Promoting Family Wellness: Conceptual and Evidence-based Approaches - - PowerPoint PPT Presentation

Promoting Family Wellness: Conceptual and Evidence-based Approaches

• Dr. Jonathan Weiss, Ph.D., C.Psych.

Associate Professor

November 13, 2018; Oklahoma Statewide Autism Conference

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Focus on family

• The health of the family interacts with the health of the

individual

• Supporting caregivers before and after the onset of mental

health problems is critical

• Learning about how to support these families can inform how

to support families of other high needs groups

• What do families tell us about their experience?
• What do these families need and receive?
• What can we do about their high levels of crisis?

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Family wellness

• Is not just the absence of negative
• positive health, quality of life and an experience of

wellbeing

• “realization of the fullest potential of an individual

physically, psychologically, socially, spiritually and economically, and the fulfilment of one’s role expectations in the family, community, place of worship, workplace and

• ther settings” (Smith et al. 2006)
• While families may have more struggle, they have

similar levels of positive wellbeing

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Take a moment

• Think about your family’s contexts…

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The importance of family

• Instrumental for
• Accessing health (incl. mental health) and social services
• Advocating
• Planning
• Building protective and reducing vulnerability factors
• Providing interventions through increasing use of a

consultative model of service

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The importance of family

• Family caregivers are playing an increasingly important role across

the lifespan

• Percent of adults with developmental disabilities in the US

living with parents (Lakin, Prouty, & Coucouvanis 2007):

• 1992: 6.3%
• 1999: 22%
• 2006: 38.8%
• Adults with ASD (n = 1459) receiving Medicaid are more likely

to be living in a family member’s home (46% vs. 36%) and less likely to be living in their own home (8% vs. 15%), compared to adults with ID without ASD (n = 10432)(Hewitt et al. 2017)

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What do families need?

(Gratsa et al. 2004)

• Information
• Practical issues
• Finances
• Complaint procedures: Rights
• Legislation
• Crisis planning

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What do families need?

(Gratsa et al. 2004)

• Information
• Symptoms: Descriptions,

ways of recognizing

• Medication: Side effects,

interactions, reasons, ways of seeing change

• Professionals and services
• Roles: Descriptions
• Expectations
• Who to call and how long

to wait

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What do families need? (Gratsa et al. 2004)

• Support and skill
• Working with professionals: Finding

the right help, having the right attitude, advocacy

• Working with society: Coping with

negative social life experiences with acceptance and understanding

• Problem solving & seeking

alternatives

• Self-care
• New carers
• Recognition of
• Experience of stigma / prejudice,

isolation

• Positive and negative past

experiences

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Process or Outcome?

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Models that help us conceptualize the dynamic processes of coping

• Double ABCX model of Family Adaptation (McCubbin &

Patterson, 1983)

• Family Adjustment and Adaptation Resource Model

(Patterson, 1988)

• Resiliency Model of Stress, Adjustment, and Adaptation

(McCubbin and McCubbin, 1993)

• Perrys (2004) stress model

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Double ABCX

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Lavee, Y., Hamilton, I. M., & Patterson, J. M. (1985). The Double ABCX model of family stress and adaptation: an empirical test by analysis of structural equations with latent variables. Journal of Marriage and the Family, 47(4), 811–825.

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Is crisis the same thing as stress?

• McCubbin & Patterson (1983)
• Stress is a demand capability imbalance
• Crisis is an inability to restore stability and by the

continuous pressure to make changes in the family structure and patterns of interaction

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Crisis

Crisis Crisis

Family Adaptation

Adaptation Phase

FamilyAdjustment

Adjustment Phase

From "Families Experiencing Stress: The Family Adjustment and Adaptation Response Model," by J. M. Patterson, 1988, Family Systems Medicine, 6(2), pp. 202-237.

Family Adjustment and Adaptation Resource Model

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Resiliency Model of Family Stress, Adjustment, and Adaptation

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Perry model

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Themes from qualitative research

• Family
• Service discrepancy
• Constant advocacy
• Transition issues
• Reactive system

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A Family Struggle

• At the moment we are in a

situation of nowhere. We have a son at 22 and we don't know anything about his future. And my wife has Lupus and all these problems, and now she has depression herself. Nearly two months she has been on disability leave… Tremendous stress. And we are nervous about my son. I am in a very difficult situation with the two of them, with no light at the end of the tunnel.

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Impact on the family

• My daughter needs support too, the rest of the

family needs support. My husband has depression and Im sure that it would be different if his life wasnt so stressful. And I feel like Im an Atlas holding up the world … I am holding the family together and I need a break but I cant. I need to be strong enough until what? Never ends.

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Theme: Level of service does not meet the level of need

• It is fine to say that you have
• services. But dont ask me to

wait while my child hurts us or herself and then all I get is [behaviour] consultation…. It would be fine if she was young and if we were young and if her problems werent severe. But the service doesnt fit what we need so we are helpless.

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Theme: Exhausted from the need for constant advocacy

• … the advocacy is

taking its toll… I dont need to be on medications, but I am just exhausted because I am on this mission to make sure my boy is cared for.

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Theme: Transition and lifespan issues

• Im really worried about her

future and I have no idea where she will go, and we are older, and that is a big concern of mine, if the services arent there for her now and it supposedly much worse for adults, whats going to happen to her?

• I worry about her becoming a

recluse … she becomes more and more isolated the older she gets

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Theme: Reactive systems

• After they realized it was

unmanageable for us, THEN [the services] all got

• together. We had meetings
• f over 20 people. But the

pressure was still on to take her back home because there was nowhere to place her.

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Families in distress

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Crisis in families

• Crisis is a key issue to study in families of people with autism
• But what is a crisis?
• Using emergency rooms for behaviour problems
• Requiring time-limited treatment beds or crisis

specific services

• Having police get involved
• Attacking a parent or sibling, or themselves?
• Destroying someones property when feeling

angry?

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Crisis Definitions

• Roberts (2000)
• An acute disruption of psychological homeostasis in which
• nes usual coping mechanisms fail and there exists

evidence of distress and functional impairment

• The subjective reaction to a disruptive life event
• The disruptive event is
• stressful, traumatic, or hazardous,
• perceived by the caregiver as the cause of considerable

distress

• not resolved by previously used coping methods

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Cross-sectional work can help us build rich conceptual models of family experiences

Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 985–995. https://doi.org/10.1177/1362361313508024

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Crisis themes: Internal resources and subjective appraisal

• Lack/loss of coping
• We would no longer be able to manage at least one key area
• f our lives (e.g., employment, relationships, etc.,)
• Hopelessness
• No hope for improvement or change for the better in a

circumstance

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External resources and Demands

• Loss of resources
• Right now crisis is financial - I home schooled my son and

found him to be gaining extremely well - I have had to file bankruptcy and am very afraid of losing our home…

• Increases in stressors or severity of problem behaviour
• Her having a meltdown... beating us, kicking, punching,

hitting, pinching, pushing, slapping

• Sudden event
• Death of a parent/grandparent, death of in-law, great

grandparent, sudden loss of earnings, separation with pending divorce; having to move from hometown to large city

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Severity of Crisis

1 Everything is fine, my family and I are not in crisis at all 2 Everything is fine, but sometimes we have our difficulties 3 Things are sometimes stressful, but we can deal with problems if they arise 4 Things are often stressful, but we are managing to deal with problems when they arise 5 Things are very stressful, but we are getting by with a lot of effort 6 We have to work extremely hard every moment of every day to avoid having a crisis 7 We won’t be able to handle things soon. If one more thing goes wrong - we will be in crisis 8 We are currently in crisis, but are dealing with it ourselves 9 We are currently in crisis, and have asked for help from crisis services (Emergency room, hospital, community crisis supports) 10 We are currently in crisis, and it could not get any worse

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Crisis as dimensional: Brief Family Distress Scale (Weiss & Lunsky, 2011)

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Severity of crisis responses in a community sample

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How does crisis severity relate to child and parent psychological factors?

Crisis severity Caregiver worry about child .32 Child aggressive behaviour .43 Caregiver mental health problems .38 Caregiver burden .36 Negative life events .34 Quality of life

• .38

Empowerment

• .35

Family hardiness

• .42

All p < .001

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Working with families

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Intervening with families

• MANY studies now of interventions to help parents
• Acceptance and Commitment Therapy Workshops (Blackledge &

Hayes, 2006)

• Mindful Parenting (Singh et al., 2006)
• Parent to parent (Dykens et al., 2014)
• Mindfulness Based Stress Reduction and Positive Empowerment

Supports

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Mindfulness and “therapy”

• Mindfulness offers an alternative or an adjunct to current

therapies

• Instead of challenging an individual’s irrational or negative

thinking, mindfulness-based approaches focus on the individual’s relationship to thinking itself

• Transformative - changes the way we relate to thoughts,

feelings, emotions, and actions; changes the way we engage in life itself

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Mom to Mom ACT for mothers

Kenneth Fung, Lee Steel, Kelly Bryce, Johanna Lake, Yona Lunsky

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What is ACT?

• Acceptance and Commitment Therapy (ACT)
• Behavioural intervention to help people learn strategies to

live life more in the present, more focused on important values and goals, and less focused on painful thoughts, feelings and experiences

• ACT teaches
• how to engage with and overcome painful thoughts and

feelings through acceptance and mindfulness techniques

• self-compassion and flexibility
• build life-enhancing patterns of behaviour

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Acceptance and Commitment Therapy

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Supporting families together

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Resilience

• It is the ability to recover or bounce back from and

effectively adapt to life changes and challenges.

• These families have tremendous strength
• The strongest oak of the forest is not the one that is

protected from the storm and hidden from the sun. It is the

• ne that stands in the open, where it is compelled to struggle

for its existence against the winds and rains.

Napoleon Hill

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Ways to Foster Resilience in Parents

• PREVENTION
• Increase opportunities for success in work/ leisure
• Increase opportunities for satisfying social/ life

experiences

• Ensure ability to communicate and make choices
• Encourage expression & validation of emotions
• Offer help when needed
• Offer skills training on coping
• Ensure social and other supports meet individuals needs

41

• Identify at least two things you learned during this

presentation to apply in your personal or professional life.

• Identify three steps you will take in the next month to

implement what you learned in your personal or professional life

42

Thank you!

Jonathan Weiss, PhD,CPsych Associate Professor

• Dept. of Psychology

York University jonweiss@yorku.ca Tel: 416-736-5891

http://asdmentalhealth.blog.yorku.ca/ @ASDMentalHealth @DrJonathanWeiss

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References

• Blackledge, J. T., & Hayes, S. C. (2006). Using Acceptance and Commitment Training in

the Support of Parents of Children Diagnosed with Autism. Child & Family Behavior Therapy, 28(1), 1–18.

• Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing

Distress in Mothers of Children With Autism and Other Disabilities: A Randomized Trial. PEDIATRICS, 134(2).

• Hewitt, A. S., Stancliffe, R. J., Hall-Lande, J., Nord, D., Pettingell, S. L., Hamre, K., &

Hallas, Muchow, L. (2017). Characteristics of adults with autism spectrum disorder who use residential services and supports through adult developmental disability services in the United States. Research in Autism Spectrum Disorders, 34, 1–9.

• Holt, G., Gratsa, A., & Bouras, N. (2004). A guide to mental health for families and carers
• f people with intellectual disabilities. Jessica Kingsley Publishers.
• Lavee, Y., Hamilton, I. M., & Patterson, J. M. (1985). The Double ABCX model of family

stress and adaptation: an empirical test by analysis of structural equations with latent

• variables. Journal of Marriage and the Family, 47(4), 811–825.
• McCubbin HI, Patterson JM. (1983). The family stress process: the double ABCX model of

adjustment and adaptation. Marriage and Family Review.

44

References

• Patterson, J. M. (1988). Families Experiencing Stress: The Family Adjustment and

Adaptation Response Model. Family Systems Medicine, 6(2), 202-237.

• Perry, A. (2004). A model of stress in families of children with developmental disabilities:

Clinical and research applications. Journal on Developmental Disabilities, 11(1), 1–16.

• Singh, N. N., Lancioni, G. E., Winton, A. S. W., Fisher, B. C., Wahler, R. G., McAleavey, K.,

… Sabaawi, M. (2006). Mindful Parenting Decreases Aggression, Noncompliance, and Self-Injury in Children with Autism. Journal of Emotional and Behavioral Disorders, 14, 169–177.

• Smith BJ, Tang KC, Nutbeam D. (2006). WHO health promotion glossary: new terms.

Health Promotion International, 21, 340–345.

• Weiss, J., & Lunsky, Y. (2010). Service Utilization Patterns in Parents of Youth and Adults

With Intellectual Disability Who Experienced Behavioral Crisis. Journal of Mental Health Research in Intellectual Disabilities, 3(3), 145–163.

• Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals

with autism spectrum disorders. Autism, 18(8), 985–995.

• Weiss, J. A., & Lunsky, Y. (2011). The Brief Family Distress Scale: A Measure of Crisis in

Caregivers of Individuals with Autism Spectrum Disorders. Journal of Child and Family Studies, 20(4), 521–528.