A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child
Receiving a diagnosis, such as cerebral palsy (CP), can have lasting impacts on caregivers and families. Previous literature has described that caregivers wish to receive a diagnosis together, without delay, in a private, direct, honest, and sympathetic way. This study aimed to understand the experi...
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| Format: | Article |
| Language: | English |
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MDPI AG
2025-01-01
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| Series: | Children |
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| Online Access: | https://www.mdpi.com/2227-9067/12/1/105 |
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| author | Stacey D. Miller Maria Juricic Jaimy Coates Jeffrey N. Bone Ash Sandhu Kishore Mulpuri Maureen O’Donnell |
| author_facet | Stacey D. Miller Maria Juricic Jaimy Coates Jeffrey N. Bone Ash Sandhu Kishore Mulpuri Maureen O’Donnell |
| author_sort | Stacey D. Miller |
| collection | DOAJ |
| description | Receiving a diagnosis, such as cerebral palsy (CP), can have lasting impacts on caregivers and families. Previous literature has described that caregivers wish to receive a diagnosis together, without delay, in a private, direct, honest, and sympathetic way. This study aimed to understand the experience of caregivers of children with cerebral palsy (CP) or similar conditions when receiving a diagnosis for their child.: Caregivers of children and youth aged 0–18 years with CP or a similar physical condition completed a survey investigating who first provided a diagnosis, and the way it was provided. Questions were based on the pediatric SPIKES framework. Caregivers were asked how receiving a diagnosis could have been improved. Thematic analysis of qualitative data were performed.: A total of 180 surveys were completed. Mean age at diagnosis was 19.0 (SD 25.7) months. Most caregivers reported the healthcare provider was sympathetic and understanding (75%) and clear and direct (69%). Only 25% of caregivers recalled being directed to where to find information; only 37% reported being told what their child does well or is expected to do well. Thematic analysis revealed three themes: (1) less waiting, (2) more compassionate communication, and, (3) information and support to move forward: Caregivers wanted the diagnosis to be timely and provided with compassion. Requests for greater information on the diagnosis, available support, and their child’s future, suggest that greater care to support families in the aftermath of receiving a diagnosis is also needed. |
| format | Article |
| id | doaj-art-03199252df2a42578f2335fa40f57c65 |
| institution | Kabale University |
| issn | 2227-9067 |
| language | English |
| publishDate | 2025-01-01 |
| publisher | MDPI AG |
| record_format | Article |
| series | Children |
| spelling | doaj-art-03199252df2a42578f2335fa40f57c652025-01-24T13:27:19ZengMDPI AGChildren2227-90672025-01-0112110510.3390/children12010105A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their ChildStacey D. Miller0Maria Juricic1Jaimy Coates2Jeffrey N. Bone3Ash Sandhu4Kishore Mulpuri5Maureen O’Donnell6BC Children’s Hospital, Vancouver, BC V6H 3V4, CanadaBC Children’s Hospital, Vancouver, BC V6H 3V4, CanadaDepartment of Orthopaedic Surgery, BC Children’s Hospital, Vancouver, BC V6H 3N1, CanadaBiostatistics, Clinical Research Support Unit, BC Children’s Hospital Research Institute, Vancouver, BC V5Z 4H4, CanadaBiostatistics, Clinical Research Support Unit, BC Children’s Hospital Research Institute, Vancouver, BC V5Z 4H4, CanadaBC Children’s Hospital Research Institute, Vancouver, BC V5Z 4H4, CanadaSunny Hill Health Centre for Children, Vancouver, BC V6H 3N1, CanadaReceiving a diagnosis, such as cerebral palsy (CP), can have lasting impacts on caregivers and families. Previous literature has described that caregivers wish to receive a diagnosis together, without delay, in a private, direct, honest, and sympathetic way. This study aimed to understand the experience of caregivers of children with cerebral palsy (CP) or similar conditions when receiving a diagnosis for their child.: Caregivers of children and youth aged 0–18 years with CP or a similar physical condition completed a survey investigating who first provided a diagnosis, and the way it was provided. Questions were based on the pediatric SPIKES framework. Caregivers were asked how receiving a diagnosis could have been improved. Thematic analysis of qualitative data were performed.: A total of 180 surveys were completed. Mean age at diagnosis was 19.0 (SD 25.7) months. Most caregivers reported the healthcare provider was sympathetic and understanding (75%) and clear and direct (69%). Only 25% of caregivers recalled being directed to where to find information; only 37% reported being told what their child does well or is expected to do well. Thematic analysis revealed three themes: (1) less waiting, (2) more compassionate communication, and, (3) information and support to move forward: Caregivers wanted the diagnosis to be timely and provided with compassion. Requests for greater information on the diagnosis, available support, and their child’s future, suggest that greater care to support families in the aftermath of receiving a diagnosis is also needed.https://www.mdpi.com/2227-9067/12/1/105diagnosiscerebral palsycaregiver experience |
| spellingShingle | Stacey D. Miller Maria Juricic Jaimy Coates Jeffrey N. Bone Ash Sandhu Kishore Mulpuri Maureen O’Donnell A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child Children diagnosis cerebral palsy caregiver experience |
| title | A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child |
| title_full | A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child |
| title_fullStr | A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child |
| title_full_unstemmed | A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child |
| title_short | A Survey of Parents’ Perspective of Receiving a Developmental Diagnosis for Their Child |
| title_sort | survey of parents perspective of receiving a developmental diagnosis for their child |
| topic | diagnosis cerebral palsy caregiver experience |
| url | https://www.mdpi.com/2227-9067/12/1/105 |
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