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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 patient’s 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 1What ‘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•G
ood 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 MeasurementCaregiver Burden Scale (Zarit, 1980)
Questionnaire Mild-severe caregiver burden.
The Care Giver Self-Efficacy Scale (Zies et al. 1999)
Scale Carer’s ability to cope.
Time out 2Consider 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•E
nsure 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 Mortality12
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30,000 deaths per year
90 deaths every day
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