Promoting Family Wellness: Conceptual and Evidence-based Approaches

Transcription

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

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. 2006) 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 8 Recognition of Experience of stigma / prejudice, isolation Positive and negative past experiences

10 9 Process or Outcome?

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 11 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),

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

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

16 15 Perry model

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 23 Families in distress

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 families of individuals with autism spectrum disorders. Autism, 18(8), Cross-sectional work can help us build rich 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

31 Severity of crisis responses in a community sample 30

32 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 <

33 Working with families 32

34 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 33

35 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 34

36 Mom to Mom ACT for mothers Kenneth Fung, Lee Steel, Kelly Bryce, Johanna Lake, Yona Lunsky 35

37 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 36

38 37 Acceptance and Commitment Therapy

39 38 Supporting families together

40 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 one that stands in the open, where it is compelled to struggle for its existence against the winds and rains. Napoleon Hill 39

41 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 individual s needs 40

42 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 41

43 Thank you! Jonathan Weiss, PhD,CPsych Dept. of Psychology York University Tel:

44 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), 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 of 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), McCubbin HI, Patterson JM. (1983). The family stress process: the double ABCX model of adjustment and adaptation. Marriage and Family Review. 43

45 References Patterson, J. M. (1988). Families Experiencing Stress: The Family Adjustment and Adaptation Response Model. Family Systems Medicine, 6(2), Perry, A. (2004). A model of stress in families of children with developmental disabilities: Clinical and research applications. Journal on Developmental Disabilities, 11(1), 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, Smith BJ, Tang KC, Nutbeam D. (2006). WHO health promotion glossary: new terms. Health Promotion International, 21, 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), Weiss, J. A., Wingsiong, A., & Lunsky, Y. (2014). Defining crisis in families of individuals with autism spectrum disorders. Autism, 18(8), 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),