Transcript Psychosocial Issues Associated with Acquired Disabilities

Psychosocial Issues Associated
with Acquired Disabilities
Mr. Frank McDonald
Psychologist Consultation-Liaison Service – The Townsville Hospital
Dr. Joann Lukins
Psychologist Peak Performance Psychology Pty Ltd
This presentation: www.fmcdonald.com
Goals
1.
2.
3.
4.
5.
Examine short & long term broad consequences
of acquired disability
Raise awareness of impact of acquired injury
on specific aspects of psychosocial functioning of
individual & family & friends
Increase awareness of mental health issues
associated with acquired disability
Highlight role of Allied Health staff in identifying &
addressing psychosocial functioning
Provide specific strategies to address issues
related to psychosocial functioning
Our expectations of this
workshop
• Aim: improve your tertiary
prevention of Acquired
Disability – retard its
progression & prevent
further disability – using
principles & practices of
psychological rehabilitation
Our expectations of this
workshop
This will be achieved by
1. broadening your understanding
of adjustment reactions to
Acquired Disability - how & why
some cope & others don’t
2. presenting options to help apply
this understanding via
psychosocial interventions that
aid better adjustment - what
individuals, family, friends,
therapists & communities can
do to help adapting & coping
Learning outcomes
1. You will be better able to
appreciate the range of
ways people react to AD,
initially & long term
2. You will be better able to
suggest what can be
done to help people
cope effectively with
identified psychosocial
problems
Form a triad …
• Share with your group some personal
information about yourself, your dreams
and some of your aspirations. You may
refer to your career, family, relationships,
education, hobbies,travel etc.
Disabilities randomly allocated …
• Given your acquired disability, describe
your life now … how have your dreams
and aspirations been affected?
Discuss in small and large group . . .
Prologue
Goal 1: Examining the broad issues of AD
•Acquired Disability defined
•Types of Acquired Disability
•How they may be acquired
•Areas of adjustment – the bigger picture
•Rationale for focus on psychosocial rehabilitation
Acquired disability…
• “An ongoing or permanent condition
a person has received as a result of
illness or accident . . .
• a condition may be stable, requiring
only initial adjustment or it may
progress to a debilitating level over
time”
Australian Federal Office of Equal Employment Opportunity
Types of disability
• Intellectual or
Learning
• Medical
• Physical
• Psychiatric
• Neurological
• Communication
How disabilities may be
acquired
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Prenatal
Congenital
Postnatal
Adventitious
Illness
Abuse/neglect
Late onset of
genetically
acquired disability
Acquired Disability –
levels of impact
Spiritual/
existential
Psychological
Social & Occupational
Physical
Types of adjustment problems in AD
• Physical – being unable to cope
with functional aspects of
disability, loss of control of basic
physical functions, pain, health
changes
• Social – difficulty with losing
activities that give sense of
pleasure & identity &
achievement, finding new ones
& coping with changed
relationships with family, friends &
sexual partners, loneliness &
isolation
• Occupational – difficulty revising
educational & career plans or
finding new job
• Emotional – high levels of denial,
anxiety, grief, depression,
aggression against staff
• Motivational – failure to comply
with therapist- & selfmanagement, loss of initiative
• Self-concept – inability to accept
changed body image, selfesteem, levels of competence
• Existential/spiritual – Without
sense of meaning & purpose AD
can be an unbearable burden.
When usual sources threatened or
diminished “Why go on?”
questions arise
Why psychosocial impact of AD
is an important consideration
1. High prevalence of psychological distress in AD wrought by often seemingly intolerable, devastating
changes & adversities
Most who treat, work & live with those with AD share
humanitarian concern to prevent or reduce this
distress & social impacts
But pts with psychosocial adjustment problems can
distress health carers, often because pts
misunderstood – can be poorly serviced as result – in
turn resulting in high dissatisfaction with rehab
Why psychosocial impact of AD
is an important consideration
2.
3.
4.
Distress adds to existing impacts upon work,
personal relations, leisure & social activities & so
well-being & QoL suffers. Sets up ‘vicious cycle’
effect
Unmanaged psychosocial adjustment problems
interfere with self-care & physical rehab. One of
most significant barriers to rehab outcomes!
Left unattended, psychological & social effects
usually worsen. Costs increase, both emotionally &
financially e.g. repeated health service utilisation
~ Patiently adjust, amend & heal.
- Thomas Hardy
Adjusting
Goal 2: Awareness of impact of AD on specific aspects of
psychosocial functioning of individual & family & friends
•Initial & ongoing emotional reactions to AD
Initial reactions
• Early responses to AD usually involve mixture of
anxiety & depressed mood
• Worry & uncertainty about ability to cope with
changes - usually high in early stages & short bursts.
Diagnoses can produce shock & denial
• Denial & other avoidance strategies can be useful
to help absorb the shock
• But, in excess, affects physical & psychological wellbeing e.g. not absorbing or applying info that aids
recovery or prevents health problems
Initial reactions
• Depressed mood: some say peaks shortly after
diagnosis
• Others say when realise full extent of their disability
& after many frustrating experiences. Can take
more than a year to fully emerge
• Unlike anxiety which tends to appear in short-lived
cycles, mood problems can be a long-term issue in
AD lasting more than a year in many illnesses.
Others though report cycles of despair &
acceptance that can vary in length from less than 2
weeks to months
Common emotional reactions to
acquired disability
• Confusion, denial & disbelief
• Anxiety, fear of losing
control
• Helplessness, hopelessness
• Panic
• Inadequacy & humiliation & despair
• Disorganisation
• Anger & frustration,
• Fatigue & lethargy
resentment
• Loss of interests
• Sadness & crying
• Withdrawal
• Guilt
• Loneliness, isolation &
abandonment
~A man who has thought about the human state should be pessimistic,
but the only spirit compatible with human dignity is optimism.
- Coleridge
Adjusting
Goal 2: Awareness of impact of acquired injury on
specific aspects of psychosocial functioning of
individual & family & friends
•Personal & environmental resources that determine
reactions: coping skills, personalities, beliefs &
assumptions (‘schemas’), social supports –
Comparisons of those who do & don’t cope
•Empirical & other predictors of coping
•Grief v. Depression
Who copes?
Strategies used by people who manage in the
face of chronic illness
• Distancing – try to detach from stress of
situation (“I didn’t let it get to me.
I refused to think about it too much”)
• Positive focus – try to see the positives in their
situation/find meaning e.g. personal growth
(“I came out of the experience better than
when I went in”)
Who copes?
Strategies used by people who manage in the
face of chronic illness
• Seek out social support – have skills, access &
receive encouragement to do so. (“The
rehab people helped me find someone to
talk to so I could find out more about my
situation.”)
• If done in ways that don’t drive people away,
connecting with family, friends, organisations
can result in people living longer, adjusting
more positively, improving health habits (e.g.
sticking to medical routines) & use health
services appropriately
Who copes?
Strategies used by people who manage in the
face of chronic illness
• Denial is used sparingly e.g. in early stages
• Problem-solving focus (“I’ll figure out ways, or
find out what others do, to deal with the
specific effects of the condition”) on aspects
of illness amenable to change but …
• Use emotion-focused coping techniques (e.g.
calming strategies) for aspects that can’t be
controlled
• So flexible use of coping strategies – “try to
change the things I can & accept the things
I can’t”
Who copes?
Strategies used by people who manage in the
face of chronic illness
• Open to ‘self-management’ view of illness
that complements efforts of doctors,
therapists, & carers
– Constructive schemas like “It’s not my fault
that this happened to me. Factors outside my
control lead to this illness but I do have a
responsibility to help in my rehabilitation &
care, as challenging as that will be. I can
exert some control over the effects of this
illness”
Who doesn’t cope?
Warning signs that your pt may have trouble
coping
• Lots of ‘escape fantasies’ or
wishful/magical thinking e.g. “I wish
that the situation would go away.”
• Avoidance efforts – overeating, overdrinking, excessive smoking, overuse of
medication
• Lots of self-blame, helplessness or
anger/blaming others
Who doesn’t cope?
Warning signs that your pt may have trouble
coping
• Passive acceptance (vs. actively adjusting
lifestyle to make best of situation), forgetting
illness, fatalistic views of illness, withdrawal
from others e.g. making doctors, pharmacy
& therapists centre of their world
• Unable to access supportive networks in
community as adjustment problems arise
• Unhelpful schemas e.g. about health “No
pain means no problem. No need to get
blood pressure checked.”)
Stages in Evolution of Family Reactions
to a Brain-Injured Member (Lezak, 1980)
Empirical predictors of poor
adjustment prior to disability
• Previous treatment failures
• Psychopathology & personality disorders
• Dependency traits
• Depression
• Emotional immaturity
Empirical predictors of poor
adjustment following disability
• Increased reinforcement of illness v wellness
• Absence of social support from significant
others
• Anger or resentment
• Fear of failure
• Loss of self-efficacy/self-esteem
• External locus of control
• Fear of pain
Other factors that affect
psychological adjustment
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Pain
Medication
Isolation
Boredom
Medical complications & body image
Cognitive problems/TBI
Family/Friends/Social support
Visible vs non-visible acquired disability
Psychological consequences of
Acquired Disability
Grief response v. depression
• Full clinical depression not an essential part of
adjustment
• Grieving generally dissipates over time & focuses on
disability (e.g. lost limb) though in AD it often recurs after
it dissipates. People with AD often report cycles of
despair & acceptance
• Depression has a self-critical focus with feelings of
worthlessness, hopelessness & withdrawal from others
• Someone with depression is seriously distressed & not
coping
Phases of grief
• In many forms of AD characteristics of grief, its phases
& elements, should be seen as chronic & recurring not in a time-limited, lock-step linear fashion
• Can set up perilous expectations for all if grief seen
too simply as stages that permanently end, sooner or
later. ‘Failure’ to do so can oppress people into
‘adjusting’ &‘accepting the unacceptable’
• So consider these only as rough guide
(See handout for expansion)
– Avoidance
– Confrontation
– Re-establishment
To be heard is profoundly healing.
- Moshe Lang
Adjusting
Goal 3: Awareness of mental health issues
•When coping doesn’t happen –
mental health issues to be on the alert for
with suggestions for management
Mental health issues sometimes
associated with Acquired Disability
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Depression
Anxiety (including PTSD)
Adjustment disorder
Substance use
Denial of deficits (anasognosia/anosodiaphoria)
Social withdrawal & amotivational states
Behavioural disorders
Risk factors for suicide
• Depression
• Anger & aggression
• Alcohol & other
drug abuse
throughout
hospitalisation
• Pre-morbid
psychiatric illness
• Past suicide
attempts
• Male
• Chronic pain
• Multiple medical
problems
• Isolation
• Schizophrenia
• Expressions of
hopelessness
• Family disintegration
Management
• If an individual expresses suicidal ideation,
ensure person’s immediate safety
• Obtain an urgent psychiatric consultation if
person’s immediate safety at risk
• Determine appropriate setting of care
• Treat underlying problems such as depression,
substance abuse, pain, etc
Management
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Involve family & friends where possible
Regular observation of the person is important
Active listening by staff
Encourage expression of feelings &
encourage active coping
• Help with maintenance of health (e.g.
hygiene, nutrition, bowel & bladder) programs
while the person is in depressed state
Management of acute stress
reactions
• Referral to GP/Psychologist/Psychiatrist
for assessment
• Normalise reaction
• Encourage person to talk
• Time
• Social support
Management of depression
• Referral to GP/Psychologist/Psychiatrist
for assessment
• Individually managed treatment plan
• Be aware of stigma & bias against
people with mental health issues
Management of suicide
• Ensure immediate safety
• Psychiatric consultation if necessary
• Involve others (eg. family/friends)
where appropriate
• Use active listening skills
• Encourage feelings & encourage
active coping
Management of PTSD
• Referral to GP/Psychologist/Psychiatrist
for assessment
• Treatment in this areas is specialised
Management of Adjustment
Disorder
• Offer a supportive relationship
• Encourage control of negative thoughts
• Assist & encourage problem solving
• Encourage involvement in positive
activities
• Promote health maintenance
~ Words are, of course, the most powerful drug used by mankind.
- Rudyard Kipling
Psychosocial Intervention
Strategies
Goal 4: Role of Allied Health staff in identifying &
addressing psychosocial functioning
•Your professional & personal input
Your professional & personal input
• So, in chronic illness & AD, problem is not
just disease (biomedical aspects) – but
pressure to cope
• Everyone with chronic illness & AD suffers
psychologically & socially – degree
depends on number & intensity of
challenges faced
Your professional & personal input
•
How can we help patients meet
psychosocial needs?
• 3 levels:
i. your professional & personal input
ii. encouraging & supporting self-management
iii. specific psychological strategies shown to
alleviate condition & associated problems
Your professional & personal input
• Professional contributions can significantly
improve patients’ psychological state:
1. Patients’ sense of control & esteem can be
heightened by progress & improvements
with physical therapy, exercise, speech
therapy, occupational therapy &
medications
Your professional & personal input
2. Patients benefit from attentions of
concerted professional team
approach e.g. primary care
physicians & nurse educators
• Appreciate being able to discuss &
manage their various concerns with
appropriate range of specialists
Your professional & personal input
• First thing pt & family need to adapt is
correct information about their disability, its
prognosis & treatment. Can prevent or
reduce significant anxiety, give direction &
hope
• Assistance with goal-setting e.g. graphical
or verbal feedback about progress towards
goals because pts often don’t notice
Your professional & personal input
• Personal contributions also can significantly improve
patients’ psychological state
• Patients do better with professionals whom they say:
“generally are able to empathise & communicate a
sense of how difficult things must be”
“are willing to listen & my answer questions without
judging me – allowing me to be more informed &
knowledgeable about my illness”
Your professional & personal input
• “see me as a whole person - not a disease.
They see me not just from the perspective of
their profession”
• “enquire about common problem areas
associated with my illness & so might ask
‘This illness may affect the things you feel
you are capable of doing & in turn your selfesteem. How are going in that area?’ ”
Your professional & personal input
• “are willing to bring up issues I may be
reluctant to – like sexuality or the anger /
‘ why me ? stuff ’ I was half-denying”
• “give a sense of hope to recently diagnosed
pts about the promise of new therapies &
treatments. They understand the
importance of conveying a positive
attitude”
Your professional & personal input
• “enquire about degree of support &
understanding from partner, family, friends
or boss”
• “refer to other professionals, like psychiatrists
or psychologists, when they do not have the
time or skills to get into things - without
implying ‘you’re not coping with this as well
as you should’ ”
Your professional & personal input
• Referral options –
Pts with specific health problems can
get info thru their doctors, local
community service agencies, national
organisations for particular conditions
• Group generated list of useful referral
points
~ Loneliness is not a longing for
company; it is a longing for kind.
- Marilyn French
Psychosocial Intervention
Strategies
Goal 5: Specific strategies to address issues related to
psychosocial functioning
•Encouraging & supporting self-management
e.g. unhooking from therapists & linking to social network
•Psychological approaches
Encouraging & supporting
self-management
• Patients who adopt a selfmanagement approach, to augment
professional management, fare better
with their condition
• Subjective experiences like degree of
suffering/emotional components of
pain diminish
Encouraging & supporting
self-management
• Self-management skills can include:
 Self-education. Learning as much as possible about
condition. Becoming ‘expert’ at understanding &
managing pain e.g. appropriate use of medication
 Adopting an internal locus of control attitude.
Open, experimental & “I control me” not “it (pain)
or they (doctors) …” attitude
 Extending coping/self-care skills: Balancing
relaxation (mental, physical, behavioural skills) with
activity (↑ pacing + ↑ movement + ↑ occupation)
Encouraging & supporting
self-management
• Following slide (using RA as example)
graphically illustrates important place of
self-management
• Higher-level treatments tend to be less
effective if there are problems at lower
levels
Psychological approaches
• Ideally intervention programs involve
interdisciplinary teams of professional –
doctors & nurses; speech, physical &
occupational therapists; social workers;
vocational counsellors & psychologists
• Psychological contributions largely focus on
moderating psychosocial impacts (e.g. thru
enhancing participation & adherence,
emotion focused strategies) with counselling
techniques, behavioural & cognitive
principles that have produced many useful
interventions
Specific psychological strategies
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•
All good psychological interventions begin
with assessment of full range of relevant
variables (most important step in
management of chronic conditions!)
e.g. behavioural or functional analysis
Many psychosocial measures of adaptation
exist but are underutilised in rehabilitation.
See handouts (‘Outcome Measures for
Disability Populations’) or go to
http://www.crowdbcm.net/measures/Measures_index.htm
Specific psychological strategies
• Anxiety management (e.g. coping with worry
strategies – catastrophe scale, stimulus control
techniques, problem-solving/ ‘decatastrophising’
etc.)
• Coping strategies for symptoms of disease e.g.
via sleep-wake cycle therapy
• Increasing either mastery or pleasure activities to
at least one per day to counter self-esteem &
mood problems (See Activity scheduling/pleasant
events handout)
Specific psychological strategies
• Behavioural contracting, +’ve & –’ve
reinforcement contingencies for prosocial behaviours (See handout)
• Environmental cueing – using prompts &
reminders
• Pt self-monitoring of self-care activity +
rewards e.g. diabetes adherence
Specific psychological strategies
• Cognitive therapy for distortions that can
aggravate depression & other emotional
responses to AD
• Stress Management (often within support
group framework) especially for conditions
more aggravated by stress e.g. epilepsy,
pain, respiratory, gastro & musculo-skeletal
conditions, etc
• Social Support sessions with family & friends +
active listening by leaders
Specific psychological strategies
• ‘Disclosure therapy’ writing/talking
about most stressful or traumatic life
events
• Non-directive/client-centred group
therapy
• Corrective information (many anxieties
borne of misinformation)
Specific psychological strategies
• Pain-coping skills
– Progressive Muscle Relaxation. Isometric
Relaxation
– EMG & Thermal Biofeedback + Autogenic
training
– Hypnosedation (e.g. in burns rx)
• Guided imagery e.g. for symptom control
• Attention re-focussing (stimuli outside body,
on to activity)
Specific psychological strategies
• Dissociation (self-hypnosis/meditation.
Meditation especially helpful with refractory
depression)
• Self-encouragement via self-reward
contingencies
• Communication skills training/assertiveness
training to improve communication with
health care professionals, carers, workmates
Specific psychological strategies
• Enhancing ‘self-efficacy’ (opposite of
helplessness) & ‘learning’ optimism
• Teaching principles of activity pacing
(See handout for this & other
psychological approaches to pain mx)
• Increasing appropriate movement –
walking, swimming, physio exercises via
behavioural contracting &
reinforcement contingencies
Specific psychological strategies
• Teaching significant others to reinforce
positive pain behaviour (e.g. selfmassage) & ignore negative (e.g.
groaning++)
• Relapse prevention to preserve
behavioural & attitudinal gains e.g.
groups for maintenance of treatment
gains
~ Patiently adjust, amend & heal.
- Thomas Hardy
~A man who has thought about the human state should be
pessimistic, but the only spirit compatible with human dignity
is optimism.
- Coleridge
~ To be heard is profoundly healing.
- Moshe Lang
~ Words are, of course, the most powerful drug used by
mankind.
- Rudyard Kipling
~ Loneliness is not a longing for company; it is a longing for
kind.
- Marilyn French
Resources
• Bibliography
– Doing Up Buttons. Christine Durham. Penguin (Australia). 1997. Also
available as an audiobook.
This is Christine Durham's extraordinary courageous and uplifting
story of the realities of coming to terms with the lasting effects of
head injury and grief at the loss of the person she was. Christine's
recovery encompasses both deep despair and hope as she
discovers that recovery has more to do with effort, acceptance,
invention, love, understanding and relearning than physical
healing.
– Surviving Acquired Brain Injury (Australian edition). Brain Injury
Association of Queensland. 2002.
This book will assist people with acquired brain injury, family
members, friends and professionals to understand and respond to
the difficulties associated with acquired brain injury. The chapters
on managing challenging behaviours will be of interest to many
workshop participants
Resources
• Living a Healthy Life with Chronic Conditions: Self-Management of
Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema &
Others (Paperback) by Halsted Holman, David Sobel, Diana Laurent,
Virginia Gonzalez, Marian Minor, Kate Lorig (Editor) Bull Publishing.
2000. The Arthritis Foundation of Australia has rights to a Leaders
Manual developed by Stanford Patient Education Research Centre
• Health Psychology: Biopsychosocial Interactions – An Australian
Perspective. Marie L. Caltabiano, Edward L. Sarafino et al.. John
Wiley & Sons Australia, Ltd.. 2002. Draws on Australian research and
health promotion programs to give practical guidance on wholeperson approaches to issues such as the chronic illnesses.
• This presentation in modified form is available from
www.fmcdonald.com
Resources
• State and National websites by
disability e.g.
– Brain Injury Association of Qld Inc
www.biaq.com.au
– Arthritis Australia; Arthritis Queensland
websites
• QHEPS ( Qld Gov’t employees: Type
particular AD into Search)