed unhelpful
and unlikely to yield any useful meaningful
data. As such more qualitative feedback was
gathered across and towards the end of the
group programme. The key themes emerging
from these are summarised.
Based on the qualitative feedback, partici-
pants attending the group overall highlighted
that the group had been a beneficial expe-
rience for both staff and had led to indirect
positive outcomes for service users. These
two emerging themes are highlighted in the
salient quotes from participants of the group.
‘The sessions helped me to remember that every-
one’s feelings and thoughts count not least my
own. As a busy service manager it is easy to
forget to care for oneself and, as a result, it
reminded me that I was also very important.’
‘Mindfulness is the best word to describe what
I have extrapolated from our sessions together
and the exercises to help encourage and promote
this have been very powerful. These have been
helpful to both our residents and staffing team
here at X.’
 Psychological and emotional support for carers and home care staff supporting people with IDs during Covid-19
A member of the group expressed her
enthusiasm about the weekly sessions and
explained that she has been cascading the
information to the rest of her team and
noticed consistent improvements. Accord-
ingly, we discussed the role of co-regulation
between staff members and service users. We
highlighted the importance for staff to be
aware of their own emotions, which subse-
quently may lead to cultivating a sense of
kindness towards service users.
‘Our staffing team and service users here at
X indirectly experience the benefits of mindful-
ness by way of my interactions and responses.
I will also continue to share the material I’ve
learned.’
Final reflections
This was the first time that we had delivered
a group online due to the measures in place in
the context of the current pandemic. We were
keen to offer support to caregivers who might
have been affected by changes in service provi-
sion by providing an online group. There were
several benefits including the opportunity to
‘meet’ on a regular basis with participants that
were based in different localities. Due to the
focus of the group in delivering psychoedu-
cation and experiential practices, we did not
feel that the group lacked a level of contain-
ment. The participants’ feelings were acknowl-
edged, validated and the weekly appointments
allowed a sense of containment and support.
Moreover, throughout the group
programme, psychology colleagues facilitating
References
Artigas, L. & Jarero, I. (2014). Butterfly hug method.
Retrieved from: https://emdrresearchfoundation.
org/toolkit/butterfly-hug.pdf
Behan, C. (2020). The benefits of meditation and
mindfulness practices during times of crisis such as
COVID-19. Journal of Psychological Medicine, 14, 1–3.
Care Quality Commission (2020). CQC publishes data
on deaths of people with a learning disability. Retrieved
from https://www.cqc.org.uk/news/stories/
cqc-publishes-data-deaths-people-learning-disa-
bility
Gilbert, P. (2010). Compassion focused therapy. London:
Routledge.
Clinical Psychology Forum 341 – May 2021 37
the sessions had their own post-group super-
vision after the session. This focused not only
on planning and review of how the group
went but also enabled us to reflect on our own
experiences delivering an emotional support
group during a collective period of uncer-
tainty and difficulty. We reminded ourselves
of the value of self-care, supporting each
other during weekly reflective practice and
supervision with our psychology team, and
spending quality time with family. We felt that
we embedded, at a personal level, the values
of self-compassion and anchoring ourselves to
the present moment through the daily experi-
ences of mindfulness.
Authors
Ms. Ilaria Tercelli, Trainee Clinical Psycholo-
gist (University of Essex in partnership with
the Tavistock and Portman NHS Foundation
Trust and Essex Partnership University NHS
Foundation Trust)
Dr Sabiha Azmi, Consultant Clinical Psycholo-
gist, and Strategic & Clinical Lead for LD
Psychological Services (North East London
NHS Foundation Trust).
Correspondence
Dr Sabiha Azmi, Consultant Clinical Psycholo-
gist, Strategic & Clinical Lead for LD Psycholog-
ical Services, Maggie Lilley Suite, Goodmayes
Hospital, Barley Lane, Illford, Essex, IG3 8XJ.
Tel: 0300 555 1200 (ext 53599)
Email: Sabiha.Azmi1@nhs.net
Gilbert, P. (2010). Training our minds in, with and
for compassion. An introduction to concepts and
compassion-focused exercises. Retrieved from https://
www.compassionatemind.co.uk/resources/exer-
cises
Inter-Agency Standing Committee (2020). Addressing
Mental Health and Psychosocial Aspects of COVID-19
Outbreak. Retrieved from http://www.ukpts.co.uk/
Covid/IASC%20Interim%20Briefing%20Note%20
on%20COVID-19%20Outbreak%20Readiness%20
and%20%20Response%20Operations%20-%20
MHPSS.pdf
Ilaria Tercelli & Sabiha Azmi
Learning Disability Mortality Review (2020). Reposi-
tory. Retrieved from http://www.bristol.ac.uk/sps/
leder/repository/
Panicker, A.S. & Ramesh, S. (2019). Psychological
status and coping styles of caregivers of individuals
with intellectual disability and psychiatric illness.
Journal of Applied Research in Intellectual Disabilities,
32(1), 1–14. doi:10.1111/jar.12496.
Schuengel, C., Kef, S., Damen, S. & Worm, M. (2010).
‘People who need people’: attachment and profes-
sional caregiving. Journal of Intellectual Disability
Research, 54(1), 38–47.
Social Care Institute for Excellence (2020). COVID-19
guide for care staff supporting adults with learning disa-
bilities or autistic adults. Retrieved from https://www.
scie.org.uk/care-providers/coronavirus-covid-19/
learning-disabilities-autism/care-staff
38 Clinical Psychology Forum 341 – May 2021
View publication stats
Trauma Response Working Group (2020). Informed
response to COVID 19: What, why and how?
Retrieved from https://232fe0d6-f8f4-43eb-bc5d-
6aa50ee47dc5.filesusr.com/ugd/6b474f_2cdef-
2cbb07241c09656937e76907018.pdf
Whalley, M. & Kaur, H. (2020). Living with worry
and anxiety amidst global uncertainty. Retrieved
from https://www.psychologytools.com/articles/
free-guide-to-living-with-worr y-and-anxiety
-amidst-global-uncertainty/
Williams, M. & Penman, D. (2010). Mindfulness:
A practical guide to finding peace in a frantic world.
Piatkus.