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Abstract

Self-care is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider. In the field of sexual and reproductive health options for self-care predominantly include ordering contraceptives online, or testing and treating genital infections outside a healthcare setting. The shift to digitally facilitated self-care consequently requires information that was previously used by clinicians to be made available to those managing their own sexual and reproductive health. This review was specifically interested in how to optimise this informational enabling environment as self-care becomes more complex. Using a realist approach to facilitate collation, analysis and synthesis of research from multiple disciplines this review sought to enable the generation of a programme theory to inform service development. The majority of research we identified studied information to support the choice to self-care and access to self-care. In contrast to established areas of self-care, for example, the management of diabetes or hypertension, studies of the self-care process in sexual and reproductive health are lacking. There is significant potential to expand digital information resources to support sexual and reproductive health self-care, however, there are currently significant unmet informational needs. This review proposes six key recommendations for providers and key stakeholders involved with sexual and reproductive healthcare for the improvement of digital self-care services.

Keywords

Sexual health medicine eHealth general digital health prevention disease systematic reviews studies

Background

The World Health Organisation (WHO) describes self-care as the ability of individuals, families and communities to promote health, prevent disease, maintain health, and cope with illness and disability with or without the support of a healthcare provider.¹ Self-care has always been essential for health management, but the recent expansion of access to medical technologies at home has increased self-care options.¹ Self-care options are now often provided by digital services so that self-care and online services have become linked.^2–4 Sexual and reproductive health (SRH) care has been an important area for innovation in the self-care field. Specific innovations in SRH self-care include contraception provision,⁴ fertility regulation (e.g. pregnancy testing),⁵ self-managed abortion,⁶ sexual health testing,^3,7 and the alleviation of menopause symptoms.⁸ The shift to self-care within the SRH field has been attributed to the need for greater privacy and stigma reduction.⁹ Self-care in SRH can be categorised as self-management (e.g. self-medication), or self-testing (e.g. self-sampling, self-screening) and self-awareness.⁹

Digital services increase both access and convenience,^3,4 but also transfer work from clinicians to service users, with users taking on new self-care roles.² The transfer of roles has been described as a new ‘burden of treatment’,¹⁰ which necessitates additional health information to be provided,¹¹ for example, ordering a contraceptive pill online may involve choosing a type of pill or uploading a blood pressure reading.¹² The shift to digitally facilitated self-care consequently requires information that was previously used by clinicians to be made available to those managing their own SRH. The provision of this information in accessible formats is part of an ‘enabling environment’ required to support self-care.¹ Our review focused on studies of online clinical services that sought to facilitate self-care through: the provision of contraceptives, the testing of sexually transmitted infections, the provision of information regarding pregnancy and the provision of information regarding the menopause. We were specifically interested in how to optimise this informational enabling environment as self-care becomes more complex. We deliberately excluded studies on abortion because we are currently considering this literature in a separate review examining home medical abortion¹ (see footnotes: https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=225307).

Online medical information is commonly used for self-management,^13–15 with people obtaining information about chronic conditions through online health information searches, user forums or social media.¹⁶ Our review acknowledges the pre-existing evidence base regarding online access to medical information, however, our specific aim was to explore the information which enables individuals to take on new self-care roles by using technologies made available through digital services. Information required in this context has specific characteristics; the amount of technical and clinical content is high and it aims to support specific practical tasks. Given these factors we anticipated specific challenges may arise in the provision of information to support SRH self-care. Figure 1 shows an example of the type of SRH self-care information that we believe is required for online sexual health testing.

Figure 1.

Example of the information required for online sexual health testing.

In order to inform the development of information resources to support SRH self-care, we reviewed the literature to understand best practice in this field.

Review methodology

We used a realist approach to facilitate collation, analysis and synthesis of research from multiple disciplines that were relevant to our enquiry, and to enable the generation of a programme theory to inform service development. Realist methodologies facilitate an interpretive, theory-driven approach to data analysis from multiple literature sources. The realist approach seeks to provide causal explanations for how and why contexts can influence outcomes.^17,18 Our specific realist objective was to understand how information supports SRH self-care for whom, under what circumstances and why, therefore enabling us to provide a number of key recommendations for improved practice. Our aim was to surface research that might help to understand the needs of different users of information to support self-care. The realist methodology facilitates an understanding of the needs of different populations, for example, the needs of women and girls, men and boys, children, LGBTI + people, older men and women or people living with disabilities. To provide accountability and avoid duplication we registered our review on Prospero (https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=226814).

Methods

We followed established realist protocols to conduct our research.^19,20 We undertook the following steps:

Step 1: location of existing theories

We began the research process with an initial programme theory that identified specific points within the SRH self-management pathway where information might be required (Figure 2). We built our programme theory based upon the informational needs of users accessing online services identified from our prior work surrounding digital SRH service provision.^2,4,12,21,22 We built upon our initial observations and developed questions that were relevant to a broad range of self-care technologies in SRH care (see Figure 2).

Figure 2.

Initial programme theory: improving access to information at each stage of a user's digital self-care journey may improve satisfaction and clinical outcomes.

Step 2: searching for evidence and document selection

We defined our search terms (see Appendix 1) and completed searches within Scopus, PubMed and Web of Science. Our searches focused on five subject areas to ensure the identification of relevant literature within the SRH self-care field. We searched the following broad topics: sexual health, sexually transmitted infections and diseases (STIs/STDs), contraception, menopause and pregnancy.

Step 3: data extraction

Our analysis sought to surface mechanisms through which people access and utilise clinical information to support self-care and to identify contexts that may alter these mechanisms leading to different outcomes. We expressed this analysis in the form of context-mechanism-outcome configurations (CMOc). Analysis was completed using Nvivo 12. Analysis focused on how an intervention is supposed to work, its success and its limitations with the aim of refining our initial programme theory.

Step 4: data synthesis and step 5: refining programme theory

As our CMOc configurations evolved we iteratively developed our programme theory in response. This enabled us to make recommendations on the provision of online information to support SRH self-care (Figure 3).

Figure 3.

Overview of approach (in accordance with established protocols) (20, p.3).

Results

The initial search identified 11,986 potentially relevant results. Using automation tools available within each database, we removed papers published before the year 2000, those not written in English, those that were not within our subject area or from a relevant journal (i.e. agricultural or veterinary studies), and those which were incomplete leaving. 2,150 potentially relevant documents. These studies were amalgamated into a single Excel database for manageability and duplicate papers were removed. We screened these articles for relevance to our review question based on their titles and abstracts, and as a result a further 2,008 additional studies were excluded. Working together iteratively, we assessed 142 full text articles. During this process we determined the relevance, reliability and applicability of each paper as follows:

Relevance: Was the data within the document relevant for theory development?

Reliability: Was the data sufficient and trustworthy enough to support particular claims regarding the research questions?

Applicability: Could the data be interpreted within the realist formula?

In addition, because we identified few studies through our initial searches, we also hand searched journals that might contain information about SRH self-care (e.g. BMJ Sexual and Reproductive Health Care, Contraception, Current Opinion in Obstetrics and Gynaecology). This process identified eight additional documents that were not identified in our database searches. Throughout the research process references identified from within the literature were further examined and included for analysis where applicable. Overall, 25 articles fulfilled all of our criteria for inclusion (Figure 4).

Figure 4.

Prisma diagram of the search process.

Our analysis identified eight relevant CMOc configurations. Our CMOc configurations were linked to four main themes: information searching, finding services, presenting information and improving self-care practice. Table 1 summarises the CMOc configurations which together form the basis for the revised programme theory, with examples from the citations that provide the evidence for each element of the improved programme theory.

Table 1.

CMOc summary.

Observation 1: Digital SRH information services do not acknowledge the limited skills and resources young people have for accessing and understanding online self-care information
CMO 1 summary: Young peoples’ search methods for sexual health information may return irrelevant material (c), and they are likely to stop searching (o), because they are frustrated or have limited tolerance for in-depth systematic searching (m).	CMO explanation: Young peoples’ search methods for sexual health information may return irrelevant or inaccurate material (c) and they are likely to stop searching and not seek online SRH information/advice (o), because they are frustrated by the complexity of information or have a limited tolerance for in-depth systematic searching, particularly when they are required to filter through pages of results that are likely to be search engine optimised, commercially linked, or not displayed on the first page of a search engine list (m).	Supporting literature: Holstrom,²³ Roberto et al.²⁴ Jackson et al.²⁵ Gannon et al.²⁶ Bailey et al.²⁷ Patterson et al.²⁸	Improved programme theory: Clinically assured information to support self-care that is optimised to appear on the first page of a search engine's results', is presented using simple language, and is clearly signposted within organisational websites and recommended by health services and schools will be more accessible to young people and therefore improve their experience and clinical outcomes.
Observation 2: Young people struggle to determine whether or not SRH information services are trustworthy
CMO 2 summary: Young people who find conflicting sexual health information online from different sources (c) are less likely to engage with self-care (o) because they are confused by the trustworthiness/ legitimacy of the service (m).	CMO explanation: Young people who find conflicting sexual health information online from different sources (c) are less likely to act on or perceive this information to be reliable (o) because of difficulty interpreting signs of authenticity (m).	Supporting literature: Holstrom,²³ Roberto et al.²⁴ Jackson et al.²⁵ Gannon et al.²⁶ Bailey et al.²⁷ Patterson et al.²⁸	Improved programme theory: Information to support self-care that is visibly linked to locally relevant trusted health services (online or clinic based) is trusted by young people and would improve user experience, service engagement and clinical outcomes.
Observation 3: The use of self-care technologies is dependent upon awareness and knowledge, services which signpost to offline assistance can improve individual self-care
CMO 3 summary: Some men who have sex with men (MSM) have an increased risk of HIV transmission due to a lack of knowledge about, and access to, self-care technology (c) however, use of pre-exposure prophylaxis (PrEP) for HIV can be increased amongst high-risk groups (o) when digital information on how to access self-care is provided (m).	CMO explanation: Some MSM have an increased risk of HIV transmission due to a lack of knowledge about and access to self-care technology (c), however, HIV transmission risk can be reduced amongst these high-risk groups (o) when new self-care focused digital services provide anonymous webchat options and a linkage to local offline services which provide self-care technology (m).	Supporting literature: Weber et al.²⁹ Sharpe and Kamara,³⁰ Chiasson.³¹	Improved programme theory: Accurate clinical self-care information, targeted at service users who lack knowledge of local health systems and as part of public health programmes via mobile apps and webchat, in an anonymous accessible format will improve access to services and the use of self-care technology.
Observation 4: Digital SRH information services should offer information in several formats to improve engagement and facilitate privacy
CMO 4 summary: Young people who find the content of digital SRH information services embarrassing or shameful (c) are likely to disengage with the information and stop using the service (o) especially when the information contains visual or audible content that is overwhelming or antagonistic to their beliefs (m).	CMO explanation: Young people who find the content of digital SRH services irrelevant/ insensitive (c) are likely to disengage with the service, due to embarrassment and shame (o) especially when the service is overtly graphic or sexualised i.e. when there is in-depth video or audio information, which could be mistaken for pornography (m).	Supporting literature: Patterson et al.²⁸ Gkatzidou et al.³² Meshiriakova and Tebb,³³Kalke,³⁴ Jakob et al.³⁵	Improved programme theory: Services that provide clinical self-care information for young people in a variety of formats including an option for text only content will improve user experience and broaden user engagement, particularly for those who are concerned about unexpectedly accessing sexually explicit content.
Observation 5: Anonymity is essential when digital SRH information is delivered in an interactive format
CMO 5 summary: Young people in rural areas and existing users of sexual health services are concerned that they can be identified through their online interactions whilst obtaining information for self-care (c) and are unlikely to engage with a service to seek information (o) unless a service offers options for anonymous use and interaction such as webchat (m).	CMO explanation: Young people in rural areas and existing users of sexual health services value online information however, they fear identification from a known clinician (c) and are unlikely to engage with a service to seek information (o) unless a service offers options for anonymous use to prevent identification (m).	Supporting literature: Garret et al.³⁶	Improved programme theory: Services that provide clinical self-care information and prioritise the anonymity of service users, without requirements for registration and with options for anonymous interaction such as webchat, will improve user experience and encourage access to treatment/ advice. This is particularly important in rural areas and areas with small populations where a user is likely to know the clinician, and may be deterred from accessing a service.
Observation 6: Health care professionals require training in digital SRH services
CMO 6 summary: Health care professionals and health care organisations do not trust digital providers of self-care information (c) and are unlikely to utilise them during treatment (o) unless they are trained to use them and the content of the digital service aligns with their clinical practice guidance (m).	CMO explanation: Health care professionals and health care organisations do not trust digital SRH interventions to support self-care (c) and are unlikely to utilise them during treatment (o) unless they can be confident of the information's suitability and safety through training and an alignment of content (m).	Supporting literature: Logie et al.³⁷	Improved programme theory: Clinicians are more likely to recommend digital services when they feel confident in their own ability to assess them and are adequately informed about the safety of content. In order to increase user access to online information for self-care SRH clinicians require training on how to assess digital interventions, and when to appropriately recommend them to patients.
Observation 7: Digital apps that contain information to support self-care contain content that lacks consistency and poses a risk to the user
CMO 7 summary: Users who value SRH information on menopause, pregnancy and STIs in app format (c) are at risk of harm through misinformation (o) due to inconsistencies and variations in app content (m).	CMO explanation: Users who value SRH information on menopause, pregnancy and STIs in app format (which is becoming increasingly common) (c) are at risk of harm through misinformation (o) due to inconsistencies and variations in app content. There is a marked variation in content, quality and accuracy of available information, with contradictory medical advice present, which may harm the user through inconsistent dietary information, a lack of referenced or verifiable information (m).	Supporting literature: Gibbs et al.³⁸ O’Donnell et al.³⁹ Womack et al.⁴⁰ Gkrozou et al.⁴¹ Mangone et al.⁴²	Improved programme theory: Pregnant women, those seeking information on the menopause, and those wanting to learn of STIs through mobile apps risk accessing clinically inaccurate material and potentially being harmed, due to a lack of regulation and contradictory advice. Unless apps are assessed and recommended by clinicians it is unlikely that these individuals will be adequately equipped to manage their SRH needs.
Observation 8: High quality, interactive, web-based information about contraception that is linked to clinical services positively impacts clinical contraceptive outcomes
CMO 8 summary: Older women (aged 40–55) and teenagers (under 18 years) in the UK and the US who use an interactive website (affiliated with an offline service) designed to improve contraceptive knowledge (c), increase the uptake of long-acting reversible methods of contraception or reduce chances of pregnancy and have similar contraceptive knowledge levels and pregnancy rates beyond three months post intervention (o) in comparison with clinician delivered contraceptive information (m).	CMO explanation: Evidence has suggested differences in contraceptive knowledge or clinical outcomes exist when a service is delivered online. However, evidence also suggests interactive websites (which are associated with an official offline service) improve contraceptive knowledge and decision making for individuals (c) and users of these services have similar contraceptive knowledge levels or pregnancy rates beyond three months post intervention (o) when compared to those who’ve undertaken face to face clinical education (m).	Supporting literature: Stephenson et al.⁴³ Shneyderman and Schwartz⁴⁴ Sridhar et al.⁴⁵ Swartz et al.⁴⁶ Gilliam et al.⁴⁷ Dewart et al.⁴⁸	Improved programme theory: Interactive, online contraceptive information may have similar clinical outcomes in comparison to clinician delivered contraceptive advice, therefore justifying the delivery of digital services for some users seeking to manage their own SRH self-care.

Overall CMOc based themes for improved practice

Theme 1: information searching

Theme one draws on CMO configurations 1,2,6,7. Young people who seek clinical self-management information online are presented with information filtered through search engine algorithms or organisational content management systems, but typically rely on top search results and struggle to assess whether sites are trustworthy.²³ Search engine optimisation by commercial organisations may be designed to promote transactional sites above public information sites, and mobile apps may contain inaccurate information.²³ Recommendations by clinicians are desired but clinicians lack confidence and training to safely recommend online information sites to enable a user's self-management.³⁷ Where access to self-care information is not facilitated by service providers, users are left to navigate overabundant content with very little support.²⁸ The separation of digital SRH information and trusted online/offline services is a missed opportunity to create an enabling environment for self-care.

Theme 2: finding services

Theme two draws on CMO configurations 3,5,2. Users value signposting to services that facilitate self-care (either online services or offline clinics). The information services referenced in CMO configuration 3 were highly valued by MSM, because they provided a combination of general information about PrEP and practical advice about accessing local testing, prevention and advice services.^29–31 CMO configurations 5 and 2 highlight how young people value the linkage between online information and trusted health care organisations; particularly the opportunity for anonymous interaction with clinicians before visiting a service.³⁶ Those using clinic-based services want information on self-care provided anonymously by a health care professional that supplements their face-to-face care.^29,36 Overall, the literature suggests that the relationship between online information and offline services is important in terms of maintaining credibility, ensuring trustworthiness and increasing audience access. Services which accommodate these trust-generating factors are highly valued and are supportive to a user's self-care journey.

Theme 3: presenting information

This theme draws on CMO 4. The literature suggests that young people generally find visual and auditory information engaging in comparison to text-based information, however, visual/ audible information may compromise confidentiality and cause embarrassment for some individuals.^28,32–35 Young users are concerned about viewing or being seen to view information which may be perceived as sexually explicit by their peers or family.^28,32 These concerns have a broad basis in personal, religious or cultural beliefs.^28,32 A discreet option such as text-only information should be available within a digital service, to reduce the risk of embarrassment or shame, therefore enabling individuals from a range of cultural backgrounds/belief systems to access SRH self-care information.

Theme 4: improving self-care practice

This theme draws on CMO 8 and shows that interactive online contraceptive information may have similar clinical outcomes to clinician delivered contraceptive counselling in offline contexts. The long-term impact upon a user's knowledge from digitally delivered SRH education is similar to information delivered in person, suggesting that this approach has value in supporting self-care and SRH knowledge.^43,45–48 It is therefore necessary that misconceptions regarding digital SRH service delivery are further researched, and the positive impacts of online education highlighted. The positive impact of digital health care should be recognised and utilised by health care services and clinicians to support a broader audience of users to improve their self-care journey.

Improved programme theory

From the CMO configurations within these themes we modified our programme theory as shown in Figure 5.

Figure 5.

Improved programme theory.

Discussion and CMOc based recommendations

This review aimed to develop our initial programme theory ‘What information supports whom to effectively access and use self-care technologies in what circumstances and why?’ Our review found limited information to develop our theory.

The majority of research that we identified studied information to support the choice to self-care and access to self-care. In contrast to established areas of self-care, for example, the management of diabetes or hypertension, studies of the self-care process in SRH are lacking. Comprehensive information regarding conditions, sophisticated digital monitoring tools, personalised educational interventions and customised coaching are widely available for the management of diabetes and hypertension;⁴⁹ but are not available for SRH. Self-care in diabetes or hypertension is often clinician initiated, is considered an essential element of treatment, and training and support is usually provided.⁵⁰ In SRH, self-care is usually initiated by users and is less integrated into clinical care, for example, the decision to take a sexual health test or switch contraceptive method is often made by the user with little training provided.

Our review suggests that despite the recent expansion of digitally facilitated self-care technologies in SRH, interactive digital information to support self-care remains limited. Online interventions are becoming more routine and there is significant potential to expand digital information resources to support SRH self-care. There are currently unmet informational needs, for example, understanding the ‘window’ period for STI testing, choosing the most appropriate form of emergency contraception, interpreting test results, understanding treatment dosing and understanding timing for PrEP. Tools to support these self-care strategies are gradually becoming available, however, there has been little evaluation of usability or the measurement of sexual health outcomes. Our review suggests that SRH providers and key stakeholders within SRH have an important role to play in improving the experience of SRH self-care by providing more appropriate information. Based upon this realist review, we suggest the following key improvements should be undertaken to improve online clinical information for user self-care:

Sexual health services should provide or link to high quality, interactive sexual health self-care information that is endorsed by trusted services.

Providers should recognise that interactive digital information appears to be as effective at supporting contraceptive decision making as clinician delivered information, and has an especially important role in the provision of digital contraceptive services.

Sexual health services should support young people to find information online through search engine optimisation and clear signposting within organisational websites.

Sexual health services should train clinicians on how to assess the value of external sites and encourage them to recommend those assessed as high quality.

Information only sites should include an option to find local services which have the capacity to enable the user to anonymously speak with a clinician without the need for registration.

Self-care information should be provided in a variety of media that includes a text only format to protect confidentiality and reassure those who are concerned about inadvertently finding sexually explicit material.

Limitations of review

This area of SRH information provision to support self-care is currently under researched. The research gaps include a lack of evidence on the information needs of those from older age groups, religious/ethnic minorities, LGBTQI + communities and individuals with disabilities. In addition, whilst the realist approach offers strategies to interpret the existing evidence to inform practice and policy, and our review used these established research protocols, the limited evidence available means that our conclusions are limited.

Footnotes

Acknowledgements

There are no acknowledgements required for this study.

Conflict of interest

The authors have no conflicts of interest to declare.

Contributorship

TC and PB contributed equally to this article.

Ethical approval

Ethical approval was not required for this review.

Funding

This research was self-funded.

Guarantor

Dr Tom Courtenay.

ORCID iD

Thomas Courtenay

Notes

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Improving online clinical sexual and reproductive health information to support self-care: A realist review

Abstract

Keywords

Background

Review methodology

Methods

Step 1: location of existing theories

Step 2: searching for evidence and document selection

Step 3: data extraction

Step 4: data synthesis and step 5: refining programme theory

Results

Overall CMOc based themes for improved practice

Theme 1: information searching

Theme 2: finding services

Theme 3: presenting information

Theme 4: improving self-care practice

Improved programme theory

Discussion and CMOc based recommendations

Limitations of review

Footnotes

Acknowledgements

Conflict of interest

Contributorship

Ethical approval

Funding

Guarantor

ORCID iD

Notes

References