Family quality of life (FQoL) is considered one of the aims of early intervention (EI) services and a good indicator of service quality. Families were recruited from EI centers in 12 of 17 communities (states) in Spain. This study describes the FQoL of 250 Spanish families with children aged 0 to 6 years in EI services during a family-centered implementation process. We used an EI-specific FQoL scale that includes families’ perception of their child’s functioning as one factor. We also describe the relationships among individual, family, and service variables as well as FQoL. Type of disability, socioeconomic status, and family-centered practices impacted Child Functioning, Overall Life Situation, and Access to Information and Services factors, respectively. Fewer number of professionals involved was related with greater perception of child’s functionality. Family-centeredness, type of family, and type of disability were the most influencing variables for the Total score. Implications for practice are discussed.
BaileyD. B.McWilliamR. A.DarkesL. A.HebbelerK.SimeonssonR. J.SpikerD.WagnerM. (1998). Family outcomes in early intervention: A framework for program evaluation and efficacy research. Exceptional Children, 64, 313-328.
2.
BakerB. L.McIntyreL. L.BlacherJ.CrnicK.EdelbrockC.LowC. (2003). Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time. Journal of Intellectual Disability Research, 47, 217-230.
3.
Balcells-BalcellsA. (2011). L’impacte dels serveis i la relació professional en la qualitat de vida de les famílies amb fills amb discapacitat intellectual [Impact of services and relationships with professionals in the family quality of life of families with children with intellectual disabilities]. Doctoral dissertation, Universitat Ramon Llull, FPCEEB—Psicologia, Barcelona, Spain.
4.
Balcells-BalcellsA.GinéC.Guàrdia-OlmosJ.SummersJ. A. (2011). Family quality of life: Adaptation to Spanish population of several family support questionnaires. Journal of Intellectual Disability Research, 55, 1151-1163.
5.
BelchicJ. K. (1996). Stress, social support and sense of parenting competence: A comparison of mothers and fathers of children with autism, down syndrome and normal development across the family life cycle [Abstract]. Dissertation Abstracts International, Section A: The Humanities and Social Sciences, 57, 574.
6.
BenderR.LangeS. (2001). Adjusting for multiple testing—When and how?Journal of Clinical Epidemiology, 54, 343-349.
7.
BentlerP. M. (1990). Comparative fit indices in structural models. Psychological Bulletin, 107, 238-246.
8.
BhoptiA.BrownT.LentinP. (2016). Family quality of life: A key outcome in early childhood intervention services—A scoping review. Journal of Early Intervention, 38, 191-211.
9.
BollenK. A. (1989). A new incremental fit index for general structural equations models. Sociological Methods and Research, 17, 303-316.
10.
BromleyJ.HareD. J.DavisonK.EmersonE. (2004). Mothers supporting children with autistic spectrum disorders social support, mental health status and satisfaction with services. Autism, 8, 409-423.
11.
BrownI. (2012, July9-14). Family quality of life: Comparisons of 19 studies in 14 countries. Presented at World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities, Halifax, Nova Scotia, Canada.
12.
BrownI.AnandS.FungW.IsaacsB.BaumN. (2003). Family quality of life: Canadian results from an international study. Journal of Developmental and Physical Disabilities, 15, 207-230.
13.
BrownI.BrownR. I.BaumN. T.IsaacsB. J.MyerscoughT.NeikrugS.. . . WangM. (2006). Family Quality of Life Survey: Main caregivers of people with intellectual or developmental disabilities. Toronto, Ontario, Canada: Surrey Place Centre.
14.
BrownR. I.MacAdam–CrispJ.WangM.IarocciG. (2006). Family quality of life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3, 238-245.
15.
BruderM. B.DunstC. J. (2005). Personnel preparation in recommended early intervention practices degree of emphasis across disciplines. Topics in Early Childhood Special Education, 25, 25-33.
16.
ČagranB.SchmidtM.BrownI. (2011). Assessment of the quality of life in families with children who have intellectual and developmental disabilities in Slovenia. Journal of Intellectual Disability Research, 55, 1164-1175.
17.
CaplesM.SweeneyJ. (2011). Quality of life: A survey of parents of children/adults with an intellectual disability who are availing of respite care. British Journal of Learning Disabilities, 39, 64-72.
18.
CórdobaL.GómezJ.VerdugoM. A. (2008). Family quality of life of people with disability: A comparative analysis. Universitas Psychologica, 7, 369-383.
19.
CórdobaL.VerdugoM. A. (2003). Aproximación a la calidad de vida de niños con TDAH: un enfoque cualitativo.[Approach to the quality of life of relatives of children with ADHD: A qualitative perspective]. Siglo Cero, 34, 19-33.
20.
Dalmau-MontalaM.Balcells-BalcellsA.GinéC. G.PérezM. C.MasjoanO. C.CuscóY. S.. . . MontserratN. C. (2017). How to implement the family-centered model in early intervention. Anales de Psicología/Annals of Psychology, 33, 641-651.
21.
DavisK.Gavidia-PayneS. (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 & Developmental Disability, 34, 153-162.
22.
DempseyI.ForemanP.SharmaN.KhannaD.AroraP. (2001). Correlates of parental empowerment in families with a member with a disability in Australia and India. Developmental Disabilities Bulletin, 29, 113-131.
23.
DumasJ. E.WolfL. C.FismanS. N.CulliganA. (1991). Parenting stress, child behavior problems, and dysphoria in parents of children with autism, Down syndrome, behavior disorders, and normal development. Exceptionality, 2, 97-110.
24.
DunstC. J.BruderM. B. (2002). Valued outcomes of service coordination, early intervention, and natural environments. Exceptional Children, 68, 361-375.
25.
DunstC. J.DempseyI. (2007). Family–professional partnerships and parenting competence, confidence, and enjoyment. International Journal of Disability, Development and Education, 54, 305-318.
26.
DunstC. J.JohnsonC.TrivetteC.HambyD. (1991). Family-oriented early intervention policies and practices: Family-centered or not?Exceptional Children, 58, 115-126.
27.
DunstC. J.TrivetteC.HambyD. (2007). Meta-analysis of family-centered helpgiving practices research. Mental Retardation and Developmental Disabilities Research Reviews, 13, 370-378.
28.
FengX. T.YiS. G. (2002). Family quality of life for citizens: Indicators and structure. Research on Sociology, 24, 107-118.
29.
García-GrauP. (2015). Atención Temprana: Modelo de intervención en entornos naturales y calidad de vida familiar [Early intervention: Intervention in natural environments and family quality of life]. (Unpublished doctoral dissertation). Universidad Católica de Valencia, España.
30.
García-GrauP.McWilliamR. A.Martínez-RicoG.Grau-SevillaM. D. (2018). Factor structure and internal consistency of a Spanish version of the family quality of life (FaQoL). Applied Research in Quality of Life, 13, 385-398. doi:10.1007/s11482-017-9530-y
31.
Gavidia-PayneS.StonemanZ. (1997). Family predictors of maternal and paternal involvement in programs for young children with disabilities. Child Development, 68, 701-717.
32.
GinéC.VilasecaR.GràciaM.MoraJ.OrcasitasJ. R.SimónC.. . . Simó-PinatellaD. (2013). Spanish family quality of life scales: Under and over 18 years old. Journal of Intellectual & Developmental Disability, 38, 141-148.
33.
Grupo Atención Temprana. (2000). Libro blanco de la atención temprana [White Book of Early Intervention] (Documentos 55/2000). Madrid, Spain: Real Patronato de Prevención y Atención a Personas con Minusvalía.
34.
Grupo Atención Temprana. (2011). La realidad actual de la atención temprana en España [The current Reality of Early Intervention in Spain] (Real Patronato sobre Discapacidad). Madrid, Spain: Ministerio de Sanidad, Política Social e Igualdad.
35.
HambletonR. K. (2005). Issues, designs and technical guidelines for adapting tests into multiple languages and cultures. In HambletonR. K.MerendaP. F.SpielbergerS. D. (Eds.), Adapting educational and psychological tests for cross-cultural assessment (pp. 3-38). Mahwah, NJ: Lawrence Erlbaum.
36.
Hiebert-MurphyD.TruteB.WrightA. (2011). Parents’ definition of effective child disability support services: Implications for implementing family-centered practice. Journal of Family Social Work, 14, 144-158.
37.
HoE.JamesN.BrownI.Firkowska-MankiewiczA.ZasępaE.WołowiczA.WapiennikE. (2013). Family quality of life of polish families with a member with intellectual disability. Journal on Developmental Disabilities, 19, 36-41.
38.
HoffmanL.MarquisJ.PostonD.SummersJ. A.TurnbullA. (2006). Assessing family outcomes: Psychometric evaluation of the Beach Center Family Quality of Life Scale. Journal of Marriage and Family, 68, 1069-1083.
39.
HuX.WangM.FeiX. (2012). Family quality of life of Chinese families of children with intellectual disabilities. Journal of Intellectual Disability Research, 56, 30-44.
40.
IsaacsB. J.BrownI.BrownR. I.BaumN.MyerscoughT.NeikrugS.. . . WangM. (2007). The international family quality of life project: Goals and description of a survey tool. Journal of Policy and Practice in Intellectual Disabilities, 4, 177-185.
41.
JöreskogK. G.SörbomD. (1979). Advances in factor analysis and structural equations models. Cambridge, MA: ABT Associates.
42.
KochanekT. T.BukaS. L. (1998). Patterns of service utilization child, maternal, and service provider factors. Journal of Early Intervention, 21, 217-231.
43.
KraussM. W.SeltzerM. M.JacobsonH. T. (2005). Adults with autism living at home or in non-family settings: Positive and negative aspects of residential status. Journal of Intellectual Disability Research, 49, 111-124.
44.
LinJ. D.HuJ.YenC. F.HsuS. W.LinL. P.LohC. H.WuJ. L. (2009). Quality of life in caregivers of children and adolescents with intellectual disabilities: Use of WHOQOL-BREF survey. Research in Developmental Disabilities, 30, 1448-1458.
45.
MasJ. M.BaquésN.Balcells-BalcellsA.DalmauM.GinéC.GràciaM.VilasecaR. (2016). Family quality of life for families in early intervention in Spain. Journal of Early Intervention, 38, 59-74.
46.
McStayR. L.TrembathD.DissanayakeC. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44, 3101-3118.
47.
McWilliamR. A. (1992). Family-centered intervention planning: A routines-based approach. Tucson, AZ: Communication Skill Builders.
48.
McWilliamR. A. (2010). Routines-based early intervention: Supporting young children and their families. Baltimore, MD: Paul H. Brookes.
49.
McWilliamR. A.CaseyA. M. (2013). Factor analysis of family quality of life. Unpublished manuscript. Nashville, TN.
50.
McWilliamR. A.LangL.VandiviereP.AngellR.CollinsL.UnderdownG. (1995). Satisfaction and struggles: Family perceptions of early intervention services. Journal of Early Intervention, 19, 43-60.
51.
MeralF.CavkaytarA.TurnbullA. P.WangM. (2013). Family quality of life of Turkish families who have children with intellectual disabilities and autism. Research and Practice for Persons with Severe Disabilities, 38, 233-246.
52.
MuñizJ.HambletonR. K. (2000). Adaptación de los tests de unas culturas a otras [Adaptation of tests from one culture to another]. Metodología de las Ciencias del Comportamiento, 2, 129-149.
53.
NachshenJ. S. (2005). Empowerment and families: Building bridges between parents and professionals, theory and research. Journal on Developmental Disabilities, 11, 67-75.
54.
ParkJ.HoffmanL.MarquisJ.TurnbullA.PostonD.MannanH.. . . NelsonL. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research, 47, 367-384.
55.
PostonD.TurnbullA.ParkJ.MannanH.MarquisJ.WangM. (2003). Family quality of life: A qualitative inquiry. American Association on Mental Retardation, 41, 313-328.
56.
PozoP.SarriáE.BriosoA. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58, 442-458.
57.
SarisW. E.StronkhorstH. (1984). Causal modelling in non-experimental research. Amsterdam, The Netherlands: Sociometric Research Foundation.
58.
SchalockR. L.BrownI.BrownR.CumminsR. A.FelceD.MatikkaL.. . . ParmenterT. (2002). Conceptualization, measurement, and application of quality of life for persons with intellectual disabilities: Report of an international panel of experts. Mental Retardation, 40, 457-470.
59.
SchwichtenbergA.PoehlmannJ. (2007). Applied behaviour analysis: Does intervention intensity relate to family stressors and maternal wellbeing?Journal of Intellectual Disability Research, 51, 598-605.
60.
ScorgieK.WilgoshL.McDonaldL. (1998). Stress and coping in families of children with disabilities: An examination of recent literature. Developmental Disabilities Bulletin, 26, 22-42.
61.
SheldenM. L.RushD. D. (2013). The early intervention teaming handbook: The Primary Service Provider Approach. Baltimore, MD: Brookes.
62.
ShonkoffJ. P.Hauser-GramP.KraussM. W.UpshurC. C. (1992). Development of infants with disabilities and their families. Monographs of the Society for Research in Child Development, 57, 1-163.
63.
SloperP.TurnerS. (1992). Service needs of families of children with severe physical disability. Child: Care, Health and Development, 18, 259-282.
64.
SteigerJ. H.LindC. (1980, May). Statistically based tests for the number of common factors. Paper presented at the annual meeting of the Psychometric Society, Iowa City, IA.
65.
SummersJ. A.HoffmanL.MarquisJ.TurnbullA.PostonD. (2005). Relationship between parent satisfaction regarding partnerships with professionals and age of child. Topics in Early Childhood Special Education, 25, 48-58.
66.
SummersJ. A.MarquisJ.MannanH.TurnbullA. P.FlemingK.PostonD. J.. . . KupzykK. (2007). Relationship of perceived adequacy of services, family–professional partnerships, and family quality of life in early childhood service programmes. International Journal of Disability, Development and Education, 54, 319-338.
67.
TurnbullA. P.Blue-BanningM.TurbivilleV.ParkJ. (1999). From parent education to partnership education: A call for a transformed focus. Topics in Early Childhood Special Education, 19, 164-171.
68.
TurnbullA. P.SummersJ. A.TurnbullR.BrothersonM. J.WintonP.RobertsR.. . . StoweM. (2007). Family supports and services in early intervention: A bold vision. Journal of Early Intervention, 29, 187-206.
69.
TurnbullA. P.TurbivilleV.TurnbullH. R. (2000). Evolution of family-professional partnerships: Collective empowerment as the model for the early twenty-first century. In ShonkoffJ. P.MeiselsS. J. (Eds.), Handbook of early childhood intervention (2nd ed., pp. 630-650). Cambridge, UK: Cambridge University Press.
70.
TurnbullA. P.TurnbullH. R. (2001). Families, professionals, and exceptionality: Collaborating for empowerment (4th ed.). Upper Saddle River, NJ: Merrill Prentice Hall.
71.
TurnbullA. P.TurnbullH. R.AgostaJ.ErwinE.FujiuraG.SingerG.SoodakL. (2005). Support of families and family life across the lifespan. In LakinC.TurnbullA. P. (Eds.), National goals and research for persons with intellectual and developmental disabilities (pp. 217-256). Washington, DC: American Association on Mental Retardation.
72.
VerdugoM. A. (2004, September). Calidad de vida y calidad de vida familiar [Quality of Life and Family Quality of Life]. II Congreso Internacional De Discapacidad Intelectual: Enfoques y Realidad: Un Desafío, Medellín, Colombia.
73.
VerdugoM. A.CórdobaI.GómezJ. (2006). Adaptación y validación al español de la escala de calidad de vida familiar (eCVF) [Adaptation and validation to Spanish language of the Family Quality of Life Scale]. Siglo Cero, 37, 41-48.
74.
WangM.BrownR. (2009). Family quality of life: A framework for policy and social service provisions to support families of children with disabilities. Journal of Family Social Work, 12, 144-167.
75.
WangM.TurnbullA. P.SummersJ. A.LittleT. D.PostonD. J.MannanH.TurnbullR. (2004). Severity of disability and income as predictors of parents’ satisfaction with their family quality of life during early childhood years. Research & Practice for Persons With Severe Disabilities, 29, 82-94.
76.
YauM. K.Li-TsangC. W. (1999). Adjustment and adaptation in parents of children with developmental disability in two-parent families: A review of the characteristics and attributes. British Journal of Developmental Disability, 45, 38-51.
77.
ZunaN. I.SummersJ. A.TurnbullA. P.HuX.XuS. (2010). Theorizing about family quality of life. In KoberR. (Ed.), Enhancing the quality of life of people with intellectual disabilities (pp. 241-278). Houten, The Netherlands: Springer.
78.
ZunaN. I.TurnbullA. P.SummersJ. A. (2009). Family quality of life: Moving from measurement to application. Journal of Policy and Practice in Intellectual Disabilities, 6, 25-31.
