Title: Psychosocial Issues Associated with Acquired Disabilities
1Psychosocial Issues Associated with Acquired
Disabilities
- Mr. Frank McDonald
- Psychologist Consultation-Liaison Service The
Townsville Hospital - Dr. Joann Lukins
- Psychologist Peak Performance Psychology Pty
Ltd
2Timetable
- 9.00 9.30 Registration
- 9.30 - 11.00 Workshop
- 11.00 - 11.30 Morning tea
- 11.30 - 1.00 Workshop
- 1.00 - 1.45 Lunch
- 1.45 - 3.00 Workshop
3Participant professional backgrounds
- Speech Pathology
- Social work
- Nursing
- Occupational therapy
4Background of patients
- Age-related functional decline
- Amputation
- Occasionally in combination with psychosocial
issues (drug misuse, anxiety, depression,
borderline personality disorders, post traumatic
stress disorders)
- Acquired brain injury
- Burn injuries
- Traumatic brain injury
- Cerebrovascular accident
- Patients with neurological disorders (eg. MS)
- Fractures
- CVA
- CHI
- Amputations
5Challenges in working with patients with acquired
disabilities
- Patient
- Self-esteem issues
- Learning disabilities
- Loss of roles prior to acquired disability
- Insight into reason for admission, deficits and
negative lifestyle behaviours - Aggressive behaviours
- Challenging behaviour
- Sexual disinhibition and inappropriateness
- Motivation
- Patients support network
- Family finding it hard to deal with issues/lack
of support - Educating patient and family regarding the long
term nature of the injury - How relationships affect outcomes for the client
6Challenges in working with patients with acquired
disabilities
- Practitioner/patient relationship
- Understanding the whole picture
- Compliance with therapy program
- Managing grief and responding appropriately
- How to empower the client
- Help clients in initial stages of disabilities
- Time and resource restraints
- Practitioner/patient relationship
- Have difficulty referring on to skilled services
to assist with psychosocial issues - Understanding of deficits and rehabilitation
- Knowing the best way to handle different coping
strategies - Working as a team (when physical location is an
issue)
7Your expectations of attending this workshop
- Increased awareness of stages of grief and how to
counsel/support people during their grieving - To try and get ideas and inspiration when working
with people who have an acquired disability and
associated psychosocial issues - Info on practical ideas on where to start and
useful referral options for services that may be
able to offer help - To gain/learn new strategies for dealing with
challenging behaviour/psychosocial issues - To develop skills to address psychosocial issues
- Better knowledge in above areas
- To improve skills in the therapy situation
- To gather resources/information to pass onto
colleagues who also work in the acquired
disability area
8Preferred learning style
- Teaching styles Level of preference
- Lecture High
- Small group discussion High
- Small group problem
- solving Moderate
- Individual work Low
- Role plays Low
9Goals
- 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
10Our expectations of this workshop
- Aim improve your tertiary prevention of Acquired
Disability retard its progression prevent
further disability using principles practices
of psychological rehabilitation
11Our expectations of this workshop
- This will be achieved by
- broadening your understanding of adjustment
reactions to Acquired Disability - how why some
cope others dont - 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
12Learning outcomes
- You will be better able to appreciate the range
of ways people react to AD, initially long
term - You will be better able to suggest what can be
done to help people cope effectively with
identified psychosocial problems
13Form 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 etc. - Given your acquired disability, describe your
life now how have your dreams and aspirations
been affected?
14Prologue
- 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
15Acquired 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
16Types of disability
- Intellectual or Learning
- Medical
- Physical
- Psychiatric
- Neurological
- Communication
17How disabilities may be acquired
- Prenatal
- Congenital
- Postnatal
- Adventitious
- Illness
- Abuse/neglect
- Late onset of genetically acquired disability
18Acquired Disability levels of impact
Spiritual/existential
Psychological
Social Occupational
Physical
19Types 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-
self-management, loss of initiative - Self-concept inability to accept changed body
image, self-esteem, 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
20Why psychosocial impact of AD is an important
consideration
- 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
21Why psychosocial impact of AD is an important
consideration
- 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
22Adjusting
Patiently adjust, amend heal. - Thomas
Hardy
- Goal 2 Awareness of impact of AD on specific
aspects of psychosocial functioning of individual
family friends - Initial ongoing emotional reactions to AD
-
23Initial 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
well-being e.g. not absorbing or applying info
that aids recovery or prevents health problems
24Initial 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
25Common emotional reactions to acquired disability
- Confusion, denial disbelief
- Anxiety, fear of losing control
- Panic
- Inadequacy humiliation
- Anger frustration, resentment
- Sadness crying
- Guilt
- Helplessness, hopelessness despair
- Disorganisation
- Fatigue lethargy
- Loss of interests
- Withdrawal
- Loneliness, isolation abandonment
26Adjusting
A man who has thought about the human state
should be pessimistic, but the only spirit
compatible with human dignity is optimism.
-
Coleridge
- 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 dont cope - Empirical other predictors of coping
- Grief v. Depression
27Who copes?Strategies used by people who manage
in the face of chronic illness
- Distancing try to detach from stress of
situation (I didnt 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)
28Who 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 dont 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
29Who 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 (Ill 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 cant be
controlled - So flexible use of coping strategies try to
change the things I can accept the things I
cant
30Who 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 Its 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
31Who doesnt 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, over-drinking,
excessive smoking, overuse of medication - Lots of self-blame, helplessness or anger/blaming
others
32Who doesnt 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.)
33Stages in Evolution of Family Reactions to a
Brain-Injured Member (Lezak, 1980)
34Empirical predictors of poor adjustment prior to
disability
- Previous treatment failures
- Psychopathology personality disorders
- Dependency traits
- Depression
- Emotional immaturity
35Empirical 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
36Other factors that affect psychological adjustment
- Pain
- Medication
- Isolation
- Boredom
- Medical complications body image
- Cognitive problems/TBI
- Family/Friends/Social support
- Visible vs non-visible acquired disability
37Psychological 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
38Phases 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
39Adjusting
To be heard is profoundly healing.
- Moshe Lang
- Goal 3 Awareness of mental health issues
- When coping doesnt happen mental
health issues to be on the alert for with
suggestions for management
40Mental health issues sometimes associated with
Acquired Disability
- Depression
- Anxiety (including PTSD)
- Adjustment disorder
- Substance use
- Denial of deficits (anasognosia/anosodiaphoria)
- Social withdrawal amotivational states
- Behavioural disorders
41Risk 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
42Management
- If an individual expresses suicidal ideation,
ensure persons immediate safety - Obtain an urgent psychiatric consultation if
persons immediate safety at risk - Determine appropriate setting of care
- Treat underlying problems such as depression,
substance abuse, pain, etc
43Management
- 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
44Management of acute stress reactions
- Referral to GP/Psychologist/Psychiatrist for
assessment - Normalise reaction
- Encourage person to talk
- Time
- Social support
45Management of depression
- Referral to GP/Psychologist/Psychiatrist for
assessment - Individually managed treatment plan
- Be aware of stigma bias against people with
mental health issues
46Management 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
47Management of PTSD
- Referral to GP/Psychologist/Psychiatrist for
assessment - Treatment in this areas is specialised
48Management of Adjustment Disorder
- Offer a supportive relationship
- Encourage control of negative thoughts
- Assist encourage problem solving
- Encourage involvement in positive activities
- Promote health maintenance
49Psychosocial Intervention
Strategies
Words are, of course, the most powerful drug
used by mankind. -
Rudyard Kipling
- Goal 4 Role of Allied Health staff in
identifying addressing psychosocial functioning - Your professional personal input
-
50Your 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
51Your professional personal input
- How can we help patients meet psychosocial needs?
- 3 levels
- your professional personal input
- encouraging supporting self-management
- specific psychological strategies shown to
alleviate condition associated problems
52Your professional personal input
- Professional contributions can significantly
improve patients psychological state - Patients sense of control esteem can be
heightened by progress improvements with
physical therapy, exercise, speech therapy,
occupational therapy medications
53Your professional personal input
- 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
54Your 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 dont notice
55Your 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
56Your 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 self-esteem. How are going
in that area?
57Your 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
58Your 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
youre not coping with this as well as you
should
59Your 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
60Psychosocial Intervention
Strategies
Loneliness is not a longing for company it is
a longing for kind. -
Marilyn French
- 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
61Encouraging supporting self-management
- Patients who adopt a self-management approach, to
augment professional management, fare better with
their condition - Subjective experiences like degree of
suffering/emotional components of pain diminish
62Encouraging 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)
63Encouraging 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
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65Psychological 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
66Specific psychological strategies
- 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 tohttp//www.crowdbcm.net/mea
sures/Measures_index.htm
67Specific 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)
68Specific psychological strategies
- Behavioural contracting, ve ve
reinforcement contingencies for pro-social
behaviours (See handout) - Environmental cueing using prompts reminders
- Pt self-monitoring of self-care activity
rewards e.g. diabetes adherence
69Specific 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
70Specific 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)
71Specific 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)
72Specific 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
73Specific 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
74Specific psychological strategies
- Teaching significant others to reinforce positive
pain behaviour (e.g. self-massage) ignore
negative (e.g. groaning) - Relapse prevention to preserve behavioural
attitudinal gains e.g. groups for maintenance of
treatment gains
75- 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
76Resources
- 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
77Resources
- 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 whole-person approaches to
issues such as the chronic illnesses. - This presentation in modified form, plus related
material, is available from www.fmcdonald.com
78Resources
- State and National websites by disability e.g.
- Brain Injury Association of Qld Inc
www.biaq.com.au - Arthritis Australia Arthritis Queensland
websites - QHEPS (Type particular AD into Search)
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