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

Overview of talk

Background

Research questions

Method, participants

Results, conclusions

Clinical implications

Limitations

Future research

Questions

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 wellbeing

Attributions

Locus of control

Self-efficacy

Hope / optimism

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?

Retrieved from:

dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/doc

uments/digitalasset/dh_117961.pdf

Profound and multiple

intellectual disabilities (PMID)

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

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

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

Results

How does the subjective wellbeing of parents

who have a child with PMID compare to the

general population and other parents?

Group Median WEMWB

score (out of 70)

Inter-quartile

range

PMID parents 39 34-44

PEIP parents1 43 36-51

General

population2 51 45-56

1Data from Lindsay et al. (2008) 2Data from Tennant et al. (2007)

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.

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

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?)

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

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

Questions? fmcoiffait@gmail.com

uk.linkedin.com/pub/fleur-michelle-

coiffait/28/961/459

twitter.com/PMLDresearch

slideshare.net/fmmc27

mendeley.com/profiles/fleur-michelle-coiffait/

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.