Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing

Authors: de Visser, R.O., Mosely, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint OBE, C., Freeman, E. and Karavidas, M.

Journal: Autism

eISSN: 1461-7005

ISSN: 1362-3613

DOI: 10.1177/13623613241290628

Abstract:

Autism can make menstruation and menopause and other aspects of reproductive and sexual health (RSH) more difficult. However, healthcare professionals (HCPs) often fail to provide autism-aware care, and often lack the skills or confidence to discuss RSH with patients. This study explored whether autistic people experience particular difficulties and have unmet needs when seeking RSH care. Online surveys consisting of forced-choice items and free-text boxes were completed by 136 autistic adults in the United Kingdom. Quantitative data were analysed using standard parametric and non-parametric tests. Qualitative data underwent thematic analysis. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH. The quantitative data and qualitative analysis revealed that respondents felt: (a) uncomfortable discussing menstrual issues, menopause and sexual wellbeing; (b) that HCPs rarely accommodate their sensory needs and communication preferences; and (c) that HCPs rarely demonstrated awareness of how autism can affect RSH. This novel study highlighted widespread unmet needs for appropriate RSH care for autistic people. Effort is required to enhance HCPs’ ability to provide autism-aware care for RSH. The findings could inform the development of resources and training to improve healthcare for autistic people. Lay abstract: Autistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people’s experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs’ knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.

https://eprints.bournemouth.ac.uk/40416/

Source: Scopus

Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing.

Authors: de Visser, R.O., Mosely, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint Obe, C., Freeman, E. and Karavidas, M.

Journal: Autism

Pages: 13623613241290628

eISSN: 1461-7005

DOI: 10.1177/13623613241290628

Abstract:

Autistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people's experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs' knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.

https://eprints.bournemouth.ac.uk/40416/

Source: PubMed

Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing

Authors: de Visser, R.O., Mosely, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint, C., Freeman, E. and Karavidas, M.

Journal: AUTISM

eISSN: 1461-7005

ISSN: 1362-3613

DOI: 10.1177/13623613241290628

https://eprints.bournemouth.ac.uk/40416/

Source: Web of Science (Lite)

Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing

Authors: De Visser, R., Moseley, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint, C., Freeman, E. and Karavidas, M.

Journal: Autism

Publisher: SAGE

eISSN: 1461-7005

ISSN: 1362-3613

https://eprints.bournemouth.ac.uk/40416/

Source: Manual

Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing.

Authors: de Visser, R.O., Mosely, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint Obe, C., Freeman, E. and Karavidas, M.

Journal: Autism : the international journal of research and practice

Pages: 13623613241290628

eISSN: 1461-7005

ISSN: 1362-3613

DOI: 10.1177/13623613241290628

Abstract:

Lay abstract

Autistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people's experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs' knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.

https://eprints.bournemouth.ac.uk/40416/

Source: Europe PubMed Central

Unmet need for autism-aware care for gynaecological, menstrual and sexual wellbeing

Authors: de Visser, R.O., Moseley, R., Gamble-Turner, J., Hull, L., Sedgewick, F., Featherstone, C., Quint, C., Freeman, E. and Karavidas, M.

Journal: Autism

Publisher: SAGE

ISSN: 1362-3613

Abstract:

Abstract Autism can make menstruation and menopause and other aspects of reproductive and sexual health (RSH) more difficult. However, healthcare professionals (HCPs) often fail to provide autism-aware care, and often lack the skills or confidence to discuss RSH with patients. This study explored whether autistic people experience particular difficulties and have unmet needs when seeking RSH care. Online surveys consisting of forced-choice items and free-text boxes were completed by 136 autistic adults in the United Kingdom. Quantitative data were analysed using standard parametric and non-parametric tests. Qualitative data underwent thematic analysis. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH. The quantitative data and qualitative analysis revealed that respondents felt: (a) uncomfortable discussing menstrual issues, menopause and sexual wellbeing; (b) that HCPs rarely accommodate their sensory needs and communication preferences; and (c) that HCPs rarely demonstrated awareness of how autism can affect RSH. This novel study highlighted widespread unmet needs for appropriate RSH care for autistic people. Effort is required to enhance HCPs’ ability to provide autism-aware care for RSH. The findings could inform the development of resources and training to improve healthcare for autistic people.

Lay abstract Autistic people often experience difficulties with healthcare, and are more likely than neurotypical people to have unmet healthcare needs. They may also be more likely to find menstruation and menopause more difficult than neurotypical women. Healthcare professionals (HCPs) often have insufficient training and support to work with autistic adults, and they often lack the skills or confidence to discuss reproductive and sexual health (RSH) with patients. When these two issues are combined, it would appear that autistic people may experience particular difficulties when seeking RSH care. The aim of this study was to explore autistic people’s experiences of healthcare related to RSH in the United Kingdom. Surveys were distributed with assistance of an autism charity, and were completed by 136 adults. The survey consisted mainly of tick-box responses, but there were also several opportunities for participants to write comments about their experiences. Respondents felt that HCPs almost never seem to know how autism affects their RSH. There was broad agreement that HCPs need to be more aware of the impact of autism on healthcare experiences in general, and the specific impacts of autism on RSH. The data provide a clear picture of unmet needs for autism-aware healthcare for RSH, but further research is required to explore HCPs’ knowledge about how autism affects RSH. Combined with our findings, such research could inform the development of resources and training to improve healthcare for autistic people.

https://eprints.bournemouth.ac.uk/40416/

Source: BURO EPrints