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Abstract
Background The sexual and reproductive needs of people with disabilities are often unmet. Healthcare professionals play an important role in meeting these needs.
Objective To explore the views of healthcare professionals on their confidence and competence in providing sexual and reproductive healthcare to people with disabilities.
Methodology Two databases were searched yielding 14 studies included in the review. Studies detailing healthcare professionals’ experiences working in the subject area were included alongside results and evaluations of staff training/workshops within the area. Search results were screened for eligibility by the first and second authors and any discrepancies were resolved by the third author. All subsequent stages were carried out by the first author and reviewed by the second and third authors.
Results The study's findings indicate that there is a lack of training, guidelines, patient contact, time, teamwork and collaboration between staff, and a lack of awareness/access to resources within this area. Evaluations of training programmes/workshops showed an increase in knowledge, comfort and skills surrounding the subject. Continuous training would be beneficial to ensure these are maintained at a high level.
Conclusions Overall healthcare professionals felt they lack confidence and competence in providing sexual and reproductive healthcare to people with disabilities. Further research in this area is recommended to assess this in more depth. Development of guidelines, multidisciplinary training programmes and further resources for both staff and patients are recommended.
- sexual health
- reproductive health
- professional-patient relations
- qualitative research
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Key messages
The sexual and reproductive health needs of people with disabilities are often unmet.
Staff did not feel confident and competent in providing sexual and reproductive healthcare to people with disabilities.
Training programmes and workshops within the area showed an increase in knowledge, comfort and skills surrounding the subject.
Background
The World Health Organization (WHO) estimates that over 1 billion people globally live with disabilities.1 A person is considered to have a disability if they have a “physical or mental impairment and the impairment has substantial and long-term adverse effect on their ability to carry out normal day-to-day activities”.2
Sexual and reproductive health (SRH) is a vital part of a person’s overall health, quality of life and well-being,3 and requires a “positive and respectful approach to sexuality and sexual relationships”.4
People with disabilities (PwD) are entitled to sexual and reproductive healthcare (SRHC) and have the same rights as people without disabilities.5 Despite this, PwD have often been overlooked in this healthcare sector, due to the assumption that they are asexual.6 ,7 Studies have reported that young PwD and young people without a disability are equally likely to be sexually active8 and more likely to become infected with sexually transmitted infections (STIs),9 highlighting their need for SRHC and education. However, these needs are largely unmet. For example, women with learning disabilities (WwLD) are less likely to receive suitable information on contraception.10 PwD struggle to receive basic knowledge on the subject, leaving them in the dark about their SRH.9
Healthcare professionals (HCPs) play a fundamental role in SRH and education, often serving as the first port of call for PwD. Research suggests that HCPs feel unprepared in addressing the SRH concerns of patients or think that it is not their responsibility.11 Ensuring HCPs have adequate training that allows them to feel comfortable in addressing the SRH concerns of PwD is paramount for patient satisfaction and meeting their needs.
Review question
This scoping review aimed to explore the views of HCPs on their confidence and competence in providing SRHC to PwD. This was done by examining the experiences of HCPs in working with PwD regarding their SRH. Results of staff training programmes and workshops were analysed to assess if they had an impact on staff confidence and competence.
Methods
This scoping review was carried out using the Joanna Briggs Institute (JBI) approach for scoping reviews.12 This approach was used to integrate mixed methods to facilitate data synthesis. The review is reported in line with the PRISMA reporting guidelines for scoping reviews (Appendix 1)13 . Registration of the study protocol with PROSPERO was not completed as the website advised that a student dissertation should not be submitted (online supplemental table S1). Contact with PROSPERO was made after dissertation completion; however, it was advised that retrospective submission of the study protocol was also not permitted.
Supplemental material
Search strategy
In January 2020, multiple search terms were used to search for relevant papers on two electronic databases: Pubmed and Scopus. Using more than one database was done to make the search more comprehensive. Search terms utilised were related to the topics of disability, HCPs and SRH (online supplemental table S2). A language filter was applied for papers available in ‘English’ (the first language of all three authors); this was applied due to time constraints and no additional resources were available for translation of studies. The reference lists of all fully assessed studies and papers which cited these studies were screened for additional studies.
Supplemental material
Study eligibility
The title and abstract of all articles returned by the search strategies were screened by two authors (LEC and ZEC) for relevance and duplicates. Sources for which full text was not available were excluded; hard copies were not requested due to time constraints. All remaining articles were read in full, and inclusion and exclusion criteria were applied (online supplemental table S3). As an example, papers concerning the experiences of PwD surrounding their SRH were excluded. Disagreement about inclusion verdict was resolved by the third author (JB). The following stages were carried out by the first author (LEC) and reviewed by the second and third authors (ZEC and JB).
Supplemental material
Assessing methodological quality
The Mixed Methods Appraisal Tool14 (MMAT) was used to assess data methodological quality. Due to the nature of this tool, grading of papers is not advised by the developers as some papers could still be deemed low quality despite meeting all the criteria.
Data extraction
Data from included papers were extracted independently and stored in an Excel file. The extracted data included information regarding author(s), publication date, country, methodology and population characteristics (table 1).
Study characteristics
Data transformation
Both qualitative and quantitative data were retrieved, and these data were integrated to facilitate data synthesis. Quantitative data (including quantitative data from mixed-method studies) were ‘qualitised’ which involved the transformation of quantitative results into textual information.14
Data synthesis
Following the transformation of quantitative data into ‘qualitised’ data, the data were integrated. Next, the data were assembled into categories with similar meaning in the form of themes.
Results
Study inclusion
Database searching yielded 1073 papers, with an additional 28 papers found via other sources. Following electronic and manual duplicate removal, 987 papers remained. Following title and abstract screening, 27 papers were identified; however, five papers did not have full texts available and were excluded. The remaining 22 papers were assessed for eligibility; 14 of these were included within the review. This process is shown using the PRISMA Flow Diagram15 (figure 1). Of these included studies, six papers were qualitative conducting semi-structured individual or group interviews, four reported quantitative results of surveys, three reported quantitative results from surveys and qualitative results from interviews, and the final study was a cross-sectional study.
Adapted from the PRISMA Flow Diagram15: details number of results at each stage of the study selection process following literature searching. PwD, people with disabilities.
Methodological quality
Methodological quality assessment was carried out using the MMAT (online supplemental table S4).14 All studies reporting solely qualitative data (n=6) performed well, adhering to all the criteria. Studies reporting quantitative results from surveys (n=4) were variable in their adherence to the criteria, with a similar pattern of criteria not being met. For example, the non-response bias of all studies was high, and the low response rate meant results were not representative of the target population. The cross-sectional study did not have complete outcome data due to a high drop-off rate between follow-up evaluations, and intergroup discussion could not be ruled out, but all other criteria were met. All mixed-methods studies (n=3) included qualitative components and performed well in this area. Results in other areas of these studies were more variable in their accordance with the tool.
Supplemental material
Integrated finding 1: experiences of HCPS
Of the included studies, nine discussed experiences of HCPs working with PwD with regards to SRH. These studies reported findings from semi-structured interviews or descriptive surveys. Several themes arose, mainly surrounding weaknesses within this area (table 2). The included studies reported findings with regards to different categories of disabilities: people with physical disabilities (PwPD) (n=3), people with intellectual disabilities (PwID) (n=3), women with learning disabilities (WwLD) (n=1), women with intellectual disabilities (WwID) (n=1) and women with disabilities (WwD) in general (n=1).
Theme coverage by nine included studies
Training
A major theme discussed was that staff felt unprepared due to a lack of or inadequate training surrounding the SRH of PwD. Staff often quoted lack of knowledge of issues PwD face regarding their SRH.16–18 One study tested staff on their knowledge of such issues with regards to PwPD and found that staff ‘generally lacked knowledge’.17 A similar study found that rehabilitation staff had ‘average’ knowledge on the subject and ‘average’ understanding of patient issues.19 A lack of communication skills in approaching the subject was also cited17 such as in a paper in which midwives discussed working with WwLD.20 A study of midwives in Zambia found they had a lack of confidence regarding aiding WwD during birth, often referring women to university hospitals.21 A common notion was that staff had not received specific training on the subject in either their studies or professional training.16 17 19 20 22 23 This resulted in staff feeling incapable of addressing the SRH concerns of their patients.16–18 20–22 On a positive note, staff were eager to receive training to develop their knowledge and skills in this area, agreeing that more programmes and resources should be made available.17 18 20 23
Guidelines
Staff also discussed the lack of policy or guidelines about providing SRHC to PwD. Staff were either unaware of any guidelines or stated that there were none.16 17 20 22 24 Any available guidelines focused on what staff were not allowed to do, which was viewed as unhelpful.22 This absence led to staff adapting their care from patient to patient, leaving them uncomfortable and fearing they were doing something wrong.22 This also led some staff to view addressing SRH as optional rather than a requirement of care.22 24
Patient contact
Another theme was a lack of experience of working with PwD. Midwives in Sweden noted that few WwID attended the clinic for contraceptive counselling, resulting in a lack of confidence discussing the subject.24 In the Philippines, poor attitudes towards PwD led to them being hidden by family members. This meant that PwD were not taken to hospital, especially regarding their SRH, leaving staff inexperienced in providing care to these patients.16
Time
Staff also reported a lack of time for discussing SRH in addition to the other medical needs of the patient and quoted time as a barrier to providing quality care.20 22 23 Staff felt they needed more time to discuss issues with WwLD or PwID due to a lack of knowledge or understanding.20 22 This sometimes led to staff actively giving their patients more consultation time by giving work to fellow staff members to provide better care.20
Teamwork
Staff also felt that there is a lack of collaboration and teamwork within this area.20 22 24 There also seems to be a lack of collaboration between different service providers such as community and hospital teams, which can lead to issues such as limited information sharing.20 22 This lack of teamwork and collaboration has resulted in staff feeling alone and unsupported, leading them to consider that a multidisciplinary approach to providing care was of utmost importance.20 24
Awareness/access to resources for PwD
The final theme discussed was a lack of awareness or access to additional services for PwD. One key area lacking is services catering specifically to WwLD, which prevented staff from meeting patient needs.20 In addition, the lack of trained sign language interpreters was noted, hindering the care of patients with hearing difficulties. Overall, lack of awareness or access to currently available resources for providing SRHC to PwD was widely experienced by HCPs.16 20 22
Integrated finding 2: training programme/workshop results
Results and evaluations of training programmes were integrated (table 3). Of the five relevant papers, four documented the change in HCPs care following training by measuring differences in knowledge, comfort, approach/skills and attitudes. Some papers also asked staff to complete a survey to evaluate the training and others carried out semi-structured interviews.
Descriptions of training programmes/workshops
Knowledge
Studies measured the change in staff knowledge levels through tests or by asking staff to rate their own levels of knowledge. Following training, tested and self-perceived levels of knowledge significantly increased in those who had taken part in the programme.25–28 This was in direct comparison to control groups, where there was no significant increase in tested or perceived knowledge.26 28 However, knowledge levels tended to decrease at follow-ups at different time points such as 3 months, 6 months and 2 years later.25 26 28 Despite this decrease, staff who participated in training had significantly higher levels of knowledge at follow-up than control groups.26 28 Additionally, one study trained control groups between two follow-up stages and found that their knowledge levels were similar to the originally trained group, with both groups having significant increases in knowledge compared with their pre-training levels.26
Comfort
In addition, staff comfort levels were measured by answering questions or by rating their comfort levels in carrying out specific tasks. Following training, all studies reported a significant increase in comfort levels25–28 compared with control groups.26 28 There was also a tendency for participant comfort levels to increase again at follow-up measurements.25 26 28 Participants described feeling more comfortable listening to patients, answering patient questions and referring patients to other colleagues following training.26 27
Approach/skills
Studies measured staff self-perceived skill levels or ‘approach’ carrying out different roles surrounding the subject. Following training, staff self-perceived skill levels significantly increased.26–28 However, levels at follow-up measurements had significantly decreased but were significantly higher than control levels.28 Staff reported taking part in a wider variety of roles following training28 and described instances where they thought about the sexual needs of patients such as when considering catheterisation.27
Attitudes
Staff attitudes were also ‘measured’, but results were inconsistent. One study found that both participant and control groups had generally liberal views at the pre-training point and did not change at both post-workshop and follow-up measurements.28 Another study found that participants became more open-minded towards the SRH of PwD, which then decreased at two follow-up measurements. In the control group, attitude levels did not change until after they had received training between follow-ups.26 Staff in the latter study also described having a more open attitude towards sexuality and now viewed it with the same importance as other specialities such as urology.
Training evaluations
In some studies, staff evaluated the training programme/workshop. Staff generally had favourable reviews with most rating them as ‘good’ or ‘excellent’ in quality.26 29 Staff reported being more aware of sexual issues for PwD28 29 and that this helped them to be more considerate of a patient’s sexual needs.27 29 Staff enjoyed the multidisciplinary approach to training as it helped build relationships between members and provide opportunities for further discussion.26 However, staff mentioned the need for continuous training as their knowledge levels decreased in the months afterwards and due to high rates of staff turnover.26
Discussion
To our knowledge, this is the first scoping review to identify and synthesise evidence on HCPs views on their confidence and competence in providing SRHC to PwD or to review staff training in this area. The low number of papers reporting this issue is in stark contrast to studies discussing the attitudes of staff, students and society towards the sexuality of PwD, for example.7 30–33 This lack of research highlights a major knowledge gap of practice in this area, and so further research would be beneficial.
Studies have shown that training in this field is either not provided or insufficient, resulting in staff having a lack of knowledge and skills and feeling incapable of providing care.16–22 It has also been shown that HCPs in non-SRH settings do not regularly engage in discussions surrounding SRH with patients regardless of whether they have a disability. Reasons included lack of training, lack of awareness about sexual issues, and concern about their knowledge and abilities.34 This highlights that training surrounding sexuality issues, in general, is lacking, but particularly regarding the SRH of PwD. Additionally, staff reported being unaware or unable to access further services and resources for PwD.16 20 22 This could be built into training to provide staff with tailored information regarding these resources. Improving training and ensuring staff are equally prepared is vital in optimising the quality of care provided to patients leading to improved health outcomes.
Staff regularly had to interpret how best to provide care due to a lack of guidelines surrounding the topic.16 17 20 22 24 This interpretation of how best to provide care means that patients may receive variable quality of care. Providing adequate guidelines for staff would give them certainty in how to provide care and improve staff confidence35 and has been shown to improve care consistency and health outcomes.36 Guidelines that improve efficiency allow funds to be diverted to other services; improving care in this sector would be of overall benefit to healthcare systems.35 36 Development of evidence-based, patient-centred guidelines for staff surrounding the SRH of PwD would, therefore, be vital in improving staff confidence and competence in this area.
Staff regularly quoted lack of time as a barrier to discussing SRH with PwD,20 23 which is commonly experienced by HCPs in many sectors.37 However, a lack of time caused particular difficulty when working with WwLD or PwID who tended to require longer consultations to ensure their understanding.20 Lack of time could be a barrier in providing staff training and may impede its full impact. Scheduling longer consultation times for PwID was highlighted as a facilitator for improving health information exchange between staff and patients, and therefore improving healthcare quality.38
Staff reportedly felt unsupported regarding care provision and that teamwork, collaboration and information sharing between staff was limited.20 22 24 Patients interact with a variety of different HCPs and so effective communication between staff is key to ensure patient information is kept updated, misinterpretation of information is avoided, and adequate care is provided.39 Effective communication has also been shown to improve staff confidence and competence, and is key to improving care quality.39 40 Furthermore, staff agreed that a multidisciplinary approach to care was needed and was a well-liked attribute of training programmes.20 24 26 Developing programmes which promote effective communication and teamwork within this area would be of great value.
Staff knowledge levels following training tended to increase immediately afterwards but slightly decreased at follow-up measurements.25–28 This result was expected due to the nature of programmes not providing continuous teaching resources. Studies have shown the necessity of providing resources to aid knowledge retention, as observed by the ‘forgetting curve’ hypothesis.41 This highlights the need for continuous training and further resources to ensure staff knowledge is maintained at a high level, otherwise training may have limited sustained impact.
Staff comfort levels tended to slightly increase at follow-up measurements.25 26 28 This is described by the Dunning–Kruger effect42 where experience increases comfort and confidence in carrying out tasks. Lack of experience in working with PwD both in general and regarding their SRH resulted in staff having little confidence in providing care.16 24 Training can be enhanced through opportunities to apply their knowledge and skills. Increasing exposure to working with PwD by encouraging patient engagement and making services fully accessible would have a positive effect on staff confidence.
Staff self-perceived skill levels tended to significantly increase following training but decreased at follow-up measurements.27 28 This could again be explained by the Dunning–Kruger effect whereby a sharp increase in confidence occurs when a little experience is gained, which then sharply decreases and gradually increases at a steady rate.42 This significant increase in staff self-perceived skill levels could mimic their sharp increase in confidence following training which mellowed in subsequent months. Providing staff with training and continuous experience in this sector is therefore important in increasing and maintaining staff skill levels in this field.
In terms of attitudes, reported effects varied. Some studies found no change in staff attitudes whereas others did.26 28 Although not as apparent as staff knowledge, attitudes of staff towards issues such as sexuality can have a great impact on the quality of care they provide. Staff who are more open-minded towards the SRH of PwD may be more likely to address these issues and more engaged in furthering their skills. Training programmes which address and promote positive attitudes with regard to this issue in addition to improving staff knowledge and skills may be beneficial. This would aid in improving staff competence in this area of healthcare and the quality of care provided by staff.
Limitations
This scoping review is limited by the low number of studies included. This could be a result of the small number of databases searched, given the time and resource constraints of a student project, but could also reflect the limited data on this subject at an international level. Results were filtered to include only English language articles, and hard copies of studies without full text available online were not requested; these factors could have contributed to the low number of studies included. Another limitation of this review was the use of the MMAT, which recommended against grading paper quality. The risk of biases was high in all studies given the study design and potential selection bias. Study participants often volunteered to do so, and therefore it may be the case that they held more positive views of the subject or were more interested in receiving training. The lack of a formalised evaluation tool to assess the impact of training limits the comparability across studies. Consequently, caution is needed when generalising these views to all HCPs.
Conclusions
Overall, from the limited number of studies in this subject area, HCPs feel they lack confidence and competence in providing SRHC to PwD. This is due to several factors including a lack of knowledge and training, lack of guidelines, lack of awareness or access to resources for PwD, lack of experience in working with PwD, lack of time to provide appropriate care, and a lack of teamwork and collaboration between staff members. All these areas should be addressed to improve staff confidence and competence so as to increase care quality within this sector. In particular, adequate guidelines should be developed, and continuous staff training is recommended due to high staff turnover and to ensure staff knowledge and skills remain up to date.
Further research in this area should aim to assess care provision within this sector in different healthcare boards. Training programmes should then be developed and evaluated. They should aim to improve staff knowledge, comfort, skills and attitudes, with an emphasis on teamwork to improve staff confidence and competence within this area.
Ensuring staff are confident and competent in providing such care is key to improving services, increasing patient engagement, and promoting SRH outcomes overall. Good quality SRHC is a basic human right and PwD should not be excluded from this.
Ethics statements
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References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors LEC planned and carried out this review as part of her student dissertation project assignment. She took part in all stages from planning to submission. ZEC helped to plan this review, screened the results returned by the search strategy and reviewed the rest of the work carried out by LEC. ZEC is the guarantor. JB resolved discrepancies during the screening of results returned by the search strategy. She also reviewed the work carried out by LEC.
Funding This scoping review was conducted as an educational dissertation as part of a Bachelor of Science course at the University of Edinburgh and so a protocol was not obtained. No funding was received.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.