Psychosocial Issues Associated with Acquired Disabilities

1
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

2
Timetable

• 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

3
Participant professional backgrounds

• Speech Pathology
• Social work
• Nursing
• Occupational therapy

4
Background 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

5
Challenges 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

6
Challenges 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)

7
Your 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

8
Preferred learning style

• Teaching styles Level of preference
• Lecture High
• Small group discussion High
• Small group problem
• solving Moderate
• Individual work Low
• Role plays Low

9
Goals

1. Examine short long term broad consequences of
   acquired disability
2. Raise awareness of impact of acquired injury on
   specific aspects of psychosocial functioning of
   individual family friends
3. Increase awareness of mental health issues
   associated with acquired disability
4. Highlight role of Allied Health staff in
   identifying addressing psychosocial functioning
5. Provide specific strategies to address issues
   related to psychosocial functioning

10
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

11
Our 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

12
Learning 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

13
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 etc.
• Given your acquired disability, describe your
  life now how have your dreams and aspirations
  been affected?

14
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

15
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

16
Types of disability

• Intellectual or Learning
• Medical
• Physical
• Psychiatric
• Neurological
• Communication

17
How disabilities may be acquired

• Prenatal
• Congenital
• Postnatal
• Adventitious
• Illness
• Abuse/neglect
• Late onset of genetically acquired disability

18
Acquired Disability levels of impact
Spiritual/existential
Psychological
Social Occupational
Physical
19
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-
  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

20
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

21
Why 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

22
Adjusting
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

23
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
  well-being e.g. not absorbing or applying info
  that aids recovery or prevents health problems

24
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

25
Common 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

26
Adjusting
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

27
Who 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)

28
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 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

29
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 (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

30
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 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

31
Who 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

32
Who 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.)

33
Stages in Evolution of Family Reactions to a
Brain-Injured Member (Lezak, 1980)
34
Empirical predictors of poor adjustment prior to
disability

• Previous treatment failures
• Psychopathology personality disorders
• Dependency traits
• Depression
• Emotional immaturity

35
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

36
Other 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

37
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

38
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

39
Adjusting
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

40
Mental 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

41
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

42
Management

• 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

43
Management

• 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

44
Management of acute stress reactions

• Referral to GP/Psychologist/Psychiatrist for
  assessment
• Normalise reaction
• Encourage person to talk
• Time
• Social support

45
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

46
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

47
Management of PTSD

• Referral to GP/Psychologist/Psychiatrist for
  assessment
• Treatment in this areas is specialised

48
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

49
Psychosocial 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

50
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

51
Your 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

52
Your 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

53
Your 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

54
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 dont notice

55
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

56
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 self-esteem. How are going
  in that area?

57
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

58
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
  youre not coping with this as well as you
  should

59
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

60
Psychosocial 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

61
Encouraging 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

62
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)

63
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

64
(No Transcript)
65
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

66
Specific 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

67
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)

68
Specific 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

69
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

70
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)

71
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)

72
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

73
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

74
Specific 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

76
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

77
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 whole-person approaches to
  issues such as the chronic illnesses.
• This presentation in modified form, plus related
  material, is available from www.fmcdonald.com

78
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 (Type particular AD into Search)

79
(No Transcript)
80
(No Transcript)