Parents' Perspectives: Challenges to Early Intervention Service Planning and Delivery

Clare O’Shaughnessy, Lecturer, Speech and Language Therapy Department, National University of Ireland Galway, Aras Moyola, Galway.
Mary Hegarty, Health Service Executive Dublin Mid Leinster area.
Hannah Richards, NHS Wales.

Background

Services to children with disabilities have changed to become more family-centered over the last 20 years (Law et al., 2003). A partnership approach to planning services is essential with the family involved in the process of collecting information, evaluating it, and making decisions. The need to empower families to be involved in services is crucial and is now a reality.  This approach to service delivery is supported by legislation (Disability Act 2005) and national strategies e.g. The National Children’s Strategy (2000) and The National Health Strategy (2001). The National Disability Authority (2003) promotes the social model framework as a more acceptable approach to the delivery of all services for people with disabilities. The philosophy of the social approach is client-centered with the client involved in all aspects of the decision making process. There is a need to organise services so as to promote optimum child outcome and greater parental well-being and in keeping.

The literature highlights the importance of communicating with families. Research has highlighted that in order to identify the needs of children with disabilities and to provide the most appropriate services, it is essential to have an ongoing system of feedback with parents on the needs of their children. Blackman (2002) highlights the significance of parental involvement and states that Early Intervention programmes that succeed are those that are typically broad based and have strong parental participation. Family Centred Service is a philosophy and method of service delivery for children and parents which emphasises a partnership between parents and service providers, focuses on the family’s role in decision making about their child and recognises parents as experts on their child’s status and needs (Rosenbaum et al., 1998). Blackman (2002) further states that often, the main focus or target of the intervention must be the family, even though the primary concern is the about the infant’s development.

In 2004, Health Service Executive Dublin Mid Leinster area, disability services identified a need for parental involvement in the assessment planning and review of Early Intervention Services (EIS) for children with disabilities from birth to six years of age. Ethical approval for the study was granted by the Dublin Mid Leinster Ethics Committee. Within Ireland few studies have looked at the parent’s perspective of their child’s needs and seek parents’ recommendations for a communication process.

Research aims

  • To identify the needs of children with a disability from birth to six years of age from the parent’s perspective
  • To recommend a communication process that is most appropriate for ongoing communication regarding these needs between the HSE and parents of these children

Methods

The approach used was qualitative: five focus groups were held with parents of children who availed of Early Intervention Services in an area in Ireland. The selection process purposively assigned parents to focus groups using the following criteria: type of disability, gender and two age groups (0-3 years and 3-6 years). The parents were contacted by phone to explain the research and encourage attendance, and this was followed by an invitation letter. 19 parents out of 50 families contacted attended.

The topic guide for the focus groups covered

1. Needs children have

  • Access to services
  • Experience of services
  • What works well?
  • Any barriers
  • Gaps in service

2. Communication

  • Current experience of communication with the HSE
  • Expectations from a communication point of view
  • Barriers to effective communication
  • Preferred channels of communication

The focus groups were facilitated by two researchers, an interviewer and a scribe. Notes from the discussions were anonymised to protect the identity of the parents. The two researchers held a debriefing session following each focus group. The discussions were tape-recorded and summary transcripts were prepared. The analysis followed a grounded theory approach identifying the emerging themes from the transcripts and using a constant comparative approach. Themes that emerged from one focus group were used within the next group to promote further discussion of the emerging themes. These themes were grouped into categories to build a picture of the perspectives of those interviewed regarding the needs of their children with disabilities.

Results

60 parents were invited to take part in the study. 19 parents participated in five focus groups which were held in different locations to facilitate attendance. 17 were female and two were male. In describing their children’s difficulties, the parents mentioned that speech was the most common difficulty. Nine parents specifically mentioned delay in speech and language development; four of whom indicated speech difficulties only and five of whom indicated an accompanying developmental delay. Four children had autism and one child had a developmental delay and features of autism. Two children had chromosomal abnormalities and one child had hearing difficulties.

Table 1 below shows the age range of the children discussed. 

<3 yrs.

37mths. -6yrs.

Age

No. of Children

Age

N. of children

<1 Yr

1

37 mths. – 4 yrs

5

13 mths. – 2 yrs

5

49 mths. – 5 yrs

1

25 mths. – 3 yrs

3

61 months – 6 yrs

4

Total

9

 

10

Following data were analysed by identifying the themes discussed and organising them into categories. The analysis was drafted initially by the researcher who led the discussion and was developed further following analysis by the other researcher once agreement was reached on the interpretation.
Four main themes emerged;

  1. Uncertainty, fear, anxiety
  2. Positive Experience
  3. Negative Experience
  4. Needs

Theme One: Uncertainty, fear, anxiety

This theme highlighted the issues that caused the parents concern and anxiety. The sub-themes that emerged included; Integration with other children; Availability of services; Access to education; Unmet needs; Cause of conditions. Anxiety was expressed as parents considered the provision of services at an early age as crucial to maximize their child’s capacity to develop. There was some regret that children had not received more services earlier and there was concern about the possible effects of this. Parents also felt that there was a very small time frame for their child to develop and they worried that as their child gets older he/she will develop at a slower rate.  There was considerable anxiety surrounding the need to start therapy now or opportunity will be lost. There was a real fear that this opportunity would be lost because of an unmet need for services. 

“I have more worries in case he has bigger problems than speech”.

 “I don’t know if my child’s problems are hereditary”.

 “(The children) are not being given a chance”.

 “I was very apprehensive in the beginning but when you realise your child needs those services—It’s a big thing to accept”.

“If my older child had got a bit more help earlier on he’d be doing better now”.

Theme 2: Positive Experience

The parents discussed their positive experiences with the services and areas highlighted that facilitated their positivity were the team assessment; coordinated appointments; having an awareness of goals; empowerment; early diagnosis; straightforward access. Parents generally felt that appointments were satisfactory, that they usually know when their appointments would be and that they were facilitated through co-ordination of appointments with the various health professionals involved. This in turn helped parents to maintain normal family life. In general it was noted that for changes in appointments therapists would contact the parents by phone and that the professionals were “very good for co-coordinating appointments”.

“Staff were excellent. I was very lucky. Everything was put in place before I left hospital”.

“Knew he had special needs from start”

 “I work part time and am able to get appointments that slot in around work rather than the other way around”.

“It’s a great help to have appointments on the one day”.

“Definitely helped me where there is co-ordination—they are all there in the one room and can co-ordinate diaries”.

A number of parents felt that they were getting a very good service and receiving the required services at that time. Comments were made in relation to changes in receiving services in services.
“It’s easier to get speech and language therapy than a dental appointment”.

This is in sharp contrast to some of the other parents, some of whom felt it necessary to fundraise for speech therapy.

Other positive comments included;
“I have no complaints about the service, just information, finding out where to get the stuff”.

“We’ve been lucky that our daughter got a place in special unit and teacher is properly trained in autism. From the start they have known what to do, been very purposeful, they’ve taken the right approach and its working”

“Generally I think the system is pretty good”

 

Theme 3: Negative Experience

Dissatisfaction with services related mainly to long waiting times and gaps in service, or lack of service in other areas. Some parents reported that they felt they were not being listened to.   

 “I spoke to a very senior person in the health board last October the day after our daughter was assessed who promised we would get a copy of report and that he would work with me in any way he could to bring our daughter forward and I haven’t heard from him since. He’s a very senior person and this disappoints me.” 

They also highlighted the lack of communication between professionals.
“Staff doesn’t know what information they have. We duplicate giving information. They should just pick up the file and read it in advance”.

The waiting for a service was very frustrating according to the parents. They felt that services should be based on the needs of each child and not be subject to the priority system of the service.
“I feel that by the time she gets to six, if we rely solely on the services that the health service provides, she will have missed her chance”.

Some parents had negative experiences in relation to communication and the lack of it in some cases particularly after leaving hospital. They emphasised that because the disability or condition is new to them they often don’t know what questions to ask, who to ask, or what services they required. Parents expressed dissatisfaction with delay in receiving diagnosis; difficulties being heard.

“They couldn’t give a diagnosis—wewere told jury is out—come back in another year”
“You are saying the same thing four or five times”.
“I found it very hard to find out anything”.


Theme 4: Needs

Parents discussed their needs at length to improve the existing service and to promote their successful partnership with the professionals. They identified the need for information; early intervention and focused goals. The time of diagnosis was considered important in terms of giving information but the parents may not have the capacity to take it all in at this time and therefore follow up is important.

“The public health nurse told me about the domiciliary care allowance. I got the rest of the information in waiting rooms, listening to people. “

You could get information in the hospitals but there should be a desk you can go to for information. The idea of one person who would give it to you or tell you where to go”.

Parents felt that support was crucial to the development of their children and to maintain the balance in the family with their other children. Parents needed to feel that they were equals in order to feel empowered in their dealings with professionals. There is a necessity for ongoing regular consultation with parents to facilitate articulation of their needs and focus goals.
“You can’t make decisions if you don’t know about the services”

  • “The parent really is the person who knows the child and will have some idea what will work and what wouldn’t—Its not just a matter of one programme—so you need someone to give you all the information.”

 
“Early intervention service needed to maximise a child’s capacity”

 “Just because children have a disability it doesn’t mean they can’t achieve—every child should be encouraged to reach their potential”.

“They should be all together, talking about your child and there is a plan for the future and that’s what you are concerned about at the end of the day.”

Discussion

Parents varied in their experience of receiving services. Parents whose children were diagnosed early tended to find the process of diagnosis and getting involved with the services clearer and more satisfactory than did parents whose children were diagnosed later. Overall parents reported being either satisfied or very satisfied with services received. They were very satisfied in relation to team assessment days because there was good co-ordination, met all the professionals, and they developed new awareness of their child’s difficulties as a result. Dissatisfaction with assessment and diagnosis centered largely on uncertainty or delay in diagnosis, having to repeat oneself continually to different professionals and lack of appropriate facilities, long waiting times and gaps in service, or lack of service in other areas. The parents perceived input from professionals as therapy when the therapist worked directly with their child, and did not appear to see parent training as therapy. They felt that they still needed professional guidance and that follow up sessions after parent training was necessary to build their confidence in working with their child. It is important for health professionals to meet with parents and jointly discuss the way forward facilitating coordinated future planning.

The results highlighted areas of need to develop the early intervention services.

  • Disclosure of the presence of disability should be given as early as possible and in a sensitive manner that conveys understanding of the difficulties parents may have in accepting the diagnosis.
  • The therapeutic process should be explained clearly to parents in order to develop their understanding of their own role in the process and of the therapeutic goals. 
  • Full information on their child’s condition, services, entitlements and support at the time of diagnosis.
  • Both written and verbal communication
  • One reliable information source
  • Information regarding the school integration process.
  • Provide parents with knowledge on availability of services

This research has identified factors necessary for this service in Ireland to create successful partnerships with parents. The study identified similar findings to other research in this area; the acknowledgement of the parent as expert on their child and their participation as partner is central to the development of satisfactory services for children with disabilities.  Although the sample size was small, the depth of information provided by the parents of this study provides valuable insight into the perceptions of the parents who actually contributed. The parents felt strongly about the services their child received echoed by one of the parents;
“Just because children have a disability it doesn’t mean they can’t achieve—every child should be encouraged to reach their potential”. 
The findings provide evidence to aid service planning and delivery within an Irish context.

References

Blackman, J.A. (2002) ‘Early Intervention: A global perspective’. Infants and Young Children. 1(2)

Department of Health and Children (2001). ‘Quality and Fairness: A Health System For You: The Irish National Health Strategy’. Dublin: Stationary Office. Ireland.

Government of Ireland (2000) The National Children’s Strategy: Our Children, Their Lives. Dublin: Stationary Office. Ireland.

Government of Ireland (2005) Disability Act. Dublin: Stationary Office. Ireland.

National Disability Authority (2003) Strategic Plan 2004-2006. 25 Clyde Road, Dublin 4.

Law, M., Hannah, S., King G., Hurley, P., King S., Kertoy M., & Rosenbaum, P. (2003) ‘Factors affecting family centred service delivery for children with disabilities’. Child: Care, Health & Development. 29(5)

Rosenbaum, P., King S., Law, M., King G., and Evans, J. (1998). ‘Family Centred Service: a conceptual framework and research review’. Physical Occupational Therapy in Paediatrics, 18, pp1-20

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