Barriers and enablers to participating in regular screening programmes for women with cerebral palsy: A qualitative life course study

Author(s):  
Sonali Shah ◽  
Julie Taylor ◽  
Caroline Bradbury‐Jones
BMJ Open ◽  
2020 ◽  
Vol 10 (2) ◽  
pp. e032172 ◽  
Author(s):  
Sonali Shah ◽  
C Bradbury-Jones ◽  
Julie Taylor

ObjectiveTo enhance understanding of the bodily and lifestyle effects of ageing with cerebral palsy (CP) for women, with a particular focus on experiences with sexual and reproductive healthcare (SRH) services in the UK and North America.DesignA qualitative study underpinned by feminist disability theory and drawing on digital ethnographies to capture health and healthcare experiences for women with CP.SettingA global community of 140 women with CP, who are members of the closed international Facebook group,Women Ageing with Cerebral Palsy(WACP).ParticipantsForty-five members of WACP who were based in the UK and North America. The women were aged between 21 and 75.MethodsMessages posted on WACP between January 2018 and October 2018 were collated and underwent thematic analysis to identify themes relating to effects of ageing and experiences of SRH for women with CP at different points over the female life course.ResultsThe breadth of experiences in relation to the effects of ageing and access to reproductive and sexual healthcare for women with CP can be divided into three themes: (1) bodily effects of ageing; (2) lifestyle effects of ageing; (3) experiences of reproductive and sexual healthcare.ConclusionsGiving women with CP a platform to ‘speak for themselves’ in relation to effects of ageing and SRH provides health professionals with an informed knowledge base on which to draw. This might improve treatment for this growing adult patient community whose experiences have not received attention in health discourse or services. Including these experiences in public medical and social discourse can also bring a new knowledge to girls with CP about what ageing could mean for them so plans can be put in place for their future.


2020 ◽  
pp. 104973232097124
Author(s):  
Amanda Carroll ◽  
Dara Chan ◽  
Deborah Thorpe ◽  
Ilana Levin ◽  
Nancy Bagatell

Despite most children with cerebral palsy (CP) now living within typical life spans, little is known about how the effects of CP unfold across the life course and impact participation in everyday life during adulthood. In this study, we explored the experiences of 38 adults growing older with CP. Data were gathered using semi-structured interviews focused on participants’ engagement in activities in their community and analyzed using a life course perspective to deepen our understanding of the experiences of our participants. We found that individual agency, family and social contexts, as well as larger sociocultural contexts all shaped participants’ experiences as they grew older. The findings highlight the usefulness of the life course perspective for understanding how the effects of a diagnosis of CP unfold over time. Further use of this perspective can better inform health care services to meet the needs of adults with CP aging with a lifelong disability.


2010 ◽  
Vol 19 (1) ◽  
pp. 12-20 ◽  
Author(s):  
Guro Andersen ◽  
Tone R. Mjøen ◽  
Torstein Vik

Abstract This study describes the prevalence of speech problems and the use of augmentative and alternative communication (AAC) in children with cerebral palsy (CP) in Norway. Information on the communicative abilities of 564 children with CP born 1996–2003, recorded in the Norwegian CP Registry, was collected. A total of 270 children (48%) had normal speech, 90 (16%) had slightly indistinct speech, 52 (9%) had indistinct speech, 35 (6%) had very indistinct speech, 110 children (19%) had no speech, and 7 (1%) were unknown. Speech problems were most common in children with dyskinetic CP (92 %), in children with the most severe gross motor function impairments and among children being totally dependent on assistance in feeding or tube-fed children. A higher proportion of children born at term had speech problems when compared with children born before 32 weeks of gestational age 32 (p > 0.001). Among the 197 children with speech problems only, 106 (54%) used AAC in some form. Approximately 20% of children had no verbal speech, whereas ~15% had significant speech problems. Among children with either significant speech problems or no speech, only 54% used AAC in any form.


2007 ◽  
Vol 41 (10) ◽  
pp. 46
Author(s):  
ALEC HOON
Keyword(s):  

Author(s):  
Tania Zittoun ◽  
Jaan Valsiner ◽  
Dankert Vedeler ◽  
Joao Salgado ◽  
Miguel M. Goncalves ◽  
...  

Author(s):  
Andrew M Gordon ◽  
Sarah R Lewis ◽  
Ann-Christin Eliasson ◽  
Susan V Duff

Sign in / Sign up

Export Citation Format

Share Document