Human Service Integrative Course

O R I G I N A L A R T I C L E

Convention of hope– communicating positive, realistic messages to families at the time of a child’s diagnosis with disabilities

Alison Harnett and Edel Tierney, National Federation of Voluntary Bodies, Oranmore Business

Park, Oranmore, Co. Galway, Ireland. (E-mail: [email protected]) and Suzanne Guerin, School

of Psychology, University College Dublin, Dublin, Ireland

Accessible summary • This study is about the way that parents are told that their child has disabilities.

The researchers talked to families and professionals to find out if parents are given

nice and hopeful messages about their child.

• The study found that parents and professionals agreed that there should be

positive, realistic messages and hope given to parents about their child.

• Many parents said that they did not get nice or hopeful messages. The study found

that professionals could give realistic and hopeful messages by telling parents that

there is help available The study also found that professional could tell parents

about the value and importance of every child.

• Giving realistic, positive and hopeful messages to parents about their child is the

start of providing good support to people with disabilities through their whole

lives. Providing good support throughout people’s whole lives is one of the aims

of the UN Convention on the Rights of Persons with Disabilities.

Summary As part of a larger study to develop best practice recommendations for informing

families of their child’s disabilities, this study researched the elements of best

practice required when communicating this news to families. It traced the

convergence between these practice recommendations and the UN Convention on

the Rights of Persons with Disabilities; in particular with regard to the provision of

positive, realistic and hopeful communication. The study employed a mixed

methodology, involving 22 focus groups and a questionnaire survey of 1588

professionals and 584 families. The study found that a large majority of parents and

professionals supported the recommendation of providing families with positive,

realistic and hopeful messages at the time of diagnosis but less than half of the

parents surveyed reported receiving communication of this type. The findings

indicated that some professionals may struggle with fears of providing ‘false hope’,

a fear of litigation and a lack of training, when considering providing hope.

However the research also identified positive and hopeful messages that are not in

conflict with providing honest and realistic communication. These include:

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264 doi:10.1111/j.1468-3156.2009.00580.x

British Journal of

Learning Disabilities The Official Journal of the British Institute of Learning Disabilities

acknowledging the dignity and worth of the child as an individual, indicating that

there is help available for parents, and informing families about the spectrum of

possible outcomes for their child rather than the worst case scenario. The provision

of appropriate positive, realistic messages and hope is fully aligned with the

principles of the UN Convention.

Keywords UN Convention on the Rights of Persons with Disabilities; diagnosis,

disclosure, family, communication skills, disabilities, Ireland

Introduction

The importance of the way in which the diagnosis of a

child’s disabilities, or a concern about potential disabilities,

is first communicated to the family has been shown in the

international literature, and can be summarised thus:

Good disclosure practice prevents much distress for parents,

and can form the beginning of positive parent-professional

relationships, facilitates the attachment process, and when

combined with family support services over the first years,

reduces levels of anxietyandstress (Cunningham1994,p.99).

Sensitivity, honesty and empathy have been noted as

crucial elements of good disclosure practice when commu-

nicating difficult news (Girgis & Sanson-Fisher 1999; Hatton

et al. 2003; Price et al. 2006). Ormond et al. (2003) found that

parents expressed the wish for positive messages that

contained optimism, at the time of disclosure.

The UN Convention on the Rights of Persons with

Disabilities (2006) enshrines the principles of respect for

the inherent dignity and individual autonomy of persons

with disabilities (article 3 paragraph a); respect for differ-

ence, and acceptance of persons with disabilities as part of

human diversity and humanity (article 3 paragraph d). The

Convention recognises the valued existing and potential

contributions made by persons with disabilities to the

overall well-being and diversity of their communities

(Preamble, paragraph m).

This article describes a consultation and research project

carried out in the Republic of Ireland by the National

Federation of Voluntary Bodies (NFVB) to develop national

best practice guidelines for how families should be

informed of their child’s disabilities (Harnett et al. 2007). It

focuses on the aspects of the research which explored the

types of messages communicated to families at the time of

their child’s diagnosis, and the importance of communicat-

ing hope and realistic positive messages at this crucial time.

Communicating messages that validate and promote the

inherent dignity, individuality and potential of the child,

and of all people with disabilities is fully in accordance with

the UN Convention. It is also in keeping with the expressed

wishes of parents, and with best practice as identified

through the research undertaken in developing the guide-

lines for informing families of their child’s disabilities

(Harnett et al. 2007).

Methodology

The types of messages communicated at the time of a child’s

diagnosis were explored as one aspect of the larger study

which took place in three phases to develop national best

practice guidelines for how families are informed of their

child’s disabilities. These phases are described below:

Phase 1

• Initial exploratory interviews and meetings took place

with families and professionals to identify key issues

around the topic of disclosure.

• A literature review of national and international research

and policy on disclosure practice when communicating the

diagnosis of a child’s disabilities to the family was under-

taken.

Phase 2

Twenty-two focus groups were undertaken to qualita-

tively explore the experiences of families and professionals.

The aims of the focus groups were to establish the views of

parent and professional participants on what was currently

working well in terms of disclosure practice, to identify

elements which were not working well and to gather

recommendations for good practice in the future.

• Seven consultative focus groups took place with parents

of children with disabilities (physical, sensory, intellectual,

multiple disabilities and autistic spectrum disorders). Six

Early Services teams from service providers around the

country wrote to invite a range of parents of children of

between three and six years to participate. Selection criteria

were designed to include a range of urban and rural

locations, a geographical spread throughout the Republic of

Ireland, various diagnosis types, various diagnosis scenar-

ios (pre-natal, at birth, evolving diagnosis) and representa-

tion from fathers and mothers. One further focus group took

place with parents of children between the ages of 11 and

33 years, to give an indication of the issues that were

important to parents over time.

• Fifteen focus groups were undertaken with professionals

from a range of nursing, medical and allied health

disciplines, each discipline having been identified by the

258 A. Harnett et al.

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

participants of the parent focus groups as having a role in

disclosing the news of a child’s disabilities or supporting

parents following their child’s diagnosis.

In all, 131 participants took part in the focus groups,

which were recorded and transcribed. The transcribed

data were thematically analysed using an inductive,

semantic approach (Braun & Clarke 2006) by identifying

key themes through prevalence across groups and the

emphasis participants placed on the various issues. These

themes were then assessed for inter-rater reliability by

two co-facilitators who had been present at the focus

groups along with the principal investigator. The themes

were then distilled into proposed recommendations for

best practice.

Phase 3

Two quantitative postal questionnaire surveys were sent

to 584 families of children with disabilities between the ages

of 3 and 6 years, and 1588 professionals. The aims of the

questionnaire surveys were to establish a quantitative

picture of current practice from parent and professional

perspectives, and to rate a set of proposed recommenda-

tions for good practice developed through the literature

review and focus group consultation.

• The National Intellectual Disability Database1 (NIDD)

(Barron & Kelly 2006) was used as the sampling frame for

families of children with intellectual disabilities, and the

questionnaires were distributed through intellectual dis-

abilities service providers. The Health Research Board

(which administers the NIDD) provided the researchers

with a breakdown of the numbers of children between the

ages of three and six receiving services by each service

provider. These figures were then used to determine the

number of families to be surveyed in each service. The

questionnaires were sent by the Early Services teams to 40%

of the families in each service, using an agreed random

alphabetical system. The questionnaires for families of

children with physical and sensory disabilities were dis-

tributed via national physical and sensory disabilities

service providers and the Visiting Teachers for the Deaf,

with the Department of Education and Science. Completed

questionnaire surveys were received from 185 families (a

31.68% response rate). One questionnaire was not included

because the family was living outside of the Republic of

Ireland.

• A postal questionnaire was disseminated to 1588 profes-

sionals in 28 disciplines (each listed in the parent question-

naire responses as having been involved in communicating

the diagnosis of a child’s disabilities or supporting families

who have received such a diagnosis). The questionnaires

were distributed via the national professional bodies and

trade-unions of each discipline, and via the Irish Medical

Directory in the case of a number of the medical disciplines.

Due to the large number of disciplines and the large

numbers present in many of these disciplines it was not

possible within the scope of the project to survey a

statistically representative sample. For disciplines which

were reported on more than nine occasions in the parent

questionnaires 120 questionnaires were sent. Disciplines

that received fewer mentions received 50 questionnaires.

255 questionnaires were returned and 17 were eliminated

due to the respondent not being directly involved in the

disclosure process or where the respondent worked exclu-

sively with adults. Therefore 238 responses were analysed,

representing varied response rates per discipline, with a

higher response rate recorded by the disciplines more

frequently involved providing the diagnosis (Harnett et al.

2007).

Each stage of the research informed and led to the

subsequent phase, and the findings of all three were

triangulated and combined to develop the National Best

Practice Guidelines for Informing Families of their Child’s

Disability (NFVB 2007 2). Elements recommended in at least

two of the three phases were included in the Guidelines;

however the majority of the recommendations were noted

in all three phases.

The topic of communicating hope and positive mes-

sages at the time of disclosure was examined in this

study. It was given emphasis by participants in all phases

of the research as an important element of practice and

was rated as a recommendation in the ‘Communication’

section of the questionnaire surveys. Using a five-point

Likert scale parents and professionals were asked to what

extent they agreed or disagreed with the following

recommendation being included in the good practice

guidelines: ‘In the future when parents are told of their

child’s disability, positive, realistic messages are given with the

diagnosis.’ This study also examined the findings from two

questions in the parent questionnaire survey, looking at

various elements of communication the parents had

experienced during the disclosure of their child’s disabil-

ities; ‘During the consultation did you feel that you were given

the news with hope and positive messages’ and ‘(did you feel

that) the person giving the news was direct?’ 1Ireland’s Intellectual Disability Database was established in 1995

and gathers information about people who are receiving intellectual

disabilities services in the Republic of Ireland or who are in need of

these services. The objective of the database, which is compiled by

the Health Research Board, is to ensure that accurate information is

available about the needs of people with intellectual disabilities. For

further information see http://www.hrb.ie.

2Guidelines and Consultation and Research Report available to

download from http://www.fedvol.ie.

Communicating positive messages to families 259

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

Ethical considerations

The lower age limit of children whose parents were invited

to participate in both the qualitative and quantitative

elements of the research was set at three years on the

advice of Early Services team members in participating

organisations. This was in line with ‘no-harm’ ethical

principles and was aimed at minimising the potential

impact of contacting families for whom the disclosure

would be a more recent experience. Ethical approval for the

national study was secured through the Research Ethics

Committees of two of the participating intellectual disabil-

ities service providers. Informed written consent was

provided by all participants in the focus groups, and

detailed information was supplied to participants in the

questionnaire surveys indicating the purpose of the survey,

assuring confidentiality and anonymity, and indicating the

voluntary nature of participation.3

Findings

The findings of all three phases of the current research

indicated that the circumstances of the diagnosis of a

child’s disabilities can vary widely; the communication

may occur in hospital, community, disabilities service

settings or the family home. A wide range of professionals

with varying levels of experience provide the diagnosis,

with paediatricians and psychologists being the most

frequently reported. Parents may be informed of their

child’s diagnosis during pregnancy, at birth or in an

evolving diagnosis which may take place over a period of

weeks, months or years. The news of the disabilities may

come as an unexpected discovery (e.g. at birth) or may be

discovered as the result of planned assessment or tests.

(Harnett et al. 2007).

Through the findings of the research the National Best

Practice Guidelines for Informing Families of their Child’s

Disability (NFVB 2007 4) were developed to be applicable

for physical, sensory, intellectual disabilities and autistic

spectrum disorders. They consist of a set of over-arching

principles, applicable regardless of the disclosure circum-

stances:

• Family-centred disclosure.

• Respect for child and family.

• Sensitive and empathetic communication.

• Appropriate, accurate information.

• Positive realistic messages and hope.

• Team approach and planning.

• Focused and supported implementation of best practice.

These principles are closely aligned with those of the UN

Convention on the Rights of Persons with Disabilities, as set

out in the Preamble and throughout the Convention [e.g.

articles 4(1i); 8(1a, b and d); 23(3); 25(b)]. In addition to the

guiding principles, the findings of the research led to

specific recommendations, broken down into the following

areas: the setting/location and the people present at

disclosure, communication, information and support, cul-

ture and language, training education and support for

professionals, organisation and planning, referral and dis-

semination.5 This study focuses on the need for communi-

cation of hopeful and positive messages, a theme which

permeates many of the areas mentioned above, and which is

chiefly described in the ‘Communication’ section of the

guidelines.

Communication

Leonard (1999) discussed the need for positive messages to

be communicated at the time of a child’s diagnosis rather

than a catalogue of all potential negative outcomes. The

issue of all potential negative outcomes being presented was

a key concern to emerge from the focus group phase of the

current research. Parents described having been given

details about every possible medical difficulty that their

child with disabilities might encounter, and found this to be

in sharp contrast to communication they received about

their other children:

…look, if you had an ordinary child, they don’t give you a

book saying… he’s going to rob a car and he’s going to get a

girl pregnant or he’s going to fail his exams. So you have to

live life as it goes by. They don’t tell you that with the

ordinary child. (Parent participant in focus groups)

Parents frequently noted feeling that their child was seen

only in the context of their disabilities, and not as a valued

and individual person; a member of the family unit and

their community. For example one mother commented on

the lack of positive comment about the birth of her

daughter:

3Full details of the methodology are available in the Informing

Families of their Child’s Disability – National Best Practice Guide-

lines: Consultation and Research Report (Harnett et al. 2007).

4Guidelines and Consultation and Research Report available to

download from http://www.fedvol.ie.

5Information on the findings of the research, the guidelines

developed and plans for dissemination and implementation were

circulated to families of children with disabilities through articles in

newsletters and publications and through a presentation to the

Annual General Meeting of Inclusion Ireland 2008. Inclusion

Ireland is a national voluntary organisation working to promote the

rights of people with intellectual disabilities in Ireland to ensure

their full and equal participation in society. Inclusion Ireland

represents the interests of people with intellectual disabilities and

their families.

260 A. Harnett et al.

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

I think what disappointed me as well was that not one person

congratulated us. I find that sad because she’s just a little

girl. (Parent participant in focus groups)

For some families, overtly negative messages were con-

veyed at the time of diagnosis;

The next morning my consultant breezed in, looked into the

cot and said ‘‘More than likely age-related type’, and walked

back out. And that was the first time I felt guilt. (Mother of a

child with Down Syndrome, participant in focus group)

As detailed above, parents and professionals were asked

in the questionnaire survey to indicate to what extent they

agreed or disagreed with the following recommendation

being included in the good practice guidelines: ‘In the

future when parents are told of their child’s disability,

positive; realistic messages are given with the diagnosis.’

The responses are presented in Table 1, and indicate a high

level of agreement between parent and professional respon-

dents. 91.8% of parents either agreed or strongly agreed that

in the future the diagnosis should be given with positive,

realistic messages. 94.1% of professional respondents indica-

ted their agreement or strong agreement with the statement.

However, in spite of this very high level of agreement,

a different picture emerged when parent participants

reported on their own experiences of being told of their

child’s disabilities.

Table 2 presents the results from two questions in the

parent questionnaire survey, looking at various elements of

communication the parents had experienced during the

disclosure of their child’s disabilities.

The data reveal that although the parents felt a large

majority of the professionals had provided the news in a

direct way, less than half of the parents felt that they had

been given hopeful or positive messages as part of this

communication.

It is important to understand the underlying reasons for

the less positive messages communicated, if we are to

address the need for hope at the time of diagnosis, and

espouse the values of the UN Convention in assuring the

dignity, worth and rights of people with disabilities. The

qualitative data from the focus groups of the current

research provide some valuable insights for the gap

between the recommendation supported by parents and

professionals that positive, realistic messages should be

given with the diagnosis, and the reality of the experiences

as reported by the parent participants.

Not wanting to give ‘false’ hope

Professionals who participated in the focus groups

described their wish to remain honest at all times, and not

to provide ‘false hope’:

I think the interviews I find can be very stressful because the

parents are looking for hope – they are looking for some slight

window of hope and they are trying to test you to see – to go

over stuff with you, and it can be very difficult and you just

have to try. (Speech and language therapist participant in

focus groups)

However parents’ comments indicated that they were not

seeking false hope and wanted full facts and honesty. In

formulating the recommendation for the guidelines the

word ‘realistic’ was therefore included to ensure that the

concept of ‘false hope’ is not fostered (NFVB 2007). Parents

suggested informing families about a spectrum of potential

outcomes that were possible given their child’s condition,

rather than merely presenting the worst case scenario.

Some professionals spoke of the need to strike a balance

between providing hope and not minimising the implica-

tions of the information they were providing;

I think hope is an ingredient that isn’t quantifiable, but

there’s that balance between giving a positive message but yet

not minimising the seriousness of the condition …and not

minimising the future but leaving that space that they can

hope. (Psychologist participant in focus groups)

Need for training and evidence-based policies

Lack of training and support meant that some professionals

found it difficult to approach the task of talking with

parents sensitively:

I think it varies as well, some people are better, and some

people are sensitive and aware of breaking bad news, as well

as to point out that it’s not all doom and gloom and that the

child has some abilities as well. And some people are a bit

Table 1 Parent and professional rating of positive messages as a recom-

mendation for best practice

Group

surveyed n

Strongly

agree Agree Neutral Disagree

Strongly

disagree

Parents 177 75% 16.8% 2.7% 1.1% 0.5%

Professionals 227 81.1% 13.0% 1.3% – –

Table 2 Parents’ reporting of aspects of communication during disclosure

During the consultation did you feel that n Yes No No response

You were given the news with hope and positive messages 163 46.7% 41.8% 21

The person giving the news was direct 168 84.8% 6.5% 16

Communicating positive messages to families 261

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

uncomfortable, they don’t know how to deal with it

themselves I suppose, and I’m sure it can come across as

being uncaring and a bit harsh and they think we’re trying to

get it done as quick as we can. It’s very hurtful for parents.

(Paediatric nurse participant in focus groups)

The need for training was strongly endorsed through the

current research, with 93.3% of professional respondents

indicating that they felt training in communication skills to

be relevant and 80.7% indicating that specific training for

informing families of their child’s disabilities is relevant

(Harnett et al. 2007). One aspect in which training may be

helpful is in promoting the importance of tailoring commu-

nication to the needs of the individual family, acknowledg-

ing that families will have different feelings and reactions in

relation to the diagnosis. In the following example the

professional directly questions the positive outlook a family

have expressed;

I would say to them, if they are fine today, well look you are

in good form today but you are going to have bad days and be

honest with them. And tell them, down the road you are

going to meet various stumbles and you are going to have to

get over that. And its not always going to be rosy in the

garden, you are going to have very bad days. (Midwife

participant in focus groups)

Whilst the professional is clearly aiming to support the

family, perhaps we should question whether the same state-

ments would be made about a child without disabilities.

The provision of training in this area is supported by the

UN Convention. Article 4 paragraph 1(i) places a respon-

sibility on State Parties ‘to promote the training of profes-

sionals and staff working with persons with disabilities in

the rights recognised in the present Convention’, amongst

which are ‘respect for difference and acceptance of persons

with disabilities as part of human diversity and humanity’

[Article 3 (d)]; and the recognition that ‘children with

disabilities should have full enjoyment of human rights and

fundamental freedoms on an equal basis with other

children’ [Preamble (r)].

Litigation

Professionals very honestly pointed to a fear of litigation

having influence, for some, over communication at the time

of diagnosis. This can lead to presentation of the worst case

scenario rather than a balanced point of view. As one person

said:

…and a fear of litigation is coming very much into it, all our

practices for diagnosis, the way we word it, the way you say

it, you know – just in case it doesn’t work out the way you

said it would at five years ago… at least that’s in the voice at

the back of my mind. (Consultant psychiatrist participant in

focus groups)

Indeed the literature indicates that the risk of litigation

surrounding insensitive communication of difficult news is

very real (Fallowfield & Jenkins 2004). However, previous

research emphasises honesty, empathy and the acknowl-

edgement of uncertainty as elements of sensitive commu-

nication (Sloper & Turner 1993). The acknowledgement of

uncertainty includes the presentation of a range of possible

outcomes rather than merely the worst case scenario. There

is support for the need for sensitive communication in the

Irish context. Ciarán Breen, Director of the State Claims

Agency in Ireland (in correspondence with the researcher)

stated:

Our experience, based on our engagement with plaintiffs’

solicitors, is that a large percentage of cases are taken

precisely because the medical staff have not engaged or

improperly communicated with parents of children. To

clarify this, these plaintiffs stated that but for badly handled

or inappropriate or insensitive disclosure, they would not

have elected to sue. (personal communication, 13 June

2008)

Discussion

The concept of celebrating and recognising the individual

child firstly as a person in their own right, a member of a

family unit, a member of a community; and secondly, in the

context of the communication of the child’s diagnosis,

recognising that this person may have additional needs; is

in keeping with the UN Convention’s recognition of the

inherent dignity and worth and the equal inalienable rights

of all members of the human family, including those with

disabilities. [Preamble (a) and (c)].

Development of hopeful and positive messages

The current research provides examples of hopeful mes-

sages that are not in conflict with providing honest and

realistic information. Acknowledging the dignity and

worth of the child as an individual as discussed above,

can include celebrating the birth of a child with disabilities.

It means acknowledging and respecting the child first and

the disabilities as secondary in all communication, and

providing messages that are not disproportionately negative

when compared with the visions for the future expressed

for children without disabilities. At its most basic it means

always using a child’s name and never referring to them by

their diagnosis. Appropriate communication at the time of

diagnosis of a child with disabilities can be seen as

providing recognition of the dignity of all children, and

gives voice to the provisions of Article 8 of the UN

Convention (paragraphs 1a, b and c) in relation to raising

awareness of the dignity of persons with disabilities;

combating stereotypes and prejudices; and promoting

262 A. Harnett et al.

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

awareness of the capabilities and contributions of persons

with disabilities.

Another example of appropriate and hopeful communi-

cation indicated by many parents through the current

research is the message that there is help available, ‘we

will be there for you’;

The hospital and the nurses and the staff were absolutely

wonderful… (The paediatrician) sat down with us… he said

one thing to me I will always remember. He said ‘You take

care of yourself and I will take care of his health, and between

us we will get through this. (Parent participant in focus

groups)

Informing families about the spectrum of possible

outcomes for a given diagnosis rather than all negative

possibilities or the worst case scenario is in keeping with

the wishes expressed by the families through the current

research. This is echoed succinctly in the UN Convention on

the Rights of Persons with Disabilities; ‘Respect for the

evolving capacities of children with disabilities and respect

for the right of children with disabilities to preserve their

identities’ (Article 3 paragraph h). For some families the

confirmation of a diagnosis that may have been suspected

for some time can be seen as a positive step in a process to

support the aim of maximising the potential of the child:

I think we can put a positive slant on it. Now that the

problem has been identified, specific things can be put in place

to help the child to reach its full potential. (GP participant in

focus groups)

The promotion of the kinds of appropriate positive

communication outlined above is supported by the UN

Convention, Article 25 (d), which requires health profes-

sionals to raise awareness of the human rights, dignity,

autonomy and needs of persons with disabilities through

training. Many professionals who provide the diagnosis of a

child’s disabilities work in mainstream health services and

may not have direct or regular contact with people with

disabilities (Harnett et al. 2007). Given that there is evidence

of a lack of positive representations of people with disabil-

ities available to the general public through the media in

Ireland and elsewhere (Harnett 2000; Raynor & Hayward

2005) it is important that professionals who may commu-

nicate the diagnosis of a child’s disabilities to the family are

provided with disabilities awareness training. Article 8

paragraph 2 and in particular section 2(d) of the UN

Convention promotes awareness-training programmes

regarding persons with disabilities and the rights of persons

with disabilities. To this end a DVD film (Donohoe &

Harnett 2007) was produced to accompany the National Best

Practice Guidelines for Informing Families of their Child’s

Disability with the dual purpose of providing guidance on

good disclosure practice and affording families an oppor-

tunity to tell their stories about the ordinary lives of their

children with disabilities. The use of these materials in

training is currently being evaluated through a pilot

implementation and training programme in the Cork region

in southern Ireland.

Conclusion

The current research identified hope and positive, realistic

messages as an important aspect of appropriate communi-

cation with families at the time of their child’s diagnosis

with disabilities. This finding is consistent with previous

research from various countries (Leonard 1999; Ormond

et al. 2003). The research identified a gap between this

aspiration and the experience of many parents, and found

that professionals can struggle with issues such as fears of

providing false hope, fears of litigation and a need for

training when they consider providing hope. However, the

research also demonstrated that there are examples of

positive and hopeful messages that can address these

difficulties. When these findings are set within the context

of promoting the value, dignity and rights of people with

disabilities as enshrined in the UN Convention on the

Rights of People with Disabilities it is clear that the initial

communication of a child’s disabilities can become the first

opportunity for professionals to make real the ‘recognition

of the inherent dignity and worth and the equal inalienable

rights of all members of the human family, including those

with disabilities’ [UN Convention Preamble (a) and (c)].

Positive, realistic and hopeful messages can help to ensure

that parental expectations are as positive as possible in

order to influence the developmental opportunities afforded

to the child. Low expectations modelled by authoritative

sources at times when parents are likely to be particularly

vulnerable can have a detrimental impact on the outlook of

parents. Low expectations can create negative, self-fulfilling

outcomes and limit the developmental opportunities that

will be provided for the child with disabilities.

There is convergence between the rights enshrined in the

UN Convention, the principles and recommendations of the

National Best Practice Guidelines for Informing Families of their

Child’s Disability (NFVB 2007), and specifically the provision

of hope and positive messages. This type of communication

supports the paradigm shift recognised by the UN Conven-

tion from seeing people with disabilities as objects of charity

to subjects with rights. Along with positive and realistic

messages, the provision of supports such as parent-to-

parent initiatives for parents who wish to engage with them,

and printed material providing accurate, positive informa-

tion, can be very helpful. In this context an online informa-

tion resource for parents at the time of disclosure is

currently being developed as a follow-up to the current

study.

The UN Convention offers us further reason to commu-

nicate optimism to families. It provides a potential catalyst

Communicating positive messages to families 263

ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264

for governments and organisations to support continuous

improvement in the quality of life for people with disabil-

ities (Quinn 2008) which gives good reason to be hopeful for

children that they will be further respected and supported

to live as citizens enjoying equal rights into the future.

Acknowledgements

This research was carried out by the National Federation of

Voluntary Bodies Providing Services to People with Intel-

lectual Disabilities with support from the Health Services

National Partnership Forum. The project was guided by a

Steering Committee chaired by Dr John Hillery, President of

the Irish Medical Council 2004–2007. We wish to express our

sincere gratitude to the many families, professionals, and

organisations who contributed to the research and in

particular to the parents for sharing their very personal

experiences for the benefit of this research.

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ª 2009 Blackwell Publishing Ltd, British Journal of Learning Disabilities, 37, 257–264