1. Do cognitive factors
predict the subjective
wellbeing of parents who
have children with
profound and multiple
intellectual disabilities?
Fleur-Michelle Coiffait
Doctoral Researcher
University of Edinburgh
Specialist Psychological Practitioner
NHS Lothian
PsyPAG Chair Elect &
Division of Clinical Psychology Rep

2. Overview of talk
Background
Research questions
Method, participants
Results, conclusions
Clinical implications
Limitations
Future research
Questions

3. Parenting a child with a disability
Increased care burden
Higher stress
Emotional impact
…but individual
variance, some parents
resilient and adjust

4. Parent adjustment and wellbeing
Retrieved from: embracethefuture.org.au/resiliency/resiliency_model.htm

5. Cognitive factors and wellbeing
Attributions
Locus of control
Self-efficacy
Hope / optimism

6. Research questions
1. 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?

7. Profound and multiple
intellectual disabilities (PMID)
Retrieved from:
dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/doc
uments/digitalasset/dh_117961.pdf

8. Profound and multiple
intellectual 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

9. Method
Cross-sectional survey, within-p’s design
Three 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 collected
Data collected via online/paper questionnaires
Multiple regression analysis

10. Participants
N=101, 97 females, 4 males, age range 20-70 yrs
Parents, step/foster/grand parents
97% white background, 3% other ethnicity
48% educated to university level
78% married/civil partnership or cohabiting
Mean child age 10.46 yrs, range 1-23 yrs
94% children white background, 6% other
Range of medical conditions, e.g.
genetic/chromosomal, epilepsy, cerebral palsy

11. Results
How does the subjective wellbeing of parents
who have a child with PMID compare to the
general 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)

12. Results
Is their subjective wellbeing predicted by:
-parental locus of control?
Yes - β= -.279, t(2,99)= 9.419, p= .005
Explained around 8% of the variance in WEMWBS
scores, 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 in
WEMWBS scores.

13. Results
What else is notable about this population re
models of parental adjustment and wellbeing?
49% employed, 3% studying, 48% not employed
Around half had health issues themselves
80% lived with at least one other family member
Many parents mentioned influence of society,
other people’s attributions, feeling undervalued
as carers, more focus on their emotions and
experiences needed

14. Conclusions
A range of experiences revealed from responses
Difficult, emotive role that appears to impact
on parents’ subjective wellbeing
External locus of control predicted decreased
subjective wellbeing in parents who have
children with PMID
Realisation of positive gain of having a child
with PMID did not predict subjective wellbeing
in these parents (social desirability effects?)

15. Clinical implications
Clinicians’ perceptions of the situation these
families are in may be very different to parents’
Cognitions may be amenable to intervention
Role for psychological/therapeutic intervention
Support groups to meet peers in similar situation
Awareness of cognitive processes involved in
adjustment needed when working with this group

16. 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

17. Questions?
fmcoiffait@gmail.com
slideshare.net/fmmc27
twitter.com/PMLDresearch
mendeley.com/profiles/fleur-michelle-coiffait/
uk.linkedin.com/pub/fleur-michelle-
coiffait/28/961/459

18. References
Campis, 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/7/1/15
Tennant, 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.