Abstract
Compared to other neurodevelopmental disorders, research on developmental
coordination disorder (DCD) remains sparse. Studies on the familial experience of
DCD are similarly scarce. The experience of DCD within the family can be
challenging with the diagnostic process being especially stressful. Parents are
seldom offered information pertaining to DCD or post-diagnostic support. As a
result, the provision of post-diagnostic support has been identified as a key area
requiring improvement. The provision of guidance for parents is also recommended
in the Clinical Practice Recommendations on the definition, diagnosis, assessment,
intervention, and psychosocial aspects of Developmental Coordination Disorder
(CPR-DCD). Although recommendations are made for families journeying with DCD
to be better supported, there are few suggestions as to what this support should look
like. Therefore, the aim of this study was to develop guidelines of support not only for
the individual who receives the DCD diagnosis but for the family unit as a whole as
they journey through the diagnosis and navigate life with this disorder.
A phenomenological study design was used to explore the lived experiences of
families with DCD and probe the specific support desired by these families. Data was
obtained from 44 participants who answered an online questionnaire, 12 of whom
also participated in a semi-structured interview. The data analysis phase utilised
thematic content analysis.
From the data analysis two distinct categories emerged. The first category
addressed the experience of journeying with DCD and consisted of three themes.
The first theme included the challenges during the diagnostic process. This included
difficulties obtaining a diagnosis and challenges obtaining support especially within
healthcare and education. The second theme considered the impact of DCD on the
family. Significant impact on the financial, emotional and familial relationships was
noted. The final theme in this category focused on the sense of isolation experienced
by families journeying with DCD as a result of a lack of understanding in society in
general and by professionals.
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The second category included the support desired by families journeying with DCD
and resulted in the development of three primary guidelines of support for families
journeying with DCD. The first guideline is that of the provision of easily accessible,
reader friendly, practical and location specific information. The necessity to emphasis
awareness within the general public as well as within healthcare and education
formed the second guideline. The final guideline considered the importance of
providing means of connection with other families experiencing similar challenges in
order to reduce the sense of isolation experienced as well as promote the sharing of
information.
This study primarily contributed to the gap in knowledge through the development of
guidelines to support families journeying with DCD. In addition, challenges
experienced by families journeying with DCD were identified.