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Why do nurses want to know about the individual experience of illness?
Modern medicine (including public health approaches) has been heavily criticised for
objectifying and dehumanising patients
What is Patient/Person Centred Care (PCC)
PCC places the person not the health professional at the centre of care.
PCC humanises care by focusing on the persons history and biography of illness
and care. It emphasises the right of the person to choose and to be active in their
own care and supports individuals rights, values and beliefs.
why it matters ?
1. Better recovery
2. Better emotional health
3. Less suicide
So if we focus on the biological aspect of a disease we can easily forget the person.
This may lead us to engage in care that is considered dehumanising by our patients
What is qualitative research?
Research that derives data from observation, interviews, or verbal interactions and
focuses on the meanings and interpretations of the participants
Modern medicine objectifies and dehumanises patients, alienating self from body...
it disregards the patient as anything but a possessor of the body of illness
Postmodern times:
when the capacity for telling ones own story is reclaimed
Illness is understood as deeply embedded in a uniquely experienced life
Postmodern narratives are not dominated by any one metanarrative
Practical consciousness
Protects the individual from existential insecurity.
Shared assumptions about time, space, continuity and identity
Not necessarily a conscious state
Trust is the emotion that underpins this state: trust in future.
Biographical Disruption
Chronic illness conceptualised as a disruptive event
Onset of chronic illness can be insidious Diagnosis a defining moment
Etiology may be unknown
May be invisible
Pain, suffering and death, which was normally seen at a distance, the plight of others,
comes to shatter their hopes and plans.
Loss of destination and map
How knowing this impacts on nursing practice:
tells how this will impact on patient
counselling to pt when diagnosed
ongoing support
Uncertainity A feature of chronic illness. Often underpinned by lack of
knowledge about disease etiology
Exists when: Situations are ambiguous, complex, unpredictable. Information is
unavailable, risk assessment.
Emotionality:
Fear of illness
Fear of death
Fear of loss
Fear of dying
How knowing this impacts on nursing practice:
- uncertainty can lead to anxiety and fear-upset pt
we can offer hope and reassurance
STIGMA
An undesired differentness
discredited
discreditable
How knowing this impacts on nursing practice:
we understand the issue of stigma- we dont make it the pt problem
we also understand the stigma can impact in a persons life in a way that
impacts on health outcomes:
Social isolation
Discrimination
Loss of self-confidence
Changed self-image
Lack of trust
Secretiveness
we can act to reduce stigma in service and within society
we can listen to peoples experience of stigma and feelings of shame.
We can connect people with support.
we also know that people may not be coping- so we check in.
Loss
identity
Relationships/sexuality
Employment- economic
Freedom
Imagined future
loss of former self crumbles
How knowing this impacts on nursing practice:
We consider the issue of grief
-we act to reduce losses
Narrative of illness
Narrative reconstruction- people recreate a sense of coherence, stability and
order
reconstruct meaning (example: in drama or act)
may use art, music, writing,story telling etc.
How knowing this impacts on nursing practice:
we make time to sit with people and listen to their stories
by listening we understand that the person may be engaged in a narrative
reconstruction (eg. They are trying to make sense of their situation)
we understand that we dont need to interrupt this process but assist it.
Stigma in Health care
Stigma: the phenomenon whereby an individual with an attribute which is
deeply discredited by his/her society is rejected as a result of the attribute.
it involves a process that is enacted through the attitudes and actions of the
rest of the society
this is made up of othering , blaming and shaming.
Discrimination
Discrimination occurs when stigmatisation is acted on by concrete behaviours
such as exclusion, rejection, or devaluation. Discrimination can take place on a
personal level or be enacted through societal and structural inequalities.
Aspects of stigma
Self-stigma/Internalised stigma: negative feelings about self-resulting
from persons experiences, perceptions, or anticipation of negative social
reactions due to membership of a stigmatised group
Social stigma: the phenomenon of large social groups endorsing
stereotypes about and acting against a stigmatised group
Structural stigma: rules, policies and procedures of institutions that
restrict the rights and opportunities for members of a stigmatised group.
why do we stigmatise?
In order to define ourselves, we need to define others as outsiders.
Stigma theory
We create a stigma theory, rationalising why someone with stigma is
inferior.
Assumption may be made about a person with stigma e.g. speaking
loudly to a person with vision impairment, or patronisingly to an older
person.
Defensive responses to these assumption are then incorporated into our
stigma theory so that they may reinforce the idea that the person with
stigma is other.
Enacting Stigma
1. Labelling: Personal characteristics are signalled to show an important
difference between the person who stigmatises and the stigmatised.
2. Stereotyping: the labelled differences are associated with undesirable
characteristics
3. Separating- Us & Them : Categorically distinguishing or separating
between the mainstream group and the labelled group, perceiving the
labelled group as fundamentally different.
4. Status loss/ Discrimination: The labelled group is them devalued, rejected
and excluded through the process of status loss or discrimination.
Element of stigma in Anxiety and Depression
Perceptions that a person is weak, not sick
Perceived dangerousness
Beliefs that a person is responsible and can control his/her condition
Feeling of guilt, shame and embarrassment
Reluctance to disclose a diagnosis, due to concerns about discrimination
and harassment
A desire for social distance
Code of ethics for nurses in Australia
Nurses value and accept diversity among their colleagues and acknowledge the need
for non-discriminatory interpersonal and inter professional relationships.
Nurses valuing non-harmful, non-discriminatory care provide nursing care
appropriate to the individual that recognises their particular needs and rights. They
seek to eliminate prejudicial attitudes concerning personal characteristics such as race,
ethnicity, culture, gender, sexuality, religion, spirituality, disability, age and
economic, social or health status.
Nurses promote the provision of quality nursing and health care to all members of the
community and oppose stigmatising or harmful discriminatory beliefs or actions.
A notation in a record or a document used for health care communication can have a
powerful positive or negative impact on the quality of care received by a person.
These effects can be long lasting, either through ensuring the provision of quality
care, or through enshrining stigma, stereotyping and judgement in health care
decision-making and health care provision experienced by a person.
Addressing Stigma
Knowledge/education
o Important for patients, families and healthcare staff
o Dispelling myths
o Knowing about context
Contact
o Meeting and getting to know the lives of people form stigmatised groups
o Humanising the othered
Advocacy
o Combating stigma at social or structural level
The care in Healthcare: The logic of compassion and the problems of maintaining distance
Nurses work in a domain where human suffering is evidently present
Nurses work is to be near to the person who is suffering
PCC is about developing a relationship built on trust and understanding
Connecting with our patients to achieve PCC
o Connection: feel in tune with your patients situation
o Unsuccessful connection: Patient feels shame, insecurity, embarrassment, annoyed;
communication breaks down.
Compassion: The bridge between the individual and the community. It unites people
during times of suffering and distress, even though it cannot take suffering away. The
humane quality of understanding suffering and wanting to do something about it.
Compassionate care
Compassion may motivate nurses to do heroic action
Compassion is also played out in small everyday actions of care
o Mutual understanding
o Attunement to the feelings and experiences of others
o Cleaning, feeding, comforting as a way of reconnecting the patient to the
ordinary
o Empathic communication
Nursing can provide the bridge back to the dear ordinary
if the intense pain is world-destroying , one of the ways nurses respond to that loss is by re-
enacting the commonplace through daily, accumulating acts of care.
Dear ordinary--Cultural work of nursing may be, in part, to respond to the world-emptying
experience of pain and reconnect to the world-emptying experience of pain and reconnect
badly damaged people to everyday things and routines.
Such care poses a critique of medicines emphasis on the exceptional moment and stresses
forms of physical tending that are quotidian (everyday) rather than heroic, ongoing rather
than permanent or conclusive.
Compassion Vs Reason
Compassion has been described an emotion/sentiment without
logichas led undervaluing of compassionate response as having
nothing valuable to contribute to public reasoning
Yet, compassion has a cognitive element as well as an emotional
element.
The 3 logics of compassion
1. Suffering is serious: That the suffering is not trivial.
2. The person is not at fault: That the suffering was not the result of the persons own
culpable actions.
3. It could be me- Imagination: That the person feeling compassion understands that
they could experience the same kind of suffering.
Volition and Compassion
Compassion is also a decision:
o To understand the significance of the suffering
o To let go of judgement (fault)
o To imagine, to put yourself in the persons position
the nurse acts:
Emotional labour/work
o Surface acting: Suppressing or disguising our real emotions to maintain a clam
demeanour
o Deep acting: inducing real emotions and connection.
why should we be compassionate?
Its a big ask- Compassion requires a great deal of cognitive and emotion work- i.e. effort.
We must make a choice to acknowledge suffering and work to understand it, and then
we have to feel it.
If we are doing out work of caring for the patient, is it really necessary?
Patients want us to be connected and compassionate
Patients view of a good nurse:
o PCC not task centred
o Anticipate needs
o Provide information
o Is attending
the meaning of compassion to the patient:
without compassion the person can experience more suffering, patient find hard to get
strength and patients feel depressed.
Compassion is acknowledgement of suffering: offers comfort/supportive/caring,
person feels that they are not alone, and patient outcomes are improved- shorter stays
etc.
Cost of compassion to nurses?
Personal cost
Painful for nurses
Kept nurses away from patients who need compassion
compassion and burn out
workplace factors
distance from pt due to high stress in work environment
task oriented nursing than compassion
long shifts
staffing issue
poor leadership of NUM
conflict wih
medical team
family members
NUM
Benefit of connecting through compassion:
Own personal good
Give meaning to nursing work
Saves time, pt are more satisfied
Co-worker support
Person Centred Communication Skills
Developing effective relationships in healthcare
interpersonal communication
Working with emotions in healthcare- Emotional Labour (EL)
EL Management of emotions in the context of paid work
Induction or suppression of feeling to sustain outer appearance that results in
others feeling cared for in a safe place (Hochschild ,1983)
p Surface acting: disguising what we feel/pretending emotion
p Deep acting: spontaneous expression of real, self-induced
feelings
Instrumental, collegial, and therapeutic EL
Instrumental EL-
Carried out as a direct result of a clinical nursing intervention goal-
oriented action. eg. as part of giving an injection
Purpose = to successfully facilitate the procedure in a way that minimises pain
& discomfort & maximises healing
Use of interpersonal skills to make process as comfortable as possible, to
make person feel safe & cared for
Collegial EL
Relationships nurses have with each other & within multidisciplinary team
Nurses as fixed & constant in many settings act as communication
conduits through whom important information is processed
Includes conversing with colleagues in presence of patients and relatives
Purpose = to promote effective communication between nurse & colleagues to
facilitate nursing care
Therapeutic EL
Intention to establish or maintain the interpersonal relationship in order to
promote psychological/emotional wellbeing of patient
Role of listening, & providing safe place to express feelings for patients ie.
interpersonal communication
eg. giving information and educating about health/illness
Emotional intelligence
p Effective management of self and others emotions = emotional intelligence
p Ability to perceive emotion, integrate emotion to facilitate thought, understand
emotions, & to regulate emotions to promote personal growth (Mayer & Salovey,
1997)
p In nursing - an intelligence allowing for self-awareness & management, empathy,
reflexivity & communication as well as leadership, collaboration & relatedness
The accidental counsellor
p Person not employed as a counsellor but finds themselves in counselling role due to
issues arising or requests for help
p Nurses not (generally) counsellors, but constantly use counselling skills
(including microskills) when communicating with patients & family, particularly
those in emotional distress.
p These are also the fundamental skills which mental health nurses use and extend upon
in their interpersonal work
Necessary skills in healthcare
p Geldard & Geldard (2005) use an integrative approach to therapeutic communication
p Most importantly:
n Joining with the person in distress and listening
n Remembering the importance of the therapeutic relationship
n Using skills purposefully and proficiently
Using microskills:
Rogerian skills (based on Carl Rogers, 1961):
n Joining and listening (SOLER)
n Reflection of content (paraphrasing)
n Reflection of feelings
n Reflection of content and feelings
n Use and abuse of questions ( open and closed questions , dont ask why )
n Summarizing
Key aims of effective communication
1. Listen actively with intent to understand
2. Gain an understanding of the issue/s or concerns
3. Provide emotional support
4. Assist person to find own solutions & strategies
Person-Centred Dementia Care
Dementia is a syndrome that affects memory, thinking, behaviour and ability to perform
everyday activities.
-> Psychosocial Theory of Personhood in Dementia
The Theory proposes that distinctive psychosocial environment surrounding the
person leads to reduction or destruction of the person as a whole
Personhood involves feelings, action, belonging, attachment to others, identity, and
achieving ones potential
If quality of care is not good at a psychological level most persons with dementia will
move downwards into some stage of enduring ill-being
The PCC Challenge
Traditional constructions of dementia focused on neurodegenerative changes and that
which is lost through the illness.
There is a belief that the self is gradually lost in a dementing illness.
This leads to a social death whereby people are treated as if they are not there
Common Care Practices
DISTRACTING and/or IGNORING the person
Little or no attempt to ENGAGE with the persons feelings and needs
DISBELIEF that care practices contribute to distress and problematic behaviours
No understanding that PHYSICAL CARE ENVIRONMENT can lead to ill-being and
problematic behaviour
Little attempt to draw on the persons UNIQUE LIFE EXPERIENCE in care
planning.
Overview of CADRES and PerCEN studies
Decreased agitation
Improved quality of life
Improved quality of care
Positive responses to care
Feelings and Dementia
Feelings are universal, although their expression can be cultural
People with dementia remain able to feel.
Although their emotional reactions and responses may be exaggerated they are
usually appropriate to the situationas they are experiencing it.
Engaging on an emotional level can be comforting in and of itself
Implicit Memory
Unconscious memory that is unavailable to direct recall
Effects of previous experiences on subsequent behaviour, without conscious
recollection of specific episodes
Function can be sustained in dementia through interventions and environments that
activate implicit memory
Nostalgia
Activates positive states
Reminds people that they have/had others that cared for them
Communication: Challenges within ICU and ED
Experience of the patient:
Being present
Acknowledging the individual
Identifying their needs
Clarifying misconceptions
Empowering the individual
But how ?
Active speaking and listening (SOLER)
What not to say.
Giving advice/fixing
Analysing: interpreting or evaluation persons behaviour
Storytelling
Sympathy
Reassuring- dont say things will get better
shutting down: try to shift pt feeling in other direction
correcting
interrogating
Commiserating- agreeing with the speakers judgements of others
One-upping: Convincing the speaker that whatever they went through, you had it worse.
Effective empathetic communication
Identify the feeling your patient is experiencing
Reflect on how this makes you feel witnessing this
Reflect on how your patient might be feeling having you witnessed this; --What can you
observe? what arent they saying?
State what you have perceived- "It sounds like you're upset about ... the test results
Acknowledge and legitimize your patients feelings;
Respect the other person
Advocate for your patient- "Let's see what we can do together to get you up and
mobilising
Conceptualising the nurse-patient relationship
Nurses have more contact with pt than another health professional.
Nurses remain the most trusted professional group in society
Nurses have significant education and advocacy roles.
Emotional management remains a significant component of nurse-patient interactions
Emotional intelligence is critical
Bulk of nursing work is focused on illness rather than health.
Nature of nurse-patient relationships
Effects of policies of economic rationalism
Cost effectiveness
Moral and ethical concerns
Nurse-sensitive patient outcomes
Plurality of vies
Variety of settings
effective nurse-patient relationship
Informed by range of different bodies of knowledge
Balancing of:
o Available resources
o Clinical imperatives
o Ethical concerns
o Focus on patient well-being
Person-centred Nursing processes:
Working with patients belief and values
Engagement
Sharing decision making
Providing for physical needs
Person-focused rather than task focused
Reconceptualising the nurse-patient relationship (Hagerty & Patusky (2003)
Section 1: Aim
o Propose a new framework for thinking about nurse patient relationship
o Response to recent changes in health care system
o Shorter hospital stays
o Increased focus on technology
Section 2: Historical assumption about the nurse patient relationship
o Linearity: questioning assumption that encounters over time are necessary for
a productive relationship
o Trust: questioning assumption that successful Nurse patient relationship
requires foundation of trust
o Time: questioning assumption that time is required to deliver necessary
nursing care; effect of early discharge etc.
o Role expectations
Section3: Theory of human relatedness:
o This is the theory that the authors use as the basis for their new way of
thinking about the NPR
o Interactions produce comfort or discomfort
o Four states of relatedness
Connection
Disconnection
Enmeshment
Parallelism
How is the theory useful for Nurse patient relationship today?
It is situation specific
Linearity not important-each interaction is an opportunity for connection
Minimises emphasis on trust
Decreases emphasis on time and increases emphasis on current interaction
Emphasises reciprocity (equity); sense of belonging; mutuality; synchronicity
Preserving integrity
Minimising risk of physical or emotional harm
Enabling patients to retain their dignity
Recognising patient individuality
Helping patients to retain as much control as possible
Nurse-patient relationship in the community
Caring for people in community setting is a complex process of negotiating issues of
trust, legitimacy, authority, autonomy, competence and vulnerability
Last lecture
Managing illness, Pain and Suffering
Illness
Holistic experience
Affective
Evaluative
Behavioural
Embodied
Social
Boorse (2004):
undesirable: suffering and incapacitation;
entitles sufferer to special treatment;
justifies normally criticizable behaviour
Socially constructed culturally specific, gendered, legitimate or illegitimate
Disease?
Pain
IASP definition: An unpleasant sensory and emotional experience associated with
actual or potential tissue damage, or described in terms of such damage (1979)
Melzack (1999)
Sensory-discriminative component
Evaluative-cognitive component
Affective-motivational component
Behavioural component?
Communicative component?
Social component?
Contextual component?
Suffering
Suffering is experienced by persons
Suffering occurs when an impending destruction of the person is perceived
Suffering can occur in relation to any aspect of a person
Scenario 2 Medically Unexplained Abdominal Pain: Sue
Dualist Paradigm
EITHER OR
Physical Psychological
Organic Functional
Real All in the mind
Victim Responsible
Legitimate Illegitimate
Sick role Stigmatisation
Acceptance & Commitment for the ill and for their caregivers
Rather than fight illness and suffering, accept them, and remain mindful in
their experience
Remain aware of your values, and cherished people and activities in your life
Commit to acting in accordance with those values (moving towards reward), rather
than acting to fearfully avoid suffering (moving away from punishment)
