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 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

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

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. 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

3.
4.

~ 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 & dont 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 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)

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

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

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

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, overdrinking, excessive smoking, overuse of medication Lots of self-blame, helplessness or anger/blaming others

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.)

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

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 doesnt happen mental health issues to be on the alert for with suggestions for management

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

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 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

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

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 dont 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 youre 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

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 Govt employees: Type particular AD into Search)