Family Quality of Life – what does this mean for Policy and Practice in Australia? Anoo Bhopti Lecturer (Paediatrics) Occupational Therapy La Trobe University ECIA National Conference – Pathways to Participation August , 2012 PhD Student Department of Occupational Therapy Faculty of Medicine, Nursing and Allied Health Monash University  

Overview Literature review findings Quality of life Family Quality of Life Implications for Policy, Practice and further research

Literature review and preliminary findings Main search terms – quality of life, Family quality of life, ECI, family, disability, children with disabilities, service outcomes 115 papers collected so far Majority of the papers were on the topic of QoL Papers addressing outcome measures for parent satisfaction or stress were excluded even though they indirectly related to QoL The most frequently discussed model in QoL currently is the operational model by Schalock et al. (2010) 24 papers on FQOL, from 2002 to 2012 and still counting… FQOL was derived from QoL to understand the quality of life of the people around the person with a disability There are two main outcome measures for FQOL used in research La Trobe University

Lets look at ‘Quality of Life’ first “You’ll achieve nothing in life by being happy all the time, Murgatroyd!”

Quality of Life – Why is it important? QoL is an important concept because it highlights the conditions required for individuals to enjoy wellbeing and prosperity at an individual level (Soutphammasane, 2011) QoL has also been referred to an indicator for a country’s sustainability and community rather than Gross Domestic Product (GDP) (Hoegen, 2009) The Australian Commonwealth Treasury has developed a “wellbeing framework” to support its economic analysis (Commonwealth Treasury of Australia, 2004) The World Health Organization (WHO) in 1997 incorporated the concept of health into QoL implying that QoL is affected by a person’s health, emotional state and level of independence, social relationships and personal beliefs Measurement of health and the effects of health care must include not only an indication of changes in the frequency and severity of diseases but also an estimation of well being and this can be assessed by measuring the improvement in the QoL related to health care (WHOQOL, 1997).

Quality of Life – Operational Model (Schalock et al., 2010) Emotional Well being Material well being Physical well being Moderators Personal development Mediators Self-determination I will very briefly present this model by Scahlock et al that guided QoL theory and practice and later informed FQOL. 3 principal components allow for a model to become operational 1 Concepts – that provide a way to organise phenomena 2. Indicators – that provide measures of the phenomena 3. variables – that allow explanation of factors influencing the phenomena The concepts here are the 8 core domains(point and read) Indicators are personally and culturally sensitive and measure phenomena for eg in the domain “Personal Development”, 6 indicators are used to measure PD and questions are asked like “ does your job and what you do make you feel important”; “ Are you getting training to get a better job?” “ Do others give you a chance to become what you want to be and so on…. And Lastly Variables are the moderators and mediators Moderators can be qualitative (gender or race) or quantitative (IQ, SES) These variables influence outcomes eg Residential setting or service model are moderators that can influence QoL The role these moderators and mediators play in QoL domains is not completely clear at this time ; as research continues this will get clearer. Personal relations Indicators Social inclusion Rights

Quality of Life – Australia Deakin University’s The Australian Centre on Quality of Life (ACQOL) has been doing extensive work in this area and the main work has been published by Professor Robert Cummins who has over 200 books, bookchapters and papers and reports. ACQOL define QoL as … "Quality of life is both objective and subjective. Each of these two axes comprises several domains which, together, define the total construct. Objective domains are measured through culturally relevant indices of objective well-being. Subjective domains are measured through questions of satisfaction”. Cummins & Mead, (2010) designed an instrument “Comprehensive QoL Scale(1997)” with three unique qualities ComQol – A: designed for use with the general adult population. ComQol – I: designed for use with people who have an intellectual disability or other form of cognitive impairment. ComQol – S: designed for use with adolescents 11-18 years who are attending school. http://www.deakin.edu.au/research/acqol/instruments/comqol-scale/

Quality of Life - Learnings It provides a valid framework for service delivery policies and program practices It suggests that the program inputs, processes and external factors should act as moderator or mediator variables It provides an application and research framework for emerging trans-disciplinary approach to research and application that involves researchers and practitioners working jointly

Family Quality of Life – What constitutes a family?? Family is defined as those people that consider themselves a family (whether or not they are related by blood or marriage), and support and care for each other on a regular basis (Turnbull, 2011) In Australia, families are defined as two or more persons, one of whom is at least 15 years of age, who are related by blood, marriage (registered or de facto), adoption, step or fostering; and who are usually resident in the same household. (Australian Bureau of Statistics, 2010). In 2009-2010 there were 8.4 million households in Australia, of which 74% ( 6.2 million households) contained one or more families. Family ecology is the social environment of the family that consists of the family’s informal, formal and intermediate supports (McWilliams, 2010)

Family Quality of Life – Why is it important?? Family ecology is particularly important in Early Childhood Intervention Services(ECIS) as it determines who the existing supports are and this has been found to be a good predictor of early intervention outcomes (Dunst, 2010) Using a family-centred approach in paediatrics results in greater parental satisfaction with services, enhanced parental psychosocial wellbeing and improves the psychological adjustment of children (King, Law, King & Rosenbaum 1998) Parents and family members become the primary carers of a child with a disability on an intensive basis, which impacts family behaviour and lifestyle and impacts on their FQOL FQOL has emerged as an important outcome of service delivery for children with developmental delays and disabilities (Davis & Gavidia-Payne, 2009) Applying a FQOL framework has the advantage of bringing together a wider range of aspects of family life, that can assist service providers to better understand the experience of families, and to pursue more effective ways of supporting them (Isaacs et al., 2007)

FQOL – unified theory Zuna, Summers, Turnbull et al. 2010 Family characteristics and dynamics interact with individual characteristics to influence FQOL outcomes; Family and individual factors like supports and services act as mediating or moderating variables on the effects of family-unit or individual member factors to predict FQOL; Program quality predicts implementation of best practice impacts which in turn impacts an individual factor and in turn impacts FQOL

Measuring FQOL Majority of the research has been done in the USA and Canada being second followed by Australia and some work has been done in South America, China, Israel, Taiwan , Korea and Ireland Two scales were used widely to measure FQOL across the studies The Beach Centre Family Quality of Life Survey (BC-FQOL,2002) and the International Family Quality of Life Scale (FQOL-S, 2006)

Tools used to measure FQOL Beach Centre Family Quality of Life Survey (BC-FQOL) Turnbull et al., 2002 International Family Quality of Life Scale (FQOL-S) Brown et al., 2006 5 Domains, 25 items 9 Domains, Family Interaction Parenting Emotional Well-Being Physical/Material Well-Being, and Disability-Related support Health Financial well-being Family relationships Support from other people Support from disability-related services Spiritual and cultural beliefs Careers and preparing for careers Leisure and enjoyment of life and Community and civic involvement 45 minutes to an hour 1.5 to 2 hours

Some interesting results from the literature review so far…. The families without a child with a disability showed statistically significantly higher levels of satisfaction across all domains than families with a child with a disability Severity of disability is a significant predictor of mothers’ and fathers’ satisfaction with their FQOL Family relations, leisure and enjoyment of life, career and career planning, and health were perceived as contributing the most to overall FQOL. Disability related support service’s contribution to overall FQOL was not perceived as significant There are no significant differences between fathers’ and mothers’ assessments regarding their overall FQOL Poverty affects FQOL on 5 out of the 10 FQOL domains: (a) health, (b) productivity, (c) physical environment, (d) emotional wellbeing, and (e) family interaction. Due to the movement of inclusion and de-institutionalisation of people with disabilities and supporting them within the community with their parents there has been an impact on the carer’s (particularly the mother) family behaviour and lifestyle. This can affect FQOL even though there are supports for inclusion Parental perceptions and experiences of family-centred professional support was one of the strongest predictors of FQOL

IMPLICATIONS FOR POLICY Reports that good national economic policy is good family policy and good family policy seems to be good disability policy. Policy needs to consider the competing equities context ie that people with severe disabilities versus mild disabilities have varying needs of support If people with a disability are to be successfully supported within their families, public policy needs to take evidence around FQOL into account when developing and tailoring support services Providing adequate levels of services for families makes a difference to their FQOL Parent education about policy improves their FQOL Respite care services need more funding to improve FQOL Because of the cross cultural validation of the instruments, policies, plans, projects and programmes orientated to favour the enhancement of persons with disabilities can be developed.

IMPLICATIONS FOR PRACTICE There needs to be a single point of entry into the service system, recognition of the holistic needs of children and families including poverty and improving academic outcomes Good practice includes expanding full-service models to ensure that special education and related services are imbedded in these models with emphasis on needs of students with disabilities who experience the challenges of poverty. The BC-FQOLS can be used as an appropriate outcome measure for family services such as parenting education, counselling, or family support programs.  FQOL is clearly identified as an outcome and this promotes the need for staff training and personnel preparation and would challenge service providers to implement quality enhancement techniques to promote FQOL.

IMPLICATIONS FOR PRACTICE Practitioners need to know that family carers report the impact of caring for a family member with an intellectual disability as negatively affecting their personal social networks and social activities and need to plan services accordingly Services need to look for attributes, needs, and processes that have the greatest positive impact on FQOL and then provide resources to families and professionals to make things happen to stabilise and improve FQOL Families’ participation in identifying concerns, priorities, and resources may not be sufficient for promoting positive family outcomes however a joint determination of needs and services by service providers and families is needed. The emphasis of providing services needs to shift to how supports can be provided at each ecological level (e.g., support for the individual with a disability, support for family members, support for professionals in community settings) in order to lessen problem behaviour and replace it with appropriate behaviour as means to improve family outcomes.

IMPLICATIONS FOR FUTURE RESEARCH Studying the cost-benefit of existing policies; impact of welfare and human services and other indices over time on FQOL. Adding qualitative element to FQOL research, families having more than one child with a disability, the influence of environmental factors on FQOL Studies with a larger sample of fathers and from a lower socio-economic status Using FQOL as an outcome measure for early childhood or early intervention programmes Using FQOL to support policy recommendations to improve the types and level of family supports and services

REFERENCES Australian Bureau of Statistics. (2010). Measures of Australia's progress, 2010: Is life in Australia getting better? cat.no.1370, from http://www.abs.gov.au/ausstats/abs@.nsf/lookup/by%20subject/1370.0~2010~Main%20p age%20%281%29 Cummins, R., & Mead, R. (2010). What makes us happy? Ten years of the Australian Unity Wellbeing Index (2nd ed.). Melbourne: Australian Unity. Davis, K., & Gavidia-Payne, S. (2009). The impact of child, family and professional support characteristics on the quality of life in families of young children with disabilities. Journal of Intellectual and Developmental Disability, 34(2), 153-162. Dunst, C. (2010). Advances in the understanding of the characteristics and consequences of family-centred practices. Paper presented at the ECIA Professional Development Series, Melbourne. Hoegen, M. (2009). Statistics and quality of life: measuring progress - a world beyond GDP. Retrieved from www.inwent.org Isaacs, B., Brown, I., Brown, R., Baum, N., Myerscough, T., Neikrug, S., . . . Wang, M. (2007). The International Family Quality of Life Project: Goals and Description of a Survey Tool. Journal of Policy and Practice in Intellectual Disabilities, 4(3), 177-185. doi: 10.1111/j.1741-1130.2007.00116.x King, G., Law, M., King, S., & Rosenbaum, P. (1998). Parents’ and service providers’ perceptions of the family-centredness of children’s rehabilitation services. Physical & Occupational Therapy in Pediatrics, 18(1), 21-40.

REFERENCES McWilliam, R. A. (2010b). Routines-Based Early Intervention Baltimore, Maryland: Paul Brookes Publishing. Schalock, R., Kenneth, K., Verdugo, M., & Gomez, L. (2010). Quality of life model development and use in the field of intellectual disability. In R. Kober (Ed.), Enhancing the quality of life of people with intellectual disabilities (Vol. 41). Vic: Springer. Turnbull, A. (2011). Theorizing and measuring quality of life. Paper presented at the ISEI Conference, New York. Turnbull, A., Summers, J., Lee, S., & Kyzar, K. (2007a). Conceptualization and measurement of family outcomes associated with families of individuals with intellectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 13, 346-356. WHOQOL. (1997). The World Health Organization; Measuring Quality of Life, Division of Mental Health and prevention of substance abuse Zuna, N., Summers, J., Turnbull, A., Hu, X., & Xu, S. (2010). Theorizing about family quality of life. In R. Kober (Ed.), Enhancing the Quality of Life of People with Intellectual Disabilities (Vol. 41). Vic: Springer Science.

Acknowledgements To all the families and children I have worked with… Yooralla