Transcript Research on living with chronic illness: need state and

Research on living with chronic
illness: important findings from
qualitative research
Mieke Grypdonck
Em.professor of Nursing Science
Gent University
University of Utrecht
Sources
• Ph D dissertations (finished and ongoing) Aart
Pool, Sofie Verhaeghe, Marijke Kars, Sigrid Vervoort,Jan Jukema,Saskia Decuman,
Corine Nierop-van Balen
• AFinanced research: Mia Duijnstee, Aart Pool & Henny
Boeije; Marijke Kars, Aart Pool & Mia Duijnstee; Saskia Weldam;Janneke
Ronse, Michiel Daem & Elsie Decoene; Ruth Piers, Innekevan Eechoud ,
Sigrid Van Camp, Nele Van de Noortgate,
• Master students theses:
Sources
• Master Students theses: Saskia Adan, Corine van Baalen, Gerrit
•
Bloo, Margreet Bonouvrié, Nynke de Beer, Marlies Cromwijk, Marcha Fermina, Jean
Jaques Georges, Kees Goverde, Jolanda Hendriks, Nelly Kolk, Greta Kreuze, Harmieke
Medendorp, Ellen Mulder, Friede Simmens, Annelies Timmerman, Corrie Versluijs,
(Universiteit Utrecht ) and
Joke Blomme , Nancy Bouquez, Nadia Bouzegta, Bjorn Bruneel, Veerle Bulthé, AnneMarie Coolbrandt, Mieke Debrauwere, Yasmina De Block, Annelies De Grauwe,
Lisbeth Demarré, Astrid De Ridder, Ann Deryckere, Pascal De Waegemaeker, Nathalie
Deweirdt, Isabelle Dewettinck, Gert De Wilde, Veerle Duprez, Koen Gardeyn, Fleur
Gossiaux, Magalie Hiel, Leen Huysmans, Sylvian Leroux, Adeline Logghe, Wendy
Ongena, Lisbeth Parein, Jan Peeters, Soraja Rensen, Janneke Ronse, Oliver Schram,
Brigitte Seru, Jorgen Sioen, Christiane Snoeck, Julie Steenhaut, Marleen Stevens, Lieve
Van Acker, Lindsey Van Avermaet, Tina Vandecasteele, Katrien Vanderwee, Kathleen
Van de Velde, Ann Van Hecke, Kathleen Van Lancker, Sofie Van Maercke, Anne Van
Oost, Caroline Verschueren, Bram Vlaeminck, Sofie Vieren, Jeroen Vyncke, Marcia
Waterschoot (Ghent University) nog Gentse studenten toevoegen
There is a growing body of
qualitative research on living with
chronic illness, in nursing as well
as in medicine
Reasons for growing interest in
“illness experience” research
• Increased status of qualitative research
• growing number of chronically ill
• the increased status of chronically ill in
health care
• the increased awareness of the influence of
chronic disease on quality of life
• changed positions of “patients” in the health
care system
• ...
Reasons for growing interest in
“illness experience” research (2)
• ….
• Changes in the way nurses view their role
with regard to persons with chronically
illness
• In the near future: neuopsychoimmunological theory supports concern for
lived experience.
Findings from our studies
• Living with chronic illness
• Family members: more than care givers
• The relation with (nursing) care givers
Living with a chronic illness
• The diagnosis of a chronic illness brings
about an existential crisis. In the course of
the illness career such crises may occur
repeatedly. Patients cope with the crisis by
solving it or pushing it to the background.
Not everybody succeeds.
The diagnosis of chronic illness
• Doubt, uncertainty, anxiety
• “implosion of life (mg), one’s life
devastated
• Ambivalence: this is very grave but also
– it has a name, I can talk about it
– it is not “psychological”, it is not imagined
– it is limited, it is not something worse
The diagnosis of chronic illness
•
•
•
•
Doubt, uncertainty, anxiety
“implosion of life (mg), one’s life devastated
Ambivalence: this is very grave but also
Family members are equally affected and can
take two positions:
– this will show to be “nothing serious”
– I am concerned as you are
The first position is the more comfortable for them
The diagnosis of chronic illness
• Patients are very sensitive in this period.
• They clearly remember what happened, what
has been said, how health care providers
reacted, both supportive and offending
reactions
• Patients are offended when the way health
care providers (doctors) react do not match
their perceived seriousness of the situation.
Chronic illness: an existential crisis
• Life is affected in its foundations
– Death is now before the horizon
– It is uncertain how long one will live and how one
will live
– World views can be devastated
– “Why me? Is an unanswerable question
• Strong (in the eyes of the professionals “unrealistic” )
hope as a defense
Chronic illness: an existential crisis
• Life is affected in its foundations
• Acceptance: difficult but important
– Acceptance is not: taking for granted, or not feeling sad
– But: not fighting against or being angry about the
unavoidable
– Such acceptation creates room for positive experiences and a
positive outlook in life
– Acceptance requires letting go the “dreamed off life” which
one deserved or expected
– Acceptance allows reorientation towards reachable positive
goales
– Acceptance , therefore is empowering (Aujoulat)
Living with a chronic illness
• The diagnosis of a chronic illness brings
about an existential crisis.
• Uncertainty is a basic characteristic of life
– practical uncertainty
• Uncertainty about whether things will be happen as
they are planned, as they should
– existential uncertainty
• Uncertainty as how long one will live, how one will
live, who one will be, what one will be able to do,
perform, achieve, feel and think, and where one will
live
Living with a chronic illness
• The diagnosis of a chronic illness : source
of existential crisis.
• Uncertainty as basic characteristic of life
• Normalization as strategy
– trying to return to normal
– redefining normal
Living with a chronicl illness
• The diagnosis of a chronic illness brings
about an existential crisis.
• Uncertainty as basic characteristic of life
• Normalization as strategy
• Altered relationship to the body
Altered relation to the body
• The body is no longer the evident ally
• The body requires consideration, planning,
care
• It fails in critical moments
• Manipulation of the body can create
alienation
• Thoughtful and considerate care can restore
the relationship with the body
Living with a chronic illness
• The diagnosis of a chronic illness brings
about an existential crisis.
• Uncertainty as basic characteristic of life
• Normalization as strategy
• Altered relationship to the body
• ADL-activities become ADL-problems
ADL-activities become ADLproblems
• Daily life looses its routine character
• Unexpected problems continuously arise
and need to be solved
• Use of specific, experience based strategies
• Making deliberate choices, also to create
problems that later can be solved or taken
care of
• Professional care can facilitate things but
also make them worse
Two patterns of living with a
chronic illness
• Give up resistance and make room for
adapted goals
– Accept that life cannot be what is should or
could be, and adapt goals to limitations
– Manage disease in order to reach goals
– Being active and participative in managing
relation with professionals
Two patterns of living with a
chronic illness
• Give up resistance and make room for
striving towards reaching adapted goals
• Keeping feeling to be treated unjustly and
taking the role of victim
– Being a victim give rights: to consideration, and help as
one wants it
– Passivity towards professionals: waiting for them to do
the right things or active resistance (non compliance,
no show…)
– Dissatisfied with professional and non professional
help: they do not do what the need: provide cure and
make life normal.
Living with a chronic illness
• The diagnosis of a chronic illness brings about
an existential crisis.
• Uncertainty as basic characteristic of life
• Normalization as strategy
• Altered relationship to the body
• ADL-activities become ADL-problems
• Managing therapeutic regimens to balance
restrictions and conditions for living a
meaningful life
Managing therapeutic regimens
• Patients continuously try to balance
requirements of therapy with (their
perception of) what (else) contributes to
quality of life: lift life above disease
• Most patients do not simply “listen”, they do
not give precedence to “prescriptions”, but
try to find this balance. This is clearer in life
style prescriptions than in medication
• This is also true when the regimen is
negotiated, the result of shared decision, …
Managing therapeutic regimens
• There is a vast literature about how to help
patients be (more) adherent
• Nurses can play an important role in it using
specific evidence based interventions, often
in “nursing clinics” or nursing
consultations”
• But evidence based interventions are
usually successful in only part of the
population. There is still much room for
improvement
Managing therapeutic regimens
• Our studies show the importance of
acceptance (as defined above): acceptance
creates a basic stance towards required
measures. (Vervoort, 2009 )
Vervoort, S. C., Grypdonck, M. H., de, G. A., Hoepelman, A. I., &
Borleffs, J. C. (2009). Adherence to HAART: processes explaining
adherence behavior in acceptors and non-acceptors. AIDS Care, 21,
431-438.
Living with a chronicl illness
• The diagnsois of a chronic illness brings
about an existential crisis.
• Uncertainty as basic characteristic of life
• Normalization as strategy
• Altered relationship to the body
• Managing therapeutic regimens
• Managing care giving to maintain control
over one’s life
Managing care giving to maintain
control over one’s life
• Patients and family members consider themselves as the
managers of (professional) care(rs): they have to fit in
professional care in their life.
• The more intensive the care is, the more the need to fit
the care in one’s life, but the more difficult it is
• Nurses regard family care giving as a complement to
their care, patients and family members’ perception is
the reverse. They are likely right.
Family members: more than care
givers
• Family members go through existential
crises
– The existential crises family members go
through are very similar to those of the patients:
how is this possible, why does this happen to
us, what will life be, how long do we have
together
Family members: more than care
givers
• Family members go through existential
crises
• Family members suffer twice
– They suffer seeing or knowing the patient
suffering, knowing what he/she has to go
through or may have to go through, knowing
his/her life coming to an untimely end
Family members: more than care
givers
• Family members go through existential
crises
• Family members suffer twice
– They suffer seeing or knowing the patient
suffering
– They suffer because of their own (anticipated)
loss: their partner/child, the dreamed of life
together, the companionship, the prospect of
being alone, that what made life worthwhile
Family members: more than care
givers
• Family members go through existential crises
• Family members suffer twice
• Two ways of coping: as a family or as two
individuals
– Coping as a family: we have a problem, we
have to try diminish or solve it , and we have to
learn to bear the consequences
– Coping as two individuals: coping with the
consequences the best I can. Avoiding or
negating to create problems for the other.
Family members: more than care
givers
• Family members go through existential crises
• Family members suffer twice
• Two ways of coping: as a family or as two individuals
• Love and duty as motives for care
– Sometimes difficult to distinguish because
similar language is used in both
– Both have particular influence on nature of
“burden” but both can create excessive burden.
The relationship with
professional care givers
• Nursing care as necessary evil
– People with chronic illness and their families
are grateful for care given but they would very
much prefer not to need this care
– They often refrain from available care in order
to preserve control over one’s life.
The relations hip with
professional care givers
• Nursing care as necessary evil
• Limitation of privacy as greatest burden
The relations hip with
professional care givers
• Nursing care as necessary evil
• Limitation of privacy as greatest burden
• the difficult patients who cannot be grateful
Theoretical Conclusions
• Living with a chronic illness
• Professional care of a person with a chronic
illness
Theoretical Conclusions:
Living with a chronic illness
• Chronic disease as an existential
phenomenon
Theoretical Conclusions:
Living with a chronic illness
• Chronic disease as an existential
phenomenon
• Two patterns of living with a chronic illness
Theoretical Conclusions:
Living with a chronic illness
• Chronic disease as an existential
phenomenon
• Two patterns of living with a chronic illness
• Chronic illness is a family affair
Theoretical Conclusions:
The role of professional care givers
• To support the patient to lift live above
illness: the mission of professional care
Theoretical Conclusions:
The role of professional care givers: to
lift live above disease
• To help the person with a chronic illness
and his family members to give the illness a
place in their life(s)
Theoretical Conclusions:
The role of professional care givers: to
lift live above disease
• To help patient and family coming to terms
with the illness
• To help the person and his family in their
struggle for daily life
Theoretical Conclusions:
The role of professional care givers: to
lift live above disease
• To help patient and family coming to terms
with the illness
• To help the person and his family in their
struggle for daily life
• To help the person with the management of
his therapeutic regimen
Theoretical Conclusions:
The role of professional care givers: to
lift live above disease
• To help person and family coming to terms
with the illness
• To help the person and his family in their
struggle for daily life
• To help the person with the management of
his therapeutic regimen
• To help the person and his family with the
management of his care