Transcript GASP Goulburn Airways and Perceptions

GASP
Goulburn Airways Stories
and
Perceptions
A phenomenological study into the
experience of breathlessness in COPD
Robbie Hoskins, Lou Fox, Jane Cotter
Goulburn Health Service SNSWLHD
“just anxiety”
• Breathlessness most distressing symptom in
COPD
• Simplistic perceptions exist amongst HP that it is
“just anxiety”
• Previous studies and anecdotal evidence suggest
it is more complex influenced by the patient’s
individual understanding and experience of
breathlessness
• We wanted to try to understand a COPD client’s
experience of coping with breathlessness in
Goulburn, a rural town.
Background
• Some research suggests that unlike with pain, COPD patients have few
words for expressing to others how they feel and the language of
dyspnoea is poorly developed. This suggests that communication about
the severity of dyspnoea with HP and families may be difficult for patients
(Fraser et al 2006)
• Schneider et al 2010 associates COPD with risk of depression and relates
this to severity.
• Fraser (2006) and Bailey (2004) found that patients with acute
exacerbations of COPD saw anxiety as an indication of breathlessness
rather than a cause.
• Bailey also suggested that patients measure the severity of dyspnoea by
how they feel emotionally and what they were able to do which suggests
that descriptors of severity may involve emotional language.
Aim
• To investigate patients with COPD experiences of
living with breathlessness, and
• To enable extension to and improvements in the
understanding of healthcare professionals in the
provision of support services and assistance for
this population group.
• The researchers were a Psychologist, an
Occupational Therapist and a Nurse Practitioner
Methodology
• Ethics approval was in order to ensure the
validity of the study and the safety of the
participants.
• 10 patients with diagnosed moderate to
severe COPD on spirometry were randomly
selected. They had all been involved in
Pulmonary Rehabilitation in one form or
another
Methodology continued
• The structured interview was based on O’Neill’s interpretation
of the Common Sense Model of illness representation
(2002)(based on Leventhal, Meyer and Nerenz 1980) which
postulates.
• People are active processors who create mental
representations of their illness and strive to make sense of
their bodily experiences and these beliefs then inform their
coping strategies.
• The logical dimensions that order the illness representation
are identity, cause, timeline, consequences and coping. These
provided the basis for the questions in the interviews.
• In order to limit the potential for bias arising
from previously formed relationships
interviews were conducted by the 2
researchers not directly involved with the
participants – one conducted the interview
and one typed the responses verbatim.
• The transcripts were then sent to the
participants so they could verify the answers
and modify if they wished.
Data Analysis
• Colaizzi’s staged method of data analysis (1978)
was utilized
• The 3 researchers were all from different
backgrounds, disciplines and level of experience
in this area
• Having 3 researchers helped avoid
presuppositions and bias and gave a ready means
of checking interpretation for bias
• Each researcher read the transcripts and then
came together to generate a number of themes.
Analysis continued
• 2 researchers then went through the transcripts
independently to extract significant statements and
allocate them to the possible theme.
• The third researcher cross checked the significant
statements and themes to ensure rigour and the final
allocation was agreed by all three
• The themes then were organized into emergent
themes which aimed to encapsulate universal concerns
• The participants were then invited to review and
comment on what we heard them say and the themes.
This led to some fine tuning.
Emergent Themes
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Hospital as a last Resort
Continual adjustment
Emotional Vulnerability
Knowledge as a toolbox
Hospital as a last Resort
• 80% left going to hospital as a last resort
- poor hospital experience
-a fierce sense of independence.
• 40% found difficulties in communicating to
those who do not understand and saw a
priority in getting to someone who did
understand and required little talking.
Continual Adjustment
• Adjustment is the biggest issue in the newly diagnosed
– “I want to be left alone”. “They don’t realise talking
can’t happen when I can’t get breath” Understandings
come with time.
• Aspects of this adjustment60%- Inability to perform valued family helping
functions.
60%- Accepting help and getting better at saying no.
• 40% described this adjustment as a battle between the
mind wanting to do something but the body incapable
- “needing to get the mind in the right place to control
the body.”
“Fighting spirit”
• 100% expressed the need to take control, to fight
the breathlessness, to not “become the disease”,
to “treat it as a self care thing.”
• 60% used language that externalizes and
personifies the disease process which can be
seen as having a mind of its own – “It lets me
then.”- this is an adaptive process.
• The unpredictable nature of the disease makes
this fight difficult. Control is not easily achieved “ Not one day is the same. It’s not predictable” “I’ve got to adjust to it, not it adjust to me”
• The everyday battles in living were obvious.60% spoke of the effort involved in simple
ADL’s.
• 60% found socializing a challenge- difficulties
with equipment, walking, standing, talking,
not wanting to inflict mood on others.
Emotional Vulnerability
• 50% spoke of depression or depressed mood when sick
day after day (Schneider et al 2010)
• 20% mentioned benefits of controlling difficult
emotional states because of their capacity to increase
breathlessness- What were these states?
• 30% mentioned anger and frustration contributing to
or associated with breathlessness. Michaels et al
(2008) found a correlation between anger words and
breathing intensity.
• Depression, fear, nerves and worry were mentioned by
other individuals – no more dominant than anger
• 70% said breathlessness causes the anxiety rather
than the other way round. Supports anxiety as an
indicator of the severity of the illness. (Bailey
2004)
• 40% concerned with possibility of death - 2 died
during the study.
• 100% saw breathlessness and choking as the
most distressing symptom- expect abruptness,
irritability in the struggle to get breath.
Knowledge as a toolbox
• 70% recognized the importance of a key
professional
• 90% use sitting to catch breath and 90% use
pacing themselves to achieve tasks
• 70% found Action Plans useful and only one
did not want an Action Plan
• 70% talked of breathing strategies for coping
but 80% spoke of limitations to this- useful for
mild to moderate breathlessness.
“A wet mattress started it”
• 70% chose a label other than COPD to identify
their disease - asthma, bronchial asthma,
heart/lung condition.
• An identifiable start of the condition was
sometimes unclear and sometimes unrealistic.“A wet mattress started it” -“Because I had that
breakdown.”
• Participants felt that COPD was too big a label
with too much under it .- this caused confusion
and often a reduced sense of control
Implications for Practice
• Communication difficulties while breathless make the experience
of triage difficult for the patient
– Whilst hospital was a last resort - comments about avoiding
hospital were focused on the admission process and their strong
feelings tempered by a sense of security once admission was
achieved.
– This study supports the premise that anxiety may not be the
cause of the breathlessness and is more likely to be an indicator
of the severity of breathlessness and degree of exacerbation.
– Recommendations –
– Use of the Borg Scale on admission to measure perceived level
of breathlessness, and
– Explanation of non- verbal measures of breathlessness used by
staff to assess patients
Health literacy implications
• Confusion re naming of COPD has implications
for communication and health literacy. It has
been suggested by Pinnock et al(2011) this
confusion means no “public” story to which
patients can relate ie unclear expectations –
“no expectation of death and no despair but
equally no hope of cure”
• Need to look at consistencies with naming
diseases and use of these terms with patients.
In practice
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Ongoing use of pulmonary rehab programs
including discussion of patient experience of
breathlessness and identified useful strategies.
• Continue to focus on using a Key Professional role
in management of chronic disease
• Education to health professionals on the
implications for practice in the acute and
community settings and encourage a change in
attitude and deeper understanding of staff.
References
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Bailey, P. (2004). The dyspnea-anxiety-dyspnea cycle - COPD patient's dstories of breathlessness:
"It's scary/when you can't breathe:. Qualitative Health Research, 14(6), 760-778.
Christenbery, T. (2005). Dyspnea self-management strategies: use and effectiveness as reported by
patients with chronic obstructive pulmonary disease. Heart & Lung, 34(6), 406-417.
Colaizzi, P.F. (1978) Psychological research as a phenomenologist views it. In Valle, R.S. King, M.
(eds) Existential phenomenological alternatives for psychology OUP NY
Fraser, D., Kee, C., & Minick, P. (2006). Living with chronic obstructive pulmonary disease:insiders'
perspectives. Journal of Advanced Nursing, 55(5), 550-558.
Hagger, M., & Orbell, S. (2003). A meta-analytic review of the common-sense model of illness
representations. Psychology and Health, 18(2), 141-184.
Michaels C, Meek, PM, Dedkhard S, Breathing intensity and word use in individuals with COPD
Chronic Respiratory Disease 2008: (5): 197-204
O'Neill, E. (2002). Illness representations and coping of women with chronic obstructive pulmonary
disease. Heart & lung, 31(4), 295-301.
Pinnock H, Kendall M, Murray S, Worth A, Levack P, Porter M, MacNee W, Sheikh A, Living and dying
with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study
. BMJ 2011; 342:d142
Schneider, C . Jick, S. Bothner, U. Meier, C. (2010) COPD and the Risk of Depression, Chest 137(2),
341-347.