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.