promoting family wellness conceptual and evidence based

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Promoting Family Wellness: Conceptual and Evidence-based Approaches Dr. Jonathan Weiss, Ph.D., C.Psych. Associate Professor November 13, 2018; Oklahoma Statewide Autism Conference 0 Focus on family The health of the family interacts with

  1. Promoting Family Wellness: Conceptual and Evidence-based Approaches Dr. Jonathan Weiss, Ph.D., C.Psych. Associate Professor November 13, 2018; Oklahoma Statewide Autism Conference 0

  2. 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? 1

  3. 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 other settings” (Smith et al. 200 6) • While families may have more struggle, they have similar levels of positive wellbeing 2

  4. Take a moment • Think about your family’s contexts… 3

  5. 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 4

  6. 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) 5

  7. What do families need? (Gratsa et al. 2004) • Information • Practical issues • Finances • Complaint procedures: Rights • Legislation • Crisis planning 6

  8. 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 7

  9. 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 8

  10. Process or Outcome? 9

  11. 10 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) • Perry � s (2004) stress model 10

  12. 11 Double ABCX 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 11 with latent variables. Journal of Marriage and the Family , 47 (4), 811–825.

  13. Is crisis the same thing as stress? 12 • 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 12

  14. Family Adjustment and Adaptation Resource Model Crisis Crisis Crisis Adjustment Phase Adaptation Phase FamilyAdjustment Family Adaptation From "Families Experiencing Stress: The Family Adjustment and Adaptation Response Model," by J. M. Patterson, 1988, Family Systems 13 Medicine, 6(2), pp. 202-237.

  15. 14 Resiliency Model of Family Stress, Adjustment, and Adaptation 14

  16. Perry model 15

  17. Themes from qualitative research Family • Service discrepancy • Constant advocacy • Transition issues • Reactive system • 16

  18. 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. 17

  19. Impact on the family • My daughter needs support too, the rest of the family needs support. My husband has depression and I � m sure that it would be different if his life wasn � t so stressful. And I feel like I � m an Atlas holding up the world … I am holding the family together and I need a break but I can � t. I need to be strong enough until what? Never ends. 18

  20. Theme: Level of service does not meet the level of need • It is fine to say that you have services. But don � t 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 weren � t severe. But the service doesn � t fit what we need so we are helpless. 19

  21. Theme: Exhausted from the need for constant advocacy • … the advocacy is taking its toll… I don � t need to be on medications, but I am just exhausted because I am on this mission to make sure my boy is cared for. 20

  22. Theme: Transition and lifespan issues • I � m 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 aren � t there for her now and it supposedly much worse for adults, what � s going to happen to her? • I worry about her becoming a recluse … she becomes more and more isolated the older she gets 21

  23. Theme: Reactive systems • After they realized it was unmanageable for us, THEN [the services] all got together. We had meetings of over 20 people. But the pressure was still on to take her back home because there was nowhere to place her. 22

  24. Families in distress 23

  25. 24 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 someone � s property when feeling angry? 24

  26. Crisis Definitions • Roberts (2000) • An acute disruption of psychological homeostasis in which one � s 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 25

  27. Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in Cross-sectional work can help us build rich families of individuals with autism spectrum disorders. Autism , 18 (8), 985–995. conceptual models of family experiences 26

  28. Crisis themes: Internal resources and subjective appraisal • Lack/loss of coping • We would no longer be able to manage at least one key area of our lives (e.g., employment, relationships, etc.,) • Hopelessness • No hope for improvement or change for the better in a circumstance 27

  29. 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 28

  30. Severity of Crisis Crisis as dimensional: Brief Family Distress Scale (Weiss & Lunsky, 2011) 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 29 29

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