1
40
10
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Title
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May 2019 List
Text
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May 2019 List
URL Address
<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/dmcn.14180</a>
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A novel classification system for research reporting in rare and progressive genetic conditions
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Developmental Medicine & Child Neurology
Date
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2019
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van Karnebeek CDM; Beumer D; Pawliuk C; Goez Helly; Mostafavi S; Andrews G; Steele R; Siden H
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<a href="http://doi.org/10.1111/dmcn.14180" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14180</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Description
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Aim To create a classification system for severe, rare, and progressive genetic conditions for use in research reporting. Method A modified Delphi consensus technique was used to create and reach agreement on a new system of condition categories. Interrater reliability was tested via two rounds of an online survey whereby physicians classified a subset of conditions using our novel system. Overall percentage agreement and agreement above chance were calculated using Fleiss’ kappa (κ). Results Eleven physicians completed the first Delphi, with an overall agreement of 76.4%, the κ value was 0.57 (95% confidence interval 0.51–0.63), indicating moderate agreement (0.41–0.60) above chance. Based on the first survey several categories were described in more detail. The second survey confirmed a classification system with 12 categories, with an overall percentage agreement among the participants of 82.6%. The overall mean κ value was 0.71 (95% confidence interval 0.65–0.77), indicating substantial agreement (0.61–0.80). Interpretation Our new system was useful in categorizing a broad range of rare childhood diseases and may be applicable to other rare disease studies; further validation in larger cohorts is required. What this paper adds This novel 12-category classification system can be used in research reporting in rare and progressive genetic conditions.
2019
Andrews G
Beumer D
Charting the territory
Developmental Medicine & Child Neurology
Goez Helly
May 2019 List
Mostafavi S
Pawliuk C
Siden H
Steele R
van Karnebeek CDM
-
Dublin Core
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/" target="_blank" rel="noreferrer noopener">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4403275/</a>
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Title
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Charting the Territory: Children and families living with progressive life-threatening conditions
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Paediatrics & Child Health
Date
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2015
Creator
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Siden H; Steele R
Description
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OBJECTIVES: To increase awareness of the topic of paediatric palliative care among practicing physicians in Canada by exploring the impact of a child’s neurological or rare genetic life-threatening condition on the affected child and his/her parents. METHODS: Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, which followed 275 children and 390 parents from 258 families. Parents completed multiple surveys, for themselves and their child. RESULTS: These children had a high symptom burden. The three most common symptoms were pain, sleep problems and feeding difficulties; on average, they had 3.2 symptoms of concern. Despite analgesic use, the frequency of pain episodes and distress were invariant over time, suggesting that treatments were not successful. Parents experienced anxiety, depression and burden; at the same time they also reported positive life change and a high degree of spirituality. The child’s condition resulted in parental changes in living arrangements, work status and hours devoted to caregiving. Nearly two-thirds of families were involved with a palliative care team; the size of the community in which a family resided did not make a significant difference in such involvement. CONCLUSIONS: These families experience many challenges, for the patient, other individual members and the family as a whole. At least some of these challenges may be alleviated by early and organized palliative care. Effective interventions are needed to enhance symptom management for the ill child and to alleviate the various negative impacts on the family.
2015-04
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Type
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Journal Article
2015
Backlog
Charting the territory
Journal Article
Paediatrics & Child Health
Siden H
Steele R
-
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PedPalASCNet Member Publications
Subject
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A collection of relevant articles published by one or more of PedPalASCNet's members
Text
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n/a
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Charting the territory: Describing the functional abilities of children with progressive neurological conditions.
Publisher
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Research In Developmental Disabilities
Date
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2017
Subject
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Functional Abilities; Pediatric Evaluation Of Disability Inventory; Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Creator
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Tatla Sandy K; Holsti L; Andrews GS; Feichtinger L; Steele R; Siden H
Description
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AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.
Identifier
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<a href="http://doi.org/10.1016/j.ridd.2017.10.001" target="_blank" rel="noreferrer">10.1016/j.ridd.2017.10.001</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Andrews GS
Charting the territory
Feichtinger L
Functional Abilities
Holsti L
Pediatric Evaluation Of Disability Inventory
Progressive Genetic Metabolic Or Neurological Conditions (pncs)
Research in Developmental Disabilities
Siden H
Steele R
Tatla Sandy K
-
Dublin Core
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Title
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November 2020 List
Text
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Citation List Month
November 2020 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.033" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2020.08.033</a>
Dublin Core
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Title
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Charting the Territory: End-of-Life Trajectories for Children with Complex Neurological, Metabolic and Chromosomal Conditions
Publisher
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Journal of pain and symptom management
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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DNAR orders; pediatrics; terminal care
Creator
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Bao D; Feichtinger L; Andrews G; Pawliuk C; Steele R; Siden H H
Description
An account of the resource
OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited in the Charting the Territory (CTT) study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders and care provided preceding and during the end-of-life. METHOD(S): Of the 275 children enrolled in the CTT study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions and medical information were collected via chart review, interviews and surveys. RESULT(S): 51 of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n=2) to time of death (n=3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children. CONCLUSION(S): While much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering. Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Identifier
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.033</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
Andrews G
Bao D
Charting the territory
DNAR orders
Feichtinger L
Journal of Pain and Symptom Management
November 2020 List
Pawliuk C
Pediatrics
Siden H H
Steele R
Terminal Care
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2013-305246</a>
<a href="http://adc.bmj.com/content/99/8/754.abstract" target="_blank" rel="noreferrer noopener">http://adc.bmj.com/content/99/8/754.abstract</a>
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Title
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Charting the territory: symptoms and functional assessment in children with progressive, non-curable conditions
Publisher
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Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
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PEDI Study; Metabolic; Neurodisability; Genetics
Creator
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Steele R; Siden H; Cadell S; Davies B; Andrews GS; Feichtinger L; Singh M
Description
An account of the resource
Background Children with progressive, non-curable genetic, metabolic, or neurological conditions require specialised care to enhance their quality of life. Prevention and relief of physical symptoms for these children needs to begin at diagnosis, yet, little is known about their patterns of symptoms and functional abilities.Aim To describe these children's symptoms, as well as how the children's condition affects them physically.Design Cross-sectional, baseline results from an observational, longitudinal study, Charting the Territory, that followed 275 children and their families.Setting/participants Seven tertiary care children's hospitals in Canada, 2 in the USA. Families were eligible based on the child's condition. A total of 275 children from 258 families participated.Results The 3 most common symptoms in these children were pain, sleep problems, and feeding difficulties; on average, they had 3.2 symptoms of concern. There was a pattern of under-reporting of children's symptoms for clinicians compared with parents. Regardless of use of associated medications, pain, feeding and constipation symptoms were often frequent and distressing. Children with a G/J tube had a higher total number of symptoms, and respiratory problems, pain, feeding difficulties and constipation were more likely to occur. They also tended to have frequent and distressing symptoms, and to need extensive mobility modifications which, in turn, were associated with higher numbers of symptoms.Conclusions These children experience multiple symptoms that have been previously documented individually, but not collectively. Effective interventions are needed to reduce their symptom burden. Future longitudinal analyses will examine which disease-modifying interventions improve, or do not improve, symptom burden.
2014-08
Identifier
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<a href="http://doi.org/10.1136/archdischild-2013-305246" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2013-305246</a>
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Type
The nature or genre of the resource
Journal Article
2014
Andrews GS
Archives of Disease in Childhood
Backlog
Cadell S
Charting the territory
Davies B
Feichtinger L
Genetics
Journal Article
Metabolic
Neurodisability
PEDI Study
Siden H
Singh M
Steele R
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
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Title
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Crocker, et al.: Reducing barriers to parent participation in pediatric palliative care research.
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Biomedical Research; Palliative Care; Patient Selection; Female; Humans; Male; Parents/psychology; Research Design/standards
Creator
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Siden H; Steele R; Cadell S
Identifier
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<a href="http://doi.org/10.1177/0269216315620945" target="_blank" rel="noreferrer">10.1177/0269216315620945</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Biomedical Research
Cadell S
Charting the territory
Female
Humans
Male
Palliative Care
Palliative Medicine
Parents/psychology
Patient Selection
Research Design/standards
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
n/a
Dublin Core
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Title
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Impact of research participation on parents of seriously ill children.
Publisher
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Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Biomedical Research; Child Health Services; Adolescent; Adult; Child; Child Preschool; Female; Humans; Infant; Infant Newborn; Male; Middle Aged; Palliative Care; Parents/psychology; Severity Of Illness Index; Surveys And Questionnaires; Young Adult
Creator
An entity primarily responsible for making the resource
Steele R; Cadell S; Siden H; Andrews GS; Smit QT; Feichtinger L
Description
An account of the resource
BACKGROUND: There is a paucity of research evidence to guide health care providers' practice in pediatric palliative care. At the same time, some clinicians and Institutional Review Boards are reluctant to approve such studies because of concerns about further burdening families. Yet, there is some evidence that research participation can have positive effects for families. OBJECTIVE: To obtain parents' perceptions about their experience of participating in one of two research studies. DESIGN: Descriptive, quantitative survey. SETTING/SUBJECTS: Caregivers of children with life-threatening conditions (n=323) who were caring for the child at home. MEASUREMENTS: Researcher-designed Impact of Participation questionnaire. RESULTS: Few differences between the two groups were found on Impact responses. Not a single parent reported regretting participating in their study and almost all (96.3%) reported that conducting research about family's experiences in pediatric palliative care had value. Just over three-quarters (76.2%) did not find participation at all painful, and 73.7% reported that participation was about as painful as expected, with 23.2% reporting less painful. Approximately half (50.5%) said that participation had at least some positive effect and only three parents reported any negative effect. An overwhelming majority (93.4%) would recommend participation to other parents in a similar situation. CONCLUSIONS: Participation in research for families with children who have a life-threatening condition is not only acceptable to parents, but may in fact have a positive effect. Although clinicians and Institutional Review Boards may be hesitant to fully support such research, it is clear that conducting research in the field of pediatric palliative care is important.
Identifier
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<a href="http://doi.org/10.1089/jpm.2013.0529" target="_blank" rel="noreferrer">10.1089/jpm.2013.0529</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2014
Adolescent
Adult
Andrews GS
Biomedical Research
Cadell S
Charting the territory
Child
Child Health Services
Child Preschool
Feichtinger L
Female
Humans
Infant
Infant Newborn
Journal of Palliative Medicine
Male
Middle Aged
Palliative Care
Parents/psychology
Severity Of Illness Index
Siden H
Smit QT
Steele R
Surveys And Questionnaires
Young Adult
-
Dublin Core
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Title
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PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
October 2017 List
Notes
<p>Friedrichsdorf, Stefan J<br />Postier, Andrea C<br />Andrews, Gail S<br />Hamre, Karen Es<br />Steele, Rose<br />Siden, Harold<br />Journal Article<br />New Zealand<br />J Pain Res. 2017 Jul 31;10:1841-1852. doi: 10.2147/JPR.S138153. eCollection 2017.</p>
URL Address
<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">https://doi.org/10.2147/JPR.S138153</a>
Dublin Core
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Title
A name given to the resource
Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study
Publisher
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Journal Of Pain Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Hospice; Life-limiting; Neuropathic Pain; Palliative; Pediatric Palliative Care
Creator
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Friedrichsdorf SJ; Postier A; Andrews GS; Hamre K E; Steele R; Siden H
Description
An account of the resource
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
Identifier
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<a href="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">10.2147/jpr.s138153</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2017
Andrews GS
Charting the territory
Friedrichsdorf SJ
Hamre K E
Hospice
Journal Of Pain Research
Life-limiting
Neuropathic Pain
October 2017 List
Pain and Irritability Project
Palliative
Pediatric Palliative Care
Postier A
Siden H
Steele R
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
June 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems.
Publisher
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Journal Of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Child Behavior Problems; Complex Chronic Conditions; Families; Pediatric Palliative Care; Posttraumatic Growth; Siblings.
Creator
An entity primarily responsible for making the resource
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Description
An account of the resource
OBJECTIVE:
The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. METHODS: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. RESULTS: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. CONCLUSION: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family.
Identifier
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DOI: 10.1093/jpepsy/jsw053
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Andrews GS
Cadell S
Charting the territory
Child Behavior Problems
Complex Chronic Conditions
DeLongis A
Families
Journal of Pediatric Psychology
June 2016 List
Pediatric Palliative Care
Posttraumatic Growth
Siblings.
Siden H
Steele R
Stephenson E
-
https://d1y502jg6fpugt.cloudfront.net/32554/archive/files/56bacdb5013e2309625ce86fe370f3c2.pdf?Expires=1712793600&Signature=Zo%7ElBtRq0w2vXK37xV2as9lM6FZZiSC-c8-3bVsDxLbAd9VDcaxqmUv91J0yqJcowf6-EBltshDE6vLalJFAtvCUyOt5xFqBHj5cvdXk%7Ega%7Ex002YcJ6EDv251JTGln6sMb1PQVDAZhjEiZghT5Lg93%7EMFQm3d2XdZqcNKno3wXcD3XsB0zQj4hpTqkPR7RZfMYTVE1BnTdym2GlXvI7PHB7Q5JP7JmWU88oDiTmCjh128H-2pQOo50abNDs4LHYe8QqeN2JK1M3BrxXIwjCl3pMuWOfXuF12h3iNs5Dl4lcvo8gKxS1p13qb6nwfRHDEN9qiNyIBJ8h%7EX6CH8rssw__&Key-Pair-Id=K6UGZS9ZTDSZM
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PedPalASCNet Member Posters
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Title
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The Impact of a Diagnosis among Parents of Children with Severe, Progressive, Life-Limiting Diseases (Poster)
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Romines V; van Karnebeek C; Siden H; Adam S; Birch P; Andrews G
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2018
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Article information provided for research and reference use. It is licensed under the Creative Commons License: <a href="https://creativecommons.org/licenses/by-nc-nd/4.0/">Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0)</a>
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Background: Children affected by severe, progressive life-limiting diseases experience a variety of symptoms and disease trajectories that are not well understood or described. Many of these children do not have a specific medical diagnosis, but are assigned a broad diagnosis that simply describes a cluster of their symptoms (e.g. “Severe Epilepsy”). Parents of these children may experience exclusion from their community, and feelings of helplessness, because their child does not have an “explainable” disease.
Aim: The objective of this study is to examine the impact of a diagnosis on the parents of children with severe, progressive, undiagnosed conditions, who were eligible for genetic testing.
Method: Eligible children had neurological impairment, limited communication, full-time caregivers and typically mobilized in wheelchairs. Children ranged in age from 5-20 years, with an average age of 11.5, and the average number of years since their symptoms first appeared was 11.2 years. Six parents were given a semi-structured interview by a genetic counselor in order to further understand their experience with their child’s condition and how reaching a diagnosis might impact their life and their child’s life. The parents were also given the opportunity to participate in genome-wide sequencing to potentially achieve a specific diagnosis for their child. The interview data was transcribed and coded into themes using the grounded theory approach.
Results: Five out of six of the parents interviewed felt a diagnosis for their child was of no, or very little, importance. All six parents felt school resources would not be impacted by a diagnosis and five of the parents felt community support would not be impacted either. The most influential reason to pursue a diagnosis was the chance to be better prepared for the child’s future and to gain insight into the future trajectory of the child’s condition. This reason was presented by all four parents who decided to subsequently undergo genome-wide sequencing.
Conclusion: Further research should look into comparing the parents’ experiences between younger children and older children to see if there is a greater level of acceptance associated among parents of children who have been affected for a longer time.
Charting the territory
Genetic Testing
Qualitative