Cracking Up? A Pilot Study on Stress & Coping in Parents of

Children Post Cochlear Implantation

SARAH HUGHES

SUPERVISORS: MAIREAD DEMPSEY (BH) & CHARLOTTE WILSON (TCD)

Introduction

Volunteered in Beaumont Hospital Psychology Dept./ Cochlear Implant Dept.

Interested in concerns raised by parents in sessions

Obtained place on Masters in Applied Psychology Course

Decided to do thesis on parents, their stress and the child’s development

Abstract/ Introduction to Study

Attempted to look at stresses experienced by parents of children with implants

Examine if stresses were correlated with any particular problem areas re: child’s behaviour, development etc.

Pilot study – NO psychological studies on Irish sample of this population!

What is a Cochlear Implant?

What is a Cochlear Implant?

Used for certain types of deafness

Surgical implant + external processor

Ideally implanted as young as possible to allow for catch-up developmentally

Types of people who are considered:

Younger & older

Born without hearing or lost over time

Speech or no speech

Initial Proposal

Qualitative interviews

Link with parents via OPD clinic

Some quant data to examine child’s behaviours etc.

Rationale

Very understudied population

Very few supports available

Some expressed concern that they did not expect the progress to proceed as it had for their child/ not prepared for experience of journey

Other difficulties ‘hidden’ by loss of hearing, emerged post-implantation

Change of Proposal

Gatekeeper issues

Outsider looking for access to potentially vulnerable population

Permitted quantitative posted info only

Time delays – unable to use some questionnaires

Lit Review

Cochlear Implants – commonplace yet still recent development

Issues re: longitudinal study

‘Deaf’ – catch-all term, may miss subtle differences in presentation

Age of implantation important for normative development2

Language burst3

Effects of parental stress on child development4,5

On normative samples only

Deaf vs. deaf

Deaf

Culture, not illness - identity

Not open to study/implantation etc.

Consider sign language distinct method of communication

deaf

Disability

More open to research although still restricted population

More likely to use other methods of communication

“

”

Critics reject the very idea of trying to find a ‘cure’ for deafness. Indeed they have compared it to genocide.

SPARROW, 20001

Cochlear implantation – major source of debate & argument among D/deaf communities

The Lost identity

In the Deaf Identity, where to children with implants fit in the picture? They don’t – ‘misfit’ identity, lost between the cracks

Different methods of communication

Ability to flit between deaf & hearing

Dependence on parents for company & social activity Risk of increased stress/pressure for parents

Increased risk of strain on parent-child relationship5

Common Parental Stressors

Journey Specific to Ireland

Implant limitations Unique to Ireland

Change between time of study & today

Two vs. one implant Waiting times

Why Study Stress?

Important to know if heightened stress interferes with the parents ability to help child development 6

shown in normative child sample – what about with deaf children?

Additional roles parents may have to take on given identity issues

Links between stress & attachment5

Role of parent as enabler

Effects of stress on response to children7

Lack of study on this population – none in Ireland at all

Growing population – 360 children to end 2012

Edwards: “little research examining changes in emotional and behavioural functioning in children with implants”8

Hypotheses

1. there will be a high rate of parental stress among parents of children who have a cochlear implant

2. These higher levels of stress will be associated with higher parent rankings of problems with their children

Control hypothesis: there will be a significant statistical difference between amount of problems noted by parents & amount of problems noted by professionals involved in care of child

Methods

Method 1:

Quantitative questionnaires

Descriptive questions

SDQ (parent measure only)

Brief COPE

QSR

Method 2:

Chart review

Looking for any issues noted by any professionals during review

Also relevant demographic info e.g. age of implantation

Participants/ Recruitment

Taken from database of implant recipients at Beaumont Hospital

Aged between 4 & 12 (school-going age)

Only 1 child per family to be selected

Parents sent package with info sheet, consent form & details of access to online questionnaire

Ethics approval sought & obtained from both Beaumont & Trinity

Results

Contacted 174 participants, 17 respondents

Mean age of implantation 3.93 years

Relative gender equality

Most used some form of language

Statistical Analysis Used:

Pearson’s R Correlations

Independent Samples T-tests

Standard multiple regression

Results

NOTE LACK OF STATISTICAL POWER

Strong positive correlation between parental stress & overall levels of child stress (rated by parent)

Medium positive correlation between parental stress & child’s emotional distress (rated by parent)

Medium positive correlation between parental stress & child’s behavioural difficulties (rated by parent)

Results

Strong positive correlation between parental stress & child’s hyperactivity & attentional difficulties (rated by parent)

Strong positive correlation between parental stress & child’s problems in getting along with other (rated by parent) ***

Strong negative correlation between parental stress and child’s kind & helpful behaviour (rated by parent)

Strong positive correlation between parental stress & the impact of their child’s difficulties on their child’s life (rated by parent)

Results

No significant difference found between problems or emotional distress noted by parents & professionals

The combination of all of the subscales of the SDQ has significant predictive value in relation to parental stress levels but in particular, child problems in getting on with others

Brief COPE – participants more likely to use positive coping methods

Discussion

1 cochlear Implant centre in Ireland

Interventions for parents experiencing stress associated with child with implant not routinely provided

Is there need for such intervention?

While parents & professionals do not differ in noting problems, relationships exist between child stress, emotional distress, behavioural difficulties, attention problems, social problems, and impact of child’s difficulties on the child and parental stress levels

Notable that coping does seem to be in more positive active ways

Anecdotal Evidence

Unsolicited phone calls from parents

Helped add depth to information in questionnaires

Praises of unit & staff high

Routes of referral confusing, stressful, often unhelpful

Suggestion of speaking to others who had been through the process

Where to Go From Here?

Longer timeframe to conduct studies/ different timing

More active follow-up

Foundation for further study

Medical/ linguistic benefits clear – what about psychological/ identity/

emotional/ social benefits?

Specific issues to Irish context

Support & enablement for parents

“Decisions made early in a child’s life regarding language,

education and culture will have profound impact on the self

image of Deaf/deaf individuals, as well as how they are perceived by

the rest of society”9

Thank you!

Questions?

hughess2@tcd.ie

References

1. Sparrow, R. (2005). Defending deaf culture: The case of cochlear implants. The journal of political philosophy, 13(2), 135-152.

2. Tong, M.C.F., Leung, E.K.S., Au, A., Lee, W., Yue, V., Lee, K.Y.S., Chan, V.S.W., Wong, T.K.C., Cheung, D.M.C., & van Haselt, C.A. (2007). Age and outcome of cochlear implantation for patients with bilateral congenital deafness in a Cantonese-speaking population. Asia-Pacific Symposium on Cochlear Implant and Related Sciences. Ear & Hearing, 28(2), 56-58.

3. Hyde, M., Punch, R., & Grimbeek, P. (2011). Factors predicting functional outcomes of cochlear implants in children. Cochlear Implants International, 12(2), 94-104.

4. Hullman, S. I., Wolfe-Christensen, C., Ryan, J. L., Fedele, D. A., Rambo, P. L., Chaney, J. M., & Mullins, L. L. (2010). Parental overprotection, perceived child vulnerability, and parenting stress: A cross-illness comparison. J clin psychol med settings, 17, 357 - 365.

5. Stelter, R. L., & Halberstadt, A. G. (2011). The interplay between parental beliefs about children's emotions and parental stress impacts children's attachment security. Infant and child development, 20, 272-287.

References

6. Szymanska, A. (2011). Parental stress in an upbringing situation and giving children help: A model of the phenomenon. The international journal of interdisciplinary social science, 6(3).

7. Anthony, K. K., Bromberg, M. H., Gil, K. M., & Schanberg, L. E. (2011). Parental perceptions of child vulnerability and parent stress as predictors of pain and adjustment in children with chronic arthritis. Children's health care, 40, 53-69.

8. Edwards, L., Khan, S., Broxholme, C., & Langd, D. (2006). Exploration of the cognitive and behavioural consequences of paediatric cochlear implantation. Cochlear implants international, 7(2), 61-76.

9. Mascia, K., & Mascia, J. (2012). The bioethics of providing cochlear implants to children: Informed choices and autonomous decision-making. Journal of the American deafness and rehabilitation association, 45(2), 273-286.