Based on Keith and Schalock(1992)

Analysis Procedure  

• Extract significant statements from each paragraph.

• Formulate statements of meaning and/or themes.

• Review of transcripts and data analysis by participants during a second interview.

• Organize themes into clusters and categories according to their most central meaning.

Overview of Findings

• Categories and Theme Clusters  

• Helpful and Least Helpful Things Schools Do for Families

• Recommendations - Parents and Children 

• Implications for Schools

Findings

• Category 1:   Communication

• Category 2:   Social Belonging

• Category 3:   Living with Risk and      Uncertainty

• Category 4:   Complexity of Medical Condition

• Category 5:   Compassion, Care and Control 

Category 1: COMMUNICATION

Theme Cluster 1:

      Home-School Communication

Theme Cluster 2:

      Within-School Communication

Theme Cluster 3:

      Relay of Medical Information

Category 1: Quotes:

Communication

• “The door is always open into [the principal’s] office and the teacher’s - so there’s communication.” – Mother of 11 yr old girl.

• “It’s almost like at the beginning of the year… we need to get together and say okay what if” - Mother of 11 yr old boy.

• I’ve had no problems with communicating and a lot of that is my approach as well, like I don’t get angry, I tend to be fairly diplomatic” - Mother of 9 yr old boy

• “Substitutes weren’t getting the information that they needed…” - Mother of 9 yr old girl.

Relay of Medical Information 

• “Health alert notices [are] there to refer to, they’re …in an envelope and they’re posted on the side of the classroom on the bulletin board.  So they’re easy access” - Mother of 8 yr old boy.

• “In front of the class she [the teacher] would, like, tell the whole class that I have had heart surgery”  –  8 yr old boy.

• The counsellor was supposed to get it [medical information ] to all the teachers and obviously people were not reading their memos…”  – Mother of 12 yr old boy.

Category 2: SOCIAL BELONGING

Theme Cluster 1:

      Social-Belonging of Children

Theme Cluster 2:

      Social-Belonging of Parents

Theme Cluster 3:

      Interferences with Social Belonging

Category 2: Quotes

Social Belonging

• “She does not want to appear different” – Mother of 9 yr old girl.

• “My big concern is always his self-esteem”. - Mother of 8 yr old boy.

• “I don’t feel too socially connected, I’m not really visible, I’m on my own a lot, I enjoy it...but I do feel connected to the school” – Mother of 9 yr old boy.

Interferences with Social Belonging

• “All my friends will run about the field and play soccer and stuff that I can’t play or I’d have to stop every five minutes” – 8 yr old girl.

Category 3: LIVING WITH RISK AND UNCERTAINTY

Theme Cluster 1:

      Surgery and Medical Condition

Theme Cluster 2:

      School Related Uncertainties

Theme Cluster 3:

      Parental Responses to Risk and Uncertainty

Category 3: Quotes

Surgery & Medical Condition

• “There’s no guarantee on, uh, how long a life span [my child] may have. They don’t know.  Um, he could go on to be uh, an aspiring, you know, successful adult…he could live to see ten (clears throat) and it could happen that he won’t be around when he’s seven. - Mother of 5 yr old boy.

Parental Responses

• “So I don’t want him to be categorized as a typical little boy when he hurts himself …you still have to check him out…advise us if he falls” - Mother of 8 yr old boy.

Category 4: COMPLEXITY OF MEDICAL CONDITION

Theme Cluster 1:

      Nature of Condition

Theme Cluster 2:

      Development of Child

Theme Cluster 3:

      External Manifestations

Category 4: Quotes  

Nature of Condition

l“It’s kind of an invisible thing, so it is not something that is in their face all the time” – Mother of 11 yr old boy.

• “It’s like a hidden problem” – Mother of 6 yr old girl

• “She looks great so they [teachers] think you are a bit wacko” – Mother of 11 yr old girl.

• “That’s where probably the physical condition comes in and limits her – that she needs at least eleven hours of sleep. She does tire easier than other kids…”

             - Father of 11 yr old girl.

Category 4: Quotes

Development of Child

• “Because of all the heart surgeries and all the stuff she’s gone through that it’s caused significant delays in her development”- Mother of 6 yr old girl.

External Manifestations

• “She wants a shirt that’s gonna come right up.  Whereas before she didn’t care.  We’ve always been really open about it.  But I think it’s just where she’s getting to in her, you know, in her life…” - Mother of 8 yr old girl.

• Oh you can see her color, like her color is – she’ll tend to go a little bit blue – Mother of 8 yr old girl.

• “He would tend to be short of breath” – Father of 8 yr old boy.

• “Well, I'd get really tired.” – 12 yr old boy. 

Category 5: COMPASSION, CARE AND CONTROL

Theme Cluster 1:

      Compassion and Understanding

Theme Cluster 2:

      Care and Concern

Theme Cluster 3:

     School Designation and Services

Theme Cluster 4:

     Sense of Control at School

Category 5: Quotes

Compassion, Understanding, Care and Concern  

• They [the teachers] go overboard trying to um, understand what we’re going through. - Mother of 5 yr old boy.

• But he [the school principal] said that he had been ill and that he knew what it was like to have to come to work and be ill … so he had some empathy for [my son]”- Mother of 11 yr old boy.

• “This one teacher um, doesn’t allow – like the windows to be opened so then [my child] has to go and take a walk.” – Mother of 12 yr old girl. 

• “We’ve had some teachers virtually assign a guardian to [our son] – Father of 8 yr old boy. 

School Designations and Services

• “It’s kind of a, a, a, balancing act because you don’t want them to stand out from other kids and, you know, be pulled out of the class.  But they, they’re getting that one-on-one…” - Mother of 8 yr old girl.

• “There’s no follow through from year to year”

            – Mother of 11 yr old girl.

• “...And you realize the next September that they [new teachers] haven’t even read her file!” – Mother of 11 yr old girl.

Sense of Control

• “I think on some level with some issues we feel that even if we go ahead and voice our displeasure that for other reasons it won’t be heard. Like for example, if there’s a teacher whose teaching style we don’t really think much of, even though that may be backed up by other parents there is not much that the school can do …” – Parent of 9 yr old boy.

• “I purposefully involve myself in these things so that I can watch over my daughter” – Mother of 11 yr old girl.

• “I am not as worried now because I am coaching her team” – Mother of 8 yr old girl.

Helpful Things Schools Do

Communicating

• “Getting the IEP’s [Individual Education Plans] done quickly, informing the teacher quickly”

     - Mother of 11 yr old girl.

Being Flexible

• “She can rest if she wants to. When she gets tired she can put her head down”

     - Mother of 11 yr old girl. 

• “[The school] allowed me to keep her home in the afternoon” - Mother of 6 yr old girl.

Listening Actively

• “Listened and tried to understand really what her needs are…” – Mother of 11 yr old girl.

Providing Educational Programs & Services

• “The new principal coming in and offering the tutor … I had no idea that there was even a tutor available”

    - Mother of 12 yr old girl.

Providing Educational Programs & Services

• “It was a really good program that they had and it taught how to deal with bullies and self-esteem” - Mother of 10 yr old girl.

• “Well, they have the Jump Rope for Heart Program”

    - Mother of 8 yr old girl.  

Being Supportive 

• “Dealing with some problems…like helping me out” 

    - 10 yr old girl.

Least Helpful Things Schools Do

Not Being Discrete

• “The least helpful for my daughter was discussing her in front of her – it was very inappropriate”  -Mother of 12 yr old girl.

Inadequate Communication

• “I was frustrated at the beginning of this year…her teacher this year didn’t seem to know who she was or what was going on with her” - Mother of 11 yr old girl.

Not Adapting/ Modifying School Programs

• “It’s not my fault that I can’t –they [gym teachers] should mark the stuff that I can do - 10 yr old girl.

• “Just expecting her to keep up with all the other kids at the same pace that they’re all at”  - Mother of 6 yr old girl.

Not Being Supportive

• “Sometimes the teachers wouldn’t do anything and they’d [problems] just get worse and worse”  -10 yr old girl.

• “Not listening”  -11 yr old boy.  

• “Not listening and not seeing my son as the one who knows best about how he feels and what is happening for him and giving him that validation”  - Mother of 11 yr old boy. 

Parent Recommendations

Acknowledge Parents as Experts

• “I may not have any expertise over anybody else’s child but on mine I am the expert – and acknowledging that and seeing that that’s important”  - Mother of 11 yr old boy. 

Involve Parents in their Child’s Education 

• “Make sure parents are part of the education … really hearing what the parents have to say because the parents know”  - Mother of 11 yr old boy.

Trust the Child

• “Respect him when he says he’s tired”  – Mother of 7 yr old boy.

• You know they, they are not faking it, they're not, you know…you have to pay attention” – Mother of 13 yr old girl.

Plan Proactively

• “Proper planning prevents panic appointments” 

    - Father of 11 yr old girl.

Communicate with Parents

• “Keep in contact with parents”

    - Mother of 8 yr old girl.

Create A New Position in the Schools

• “It’s almost like they need to create a new position”

     - Mother of 12 yr old girl. 

• “If there was one person who was consistently involved with the child from Kindergarten to Grade 5.  One person to follow their development.”

     - Mother of 11 yr old girl. 

Organize Activities that include Children with CHD  

• “If they had groups for kids with heart defects”  -Mother of 9 yr old girl.

• “ I wish they would have more sort of extra-curricular not necessarily the soccer or – like maybe a reading club”  - Mother of 9 yr old girl.

Adapted Physical Education Programs / Grading

• “It would be nice if they had a different sort of evaluation – you know” – Mother of 9 yr old girl.

• She’s not sitting out every PE class, but I think they could probably do something a little different. – Mother of 14 yr old girl.

• Awareness and Understanding of CHD

• “The principal admitted that he didn’t understand the defect” – Mother of 6 yr old girl.

Child Recommendations

Listen To Me

• “They [teachers] should listen more instead of listening but not exactly hearing”

     - 11 yr old boy. 

• “I wish I could talk to teachers more – like they’d listen to kids more” - 9 yr old girl.

Treat Me Like a Normal Child

• “They [teachers] should try to kind of just treat them more as a child, like as a regular child than as a child with a heart condition” -11 yr old boy.

• “Just treat them [kids with CHD] like a child not say like a dog …that’s what happens.  I have felt that a lot” 

    - 11 yr old boy.

Walk the Talk

• “ Like when you say that you are going to do something they [teachers] shouldn’t just say it – they should do something” - 11 yr old boy.

Organize Helping Activities and CHD Groups 

• “We probably need more helping stuff to do in schools … we need more like clubs and like Scouts or something at school” - 8 yr old girl.

• “I thought they [schools] could have like a program or something with like children with heart conditions”

    - 10 yr old girl.

Implications for Schools
-- 5 C’s --            

            Educators can play a key role in improving the quality of life of children and their families by enacting the following five values in the school setting:

• Communication

• Compassion

• Confidentiality

• Competence

• Consistency

Where have we been?

•      Roberts, J. (2002). “School children with congenital heart disease: Preliminary findings.” Paper presented at the International Human Sciences Research Conference, Victoria, June 20.

•      Roberts, J. (2002). “Ethical issues in the service of school children with congenital heart disease.” Paper presented in absentia (by Dr. Jean Pettifor) at the XXV International Congress of Applied Psychology, Singapore, July 7.

•      Roberts, J. (2002). “School children with congenital heart disease.” Paper presented at the PsyPAG conference, University of Cardiff, Wakes, UK, July 22.

•      Roberts, J. (2002). Congenital heart disease. What we know and what we still need to know. PsyPAG Quarterly, 44, 50-53.

Where to Next ?

• Literature review.

• Completion of the study entitled “The Experience of Healthy Siblings of Children with Congenital Heart Disease.”

• Presentation and article for the Seventh International Child and Youth Care Conference in Victoria B.C., August 2003.

• Publication of the School Handbook.