1 / 34

Family Quality of Life: From Conceptualization to Theory

Family Quality of Life: From Conceptualization to Theory. Ann Turnbull – turnbull@ku.edu Nina Zuna – nzuna@ku.edu Jean Ann Summers – jsummers@ku.edu Kimberly Hu – huxiaoyi@ku.edu International Society for Quality-of-Life Studies San Diego, CA December 7, 2007 www.beachcenter.org.

oceana
Download Presentation

Family Quality of Life: From Conceptualization to Theory

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. Family Quality of Life: From Conceptualization to Theory Ann Turnbull – turnbull@ku.eduNina Zuna – nzuna@ku.edu Jean Ann Summers – jsummers@ku.edu Kimberly Hu – huxiaoyi@ku.edu International Society for Quality-of-Life Studies San Diego, CA December 7, 2007 www.beachcenter.org

  2. Perspectives Related to Family Life and Autism My name is Debra Shaumeyer and I am the mother of 6-year-old Austin Shaumeyer. When I found out Austin had Autism, I was given a sheet of resources to contact and was told to go see my Early Childhood Center, they can help me with my son. This road has been a nightmare. I went to my school district for help…

  3. My school district gives my son the One Size Fits All program. My son is barely making progress…ROAD BLOCK…My husband and I tell ourselves, we will go thru our private insurance…Our health insurance states it covers Speech and Occupational therapy for Autism. I filed claim after claim and appeal after appeal. There was nothing resolved except my empty bank account…ROAD BLOCK… We applied for help with our local Regional Center. There is a 3-year or more wait list…So, we re-financed our home so we could pay for extra therapies and early interventions for him.

  4. When that wasn’t enough, we turn to our credit cards to help pickup the slack. ROAD BLOCK. Please understand and listen when I tell you how stressful and hurtful Autism can affect a marriage. There is nowhere to go for counseling…There are arguments and disagreements about finances, school districts, employment hours, long term goals for our son. I’m never home because I’m fighting for my son…ROAD BLOCK...I want you to know that Autism is affecting my family.

  5. Research Review Search • Key words • Family quality of life • Quality of family life • 21 databases • Final selection resulted in 25 articles

  6. Definitions of FQOL • Only a few included an explicit definition • Emphasis on subjective perception • Definition implied by measures

  7. Brown, Brown, and Colleagues • A meeting place of: • Individual family members’ quality of life • Factors that affect the whole family

  8. Beach Center Definition • All family members’ needs are met, and family members have opportunities to pursue and achieve goals that are meaningful to them. • Family members enjoy their life together as a family.

  9. Family Quality of Life Theoretical Framework

  10. Theorizing About Family Quality of Life • Individual and family factors interact with each other and with individual and family supports to produce FQOL outcomes. • This FQOL outcome leads to changes in individual and family factors which, in turn, require changes in individual and family support systems to produce a new level of FQOL.

  11. Orientation of Domains/Factors • Family-level • Individual family-member • Extra-familial

  12. Family-Level Orientation • Conditions required to assure family’s capacity to meet individual-member needs • Family interaction – communication, support among members • Cohesion – bonding, spending time together • Decision-making – authoritative, cooperative

  13. Individual Family-Member Needs • Physical well-being • Health • Health care • Sleep/fatigue • Emotional well-being • Emotional distress • Support from others • Love

  14. Extra-Familial Supports • Extended family • Neighborhood/community • Peer relationships • Professional services

  15. Analysis of 4 Tools • All include all 3 orientations • Need to separate supports from outcomes • Emphasis is on subjective rating of satisfaction • Need more objective ratings • Same domain names have quite different indicators – for example, emotional well-being • Need to work toward consensus

  16. Family Quality of Life Theoretical Framework

  17. Individual Factors

  18. Individual Factors • Demographics – age, gender • Characteristics – type of disability, behavior • Beliefs and expectations – goals, preferences

  19. Individual Factors • 33% focused on one or more child characteristics as a predictor variable • Child’s age • Type/severity of disability • Presence of behavior problem

  20. Severity of disability and presence of behavior problems tended to negatively relate to FQOL • Families of typically developing children tended to have higher FQOL than families of children with disabilities

  21. Family Factors

  22. Family Factors • Demographics – income, ethnicity, family structure • Individual-member characteristics – stress, coping styles, and beliefs/expectations • Family-unit characteristics – cohesion, problem-solving, extent of agreement on beliefs/expectations

  23. Family Factors • 42% included one or more family characteristics as predictor or mediating variable • Family income • Family size • Marital status • Parental employment • Race/ethnicity

  24. FQOL usually lower in families with low income and from backgrounds other than European American • FQOL lower in step-families • 17% included a measure of stress, depression, or negative well-being • Higher levels of depression/stress have a negative relationship with FQOL

  25. Family Quality of Life Theoretical Framework

  26. Individual Supports

  27. Family Supports

  28. Individual and Family Supports • Approximately one-third included a variable related to services and supports • Evenly split between service focus on children and children/families • No support interventions were focused entirely on families • All of these studies reported positive associations between supports and FQOL.

  29. Satisfaction with Supports • Based on data from I. Brown et al. (2006) and R. Brown et al. (2006): • Satisfaction with family relations is highest or next-to-highest • Satisfaction with support from others and from disability services is lowest or one of lowest domains • Far more research focuses on family characteristics as contrasted to quality of individual and family supports

  30. Family income predicts higher FQOL.

  31. Severity of disability and presence of behavior problems predict lower FQOL

  32. When children and families receive comprehensive positive behavior support services, the services mediate the negative impact of child behavior problems on FQOL.

  33. “For all that has been, thanks; for all that will be, yes!” Dag HammarskjöldSecretary-General, United Nations(1905-1961)

More Related