THE APPLICATION OF WELL-BEING THERAPY TO PERSONS WITH SPINAL CORD INJURYAlexia Holovatyk, MS; Jennifer vanderValk, MS, & Barry Nierenberg, PhD

Spinal Cord Injury (SCI)EPIDEMIOLOGICAL DATA

National Spinal Cord Injury Statistical Center, 2016

New cases per year in US

17,000

Total in US 282,000 [243,000 – 347,000]

Average age onset 42Gender distribution Male: 80%

Female: 20%

Race/Ethnic Distributions

Non-Hispanic White: 63.5% Native American: 0.5%Non-Hispanic Black: 22% Asian: 2%Hispanic: 11% Other: 1%

Etiological Distributions

Vehicular Accidents: 38% Sports/Recreation: 9%Falls: 30.5% Medical: 5%Violence: 13.5% Other: 4%

SCI and Mental Health 48.5% endorse mental health

symptomatology, emotional/mood disorders Depression – 37% Anxiety – 30% Clinical-Level Stress – 25% PTSD – 8.4%

Diagnosed with depression 2x more frequently than individuals in general population

(Migliorini, Tonge, Taleporos, 2008)

Depression in SCI

Depression in SCI correlates with: Increased hospitalization Fewer improvements in rehabilitation Increased mortality Increased morbidity

(Kennedy & Rogers, 2000)

Implications Self-care routine Health care costs pain

Self-Care Behavioral Needs Patient Need ExamplesSelf-Care Skills (ADLs)

Feeding, grooming, bathing, sexual functioning…

Physical Care Support of heart and lung function, nutritional needs, skin care…

Mobility Skills Walking, transvers, self-propelling wheelchair…

Respiratory Care Ventilator (if needed), exercises to promote lung function…

Communication Skills

Speech, writing, alternative methods…

Patient Need ExamplesSocialization Skills Interaction with othersVocational Training

Work-related skills

Pain and muscle spasticity management

Medicine, alternative methods…

Psychological counseling

Identifying problems and solutions for thinking, behavioral, and emotional issues

Family Support Adapting to lifestyle changes, financial concerns, discharge planning

Education About SCI, home care needs, adaptive methods…(Johns Hopkins Medicine )

LIFETIME COSTS

(National Spinal Cord Injury Statistical Center, 2016)

Pain

(Tran, Dorstyn, & Burke, 2016)

Health-Disease Continuum

Disease ModelFocus on weakness

Overcoming deficiencies

Running from unhappiness

Neutral State (0) as ceiling

Neutral Health ModelFocus on strengths

Building competencies

Pursuing happinessSeeking pleasure

No ceiling

-10 0 10

Depression and Well-Being Remission of Depression

Mild, chronic residual symptoms Worse long-term outcomes “Rollback Phenomena”

Relationship between residual and prodromal symptoms of depression

Lower levels of psychological well-being

(Fava & Mangelli, 2001; Rafanelli et al, 2000)

“…the absence of well-being creates conditions of vulnerability to possible future adversities and

that the route to enduring recovery lies not exclusively in alleviating the negative, but in

engendering the positive.”Fava & Ruini, 2003, p. 46

Ryff’s 6 Dimensions of Well-BeingDimension DefinitionSelf-Acceptance The capacity to see and accept

one’s strengths and weaknessesPurpose in Life Having goals and objectives that

give life meaning and directionPersonal Growth Feeling that personal talents and

potential are being realized over time

Positive Relations with Others Having close, valued connections with significant others

Environmental Mastery Being able to manage the demands of everyday life

Autonomy Having the strength to follow personal convictions, even if they go against conventional wisdom

(Ryff, 1989a, Ryff, 1989b)

High/ Low Levels of Well-Being

Ryff’s PWB Dimension

s

Related dimensions of positive functioning

Low” Hypo”- Level

Balanced-Functional

LevelHigh ”Hyper”-

level

Self-Acceptance

GoalsHopePassion

Feels dissatisfied with selfIs disappointed with what has occurred in past lifeIs troubled about certain personal qualitiesWishes to be different then what he or she is

Possesses a positive attitude toward the selfAcknowledges and accepts multiple aspects of self, including good and bad qualitiesFeels positive about past life

Has narcissistic and egocentric traitsHas difficulty admitting own mistakes and rigidity

Purpose in life

LeadershipLocus of controlsSelf-determinationBravery

Lacks a sense of meaning in lifeHas few goals or aimsLacks sense of directionDoes not see purpose in past lifeHas no outlooks or beliefs that give life meaning

Has goals in life and a sense of directednessFeels there is a meaning to the present and past lifeHolds beliefs that give life purposeHas aims and objectives for living

Has obsessional passionsUnable to admit failuresManifests persistence and rigidityUnable to change perspective and goalsFinds excessive hope paralyzing and hampers facing negativity and failures

High/ Low Levels of Well-Being

Ryff’s PWB

Dimensions

Related dimensions of positive functioning

Low” Hypo”- Level

Balanced-Functional Level

High ”Hyper”- level

Positive relations

with others

Self-esteemPositive reframingOptimism

Has few close, trusting relationships with othersFinds it difficult to be warm, open, and concerned about others Is isolated and frustrated in interpersonal relationships Not willing to make compromises to sustain important ties with others

Has warm, satisfying, and trusting relationships with othersIs concerned about the welfare of othersCapable of strong empathy, affection, and intimacy Understands give and take of human relationships

Feels pain and distress of others due to exaggerated empathySacrifices own needs and well-being for others due to exaggerated altruismMay mask low self-esteem and sense of worth through extreme forgiveness and gratefulness

Personal growth

EmpathyGenerosityAltruismForgivenessGratitude

Has a sense of personal stagnationLacks sense of improvement or expansion over timeFeels bored and uninterested with lifeFeels unable to develop new attitudes or behaviors

Has a feeling of continued developmentSees self as growing and expandingIs open to new experiencesHas sense of realizing his or her potentialSees improvement in self and behavior over timeIs changing in ways that reflect more self-knowledge and effectiveness

Unable to process negativityForgets or does not give enough emphasis to past negative experiencesCultivates benign illusions that do not fit with realitySets unrealistic standards for overcoming adversities

High/ Low Levels of Well-Being

Ryff’s PWB Dimensions

Related dimensions of positive functioning

Low” Hypo”- Level

Balanced-Functional

LevelHigh ”Hyper”-

level

Environmental

mastery

WisdomSelf-determinationOptimal experiencePassion

Has difficulties managing everyday affairsFeels unable to change or improve surrounding context Is unaware of surrounding opportunitiesLacks sense of control over external world

Has a sense of mastery and competence in managing the environment Controls complex array of external activities Makes effective use of surrounding opportunities Able to create or choose contexts suitable to personal needs and values

Unable to savor positive emotions and hedonic pleasureUnable to relax

Autonomy

MeaningPost-traumatic growthBenefit findingIntrinsic motivation

Is concerned about the expectations and evaluations of others Relies on judgments of others to make important decisions Conforms to social pressures to think and act in certain ways

Is self-determining and independentIs able to resist social pressures to think and act in certain waysRegulates behavior from withinEvaluates self by personal standards

Unable to get along with other people, to work in a team and to learn from othersSpends time and energy fighting for opinions and rightsRelies only on self to solve problemsUnable to ask for advice or help

Fava’s Well-Being Therapy

Cognitive Behavioral Framework Ryff’s Well-Being Relapse prevention Therapy Outline

Initial Sessions Intermediate Sessions Final Sessions

“The goal of the therapist is to lead the patient from an impaired level to an optimal level in the six dimensions of psychological well-being.” (Fava & Ruini, 2003, p. 50)

(Fava & Ruini, 2003)

Does it work? 45 Outpatients with Major Depressive Disorder 2 Groups

Antidepressants + CBT CBT, lifestyles modification, WBT – “treatment

package” Antidepressants + Clinical Management

Support and advice regarding clinical status By last 2 sessions – drug free (excluded 5

participants) Followed and assessed for 6 years

(Fava, Ruini, Rafanelli, Finos, Conti, & Grandi, 2004)

6 year follow-up - Results Relapse Rates

CBT/WBT group: 40% (8/20)

Clinical Management group: 90% (18/20)

Mean “Survival Time” CBT/WBT group: 235

weeks Clinical Management

group: 95.5 weeks

(Fava et al., 2004)

Application to SCI

Application to SCI

Goals: Apply a person-first approach to persons with SCI

Beatrice Wright’s 20 Value Laden Principles of Rehab Psych: Our Assumptions No amount of physical disability erases a person’s assets Individuals able to cope tend to balance a focus on their old

and newly found strengths, whereas those who mostly succumb tend to mainly be aware of their losses

The assets of the person must receive considerable attention in the rehabilitation effort

Predictor variables, based on group outcomes in rehabilitation, should be applied with caution to the individual case

Positive Psych Approach to SCI Questions:

Does WBT actually increase PWB in patients who live with an SCI?

If it does in this population, what effect, if any, is there on buffering against negative affective states?

What are the effects on behavioral outcomes such as number and degree of complications & costs?

Why Acceptance & Commitment Therapy (ACT)?

Goal of therapy is to increase psychological flexibility

Functional Contextualism Relational Frame Theory- Balanced

approach. Focusing on the negative as well as the

positive without trying to change your experience

If you are experiencing it, it is inherently acceptable

Trying to resolve the pain s the pain

Why ACT? Qualitative research exploring the

perspectives of individuals with health crises following life disruptions and identified themes were: Meaning Purpose Choice Refocusing values The need to have something to wake up for Ability to explore new opportunities The need to envision future time engaged in

meaningful activities(Hammell 2004)

Why ACT?

“Positive psychology of rehabilitation should do more than just focus on treatment issues or adaptation to disability—it must capitalize on

people’s psychosocial strengths to maintain or enhance psychological and

physical well-being and to prevent pathology”

Dunn, 2015

Acceptance & Commitment Therapy (ACT)

ACT with a Well-Being Overlay

Ryff’s Factors of Well-Being & SCI

PWB Factor

Spinal Cord Injury

Environmental Mastery

Physical environment: challenges with physical access, urban infrastructure, and the availability and accessibility of transportation.

Economic environment- cost of health care for individuals with SCI.

Political/legal environment- difficulties surrounding accessibility to resources such as medical assistance, transportation, and insurance social environment- negative impact on those with SCI and the associated stigma, lower social connections (Hammell, 2007)

Autonomy Autonomy has been linked to the opportunity to live in the community, to direct their own personal care, to make decisions and to act on choices. Factors that can influence ones autonomy are the ability to have a job, continue engaging in daily functions such as driving, level and type of injury. This research suggests that autonomy is linked with a higher quality of life and is a key factor of assessment and goal of treatment for individuals with SCI. Similar to self-efficacy.Scivoletto, Petrelli, Di Lucente, & Castellano (1997) examined factors linked with anxiety and depression of individuals with SCI and found that rates were significantly associated with a lack of autonomy. Hammell (2004) identified autonomy as being essential for attaining quality in living.

Self-Acceptance

Problems associated with the self and the perception of a “disabled” body can have a significant impact upon the lives of many people with SCI (Hammell, 2007). Redefining disability and changing their own subjective experience of disability has led to a gradual rediscovery of self and provided subjects with an avenue by which a personal interpretation of disability could be made, not in terms of inadequacy or limitations, but in terms of personal potential and self confidence. (Carpenter, 1994) Emotional adjustment, particularly self-perception and self-acceptance, is considered to be one of the most crucial indicators of achievement of rehabilitation goals (Trieschmann, 1988; Oliver, Zarb, Silver & Salisbury, 1988; Ben Sira, 1981; Cohen & Lazarus, 1983; Zola, 1982).

Ryff’s Factors of Well-Being & SCI

PWB Factor

Spinal Cord Injury

Purpose in Life Research findings indicate that purpose in life is a powerful predictor of adjustment after SCI, mediating the effects of personality variables and locus of control. (Thompson, Coker, Krause, & Henry, 2003; Dunn (1994). In order to demonstrate the link between purpose in life and psychological well being, Crewe (1997) examined narratives of people’s lives with long term spinal cord injury and found that individuals who identified a purpose in life and found meaning from their injury, adapted well compared to those who did not report a purpose in life.

Positive Relations with Others

Previous research has found that traumatic spinal cord injury can lead to disrupted social relationships (Kleiber, Brock, Lee, Dattilo, & Caldwell, 1995).The research supports the significance of the need for warm, trusting, understanding social relationships that correlate with overall psychological well being. Factors and priorities differ from the general population (i.e. accomplishments such as achieving sitting balance and wheel-chair-to-toilet transfers) and contribute to a sense of separation from the “real world” , which alienates them from their personal life and social context (Cogswell, 1983).

Personal Growth

Hammell (2007) examined factors of quality of life and adjustment to SCI & found that those who adjusted well to SCI perceived their growth process as a continuation of their personal life biography, focusing on capability and competence rather than inadequacy and limitation. These individuals viewed themselves as able, not disabled, acknowledging that they are the same person pre-injury just have more challenges such as difficulty getting around and different bodily functioning. Leisure activities such as good acts (volunteering) or good habits (regular exercise) can contribute to post traumatic growth by providing opportunities to discover unique abilities and hidden potential, build companionship and meaningful relationships, make sense of traumatic experience and finding meaning in everyday life, and generate positive emotions. Also consistent with Crewe 1997 findings.

Living Well with SCI: The Treatment

Participatory Action Research (PAR) Approach

Collaborative vs. Hierarchical approach harmonious with ACT

To receive feedback from a SCI group and further develop the “Living Well” intervention with individuals with SCI

Structure of Treatment

Led by a licensed psychologist or a graduate student supervised by a licensed psychologist

8 sessions 1-2 hours each Bimonthly Group Format

Modifications/ Special Considerations for SCI population

Start sessions in the afternoon as opposed to morning to allow extra time for travel

Allow questionnaires to be completed by pencil/paper or electronically

Pick questionnaires that are appropriate to an SCI population, if possible E.g. The STAI_Y6 was selected rather than the BAI

because the BAI had more items about physiological anxiety (e.g. “Numbness or Tingling”)

Modify questions on the assessments that pertain to physical movement E.g. “I tended to travel quickly to get where I was going

without paying attention to what I experienced along the way” instead of “I tended to walk quickly to get where I was going without paying attention to what I experienced along the way” (on the MAAS)

Participants Five members of the executive board of

a Spinal Cord Injury Support Group

Introductory Session: Session 1(2 hours)

Informed Consent Confidentiality & Guidelines for

participating Complete pre-assessment Psychoeducation on rationale & brief

overview of 6 factors of well-being

Example Middle Session: Sessions 2-7 (1 hour)

Briefly review one of the factors of well-being

Introduce the Discussion Question in a round-table style where each PT has a turn to speak (or pass)

Homework: “Goal” for the week: Increase awareness around times could’ve

and did or didn’t implement the value of the week

Can journal at the end of each day Be prepared to discuss experience the

following session

Sample Weekly Discussion Questions

Purpose in Life- What’s your why? Self-Acceptance- What does it mean to

you to accept who you are and who you’re not?

Relationship With Others- How does being in a chair affect your relationships with other people?

Sample Weekly Discussion Questions

Autonomy- How do you handle it when people do something for you that you can do for yourself?

Environmental Mastery- In terms of living your everyday life, what’s been surprisingly easy? What’s been surprisingly challenging?

Personal Growth- In what ways are you putting effort into growing and in what ways are you stagnating?

Example Final Session: Session 8 (2 hours)

Discussion question: Any last thoughts to express?

Integration What has been working for you that you

want to keep? What hasn’t been working that you want

to leave behind? How do you incorporate well-being into

your life when we’re not meeting every other week?

Fill out post-questionnaires

Measures Board members completed the questionnaires

and thought they were appropriate Demographic Form Psychological Well-Being Scale (PWB) Acceptance & Action Questionnaire (AAQ) Quality of Life, Spinal Cordy Injury Version (QoL,

SCI) The Trait Hope Scale (HS) State-Trait Anxiety Inventory (STAI-Y6) Patient Health Questionnaire (PHQ-9) Post Traumatic Growth Inventory (PTGI) Mindfulness Acceptance & Action Scale (MAAS)

Qualitative Results What the board members liked:

Appreciated focus on emotional vs. physical well-being They learned things about each other that they never knew

before Professionals focused on ASSETS rather than PATHOLOGY-

Balanced approach “No one has every asked us about these things before” “Helpful for us to remember that we can still live our

values”

Behavioral outcomes: Not a month goes by without their asking when we are going to start with their members

Constructive Feedback

Wanted the inclusion of homework to increase applicability to everyday life

Wanted more frequent sessions Implementation during transition between

hospital & home post-injury

Future Directions

Empirically address when to implement? Immediately after injury as prophylactic? Transition from hospital to home as a

prophylactic? During depressive episode? After remission?

Effective as a stand-alone treatment or in conjunction with traditional CBT?

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