‘Disclosure’, the first communication of a diagnosis of disabilityin a child to the parents, is an experience which is often neverforgotten.1–3 The emotional impact upon parents of hearing thattheir child has a disability is great. This highly emotional statemakes parents particularly sensitive to events around them3 andthe manner of the disclosing professional can have a directimpact upon the parents’ level of anxiety.4 It has also beensuggested that the way in which a child’s disability is disclosedaffects the parents’ adaptation to their child’s condition,5–7 whichmay in turn influence the early treatment of the child.6

Dissatisfaction with disclosure among parents of childrenwith disabilities has been high, as reported in previous studies(Table 1). However, the Cunningham et al.8 ‘model’ service, setup to inform parents of the diagnosis of Down syndromeaccording to the recommendations in the literature, resulted in100% satisfaction among parents who received the service.This result demonstrates that parental dissatisfaction withdisclosure of disability is not inevitable.

Many studies have examined the experiences of parents inthe disclosure of a disability in their child.1,2,6,8–26 Some studieshave asked parents how, in retrospect, they would havepreferred to be informed.1,12,21,22,25,26 Three studies have soughtto document the determinants of parental satisfaction with thedisclosure process.11,16,27

The present study seeks to determine the level of parentalsatisfaction with the disclosure of their child’s developmentaldisability and the determinants of this satisfaction.

METHODS

Parents of children with developmental disabilities wereinvited by letter to take part in the study. Eighty parents wereselected from the database of the developmental disabilitiesclinic at Monash Medical Centre. The selection criteria were adiagnosis of significant disability (i.e. impairment greater thantwo standard deviations below the mean in relevant areas offunction) and attendance at the clinic between April 1993 toApril 1996. Twenty-three parents agreed to participate. Itshould be noted that the first communication of the diagnosisof disability to the parents would not necessarily have occurredat this clinic.

Parents of children with autism spectrum disorders made up56.5% (13) of the sample and 17.4% (4) children were diagnosedwith intellectual disability. The remaining children in the studyreceived different diagnoses: learning disability, epilepsy, hearingimpairment, cerebral palsy, fragile-X syndrome and Prader–Willisyndrome. The mean age of the children at the time of diagnosiswas 5 years (range birth–12 years). The mean length of timeelapsed since disclosure of their child’s disability was 3.8 years(range 3 months–16 years).

The procedure, including the questionnaires, was developedin consultation with a reference group which included profes-sionals and researchers with a special interest in the field andparents of children with developmental disabilities. Approvalwas granted by the Monash Medical Centre Ethics Committee.

Information was gathered through interviews with parents.These were conducted in the family home, except where thefamily lived at a great distance for this to be practicable (fivefamilies), in which case the interview was conducted bytelephone. The interviews lasted between 15 and 70 min, with amean length of 32 min. Both parents were present for three ofthe interviews. For the remaining 20 interviews, only the motherwas present. All interviews were carried out by the first author.

J. Paediatr. Child Health (2000) 36, 32–35

Disclosure of developmental disability: A study ofparent satisfaction and the determinants of satisfaction

MJ HASNAT and P GRAVES

Department of Paediatrics, Monash University, Monash Medical Centre, Clayton, Victoria, Australia

Objective: To investigate the level of parent satisfaction with the first communication of a diagnosis of developmentaldisability in their child (‘disclosure’) and the determinants of this satisfaction.Methodology: Interviews with parents of children with developmental disabilities regarding their experiences at the timeof disclosure and their level of satisfaction with the process were carried out.Results: Parent satisfaction with disclosure overall was found to be high (82.6%). Parents were more likely to be satisfiedif they received a large amount of information. Parent satisfaction was found to be higher when the disclosing professionalcommunicates well with the parents, has an understanding of parental concerns, and is direct in manner. Having bothparents, the child or support people present were not found to have any significant relationship to parent satisfaction.Conclusions: The high level of satisfaction with disclosure in this study supports the claim made by earlier researchersthat parental dissatisfaction with the disclosure process is not inevitable. The major determinants of parental satisfactionwith disclosure are directness, understanding of parental concerns and good communication on the part of the disclosingprofessional, and receiving a large amount of information.

Key words: child developmental disorders; diagnosis; disabled; parents; truth disclosure.

Correspondence: MJ Hasnat, Department of Paediatrics, MonashUniversity, 246 Clayton Road, Clayton, 3168, Victoria, Australia.Fax: (03) 9562 5019; email: monika_hasnat@hotmail.com

MJ Hasnat, MB, BS, BMedSc, Intern. P Graves, MPH, FRACP,Head, Developmental Disabilities Clinic.

Accepted for publication 13 August 1999.

The interview format was adapted from that of Sloper andTurner.11 Initially parents were asked to describe how theywere told of their child’s disability. More specific questionsfollowed. Parents were asked to rate their level of satisfactionwith the disclosure process overall on a five-point scale, fromvery satisfied to very dissatisfied. This was later reduced to athree-point measure of satisfaction for analysis. Relationshipsbetween satisfaction and possible determinants were investi-gated. The following potential determinants of satisfactioninvestigated were based on Sloper and Turner’s11 study andcomprised:(1) Disclosure interview variables: people present (one or both

parents, child, others), information received (amount, easeof understanding, ease of remembrance, use of ‘technical’language, written information), manner of informing pro-fessional (direct, sympathetic, understanding of parentconcerns, good communicator) and follow up (nature,opportunity to ask questions, opportunity for ongoingcontact with disclosing professional);

(2) Child variables: diagnosis, age at diagnosis, possible causeof disability (if known), position of child in family;

(3) Parent variables: country of birth, educational level, socialclass;

(4) Time elapsed since disclosure of child’s disability.The present study also investigated the following deter-

minants of satisfaction, not included in Sloper and Turner’sstudy:11

(5) Suspicions of parent regarding disability: suspicions ofdisability on part of parent before receiving a diagnosis,acceptance of suspicions by professionals and length oftime between first presenting suspicions to a professionaland receiving a diagnosis.

In addition to the above, parents in the present study werealso asked to rate their satisfaction with particular aspects ofthe disclosure: the manner of the disclosing professional, thepeople present, the information received and the subsequentfollow up, on the same five-point scale.

Results were analysed using S P S S for Microsoft WindowsRelease 6.1 (SPSS Inc., Chicago, IL, USA). Contingencytables were constructed to investigate possible relationships,after first placing the data into categories. Chi-squared analysisof these tables was carried out. Fisher’s exact test was used toaccount for the small sample size.

RESULTS

Satisfaction with disclosure

Overall satisfaction with disclosure was expressed by 19(82.6%) parents. Satisfaction with the manner of the informingprofessional was reported by 22 (95.7%) parents. Satisfactionwith the information received was expressed by 19 (82.6%)parents and 18 (78.2%) parents were satisfied with the peoplepresent. Full results are presented in Table 2.

Determinants of satisfaction with disclosure

Table 3 presents the statistically significant associationsbetween overall satisfaction with disclosure and disclosurevariables. The amount of information received and overallsatisfaction were found to have a statistically significant associ-ation (P = 0.024), with parents receiving more informationbeing more likely to be satisfied. That is, parents who foundthe information given at disclosure ‘overwhelming’ were morelikely to be satisfied than parents who found the information‘adequate’. In turn, parents who felt they received an adequateamount of information were more likely to be satisfied with thedisclosure process overall than parents who felt they had notreceived enough information.

Overall parent satisfaction with disclosure of their child’sdiagnosis was found to have a statistically significant associationwith the perceived directness of the disclosing professional’smanner (P = 0.012), his or her understanding of parent concerns(P = 0.037) and communication skills (P = 0.043).

33Parents and the disclosure of disability

Table 1 Level of parental dissatisfaction with the disclosure processin studies to date

Table 2 Parent satisfaction with disclosure

Table 3 Significant associations between variables investigated andsatisfaction with disclosureStudy Year Dissatisfaction Disability of

level found (%) children in study

Tarran28 1981 46 Cerebral palsyMurdoch20 1983 36 Down syndrome

28 Spina bifidaFirth19 1983 35 Duchenne muscular

dystrophyCunningham et al.8 1984 58 Down syndromeQuine and Pahl27 1987 60 Severe learning

difficultiesMcKay and Hensey14 1990 70 Cerebral palsySloper and Turner11 1993 52 Severe physical

disability

Neither satisfiedDissatisfied nor dissatisfied Satisfied

n (%) n (%) n (%)

Overall 1 (4.3) 3 (13.0) 19 (82.6) People present 1 (4.3) 4 (17.4) 18 (78.2) Information 3 (13.0) 1 (4.3) 19 (82.6)Manner of teller 2 (4.3) 0 ( 22 (95.7)Follow up 10 (43.4) 1 (4.3) 12 (52.1)

Significance of Variable association (P = )

Disclosure interview variablesAmount of information 0.024Direct manner in informing professional 0.012Perceived understanding of parental concerns 0.037Informing professional a ‘good communicator’ 0.043

Other variablesAge of child 0.014Time since diagnosis 0.001

Of the child variables investigated, only the age of the childwas associated with overall parent satisfaction with disclosure(P = 0.014), with the parents of older children at the time ofdiagnosis tending to be more satisfied.

None of the characteristics of the parents investigated werefound to have a significant association with satisfaction withdisclosure.

Previous suspicions of a disability in their child on the partof the parent were not found to have a significant associationwith satisfaction with disclosure. Likewise, acceptance ofparent suspicions by professionals was not found to be associ-ated with parent satisfaction.

The time since diagnosis and overall parent satisfaction withthe way in which the diagnosis was delivered were found tohave a statistically significant association (P = 0.001), withmore recent diagnoses being linked to greater satisfaction.

DISCUSSION

Parent satisfaction in the present study is greater than reportedin the studies listed in Table 1, apart from the Cunningham et al.8 ‘model’ service. The high level of satisfaction in thepresent study suggests that parental dissatisfaction with disclo-sure is not inevitable in ‘real-life’ settings.

The major determinants of parent satisfaction with disclo-sure appear to be the manner of the disclosing professional andthe information received. Statistically significant associationswere established between overall satisfaction and the perceiveddirectness, understanding of parental concerns and communi-cation skills of the professional. Associations between overallsatisfaction and the amount of information received were alsofound to be statistically significant. These findings supportSloper and Turner’s11 findings that the manner of the profes-sional and sufficient information are of greater importance toparents at the time of disclosure than structural aspects.

Parents who found the amount of information they receivedoverwhelming were more satisfied than parents who found theinformation adequate, indicating that parents wish to receive asmuch information as possible at the time of disclosure, even ifthey are unable to take it all in or find it upsetting. As oneparent in the present study said, ‘I don’t think it’s the responsi-bility of the paediatrician or neurologist to judge what parentscan and can’t handle. If I’m sitting there and saying ‘‘give it tome’’ and I cry when they tell me, that’s my problem . . . itshould be up to the parents to say how much information theywant and it should be freely given.’

No associations were found between overall satisfaction andany of the variables relating to the people present at the disclo-sure interview. This is in contradiction to much of the litera-ture, which stresses the importance of having the child andboth parents present.8,12,21,23,25 Much of the research which hasplaced emphasis on these aspects considers the diagnosis ofDown syndrome,8,23,25 a disclosure process which occursgenerally in the newborn period, often in hospital. The averageage of diagnosis in this study is 5 years and the disclosurediffers from the diagnosis of Down syndrome in many otherrespects. These differences may make for different determi-nants of parent satisfaction. The findings of Sloper andTurner,11 a study in which the average age at diagnosis was3 years 11 months, are in agreement with the present studyregarding the lack of association between the people presentand parent satisfaction with disclosure.

The parents of older children at the time of diagnosis werefound to be more likely to be satisfied with disclosure. Thisresult is likely to be due to a heightened sense of relief in theparents of older children upon obtaining a diagnosis. Theapparent contradiction between this and previous findings ofgreater satisfaction for earlier diagnoses can be explained bythe disabilities of the children in the samples. Over half thesample in the Quine and Pahl27 study were diagnosed as havingDown syndrome, a condition which can be diagnosed veryearly in the child’s life, and so parents receiving a latediagnosis are thus more likely to be dissatisfied. In the presentstudy, over half the children had a diagnosis of an autismspectrum disorder. The parents of children with autismspectrum disorders are frequently the first to suspect their childhas a disability and often have been presenting their concernsto professionals for some time before acknowledgement. Therelief of finally obtaining a diagnosis was stressed by manyparents of children with an autism spectrum disorder: ‘I criedwith relief that they understood; it was a relief for someone toacknowledge there was a problem.’

No significant associations were found between parentalsatisfaction with disclosure and whether the aetiology of thechild’s disability was known to the parents. This is consistentwith the findings of Sloper and Turner11 in this regard, and is incontradiction to previous suggestions that such an associationmay exist.16

The size and nature of the sample are limitations of thisstudy. The small sample size restricts the ability to generalizethe findings. The frequencies of the disabilities of the childrenin the sample are not representative of the frequencies seen inthe general population – the autism spectrum disorders, inparticular, are over-represented. Separating the data into twogroups based upon a diagnosis of an autism spectrum disorderand other developmental disabilities and analysing these maybe useful in ascertaining the nature of any bias which may haveresulted from the over-representation of autism spectrumdisorders in this study. Of the parents of autistic children,84.6% were satisfied with disclosure overall, very close to thecorresponding figure of 80.0% for the parents of children withother diagnoses. Investigation of the determinants of satisfac-tion as two separate groups was made difficult by the resultantsmallness of the sample sizes when divided.

ACKNOWLEDGEMENTS

The authors wish to thank Professor Richard Doherty and DrJane Tracy for their advice and support.

REFERENCES

1 Sharp MC, Strauss RP, Lorch SC. Communicating medical badnews: Parents’ experiences and preferences. J. Pediatr. 1992; 121:539–46.

2 Nursey AD, Rohde JR, Farmer RDT. Ways of telling new parentsabout their child and his or her mental handicap: a comparison ofdoctors’ and parents’ views. J. Ment. Def. Res. 1991; 35: 48–57.

3 Cunningham CC, Davis H. Early parent counselling. In Craft M,Bicknell J, Hollins S, eds. Mental Handicap. Balliere Tindall,London. 1985; 162–76.

4 Wasserman RC, Inui TS, Barriatua RD, Carter WB, Lippincott P.Pediatric clinicians’ support makes a difference: An outcomebased analysis of clinician–parent interaction. Pediatrics 1984; 74:1047–53.

34 MJ Hasnat and P Graves

35Parents and the disclosure of disability

5 Blacher J. Sequential stages of parental readjustment to the birthof a child with handicaps: Fact or artefact? Ment. Retard. 1984;22: 55–68.

6 Cunningham CC, Sloper P. Parents of Down’s syndrome babies:Their early needs. Child Care Health Dev. 1977; 3: 325–47.

7 Svarstad BL, Lipton HL. Informing parents about mental retarda-tion: A study of professional communication and parent accep-tance. Soc. Sci. Med. 1977; 11: 645–51.

8 Cunningham CC, Morgan PA, McGucken RB. Down’s syndrome:Is dissatisfaction with disclosure of diagnosis inevitable? Dev.Med. Child Neurol. 1984; 26: 33–9.

9 Garwick AW, Patterson J, Bennett FC, Blum RW. Breaking thenews: How families learn about their child’s chronic condition.Arch. Pediatr. Adolesc. Med. 1995; 149: 991–7.

10 Strauss RP, Sharp MC, Lorch C, Kachalia B. Physicians and thecommunication of ‘bad news’: Parent experiences of being informedof their child’s cleft lip and/or palate. Pediatrics 1995; 96: 82–9.

11 Sloper P, Turner S. Determinants of parental satisfaction withdisclosure of disability. Dev. Med. Child Neurol. 1993; 35: 816–25.

12 Krahn GL, Hallum A, Kime C. Are there good ways to give badnews? Pediatrics 1993; 91: 578–82.

13 O’Sullivan P, Mahoney G, Robinson C. Perceptions of paediatri-cians’ helpfulness: A national study of mothers of young disabledchildren. Dev. Med. Child Neurol. 1992; 34: 1064–71.

14 McKay M, Hensey O. From the other side: Parents’ views of theirearly contacts with health professionals. Child Care Health Dev.1990; 16: 373–81.

15 Lynch EC, Staloch NH. Parental perceptions of physicians’communications in the informing process. Ment. Retard. 1988; 26:77–81.

16 Quine L, Pahl J. First diagnosis of severe handicap: A study ofparental reactions. Dev. Med. Child Neurol. 1986; 29: 232–42.

17 Murdoch JC. Immediate postnatal management of mothers ofDown syndrome and spina bifida children in Scotland 1971–81.J. Ment. Def. Res. 1984; 28: 67–72.

18 Murdoch JC. Experience of mothers of Down syndrome and spinabifida children on going home from hospital in Scotland 1971–81.J. Ment. Def. Res. 1984; 28: 123–7.

19 Firth MA. Diagnosis of Duchenne Muscular Dystrophy: Experi-ences of parents of sufferers. BMJ 1983; 286: 700–1.

20 Murdoch JC. Communication of the diagnosis of Down syndromeand spina bifida in Scotland 1971–81. J. Ment. Def. Res. 1983; 27:247–53.

21 Mitchell DR. Parents’ experiences and views on being told theyhave a handicapped child: a survey. N.Z. Med. J. 1981; 94: 263–5.

22 Steinberg M. Caring for the disabled child: mothers voice theirneeds. Med. J. Aust. 1981; 1: 400–2.

23 Shiono H, Kadowaki J. The questionnaire to parents of childrenwith the Down’s syndrome: How to inform parents and psycho-logical responses to counselling. Am. J. Med. Gen. 1979; 4:215–8.

24 Pueschel SM, Murphy A. Assessment of counselling practices atthe birth of a child with Down syndrome. Am. J. Ment. Def. 1976;81: 325–30.

25 Gayton WF, Walker L. Down syndrome: Informing the parents.Am. J. Dis. Child 1974; 127: 510–2.

26 Carr J. Mongolism: Telling the parents. Dev. Med. Child Neurol.1970; 12: 213–21.

27 Quine L, Pahl J. First diagnosis of severe mental handicap:Characteristics of unsatisfactory encounters between doctors andparents. Soc. Sci. Med. 1987; 22: 53–62.

28 Tarran EC. Parents’ views of medical and social-work services forfamilies with young cerebral-palsied children. Dev. Med. ChildNeurol. 1981; 23: 173–82.