Emma Vincent

Pulmonary Rehabilitation & Respiratory

Nurse Specialist
BREATHING SPACE
FOR THE CARING
HAND
Learning
outcomes
Carer recognition
National policy
Risks of caring
Living alongside COPD

Carer recognition

Growing recognition that the majority of care provided in
chronic illnesses, such as Chronic Obstructive Pulmonary
Disease (COPD), is provided by caregivers, and not health care
professionals.

The estimated number of those living with chronic illness in
the UK is 15 million (DOH 2012)

Long-term conditions are more prevalent in older people (58
per cent of people over 60, compared to 14 per cent under
40)

More prevalent in deprived groups (60% prevalence as
opposed to 30% in the higher social classes for the higher
severity of disease, DOH, 2012)


National
Policy
National policy recognises the need
to support caregivers within the
community (NHS Outcomes
Framework 2013/14)

Initiatives aim to ease the burden
of caring

They encourage primary care
nurses to explore the specific care
needs of informal caregivers as
part of the patients package of
care
Circumstance
differs


Some carers have no choice on this
role

Others feel a profound sense of
privilege at being a carer

The Carer's benefit is only 53.10 a
week for a minimum of 35 hours'
caring (1.52 an hour)
Risks of caring in isolation

Exhaustion
Social isolation
Clinical depression
Domestic upset
Sense of inadequacy
Where the emotional strain of the caregiver burden is hidden,
the potential for that individual to become a patient
themselves is more likely

Living
alongside
COPD
COPD is a progressive disease with
recognised morbidity

It negatively impact quality of life and
is associated with an increased risk of
mortality of around 28,000 UK
patients per year

The irreversible decline in lung
function of patients with COPD tends
to be associated with increasing
numbers of exacerbations

Widely recognised that hospital
admissions can induce stress upon a
couple; what is less known is the
burden felt by those carers looking
after patients who are housebound



Time Out 1

What nursing
challenges may
some carers face
when looking after
patients with
COPD?
Carers challenges related to COPD care

Symptom control
Managing breathlessness
Pain control
Anxiety management
Personal care and dependency
Confronting fear of death
Dealing with behavioural differences
Managing GP and nurse visits
Administering medication
Providing around the clock care

Assessment of need

Good communication skills, compassion and clinical
judgement as a first

Then an appropriate assessment tool may aid the early
recognition of caregiver burden

Objective measurements are useful when reporting clinical
need but can be collected sensitivity, particularly during a
home visit
Validated tools to measure care giving
impact
Tool Type Measurement
Caregiver Burden Scale
(Zarit, 1980)
Questionnaire Mild-severe caregiver
burden.
The Care Giver Self-Efficacy
Scale (Zies et al. 1999)
Scale Carers ability to cope.
Time out 2

Consider the
impact of guilt in
the inability to
cope

On finding a high
care giver burden
score what are the
vital considerations
that need to be
approached when
reporting it?

Score impact


Evaluate of the impact of the score upon the carer

Does the carer feel guilty about being seen as unable to cope,
or not having the correct skills to complete the task

Consent to report these scores and to collect the data is
essential


Time out 3

Finding their
breathing space

What tips can we
give carers to help
elevate any burden?
Tips for carers

Encourage the carer to give up smoking if currently doing so

Ensure the carer understands the condition and how it may
affect the patient

Encourage the carer to eat a well balanced diet

Assess the carer for clinical depression and burden and report
sensitively with consent from the carer
Tips for carers
Ensure the carer understands any medications and inhalers

Explain all medical terminology in lay mans terms

Encourage the carer to take time out for themselves

Recognise that experiencing a range of emotions is natural
and not something to be ashamed of

Signpost to relevant patient and care organisations

Refer to carer respite when appropriate

Consider the possibility of patient respite in advance stages of
the disease

Finding the breathing space


A listening ear and an empathetic approach and this should
never be underestimated

Within advanced practice nurses can recognise how the varied
stages of the disease may impact upon the carer; from early
diagnosis through to palliation


Supporting caregivers is beyond holistic compassionate care

It is the recognition of a vital resource, the prevention of
further ill health and the protection of an already limited
health resource.



Every hour 3.76 people die from COPD

UK COPD Mortality

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30,000 deaths per
year

90 deaths every day