Do cognitive factors predict wellbeing in parents of children with profound and multiple intellectual disabilities?
Do cognitive factors predict the subjectivewellbeing of parents who have children with profound and multiple intellectual disabilities? Fleur-Michelle Coiffait Doctoral Researcher University of EdinburghSpecialist Psychological Practitioner NHS Lothian PsyPAG Chair Elect & Division of Clinical Psychology Rep
Overview of talkBackgroundResearch questionsMethod, participantsResults, conclusionsClinical implicationsLimitationsFuture researchQuestions
Parenting a child with a disability Increased care burden Higher stress Emotional impact …but individual variance, some parents resilient and adjust
Parent adjustment and wellbeing Retrieved from: embracethefuture.org.au/resiliency/resiliency_model.htm
Cognitive factors and wellbeingAttributionsLocus of controlSelf-efficacyHope / optimism
Research questions1. How does the subjective wellbeing of parents who have a child with PMID compare to the general population and other parents?2. Is their subjective wellbeing predicted by: - parental locus of control? - recognition of positive gains of having a child with PMID?3. What else is notable about this population re models of parental adjustment and wellbeing?
Profound and multipleintellectual disabilities (PMID) Retrieved from: dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/doc uments/digitalasset/dh_117961.pdf
Profound and multipleintellectual disabilities (PMID) People who need very high levels of support with daily life due to having more than one of the following: - a profound intellectual disability (IQ <35) - significant communication difficulties - sensory impairment e.g. hearing, vision - physical disabilities and mobility problems - complex health needs e.g. enteral/parenteral feeding, ventilation/CPAP - mental health difficulties
MethodCross-sectional survey, within-p’s designThree standardised self-report questionnaires: - Parental Locus of Control Scale - Revised (PLOC-R; Lloyd & Hastings 2009; original version Campis et al., 1986) - Positive Gain Scale (PGS; Pit-ten Cate, 2003) - Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS; Stewart-Brown et al., 2009; Tennant et al., 2007)Family demographics also collectedData collected via online/paper questionnairesMultiple regression analysis
ParticipantsN=101, 97 females, 4 males, age range 20-70 yrsParents, step/foster/grand parents97% white background, 3% other ethnicity48% educated to university level78% married/civil partnership or cohabitingMean child age 10.46 yrs, range 1-23 yrs94% children white background, 6% otherRange of medical conditions, e.g.genetic/chromosomal, epilepsy, cerebral palsy
ResultsHow does the subjective wellbeing of parentswho have a child with PMID compare to thegeneral population and other parents? Median WEMWB Inter-quartile Group score (out of 70) range PMID parents 39 34-44 PEIP parents1 43 36-51 General 51 45-56 population2 1Data from Lindsay et al. (2008) 2Data from Tennant et al. (2007)
ResultsIs their subjective wellbeing predicted by:-parental locus of control?Yes - β= -.279, t(2,99)= 9.419, p= .005Explained around 8% of the variance in WEMWBSscores, adjusted R2= .081, F(2,99)= 5.474, p= .006- positive gains of having a child with PMID?No - neither did it account for sig variance inWEMWBS scores.
ResultsWhat else is notable about this population remodels of parental adjustment and wellbeing?49% employed, 3% studying, 48% not employedAround half had health issues themselves80% lived with at least one other family memberMany parents mentioned influence of society,other people’s attributions, feeling undervaluedas carers, more focus on their emotions andexperiences needed
ConclusionsA range of experiences revealed from responsesDifficult, emotive role that appears to impacton parents’ subjective wellbeingExternal locus of control predicted decreasedsubjective wellbeing in parents who havechildren with PMIDRealisation of positive gain of having a childwith PMID did not predict subjective wellbeingin these parents (social desirability effects?)
Clinical implicationsClinicians’ perceptions of the situation thesefamilies are in may be very different to parents’Cognitions may be amenable to interventionRole for psychological/therapeutic interventionSupport groups to meet peers in similar situationAwareness of cognitive processes involved inadjustment needed when working with this group
Limitations, future research No single agreed definition of PMID No diagnostic verification in this study Self-selecting sample = various biases Fathers underrepresented, wider problem Cross-sectional study with no comparison group Care burden, daily stressors, SES etc not measured Exploration of other factors needed in this group Qualitative research needed to explore experiences of parents with PMID Research evaluating interventions
ReferencesCampis, L.K., Lyman, R.D., Prentice-Dunn, S. (1986). The Parental Locus of Control Scale: Development and validation. Journal of Clinical Child Psychology, 15(3), 260-267.Lindsay, G., Davies, H., Band, S., Cullen, M.A., Cullen, S., Strand, S., Hasluck, C., Evans, R. & Stewart-Brown, S. (2008). Parenting early intervention pathfinder evaluation. Department for Children, Schools and Families.Lloyd, T. & Hastings, R.P. (2009). Parental locus of control and psychological well-being in mothers of children with intellectual disability. Journal of Intellectual and Developmental Disability. 34(2), 104-115.Pit-ten Cate, I.M. (2003). Family adjustment to disability and chronic illness in children. Unpublished doctoral dissertation, University of Southampton, UK.Stewart-Brown, S., Tennant, A., Tennant, R., Platt, S., Parkinson, J. & Weich, S. (2009). Internal construct validity of the Warwick-Edinburgh Mental Well-being Scale (WEMWBS): A Rasch analysis using data from the Scottish Health Education Population Survey. Health and Quality of Life Outcomes, 7(15). Retrieved 10 June 2011 from hqlo.com/content/7/1/15Tennant, R., Fishwick, R., Platt, S., Joseph, S. & Stewart-Brown, S. (2007). Monitoring positive mental health in Scotland: Validating the Affectometer 2 scale and developing the Warwick Edinburgh Mental Well-being Scale for the UK. Edinburgh: NHS Health Scotland.