literature review of motivation of employees

• DOI: 10.1007/S40196-013-0028-1
• Corpus ID: 144814468

A literature review on motivation

• C. Sekhar , M. Patwardhan , R. Singh
• Published 14 November 2013
• Business, Psychology
• Global Business Perspectives

87 Citations

Predicting organizational performance from motivation in oromia seed enterprise bale branch, motivation, work experience, and teacher performance: a comparative study., the impact of a leader’s demographic and professional characteristics on employee motivation, motivational factors affecting construction labor productivity: a review, motivation and hrm factors relation to the employee loyalty, discipline, motivation, local wisdom, and work environment on performance through job satisfaction, madrasah teacher job satisfaction, how does it relate to work motivation a meta-analysis, changes in motivation that affect employee performance during the covid 19 pandemic, the role of motivation in the results of total productive maintenance, 99 references, the genos employee motivation assessment, the impact of employee learning on staff motivation in greek small firms: the employees' perspective, factors that affect hotel employees motivation the case of bodrum, organizational commitment in an intense competition environment, work motivation among malaysian public servants, exploring the relative and combined influence of mastery‐approach goals and work intrinsic motivation on employee turnover intention, motivation as a tool for effective staff productivity in the public sector: a case study of raw materials research and development council of nigeria, the influence of transformational leadership on job satisfaction, flex-time as a moderator of the job stress-work motivation relationship: a three nation investigation., what motivates employees according to over 40 years of motivation surveys, related papers.

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Employee Motivation in Contemporary Academic Literature: A Narrative Literature Review

• Articles in this Issue

Published Online : May 11, 2024

Page range: 185 - 201, received : sep 01, 2023, accepted : feb 21, 2024, doi: https://doi.org/10.2478/orga-2024-0013, keywords elton mayo , employee motivation , motivation factor , motivation theory, © 2024 petra jarkovská et al., published by sciendo, this work is licensed under the creative commons attribution-noncommercial-noderivatives 4.0 international license..

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EMPLOYEE MOTIVATION AND PRODUCTIVITY: A REVIEW OF LITERATURE AND IMPLICATIONS FOR MANAGEMENT PRACTICE

A substantial body of theory and empirical evidence exists to attest to the fact that motivation and productivity are concepts which have been subjects of immense interest among researchers and managers. The objective of this paper is to conduct a literature review and analysis on theories and empirical evidence on the relationship between employee motivation and organizational productivity with a view to drawing important lessons for managerial practice. To achieve this, the paper conducted a review of some of the key theories and empirical studies on motivation and its impact on employee productivity drawing experiences from diverse organizational settings in Nigeria and several other countries. The study revealed that there are different factors to consider in motivating employees: some monetary or financial such as pay and others are non-financial like recognition and challenging jobs. Important implications are presented for managerial practice.

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Academic Research

Emmanuel O . Olusanya

Employees are a company's livelihood. How they feel about the work they are doing and the results received from that work directly impact an organization's performance and, ultimately, its stability. An unstable organization ultimately underperforms. The study had the following objectives: to find out the motivational factors put in place by the organization to enhance performance, to find out the relationship between employee motivation and performance, and to find out the challenges that organizations face in its attempt to motivate staff. To achieve these goals, a questionnaire was designed based on the objectives. The completed questionnaires were processed and analysed using the SPSS version 20 The study used descriptive sample survey for the representation and the analysis of the findings. A sample of 100 respondents was used. The study relied on both primary data, collected through a questionnaire, and secondary data collected from journals and the internet. The result shows that 11 % of the respondents functioned as management, 29 % as senior staff, 48 % as junior staffs and the remaining 12 % were contract staff. Summary of findings shows that 99% of the respondents strongly agreed that employees are motivated through monetary rewards, 65% of the respondents agreed that receiving Recognition for Work Done Affects Employees Output, one respondent was undecided while 34% strongly agreed. Finally, 98% of the respondents strongly agreed to the notion that motivated staff have higher productivity while 2% are also in agreement. The study, therefore, recommends that management should do well by adopting on the spot praise as a medium for recognition and appreciation for hard work for promptness equal effectiveness.

sherry shinwari

This study is aimed at looking into the importance of motivation in the management of people at work, no system moves smoothly without it, and no organization achieve its objective without motivating its human resources. The study therefore is to study and come out with the effect and ways of motivating worker in organization, hence comparative study of Manufacturing firms in Nnewi, Descriptive and inferential statistics were used in the analysis of the data. Necessary literatures were reviewed. During the analysis of the data it was discovered that the goal of motivation is to cause people to put fourth their best efforts with enthusiasm and effectiveness in order to achieve and hopefully surpass organizational objective. It is evidence that workers of manufacturing firms in Nnewi are poorly motivated; hence low productivity. Findings from the research on productivity of manufacturing firm's staff are reported. Two sets of questionnaires were employed in the study. One set was administered on management staff and the other on junior staff. The study reveals that salaries paid to junior staff in the company were very below the stipulations of Nigerian National Joint Industry Council. It further shows that the junior staff is rarely promoted and the junior staff prefers financial incentives than non financial incentives. The study recommended that increase in salary via promotion; overtime allowance and holiday with pay should be used as motivational tools.

FEMI P R A I S E MOYIN

Femi Praise

MOYIN P R A I S E FEMI

One of the most important functions of management is to ensure that employee work is more satisfying and to reconcile employee motivation with organizational goals. With the diversity of current jobs, this is a dynamic challenge. What people value and enjoy is influenced by many factors, including the influence of different cultural backgrounds. This research report examines employee motivation and its impact on employee performance. The study examines some common theories of motivation that can be used in an organization to improve employee performance. The study showed that employees have their differences in terms of the concept of motivation. Various forms of theories of motivation in literature have been debated along with their applications and implications. Three questions were examined: What is motivation? What kind of motivation can best be used to increase employee performance? The results of the study show that motivation can increase or decrease employee performance. If the chosen form of motivation meets the needs of the employee, their performance increases. If, on the other hand, the chosen form of motivation does not satisfy the needs of the employee, the benefit decreases. It therefore encourages organizations to understand the motivating need of each employee to improve performance.

SAU Journal of Management and Social Sciences

Prof. Oyedokun E M M A N U E L Godwin , Modupeola Adeolu-Akande

The researchers investigated the impact of motivation on employee productivity in the Nigerian Baptist Convention, Survey research design was adopted while questionnaire was used as the questionnaire of data collection. The reliability of the research instrument was calculated and all variables have Cronbach's alpha value, ranging from 0.907 to 0.935, which achieved the minimum acceptable level of coefficient alpha above 0.70. The data collected were analysed, using the Special Package for Social Scientists (SPSS) to generate tables as well as percentages. This was done to ensure an easy and clear understanding of the work. Multiple linear regression and correlation were used to test the validity of the hypotheses to establish the link between motivation and productivity. The R-square coefficient of the variables (work environment, training and development, recognition, leadership style and workers' efficiency) was 0.999. This shows that the variables constitute 99.9% of total variance which is a high coefficient on the employment motivation (dependent variable). This shows that they have a significant impact on employee motivation at Nigerian Baptist Convention. Thus, organisations, managers and employers should take the issue of motivation seriously.

SSRN Electronic Journal

Stephen Dugguh

Employees are the most important resources in any organization. They are needed to use inputs to enhance outcomes. Low productivity in manufacturing companies in Nigeria in general may be traceable to poor employee motivation. The objective of the paper therefore is to determine how certain theories of motivation could be applied to increase productivity in Cement Manufacturing Companies in Nigeria. The paper is theoretical in nature and draws from various literatures on motivation and productivity and concludes that motivation has a link to productivity since ‘motivated employees are productive employees’. The paper further suggests that relevant motivation theories should be applied to elicit and drive employee performance and increase the level of productivity in Cement Manufacturing Companies in Nigeria.

American Journal of Business and Management

Daniel Tulu

Samuel Ajayi

ABSTRACT This study examines the relationship between Motivation and Employee productivity, using First Bank Nigeria Plc. as a case study. First Bank of Nigeria, is a Nigerian multinational bank and financial services company. It is the country’s largest financial services company serving about eight Million (8,000,000) strong customer base through over 750 nationwide branches , as well as online services, with its global reach and currently it is Nigerian's largest bank by assets. Just like any long standing big organization First Bank Plc. is faced with the problem of developing and sustaining staff engagement through motivation to achieve high employee and organization productivity and prevent low employee morale and low overall organizational performance, the paper aimed at identifying various strategies and motivational techniques that exist in the organization, determination of the best motivational techniques that bring the best out of employees and to determine ways of improving overall organizational performance through appropriate motivational approach. This study was carried out among the employees of First bank Nigeria Plc. spanning through branches and the headquarter in Lagos, Nigeria. 450 well –structured questionnaire were administered on the six (6) geopolitical zones of Nigeria where First Bank Plc is evenly represented in branches with a total of 300 questionnaires received back and passed through statistical analyses. Research questions were raised based on the research objectives and hypotheses. Chi ( ) statistical test was deployed to test the various hypotheses formulated in the study. The result showed that quality of supervision has positive effect on employee motivation to work better. It was also found that workers perception on what obtained in his organization will motivate him to greater productivity. Financial motivation involving monetary rewards have greater impact on performance and organizational productivity.

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EMPLOYEE MOTIVATION, JOB SATISFACTION, AND EMPLOYEE PERFORMANCE: A LITERATURE REVIEW

• Imam Hidayat Universitas Trisaksi, Jakarta, Indonesia
• Endi Supardi Universitas Trisaksi, Jakarta, Indonesia
• Alvis Anwar Universitas Trisaksi, Jakarta, Indonesia
• Sarfilianty Anggiani Universitas Trisaksi, Jakarta, Indonesia

The purpose of this paper is to provide a structured literature review on the constructs of employee motivation, job satisfaction, employee performance, and empirical evidence on the relationship between motivation, job satisfaction, and performance. 20 (twenty) papers published during 2017-2021 that investigates employee motivation, job satisfaction, employee performance, and the relationship between employee motivation, job satisfaction, and employee performance were reviewed. The results of the review show that employee motivation and job satisfaction have positive and significant effect on employee performance or in other word employee motivation and job satisfaction are the determinants of employee performance.

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Carvalho, A.D.C., Riana, I.G., and Soares, A.D.C. 2020. Motivation on Job Satisfaction and Employee Performance. International Research Journal of Management, IT & Social Sciences, Vol. 7 No. 5, pp. 13-23. https://doi.org/10.21744/irjmis.v7n5.960 .

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Dharma, Y. 2018. The Effect of Work Motivation on the Employee Performance with Organization Citizenship Behavior as Intervening Variable at Bank Aceh Syariah. Emerald Reach Proceedings Series, Vol. 1 pp. 7-12. https://doi.org/10.1108/978-1-78756-793-1-00065 .

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Egenius, S., Triatmanto, B., and Natsir, M. 2020. The Effect of Job Satisfaction on Employee Performance Through Loyalty at Credit Union (CU) Corporation of East Kutai District, East Kalimantan. International Journal of Multicultural and Multireligious Understanding, Vol. 7, Issue 10, pp.: 480-489.

Endang T., and Sari, E. 2019. The Effect of Motivation and Discipline on Employee Performance at the Ministry of Transportation's Directorate of Ports. Ilomata International Journal of Social Science, Vol. 1 No. 1, pp. 1-9.

Girdwichai, l., and Sriviboon, C. 2020. Employee Motivation and Performance: Do the Work Environment and the Training Matter?. Journal of Security and Sustainability Issues, Vol. 9, pp. 42-64.

Griffin, R.W., Phillips, J.M., and Gully, S.M. 2019. Organizational Behavior: Managing People and Organizations, 13th Edition. Boston: Cengage Learning, Inc

Hariati, Muis, M., and Amar, Y. 2021. The Effect of Job Motivation and Job Satisfaction on Employee Performance through Organizational Citizenship Behavior. Hasanudin Journal of Business Strategy, Volume 3 Nomor 4, pp. 93-104.

Kinicki, A. 2021. Organizational Behavior: A Practical, Problem Solving Approach, 3rd Edition. New York: McGraw-Hill Education.

Kuswati, Y. 2020. The Effect of Motivation on Employee Performance. Budapest International Research and Critics Institute-Journal Vol. 3, No 2, pp. 995-1002.

Lin, Y. 2021. A Study on the Relationship Between Project Management Competency, Job Performance and Job Motivation in e-Commerce Industry. Measuring Business Excellence, Vol. 25 No. 1. https://doi.org/10.1108/MBE-10-2020-0144 .

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Nurdiansyah, R., Mariam, S., Ameido, M.A., and Ramli, A.H. 2020. Work Motivation, Job Satisfaction, and Employee Performance. Business and Entrepreneurial Review Vol. 20, No.2, pp. 153-162.

Ouakouak, M.L., Zaitouni, M.G., and Arya, B. 2020. Ethical Leadership, Emotional Leadership, and Quitting Intentions in Public Organizations: Does Employee Motivation Play a Role?. Leadership & Organization Development Journal, Vol. 41 No. 2, pp. 257-279. https://doi.org/10.1108/LODJ-05-2019-0206 .

Pawirosumarto, S., Sarjana, P.K., and Muchtar, M. 2017. Factors Affecting Employee Performance of PT. Kiyokuni Indonesia. International Journal of Law and Management, Vol. 59 No. 4. https://doi.org/10.1108/IJLMA-03-2016-0031 .

Rita, M., Payangan, O.R., Rante, Y., Tuhumena, R., and Erari. 2018. Moderating Effect of Organizational Citizenship Behavior on the Effect of Organizational Commitment, Transformational Leadership and Work Motivation on Employee Performance. International Journal of Law and Management, Vol. 60 No. 4, pp. 953-964. https://doi.org/10.1108/IJLMA-03-2017-0026 .

Riyanto, S., Endri, E., and Herlisha, N. 2021. Effect of Work Motivation and Job Satisfaction on Employee Performance: Mediating Role of Employee Engagement. Problems and Perspectives in Management, Vol. 19, Issue 3, pp. 162-174.

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Safitri, R.D., Suratno, A., and Sulistiyani, E. 2018. The Influence of Job Satisfaction and Motivation on Employee Performance at PT Chakra Naga Furniture Jepara. Jurnal JOBS, Vol. 4, No. 1, pp. 45-55.

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A Brief Literature Review on Employee Motivation

The role of facilitating quality subordinate-superior communication at various levels effectively employing a wide range of communication channels has been praised by Shields (2007) in terms of its positive contribution in boosting employee morale. Shields (2007) stresses two specific advantages of such a practice that relate to offering employees a chance to raise their concerns and put across their points regarding various aspects of their jobs, as well as, supplying them with the feeling of engagement and appreciation.

According to Lockley (2012) offering training and development programs that effectively contributes to personal and professional growth of individuals is another effective employee motivation strategy. At the same time, Lockley (2012) warns that in order for motivational aspects of training and development initiatives to be increased, ideally they need to be devised and implemented by a third party with relevant competency and experience.

Alternative working patterns such as job-rotating, job-sharing, and flexible working have been branded as effective motivational tools by Llopis (2012). Moreover, Llopis (2012) argues that motivational aspects of alternative working patterns along with its other benefits are being appreciated by increasing numbers of organisations, however, at the same time; many organisations are left behind from benefiting from such opportunities.

An interesting viewpoint regarding the issue has been proposed by Wylie (2004), according to which members of management primarily should be able to maintain the level of their own motivation at high levels in order to engage in effective motivation of their subordinates. Accordingly, Wylie (2004) recommends managers to adopt a proactive approach in terms of engaging in self-motivation practices.

Furthermore, Wylie (2004) recommends concentrating on specific variations of intangible motivational tools such as celebrations of birthdays and other important dates with the participation of whole team

According to Thomas (2009) the main challenge of motivation in workplaces is identifying what motivates each individual employee taking into account his or her individual differences. In other words, individual differences have been specified by Thomas (2009) as the major obstruction for management in engaging in employee motivation in an effective manner.

Lockley (2012), on the other hand, addresses the same issue focusing on cross-cultural differences between employees in particular. Namely, culture can be explained as knowledge, pattern of behaviour, values, norms and traditions shared by members of a specific group (Kreitner and Cassidy, 2012), and accordingly, cross-cultural differences is perceived to be a major obstruction in the way of successful employee motivation.

This point has been explained by Lockley (2012) by insisting that certain practices such as engaging in constructive arguments and dialogues in workplace can prove to be highly motivational for the representatives of Western culture, whereas the same set of practices can prove to be counter-productive for employees from Asian countries due to vast cross-cultural differences.

Llopis (2012) draws attention to the increasing relevance of the work-life balance problem for modern employees and stresses its negative impact on the level of employee motivation. Specifically, Llopis (2012) reasons that unless employees achieve an adequate level of work-life balance in personal level, management investment on the level of employee motivation can be wasted.

This viewpoint is based on Hierarchy of Needs theoretical framework proposed by Abraham Maslow (1943), according to which there is a certain hierarchy for individual needs, and more basic human needs need to be satisfied in order for the next level needs to serve as motivators.

References 

Bruce, A. Pepitone, J.S. (1999) “Motivating Employees” McGraw-Hill International

Kreitner, R. & Cassidy, C. (2012) “Management” Cengage Learning

Llopis, G. (2012) “The Top 9 Things That Ultimately Motivate Employees to Achieve” Forbes, April 6, 2012

Lockley, M. (2012) “The Secret to Motivating a Team” The Guardian, January 6, 2012

Maslow, A.H. (1943) “The Theory of Human Motivation”  Psychological Review , 50(4)6

Shields, J. (2007) “Managing Employee Performance and Reward: Concepts, Practices, Strategies” Oxford University Press

Thomas, K.T. (2009) “Intrinsic Motivation at Work: What Really Drives Employee Engagement” 2 nd edition, Berrett-Koehler Store

Wylie, K. (2004) “Managers Get the Staff They Deserve” GRIN Verlag

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Assessing chinese hotel employee’s motivation and involvement in the context of applying loyalty programme practices in international hotel chains in china.

1. Introduction

• Examine how intrinsic motivation and extrinsic motivation relate to employee loyalty programme involvement.
• Investigate the effects of employee loyalty programme involvement on intentions to apply loyalty programme practices.
• Provide advice for hotel management on how to improve employee motivation and involvement in the context of applying loyalty programme practices.

2. Literature Review

2.1. loyalty programmes in the chinese hospitality sector, 2.2. working in the chinese hospitality sector, 2.3. employee motivation, 2.4. intrinsic motivation, 2.5. extrinsic motivation, 2.6. employee involvement, 3. methodology, 3.1. questionnaire development, 3.2. data collection, 3.3. demographics, 3.4. analytical strategy, 3.5. ethical consideration, 4.1. descriptive statistics, 4.2. hypothesis test, 5. discussions, 6. theoretical and practical implication, 7. limitation and future research, 8. conclusions, institutional review board statement, informed consent statement, data availability statement, acknowledgments, conflicts of interest.

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Moller, T.R. Assessing Chinese Hotel Employee’s Motivation and Involvement in the Context of Applying Loyalty Programme Practices in International Hotel Chains in China. Adm. Sci. 2024 , 14 , 189. https://doi.org/10.3390/admsci14090189

Moller TR. Assessing Chinese Hotel Employee’s Motivation and Involvement in the Context of Applying Loyalty Programme Practices in International Hotel Chains in China. Administrative Sciences . 2024; 14(9):189. https://doi.org/10.3390/admsci14090189

Moller, Thorsten Robert. 2024. "Assessing Chinese Hotel Employee’s Motivation and Involvement in the Context of Applying Loyalty Programme Practices in International Hotel Chains in China" Administrative Sciences 14, no. 9: 189. https://doi.org/10.3390/admsci14090189

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• Study Protocol
• Open access
• Published: 26 August 2024

Learning effect of online versus onsite education in health and medical scholarship – protocol for a cluster randomized trial

• Rie Raffing 1 ,
• Lars Konge 2 &
• Hanne Tønnesen 1  

BMC Medical Education volume  24 , Article number:  927 ( 2024 ) Cite this article

Metrics details

The disruption of health and medical education by the COVID-19 pandemic made educators question the effect of online setting on students’ learning, motivation, self-efficacy and preference. In light of the health care staff shortage online scalable education seemed relevant. Reviews on the effect of online medical education called for high quality RCTs, which are increasingly relevant with rapid technological development and widespread adaption of online learning in universities. The objective of this trial is to compare standardized and feasible outcomes of an online and an onsite setting of a research course regarding the efficacy for PhD students within health and medical sciences: Primarily on learning of research methodology and secondly on preference, motivation, self-efficacy on short term and academic achievements on long term. Based on the authors experience with conducting courses during the pandemic, the hypothesis is that student preferred onsite setting is different to online setting.

Cluster randomized trial with two parallel groups. Two PhD research training courses at the University of Copenhagen are randomized to online (Zoom) or onsite (The Parker Institute, Denmark) setting. Enrolled students are invited to participate in the study. Primary outcome is short term learning. Secondary outcomes are short term preference, motivation, self-efficacy, and long-term academic achievements. Standardized, reproducible and feasible outcomes will be measured by tailor made multiple choice questionnaires, evaluation survey, frequently used Intrinsic Motivation Inventory, Single Item Self-Efficacy Question, and Google Scholar publication data. Sample size is calculated to 20 clusters and courses are randomized by a computer random number generator. Statistical analyses will be performed blinded by an external statistical expert.

Primary outcome and secondary significant outcomes will be compared and contrasted with relevant literature. Limitations include geographical setting; bias include lack of blinding and strengths are robust assessment methods in a well-established conceptual framework. Generalizability to PhD education in other disciplines is high. Results of this study will both have implications for students and educators involved in research training courses in health and medical education and for the patients who ultimately benefits from this training.

Trial registration

Retrospectively registered at ClinicalTrials.gov: NCT05736627. SPIRIT guidelines are followed.

Peer Review reports

Medical education was utterly disrupted for two years by the COVID-19 pandemic. In the midst of rearranging courses and adapting to online platforms we, with lecturers and course managers around the globe, wondered what the conversion to online setting did to students’ learning, motivation and self-efficacy [ 1 , 2 , 3 ]. What the long-term consequences would be [ 4 ] and if scalable online medical education should play a greater role in the future [ 5 ] seemed relevant and appealing questions in a time when health care professionals are in demand. Our experience of performing research training during the pandemic was that although PhD students were grateful for courses being available, they found it difficult to concentrate related to the long screen hours. We sensed that most students preferred an onsite setting and perceived online courses a temporary and inferior necessity. The question is if this impacted their learning?

Since the common use of the internet in medical education, systematic reviews have sought to answer if there is a difference in learning effect when taught online compared to onsite. Although authors conclude that online learning may be equivalent to onsite in effect, they agree that studies are heterogeneous and small [ 6 , 7 ], with low quality of the evidence [ 8 , 9 ]. They therefore call for more robust and adequately powered high-quality RCTs to confirm their findings and suggest that students’ preferences in online learning should be investigated [ 7 , 8 , 9 ].

This uncovers two knowledge gaps: I) High-quality RCTs on online versus onsite learning in health and medical education and II) Studies on students’ preferences in online learning.

Recently solid RCTs have been performed on the topic of web-based theoretical learning of research methods among health professionals [ 10 , 11 ]. However, these studies are on asynchronous courses among medical or master students with short term outcomes.

This uncovers three additional knowledge gaps: III) Studies on synchronous online learning IV) among PhD students of health and medical education V) with long term measurement of outcomes.

The rapid technological development including artificial intelligence (AI) and widespread adaption as well as application of online learning forced by the pandemic, has made online learning well-established. It represents high resolution live synchronic settings which is available on a variety of platforms with integrated AI and options for interaction with and among students, chat and break out rooms, and exterior digital tools for teachers [ 12 , 13 , 14 ]. Thus, investigating online learning today may be quite different than before the pandemic. On one hand, it could seem plausible that this technological development would make a difference in favour of online learning which could not be found in previous reviews of the evidence. On the other hand, the personal face-to-face interaction during onsite learning may still be more beneficial for the learning process and combined with our experience of students finding it difficult to concentrate when online during the pandemic we hypothesize that outcomes of the onsite setting are different from the online setting.

To support a robust study, we design it as a cluster randomized trial. Moreover, we use the well-established and widely used Kirkpatrick’s conceptual framework for evaluating learning as a lens to assess our outcomes [ 15 ]. Thus, to fill the above-mentioned knowledge gaps, the objective of this trial is to compare a synchronous online and an in-person onsite setting of a research course regarding the efficacy for PhD students within the health and medical sciences:

Primarily on theoretical learning of research methodology and

Secondly on

◦ Preference, motivation, self-efficacy on short term

◦ Academic achievements on long term

Trial design

This study protocol covers synchronous online and in-person onsite setting of research courses testing the efficacy for PhD students. It is a two parallel arms cluster randomized trial (Fig.  1 ).

Consort flow diagram

The study measures baseline and post intervention. Baseline variables and knowledge scores are obtained at the first day of the course, post intervention measurement is obtained the last day of the course (short term) and monthly for 24 months (long term).

Randomization is stratified giving 1:1 allocation ratio of the courses. As the number of participants within each course might differ, the allocation ratio of participants in the study will not fully be equal and 1:1 balanced.

Study setting

The study site is The Parker Institute at Bispebjerg and Frederiksberg Hospital, University of Copenhagen, Denmark. From here the courses are organized and run online and onsite. The course programs and time schedules, the learning objective, the course management, the lecturers, and the delivery are identical in the two settings. The teachers use the same introductory presentations followed by training in break out groups, feed-back and discussions. For the online group, the setting is organized as meetings in the online collaboration tool Zoom® [ 16 ] using the basic available technicalities such as screen sharing, chat function for comments, and breakout rooms and other basics digital tools if preferred. The online version of the course is synchronous with live education and interaction. For the onsite group, the setting is the physical classroom at the learning facilities at the Parker Institute. Coffee and tea as well as simple sandwiches and bottles of water, which facilitate sociality, are available at the onsite setting. The participants in the online setting must get their food and drink by themselves, but online sociality is made possible by not closing down the online room during the breaks. The research methodology courses included in the study are “Practical Course in Systematic Review Technique in Clinical Research”, (see course programme in appendix 1) and “Getting started: Writing your first manuscript for publication” [ 17 ] (see course programme in appendix 2). The two courses both have 12 seats and last either three or three and a half days resulting in 2.2 and 2.6 ECTS credits, respectively. They are offered by the PhD School of the Faculty of Health and Medical Sciences, University of Copenhagen. Both courses are available and covered by the annual tuition fee for all PhD students enrolled at a Danish university.

Eligibility criteria

Inclusion criteria for participants: All PhD students enrolled on the PhD courses participate after informed consent: “Practical Course in Systematic Review Technique in Clinical Research” and “Getting started: Writing your first manuscript for publication” at the PhD School of the Faculty of Health and Medical Sciences, University of Copenhagen, Denmark.

Exclusion criteria for participants: Declining to participate and withdrawal of informed consent.

Informed consent

The PhD students at the PhD School at the Faculty of Health Sciences, University of Copenhagen participate after informed consent, taken by the daily project leader, allowing evaluation data from the course to be used after pseudo-anonymization in the project. They are informed in a welcome letter approximately three weeks prior to the course and again in the introduction the first course day. They register their consent on the first course day (Appendix 3). Declining to participate in the project does not influence their participation in the course.

Interventions

Online course settings will be compared to onsite course settings. We test if the onsite setting is different to online. Online learning is increasing but onsite learning is still the preferred educational setting in a medical context. In this case onsite learning represents “usual care”. The online course setting is meetings in Zoom using the technicalities available such as chat and breakout rooms. The onsite setting is the learning facilities, at the Parker Institute, Bispebjerg and Frederiksberg Hospital, The Capital Region, University of Copenhagen, Denmark.

The course settings are not expected to harm the participants, but should a request be made to discontinue the course or change setting this will be met, and the participant taken out of the study. Course participants are allowed to take part in relevant concomitant courses or other interventions during the trial.

Strategies to improve adherence to interventions

Course participants are motivated to complete the course irrespectively of the setting because it bears ECTS-points for their PhD education and adds to the mandatory number of ECTS-points. Thus, we expect adherence to be the same in both groups. However, we monitor their presence in the course and allocate time during class for testing the short-term outcomes ( motivation, self-efficacy, preference and learning). We encourage and, if necessary, repeatedly remind them to register with Google Scholar for our testing of the long-term outcome (academic achievement).

Outcomes are related to the Kirkpatrick model for evaluating learning (Fig.  2 ) which divides outcomes into four different levels; Reaction which includes for example motivation, self-efficacy and preferences, Learning which includes knowledge acquisition, Behaviour for practical application of skills when back at the job (not included in our outcomes), and Results for impact for end-users which includes for example academic achievements in the form of scientific articles [ 18 , 19 , 20 ].

The Kirkpatrick model

Primary outcome

The primary outcome is short term learning (Kirkpatrick level 2).

Learning is assessed by a Multiple-Choice Questionnaire (MCQ) developed prior to the RCT specifically for this setting (Appendix 4). First the lecturers of the two courses were contacted and asked to provide five multiple choice questions presented as a stem with three answer options; one correct answer and two distractors. The questions should be related to core elements of their teaching under the heading of research training. The questions were set up to test the cognition of the students at the levels of "Knows" or "Knows how" according to Miller's Pyramid of Competence and not their behaviour [ 21 ]. Six of the course lecturers responded and out of this material all the questions which covered curriculum of both courses were selected. It was tested on 10 PhD students and within the lecturer group, revised after an item analysis and English language revised. The MCQ ended up containing 25 questions. The MCQ is filled in at baseline and repeated at the end of the course. The primary outcomes based on the MCQ is estimated as the score of learning calculated as number of correct answers out of 25 after the course. A decrease of points of the MCQ in the intervention groups denotes a deterioration of learning. In the MCQ the minimum score is 0 and 25 is maximum, where 19 indicates passing the course.

Furthermore, as secondary outcome, this outcome measurement will be categorized as binary outcome to determine passed/failed of the course defined by 75% (19/25) correct answers.

The learning score will be computed on group and individual level and compared regarding continued outcomes by the Mann–Whitney test comparing the learning score of the online and onsite groups. Regarding the binomial outcome of learning (passed/failed) data will be analysed by the Fisher’s exact test on an intention-to-treat basis between the online and onsite. The results will be presented as median and range and as mean and standard deviations, for possible future use in meta-analyses.

Secondary outcomes

Motivation assessment post course: Motivation level is measured by the Intrinsic Motivation Inventory (IMI) Scale [ 22 ] (Appendix 5). The IMI items were randomized by random.org on the 4th of August 2022. It contains 12 items to be assessed by the students on a 7-point Likert scale where 1 is “Not at all true”, 4 is “Somewhat true” and 7 is “Very true”. The motivation score will be computed on group and individual level and will then be tested by the Mann–Whitney of the online and onsite group.

Self-efficacy assessment post course: Self-efficacy level is measured by a single-item measure developed and validated by Williams and Smith [ 23 ] (Appendix 6). It is assessed by the students on a scale from 1–10 where 1 is “Strongly disagree” and 10 is “Strongly agree”. The self-efficacy score will be computed on group and individual level and tested by a Mann–Whitney test to compare the self-efficacy score of the online and onsite group.

Preference assessment post course: Preference is measured as part of the general course satisfaction evaluation with the question “If you had the option to choose, which form would you prefer this course to have?” with the options “onsite form” and “online form”.

Academic achievement assessment is based on 24 monthly measurements post course of number of publications, number of citations, h-index, i10-index. This data is collected through the Google Scholar Profiles [ 24 ] of the students as this database covers most scientific journals. Associations between onsite/online and long-term academic will be examined with Kaplan Meyer and log rank test with a significance level of 0.05.

Participant timeline

Enrolment for the course at the Faculty of Health Sciences, University of Copenhagen, Denmark, becomes available when it is published in the course catalogue. In the course description the course location is “To be announced”. Approximately 3–4 weeks before the course begins, the participant list is finalized, and students receive a welcome letter containing course details, including their allocation to either the online or onsite setting. On the first day of the course, oral information is provided, and participants provide informed consent, baseline variables, and base line knowledge scores.

The last day of scheduled activities the following scores are collected, knowledge, motivation, self-efficacy, setting preference, and academic achievement. To track students' long term academic achievements, follow-ups are conducted monthly for a period of 24 months, with assessments occurring within one week of the last course day (Table  1 ).

Sample size

The power calculation is based on the main outcome, theoretical learning on short term. For the sample size determination, we considered 12 available seats for participants in each course. To achieve statistical power, we aimed for 8 clusters in both online and onsite arms (in total 16 clusters) to detect an increase in learning outcome of 20% (learning outcome increase of 5 points). We considered an intraclass correlation coefficient of 0.02, a standard deviation of 10, a power of 80%, and a two-sided alpha level of 5%. The Allocation Ratio was set at 1, implying an equal number of subjects in both online and onsite group.

Considering a dropout up to 2 students per course, equivalent to 17%, we determined that a total of 112 participants would be needed. This calculation factored in 10 clusters of 12 participants per study arm, which we deemed sufficient to assess any changes in learning outcome.

The sample size was estimated using the function n4means from the R package CRTSize [ 25 ].

Recruitment

Participants are PhD students enrolled in 10 courses of “Practical Course in Systematic Review Technique in Clinical Research” and 10 courses of “Getting started: Writing your first manuscript for publication” at the PhD School of the Faculty of Health Sciences, University of Copenhagen, Denmark.

Assignment of interventions: allocation

Randomization will be performed on course-level. The courses are randomized by a computer random number generator [ 26 ]. To get a balanced randomization per year, 2 sets with 2 unique random integers in each, taken from the 1–4 range is requested.

The setting is not included in the course catalogue of the PhD School and thus allocation to online or onsite is concealed until 3–4 weeks before course commencement when a welcome letter with course information including allocation to online or onsite setting is distributed to the students. The lecturers are also informed of the course setting at this time point. If students withdraw from the course after being informed of the setting, a letter is sent to them enquiring of the reason for withdrawal and reason is recorded (Appendix 7).

The allocation sequence is generated by a computer random number generator (random.org). The participants and the lecturers sign up for the course without knowing the course setting (online or onsite) until 3–4 weeks before the course.

Assignment of interventions: blinding

Due to the nature of the study, it is not possible to blind trial participants or lecturers. The outcomes are reported by the participants directly in an online form, thus being blinded for the outcome assessor, but not for the individual participant. The data collection for the long-term follow-up regarding academic achievements is conducted without blinding. However, the external researcher analysing the data will be blinded.

Data collection and management

Data will be collected by the project leader (Table  1 ). Baseline variables and post course knowledge, motivation, and self-efficacy are self-reported through questionnaires in SurveyXact® [ 27 ]. Academic achievements are collected through Google Scholar profiles of the participants.

Given that we are using participant assessments and evaluations for research purposes, all data collection – except for monthly follow-up of academic achievements after the course – takes place either in the immediate beginning or ending of the course and therefore we expect participant retention to be high.

Data will be downloaded from SurveyXact and stored in a locked and logged drive on a computer belonging to the Capital Region of Denmark. Only the project leader has access to the data.

This project conduct is following the Danish Data Protection Agency guidelines of the European GDPR throughout the trial. Following the end of the trial, data will be stored at the Danish National Data Archive which fulfil Danish and European guidelines for data protection and management.

Statistical methods

Data is anonymized and blinded before the analyses. Analyses are performed by a researcher not otherwise involved in the inclusion or randomization, data collection or handling. All statistical tests will be testing the null hypotheses assuming the two arms of the trial being equal based on corresponding estimates. Analysis of primary outcome on short-term learning will be started once all data has been collected for all individuals in the last included course. Analyses of long-term academic achievement will be started at end of follow-up.

Baseline characteristics including both course- and individual level information will be presented. Table 2 presents the available data on baseline.

We will use multivariate analysis for identification of the most important predictors (motivation, self-efficacy, sex, educational background, and knowledge) for best effect on short and long term. The results will be presented as risk ratio (RR) with 95% confidence interval (CI). The results will be considered significant if CI does not include the value one.

All data processing and analyses were conducted using R statistical software version 4.1.0, 2021–05-18 (R Foundation for Statistical Computing, Vienna, Austria).

If possible, all analysis will be performed for “Practical Course in Systematic Review Technique in Clinical Research” and for “Getting started: Writing your first manuscript for publication” separately.

Primary analyses will be handled with the intention-to-treat approach. The analyses will include all individuals with valid data regardless of they did attend the complete course. Missing data will be handled with multiple imputation [ 28 ] .

Upon reasonable request, public assess will be granted to protocol, datasets analysed during the current study, and statistical code Table 3 .

Oversight, monitoring, and adverse events

This project is coordinated in collaboration between the WHO CC (DEN-62) at the Parker Institute, CAMES, and the PhD School at the Faculty of Health and Medical Sciences, University of Copenhagen. The project leader runs the day-to-day support of the trial. The steering committee of the trial includes principal investigators from WHO CC (DEN-62) and CAMES and the project leader and meets approximately three times a year.

Data monitoring is done on a daily basis by the project leader and controlled by an external independent researcher.

An adverse event is “a harmful and negative outcome that happens when a patient has been provided with medical care” [ 29 ]. Since this trial does not involve patients in medical care, we do not expect adverse events. If participants decline taking part in the course after receiving the information of the course setting, information on reason for declining is sought obtained. If the reason is the setting this can be considered an unintended effect. Information of unintended effects of the online setting (the intervention) will be recorded. Participants are encouraged to contact the project leader with any response to the course in general both during and after the course.

The trial description has been sent to the Scientific Ethical Committee of the Capital Region of Denmark (VEK) (21041907), which assessed it as not necessary to notify and that it could proceed without permission from VEK according to the Danish law and regulation of scientific research. The trial is registered with the Danish Data Protection Agency (Privacy) (P-2022–158). Important protocol modification will be communicated to relevant parties as well as VEK, the Joint Regional Information Security and Clinicaltrials.gov within an as short timeframe as possible.

Dissemination plans

The results (positive, negative, or inconclusive) will be disseminated in educational, scientific, and clinical fora, in international scientific peer-reviewed journals, and clinicaltrials.gov will be updated upon completion of the trial. After scientific publication, the results will be disseminated to the public by the press, social media including the website of the hospital and other organizations – as well as internationally via WHO CC (DEN-62) at the Parker Institute and WHO Europe.

All authors will fulfil the ICMJE recommendations for authorship, and RR will be first author of the articles as a part of her PhD dissertation. Contributors who do not fulfil these recommendations will be offered acknowledgement in the article.

This cluster randomized trial investigates if an onsite setting of a research course for PhD students within the health and medical sciences is different from an online setting. The outcomes measured are learning of research methodology (primary), preference, motivation, and self-efficacy (secondary) on short term and academic achievements (secondary) on long term.

The results of this study will be discussed as follows:

Discussion of primary outcome

Primary outcome will be compared and contrasted with similar studies including recent RCTs and mixed-method studies on online and onsite research methodology courses within health and medical education [ 10 , 11 , 30 ] and for inspiration outside the field [ 31 , 32 ]: Tokalic finds similar outcomes for online and onsite, Martinic finds that the web-based educational intervention improves knowledge, Cheung concludes that the evidence is insufficient to say that the two modes have different learning outcomes, Kofoed finds online setting to have negative impact on learning and Rahimi-Ardabili presents positive self-reported student knowledge. These conflicting results will be discussed in the context of the result on the learning outcome of this study. The literature may change if more relevant studies are published.

Discussion of secondary outcomes

Secondary significant outcomes are compared and contrasted with similar studies.

Limitations, generalizability, bias and strengths

It is a limitation to this study, that an onsite curriculum for a full day is delivered identically online, as this may favour the onsite course due to screen fatigue [ 33 ]. At the same time, it is also a strength that the time schedules are similar in both settings. The offer of coffee, tea, water, and a plain sandwich in the onsite course may better facilitate the possibility for socializing. Another limitation is that the study is performed in Denmark within a specific educational culture, with institutional policies and resources which might affect the outcome and limit generalization to other geographical settings. However, international students are welcome in the class.

In educational interventions it is generally difficult to blind participants and this inherent limitation also applies to this trial [ 11 ]. Thus, the participants are not blinded to their assigned intervention, and neither are the lecturers in the courses. However, the external statistical expert will be blinded when doing the analyses.

We chose to compare in-person onsite setting with a synchronous online setting. Therefore, the online setting cannot be expected to generalize to asynchronous online setting. Asynchronous delivery has in some cases showed positive results and it might be because students could go back and forth through the modules in the interface without time limit [ 11 ].

We will report on all the outcomes defined prior to conducting the study to avoid selective reporting bias.

It is a strength of the study that it seeks to report outcomes within the 1, 2 and 4 levels of the Kirkpatrick conceptual framework, and not solely on level 1. It is also a strength that the study is cluster randomized which will reduce “infections” between the two settings and has an adequate power calculated sample size and looks for a relevant educational difference of 20% between the online and onsite setting.

Perspectives with implications for practice

The results of this study may have implications for the students for which educational setting they choose. Learning and preference results has implications for lecturers, course managers and curriculum developers which setting they should plan for the health and medical education. It may also be of inspiration for teaching and training in other disciplines. From a societal perspective it also has implications because we will know the effect and preferences of online learning in case of a future lock down.

Future research could investigate academic achievements in online and onsite research training on the long run (Kirkpatrick 4); the effect of blended learning versus online or onsite (Kirkpatrick 2); lecturers’ preferences for online and onsite setting within health and medical education (Kirkpatrick 1) and resource use in synchronous and asynchronous online learning (Kirkpatrick 5).

Trial status

This trial collected pilot data from August to September 2021 and opened for inclusion in January 2022. Completion of recruitment is expected in April 2024 and long-term follow-up in April 2026. Protocol version number 1 03.06.2022 with amendments 30.11.2023.

Availability of data and materials

The project leader will have access to the final trial dataset which will be available upon reasonable request. Exception to this is the qualitative raw data that might contain information leading to personal identification.

Abbreviations

Artificial Intelligence

Copenhagen academy for medical education and simulation

Confidence interval

Coronavirus disease

European credit transfer and accumulation system

International committee of medical journal editors

Intrinsic motivation inventory

Multiple choice questionnaire

Doctor of medicine

Masters of sciences

Randomized controlled trial

Scientific ethical committee of the Capital Region of Denmark

WHO Collaborating centre for evidence-based clinical health promotion

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Acknowledgements

We thank the students who make their evaluations available for this trial and MSc (Public Health) Mie Sylow Liljendahl for statistical support.

Open access funding provided by Copenhagen University The Parker Institute, which hosts the WHO CC (DEN-62), receives a core grant from the Oak Foundation (OCAY-18–774-OFIL). The Oak Foundation had no role in the design of the study or in the collection, analysis, and interpretation of the data or in writing the manuscript.

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RR, LK and HT have made substantial contributions to the conception and design of the work; RR to the acquisition of data, and RR, LK and HT to the interpretation of data; RR has drafted the work and RR, LK, and HT have substantively revised it AND approved the submitted version AND agreed to be personally accountable for their own contributions as well as ensuring that any questions which relates to the accuracy or integrity of the work are adequately investigated, resolved and documented.

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The Danish National Committee on Health Research Ethics has assessed the study Journal-nr.:21041907 (Date: 21–09-2021) without objections or comments. The study has been approved by The Danish Data Protection Agency Journal-nr.: P-2022–158 (Date: 04.05.2022).

All PhD students participate after informed consent. They can withdraw from the study at any time without explanations or consequences for their education. They will be offered information of the results at study completion. There are no risks for the course participants as the measurements in the course follow routine procedure and they are not affected by the follow up in Google Scholar. However, the 15 min of filling in the forms may be considered inconvenient.

The project will follow the GDPR and the Joint Regional Information Security Policy. Names and ID numbers are stored on a secure and logged server at the Capital Region Denmark to avoid risk of data leak. All outcomes are part of the routine evaluation at the courses, except the follow up for academic achievement by publications and related indexes. However, the publications are publicly available per se.

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Raffing, R., Konge, L. & Tønnesen, H. Learning effect of online versus onsite education in health and medical scholarship – protocol for a cluster randomized trial. BMC Med Educ 24 , 927 (2024). https://doi.org/10.1186/s12909-024-05915-z

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A Qualitative Systematic Review and Meta-synthesis of Mothers’ Experiences of Parenting Autistic Women and Girls

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• Published: 26 August 2024

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• Michelle Oliver   ORCID: orcid.org/0000-0003-1317-3317 1 , 2 ,
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• Karri Gillespie-Smith   ORCID: orcid.org/0000-0002-3059-7632 1  

This review systematically explores qualitative evidence of the lived experience of mothers’ parenting autistic women and girls. A SPIDER search strategy was conducted on five databases and in the grey literature. Backward, forward and relevant journal scanning was also carried out. Twenty-two qualitative or mixed-method studies were included and quality appraised using CASP, encompassing over 150 mothers. A thematic synthesis highlighted five super-ordinate themes; ‘ The diagnosis process and getting support ’, ‘ Mother’s role as all consuming ’, ‘ Experiences of family wellbeing ’, ‘ Mother as an expert observer ’ and ‘ The hopes and fears of mothers ’. The review highlights areas of motivation to socialise, masking and menstruation needs as key differences in the autistic female presentation from a mothers’ perspective. Implications for practice are discussed.

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Autism is a neurodevelopmental difference that encompasses challenges in “social communication, social interaction” alongside “restricted, repetitive patterns of behaviour, interests or activities” (RRBIs; American Psychiatric Association, 2013 , p. 31). Numbers of diagnoses have increased exponentially over the recent decades; partly due to better identification and diagnosis (Fombonne et al., 2021 , 2022 ). Currently, global prevalence of Autism is said to be approximately 1%, with a female to male ratio of 1:4 (Baio et al., 2018 ; Zeidan et al., 2022 ). Generally, females have a higher average age of diagnosis (Russell et al., 2022 ). A possible reason for this is that females are under-diagnosed (Gould, 2017 ; Hull & Mandy, 2017 ; Kreiser & White, 2014 ; Lockwood Estrin et al., 2021 ; Rivet & Matson, 2011 ).

Much research in the early years had been focused upon the male conceptualisation of autism (e.g. the ‘Extreme Male brain’ theory; Baron-Cohen, 2002 ) and diagnostic tools were designed with this male presentation in mind. We are now beginning to understand that these tools may lack the sensitivity to identify autism in females to the same degree (Duvekot et al., 2016 ). New research suggests that there are qualitative differences in the phenomenological experiences of autistic females (e.g. societal gender expectations, distinctly higher levels of camouflaging, differences in RRBIs and increased internalised distress), which may warrant gender-specific diagnostic tools to support more refined recognition (Cook et al., 2021 ; Hull & Mandy, 2017 ; Kreiser & White, 2014 ; Rivet & Matson, 2011 ). Females appear to need to show more severe symptoms than males to be given a diagnosis (Zeidan et al., 2022 ), and at times females are given alternative diagnoses, only to be altered to autism in later life (Hull & Mandy, 2017 ). Despite this, UK-based diagnosis rates are exponentially increasing with increased female diagnosis’ being partly responsible for this; giving support to the idea that under-diagnosis may play a role in gender ratios of autism (Russell et al., 2022 ). According to National Institute for Health and Care Excellence ([NICE], 2012 ) guidelines, health professionals should be trained in identifying signs of autism and also in understanding the impact autism can have upon family members, including parents.

Parenting is defined as “the raising of children and all the responsibilities and activities that are involved in it”(Cambridge University Press, 2023 ). Within the family structure itself, sex and gender impacts parent–child dynamics with research showing that mothers interact differently with sons compared to daughters (e.g. Robinson et al., 1993 ) and that parent’s emotional availability depends on whether the parent–child dyad is same or mixed genders (Lovas, 2005 ). Indeed, a review reported that different parent–child dyads (i.e. mother-daughter; mother-son; father-daughter; father-son) are distinct in terms of cohesion and closeness (Russell & Saebel, 1997 ). Some research reports that mother and daughter relationships are highly distinct and critical for daughter’s adjustment abilities and wellbeing (Paikoff et al., 1993 ). It is worth noting however, that gender might not be the only factor that causes distinctiveness in parent–child dyads and that factors such as child characteristics, parent personality and marital relationship quality all contribute to the parent–child dynamic (Russell & Saebel, 1997 ).

Having an autistic child may make the parent–child dyad even more distinct with a previous meta-synthesis reporting that families faced multiple challenges including increased stress and isolation when parenting an autistic child (Ooi et al., 2016 ). Importantly, females have been vastly under-represented in this research. Given the possible differences in presentations and also the social contextual factors, including gender expectations and stereotypes imposed upon women (which may make parenting males and females a different experience), it is important to understand if the parenting experience for autistic females is also different from autistic males (Kågesten et al., 2016 ). Specifically mothers of autistic children typically take on the majority of caring responsibilities (Nealy et al., 2012 ). This may mean that mothers have key insights into their autistic daughter’s experiences, strengths and difficulties, as well as their (and their family’s) own socio-emotional needs (Fowler & O’Connor, 2021 ). However, not only are many previous studies on mother’s experiences outdated contextually, they are also unable to separate the experiences by child gender. This has led to a growth in studies looking into the perspectives of parents raising an autistic female in order to unearth the possible differences in this experience (e.g. Anderson et al., 2020 ). To date, no review has explored parenting experiences of mothers of autistic females.

This review aims to synthesise evidence from qualitative studies of parenting experiences of mothers of autistic females, to generate a meaningful picture of the evidence and identify potential gaps in current findings. A thematic synthesis approach was used to generate new insights to inform best healthcare practice and policy.

To achieve this aim, the following research questions were developed using the Sample, Phenomenon of Interest, Design, Evaluation and Research type (SPIDER) qualitative strategy (Cooke et al., 2012 );

What are the reported ( Design ) lived experiences ( Evaluation ) of parenting ( Phenomenon of Interest ), from the perspective ( Evaluation ) of mothers of autistic women and girls ( Sample ) in current qualitative research ( Research Type )?

From the mothers’ perspective, what supports caregivers to raise their autistic daughter, or makes things easier?

From the mothers’ perspective, is there anything missing in terms of support for caregivers to raise their autistic daughter, or does anything make things harder?

This qualitative review (meta-synthesis) was a pre-planned, comprehensive search of the literature. It was registered on PROSPERO (CRD42022302295) on 12th May 2022 and is reported in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Page et al., 2021 ).

Search Strategy

Searches were conducted on 5 databases (EMBASE, MEDLINE, PsychINFO, ASSIA and CINAHL) from each database’s date of creation until 20th May 2022. A specialist librarian was consulted to ensure searches were comprehensive. Reruns of all searches were conducted on 12th October 2022 and 29th May 2024 and additional studies that were relevant were included in the review. A grey literature search was conducted, which included ProQuest Dissertations & Theses Global and Web of Science. Further searches were conducted in Google Scholar (first 200 searches) with two variations of search terms (see Appendix 1 for full details of searches). Relevant journals were also scanned (e.g. Autism ). Reference lists from the identified papers were searched (e.g. citation chaining/backward scanning). New citations of the identified papers were also scanned (e.g. forward scanning). All searches were completed by 29th May 2024.

This review used the Sample, Phenomenon of Interest, Design, Evaluation and Research type (SPIDER) qualitative search strategy which was developed for use with qualitative and mixed-method studies (Cooke et al., 2012 ). This was chosen to make searches more efficient and relevant to the qualitative literature. A wide range of search terms and truncations were used (e.g. Mother*, Father*, Caregiver*; see Table  1 ) to capture any studies which may have incorporated mothers without reference directly. The recommended search strategy format [S and P of I] AND [(D or E) AND R] was used, which has been found to have increased efficiency for qualitative searches compared with more traditional quantitative-based search tools, such as PICO (Cooke et al., 2012 ). Studies which had available and accessible English translations were included. Best efforts were made to source English translations prior to exclusion.

Selection Process

This review wanted to collate the reported lived experiences of parenting, from the perspective of mothers of autistic women and girls in qualitative research. To be eligible for the full text review (1) participants had to be a mother to at least one autistic female; (2) the children had to be diagnosed with ASD or have been assessed within the study to reach the threshold of diagnostic criteria (e.g. through the Autism Spectrum Quotient [AQ]; Baron-Cohen et al., 2001 ); (3) the research had to be qualitative; mixed-method research was included only if qualitative component was substantial; (4) the research had to be original primary research, which included first person accounts via interviews, focus groups or open-ended surveys of mothers’ experiences of parenting; (5) papers could be published in peer-review journals or from the grey literature, including conference abstracts; (6) the study had to be written in English or have a transcription available. Publications could be from any time period or country. The mother and child could be of any age.

Studies were excluded if (1) the perspectives in the study were only from anyone other than mothers of an autistic female (e.g. clinician perspectives); (2) the participants’ accounts were from, or not discernible from, other groups (e.g. non-autistic child, non-mother, or male child with autism); (3) any of the children in the study were not assigned female at birth; (4) studies were quantitative observations or secondary data studies; reviews, commentaries, previously used data or books; (5) studies which were solely quantitative studies; (6) papers which did not report the views of mothers of autistic females regarding parenting; (7) papers in languages other than English, if a translation was not available.

Titles and abstracts were screened independently by the lead reviewer (MO) using Covidence software, where duplicates were removed. To ensure a rigorous screening process, the lead reviewer repeated this process for a second time. In line with Boland et al. ( 2017 ), a full text review was conducted by the lead reviewer with the second reviewer (ZP) independently screening 10% of papers. Agreement was 100% using the selection and screening tool, which was developed from the inclusion/exclusion criteria and was piloted by the lead reviewer to ensure screening would be standardised (Boland et al., 2017 ; see Appendix 2 for selection tool). A third reviewer (KGS) was organised in the case of a disagreement, but was not required.

Quality Appraisal of Included Studies

Studies were critically appraised for methodological quality using the Critical Appraisal Skills Programme ([CASP], 2018 ) checklist for qualitative research. This 10-question systematic tool has been specifically designed to review areas of validity of results, results and value of results. Three other tools were piloted alongside this tool (Joanna Briggs Institute [JBI] critical appraisal tool, Mixed Method Appraisal Tool [MMAT] and the Quality Assessment with Diverse Studies [QuADS]) by the lead reviewer and the CASP appeared to be the most relevant, appropriate and specific. Each question resulted in an answer of ‘yes’ (1 point), ‘can’t tell’ (0 points) and ‘no’ (0 points) with a maximum of 10 points, as suggested by Kanavaki et al. ( 2016 ). High quality studies were deemed to score 8–10 points, medium quality studies scored 5–7 points and low quality studies scored less than five points (Kanavaki et al., 2016 ).

All studies were reviewed for quality by the lead reviewer. Each study was appraised individually using the CASP document. Results were then added to a spreadsheet table. A proportion of studies (30%) were appraised independently by the second reviewer with an inter-rater reliability of 80%. Disagreements were discussed and resolved together or with the third reviewer. The CASP tool was used to better understand methodological limitations and was not used to exclude papers (Campbell et al., 2011 ).

Data Extraction

Data was extracted from the included studies independently by the lead reviewer and for rigor, the second rater also extracted 10%, with 100% agreement with the lead reviewer’s extraction. Data extracted included; author, year, journal type, study type, study aim, study design, country, setting, inclusion/exclusion criteria, numbers of participants, funding source, mean age of mothers, mean age of focus children, number of focus children, mean age of child at diagnosis, mothers’ ethnicity and working status and study findings. As not all studies reported all of the above items in the same way, extracted data points were changed to a coherent format for readers where possible (e.g. means and ranges for ages). Where data was missing the lead reviewer contacted the studies main contact to ask for further information. If there was no answer, “not reported” was documented. The information extracted was inserted into a spreadsheet by the lead author (Microsoft Excel, Forth Valley, Scotland). If studies were mixed-method, only the qualitative findings were extracted.

Reflexivity

It is important to be reflexive in the process of research as a researcher’s previous experiences of the world may impact upon their interpretation of data. The lead researcher conducted this research as part of their doctoral training in clinical psychology in Scotland. Their previous roles have largely involved working with children and their families, in both psychological and third sector roles and they have been trained in evidence-based parenting techniques. The second reviewer is also a doctoral student. The third reviewer is an experienced researcher who specialises in the field of autism. All reviewers are females and two are mothers of non-autistic children. A journal was kept by the lead reviewer to help reflect upon how their experiences may impact upon this review.

Data Synthesis

Data was synthesised using the ‘thematic synthesis’ approach, developed by Thomas and Harden ( 2008 ). This approach is both integrative and interpretative, which allowed the researchers to stay close to the results of the original studies, but also to make a transparent analysis of the data and produce new concepts or hypotheses.

The data was coded by the lead reviewer using NVivo 20 software, which has been designed specifically to facilitate coding in qualitative research. The “results” sections in each study were filtered manually for mother’s views only. The data was synthesised by the lead reviewer and the second reviewer checked 10% of coding; agreement was initially 63%. Disagreements were resolved through discussion together and with the third reviewer, where appropriate. A database of the decisions was recorded. Codes were then grouped into larger ‘descriptive themes’. Discussions between the review team (MO, ZP and KGS) were to consider the grouping of themes. Then themes were grouped into over-arching ‘analytical themes’. This required the researchers to interpret the findings and the lead researcher discussed reflectively with the other researchers during this stage.

Community Involvement Statement

This review was conducted as part of a doctoral project and was not completed in conjunction with individuals or groups from the autism community.

Description of Included Studies

The searches generated 3423 studies of which 1283 were duplicates. The remaining 2140 studies were screened, with 1650 being excluded at this stage. A full text review was conducted on the remaining 490 and 17 were eligible for inclusion in this review. One study noted a previous primary data study which may have been appropriate (Hamdani et al., 2023 ). The author was emailed, but no answer was received, and the conference reference appeared to be a poster, which was not accessible. Citation searches further identified 11 studies, of which 5 were eligible for inclusion after full-text review. Therefore, a total of 22 studies were included in the review (see Table  2 for detailed summary of the included studies; see Appendix 3 for examples of excluded studies). It is worth noting that the inclusion criteria for the participants was that the child had either received an autism diagnosis and/or was assessed in a test that met diagnostic criteria (e.g. the Autism-Spectrum Quotient [ AQ]).

Fourteen studies were from peer reviewed journals and 8 were theses/dissertations. Three studies were mixed-method studies (Eriksen, 2016 ; Gray et al., 2021 ; Watson, 2014 ) and the remainder were qualitative. Studies were largely interview-based, with two studies using interviews plus further ethnographic approaches (e.g. drawings and visual elements; Leeper, 2021 ; Tomlinson et al., 2022 ). Three studies undertook interviews in a focus group format (Gray et al., 2021 ; Mademtzi et al., 2018 ; Milner et al., 2019 ); and two studies were case studies (Cobb, 2014 ; Erspamer, 2016 ). Studies varied in their design with 12 using thematic analysis, 4 using grounded theory (Cobb, 2014 ; Gray et al., 2021 ; Leeper, 2021 ; Watson, 2014 ), 4 using Interpretative Phenomenological Analysis (Anderson et al., 2020 ; Cridland et al., 2014 ; Freeman & Paradis, 2022 ; Rabbitte et al., 2017 ), 1 using directive content analysis (Erspamer, 2016 ) and 1 using a naturalistic enquiry; an interactive process (Navot et al., 2017 ). A range of settings were utilised with most studies being multi-modal (11/22). Other studies had interviews taking place online only (1/22; Etchison et al., 2022 ), at home only (2/22; Cobb, 2014 ; Cridland et al., 2014 ), via telephone only (2/22; Eriksen, 2016 ; Laughlan & Ballantyne, 2021 ) or in clinic only (2/22; Gray et al., 2021 ; Mademtzi et al., 2018 ). Four studies did not report their setting(s) clearly (Cook et al., 2018 ; O'Hagan, 2020 ; Rabbitte et al., 2017 ; Tomlinson et al., 2022 ). One study had been originally part of a larger data collection project, but the author explained that this data was written up separately in individual case studies (Cobb, 2014 ). Eight studies were conducted in USA, 11 in the UK and Ireland, 2 in Australia and 1 in Canada.

Studies included a range of participants from mothers only (5/22), to mothers and daughters (Cridland et al., 2014 ; Eriksen, 2016 ; Erspamer, 2016 ; Land, 2015 ; Laughlan & Ballantyne, 2021 ; Leeper, 2021 ; Milner et al., 2019 ; Navot et al., 2017 ), mothers and fathers (Freeman & Paradis, 2022 ; Mademtzi et al., 2018 ; Sedgewick et al., 2018 ; Sproston et al., 2017 ), mothers, fathers and daughters (Cook et al., 2018 ), mothers, fathers and other relatives, e.g. grandmother (Rabbitte et al., 2017 ). One of the studies included mothers and daughters as well as school key workers (O’Hagan, 2020 ), one study included autistic women, parents and one psychotherapist (Tomlinson et al., 2022 ) and finally another study included mothers, fathers, autistic females, 5 siblings and 3 noted as professionals, not specified (Watson, 2014 ). Sample size varied from 1 (Cobb, 2014 ) to 40 families (Mademtzi et al., 2018 ). The focus child within the studies ranged in age from children (e.g. under 12 years) to adults (e.g. 18 + years). The majority of studies included focus children and teenagers (10/22). Other studies included focus children only (3/22; Cobb, 2014 ; Etchison et al., 2022 ; Gray et al., 2021 ), teenagers only (e.g. 13–18 years; 3/22; Eriksen, 2016 ; O’Hagan 2020 ; Tomlinson et al., 2022 ), teenagers and adults (1/22; Land, 2015 ), children through to adults (3/22; Mademtzi et al., 2018 ; Milner et al., 2019 ; Navot et al., 2017 ) and finally adults only (2/22; Erspamer, 2016 ; Leeper, 2021 ).

The mother’s age was not always reported or clear (12/22), but when these were extractable they ranged between “under 25–over 35s” (1/22; Etchison et al., 2022 ), twenties to fifties (1/22; Fowler & O’Connor, 2021 ), thirties to fifties (3/22; Anderson et al., 2020 ; Land, 2015 ; Rabbitte et al., 2017 ), thirties to fifty plus (1/22; Cook et al., 2018 ), “mid-forties” (1/22; Cobb, 2014 ) and forties to fifties (3/22; Cridland et al., 2014 ; Eriksen, 2016 ; Watson, 2014 ). Of the studies who reported mothers’ ethnicity; most reported were described as White or Caucasian. There were also studies which included mothers who were described as Mixed-race, Black, Asian, Korean-Canadian and Native American.

Methodological Quality

The review assessed the methodological quality of 22 studies. Each question within the CASP framework was scored as ‘yes’ (1), ‘no’ (0) or ‘can’t tell’ (0), yielding a maximum score of 10 (Kanavaki et al., 2016 ). Four studies scored in the ‘medium’ quality range (Cobb, 2014 ; Eriksen, 2016 ; Gray et al., 2021 ; Laughlan & Ballantyne, 2021 ) and the remaining 18 scored in the ‘high’ quality range (see Table  3 ); with 7 scoring the highest possible score for quality available on the CASP. All studies were found to have a clear statement of aims and have used qualitative methodology appropriately. Increased transparency would have supported a better quality assessment, as several items were not sufficiently detailed to allow for a clear “yes” answer. The most common issue with studies was that they didn’t always adequately consider the relationship between the researcher and the participant; with 7 ‘can’t tell’ answers and 5 ‘nos’. This may be due to the methodology of these studies as being less focused upon this than other methodologies (e.g. thematic analysis vs. IPA); however, future studies should consider this as an essential step within research to ensure the participant(s) are not biased by their relationship with the researcher(s). Two studies were not clear within their paper about ethical considerations; however, publisher/university guidelines were checked and all included studies required ethical statements/review board checks prior to publishing; as such, these papers were given “yes*” on these grounds. In addition, the recruitment strategy for 1 study was not deemed as appropriate (with 6 studies needing more transparency before a “yes” could be given).

One study was found to have not analysed it’s qualitative data sufficiently rigorously (Gray et al., 2021 ). This was a mixed-method study and this may have meant that the focus on quality was more on the quantitative side of the research, which could be due to the limited guidance and conventions surrounding this in mixed-method research (Dempsey, 2018 ; Richards, 2015 ), however much of their raw data was available within the paper allowing us to rigorously analyse this in our thematic synthesis. Overall, many studies would benefit from more transparent demographic information (including mothers’ age, ethnicity and child demographics) Fig. 1 .

PRISMA diagram of study searches (Page et al., 2021 )

A total of 468 codes were found from 22 studies. Findings were grouped into 17 categories within 5 superordinate themes: ‘ The diagnosis process and getting support ’, ‘ Mother’s role as all consuming ’, ‘ Experiences of family wellbeing ’, ‘ Mother as an expert observer ’ and ‘ The hopes and fears of mothers ’ (See Table  4 ).

Finding 1: The Diagnosis Process and Getting Support

This finding consisted of four main areas: early concerns, searching for answers, fighting for support and impact of support. Within the studies, there was recognition that early signs of autism were apparent to some mothers; for many mothers, there was an intuitive sense that something was different to what they had expected, but that they couldn’t identify what this was. Many mothers reflected that the presentation of autism was not initially taken forward by them; either because it was considered a “boys” thing or because they felt that their daughter’s presentation did not fit exactly to what was typically considered “autistic” (e.g. the “traditional” male presentation).

The process of searching for answers is described amongst the studies as challenging. The main challenge noted by mothers was the delay in diagnosis, with some mothers feeling that they had lost out on key supports and interventions in their daughter’s early life, because of the delays in diagnosis. Mother’s felt that this was the case because of the misidentification of autism, from both themselves and professionals. There were positive stories of more straightforward assessments which tended to occur if the mother knew someone who was knowledgeable in the area (e.g., a friend with an autistic child).

Amongst the studies, there was a sense that although the diagnosis process was challenging, the diagnosis itself was empowering, giving them confidence and direction, with many reflecting that they felt that their understanding of their daughter and their parenting stance had changed for the better. For some mothers, support from health services ended as soon as the diagnosis was given and they had to embark on a new journey of asking for help. Accessing support after the diagnosis was described by many as a fight and not a given. Mother’s actively sought support from school, health and social circles. There were large numbers of barriers to support recognised by the mothers, with inappropriate supports and lack of resource being highlighted. Support was often not available and mother’s felt that this was due to the fact that there was little information and professional knowledge out there about autism in girls. When supports were introduced, mother’s spoke of provision being geared towards boys with autism (e.g. using toys which were typically seen as more masculine), rather than having accessible supports for their daughters.

The impact of support was also discussed amongst the studies. It was clear that when appropriate supports were not in place, mother’s felt their daughters were excluded from being part of schools or groups, and often ostracised, undergoing additional difficult transitions (e.g. changing schools), unlike those in settings that had been able to provide the provision required. When appropriate supports were in place, such as a nurturing teacher, the positive impact was clear, with daughters managing in school and parent’s feeling less overwhelmed. Mothers noticed that there was a cumulative progress in their child’s development that happened slowly over time when the appropriate provision was in place. In terms of what helps in schools, some of the mothers felt that their daughters would alter their behaviour in a more productive way if there was someone other than them [the mother] teaching them about it. Mothers also highlighted that when information was used in a way that met their daughter’s needs (e.g. visual rather verbal) they learned more. In terms of parental support, mothers spoke about how much they appreciated social supports such as online support groups; “I’ll tell you the best thing I’ve done is join a Facebook group called colouring outside the lines. They honestly, I don’t know what I would have done without them.” (Anderson et al., 2020 , p. 1550).

Finding 2: Mother’s Role as All-Consuming

Three key areas were noted in this finding; the high level of parental involvement, the role as all-consuming and the varied parent techniques used by mothers. The level of mothers’ involvement in their daughters’ lives appeared to be higher than may be expected for a neurotypical daughter. Mothers spoke of their involvement in many areas of their daughter’s lives from involvement in supporting with hygiene and menstruation to actively scaffolding their daughter’s social lives. A key role for mothers was that of the advocate. They described a significant involvement in advocating their daughter’s needs and wants in many professional settings including the diagnostic process, school and beyond. They also detailed how they had a dual role as protector of their daughter, but also as a realist. For example, they supported their daughters with social situations to prevent bullying, but also tried to help their daughter to understand the reality of life and that it is not always straightforward and easy. Mothers described the tasks as all consuming, with much of their time dedicated to planning and organising for their daughter. To support their daughters, mothers spent considerable time actively seeking information about autism in girls and could be seen as continual learners.

To support their daughters, mothers used an extensive range of different techniques. Many can be seen as typical parenting strategies, regardless of their child’s neurodiversity, but used more extensively. The most commonly mentioned strategies were around direct and open communication with their daughter, which appeared to support them to deal with the day-to-day difficulties as they arose. For example, many mothers had openly spoken with their daughter about their diagnosis and felt that this was a positive decision. Another key supporting strategy was to have short, but repeated, discussions with their daughter about topics to drip feed information. This appeared to have the benefit of the information slowly being accepted by the daughter.

Mothers also spoke of their conscious effort to focus on the positives of their daughter’s presentation and highlight the strengths that their daughter has. This was in addition to allowing their daughters to be who they are and following their lead where appropriate and include their daughters in decision making. This could be seen as part of the mothers’ strategies to support their daughter to develop independence. Another key strategy that mothers mentioned was planning things in advance, both in terms of preparing themselves mentally for something they knew would potentially be a challenge, but also preparing their daughter for upcoming events (e.g. trying panty liners prior to their daughters period starting; Eriksen, 2016 ).

Finding 3: Experiences of Family Wellbeing

The synthesis captured the experiences of different family members’ wellbeing, from the perspectives of mothers. The overall picture was that the whole family was impacted including parents, their daughter and siblings. No information was available on the impact upon wider systemic groups/individuals. Some mothers noted that they had to be involved in their daughter’s lives to the degree to the detriment of their other children, including their other children having fewer positive experiences, such as sleepovers and extra-curricular activities. For many, there was also a toll on their spousal relationship, with some noting conflict or separation during this time. Some noted feelings of resentment towards their partners, who were seen as able to leave to go to work or take less responsibility in organisational planning within the family environment. In addition, mothers spoke of the financial burdens that ensued, between the additional health care costs and, at times, the reduction in hours at work to support their daughter.

The synthesis collated considerable information regarding the impact of having an autistic daughter upon mothers. It was common that mothers noticed an impact of having to watch their daughters struggle socially, which was described as distressing. Mothers highlighted that they felt there was still a stigma attached to having an autistic diagnosis, but little was said about what that meant for them. Furthermore, as well as spending time blaming themselves for their daughter’s difficulties, they also perceived others as not believing the diagnosis or understanding about their daughter’s difficulties. This has meant that they have experienced others as having too high expectations of their daughter and being inconsiderate. There was also a sense that mothers as well as their daughters were socially isolated from their communities, in part because of the community’s response to their daughter’s presentation and also because of the time they spent supporting their daughter. Despite this, mothers highlighted the rewarding feeling of parenting their daughter alongside the benefits it had given them, such as becoming a more empathetic person.

A range of emotions were experienced by mothers during parenting. At times mothers felt overwhelmed with the situation as a whole, particularly at the point of diagnosis, with comments around feeling unprepared, incompetent and lacking in confidence. Guilt, shock, denial and relief were all emotions felt by mothers during and after the diagnosis process. A feeling of exhaustion was noted that appeared to come from the sense that mothers were always in their parenting role. In addition, mothers spoke about going through a process of grieving the loss of their expected parenting journey. There was also considerable frustration felt, which mostly appeared to revolve around people’s lack of understanding about autism in girls and trying to gain the appropriate supports for their daughter.

Mothers also described their desire to have a girl and the expectation of what their relationship might look like in the future. Some described the relationship with their daughter as qualitatively different from that which they expected. Little evidence was found about this bond, but it was described as a difficult bond to create.

As is discussed throughout this review, there are a number of impacts upon the child themselves. However, of note was the mothers’ view that bullying was considerable and had a negative impact upon their daughters’ mental health. Mental health difficulties were noticed by mothers, with particular focus given to anxiety. The emotional toll that masking can take on their daughters was clear; this appeared to leave their daughters feeling exhausted after a school day and potentially led to the emotional meltdowns within the house.

Finding 4: Mother as an Expert Observer

Across the 22 studies, there were a range of observations from mother’s which painted a picture of their daughters’ presentation. Some of the observations highlighted traits that would be typically expected in a traditional autism assessment. These included intense interests, social communication difficulties, sensory issues and rigidity. Restrictive eating was also noted as an observable feature of some presentations. Positive aspects were also noted, with high moral compass, compliance and organisational skills being mentioned by some mothers. Overall, there was a sense that mothers had gathered a substantial knowledge and expertise about their child.

Most mothers felt that the presentation of their daughter was different to that of a male presentation. One key observation was that they felt their daughter struggled with social communication; interacting with their peers and had a lack of social awareness, but that they had more motivation and interest in being social than autistic males. Mothers noted that their daughters had difficulty fitting in with other children at school. They described that their child didn’t fit in with either the girls or the boys at school. Mothers felt that this might be because of gendered social expectations, where girls are typically expected to be “girly” and their daughters did not adhere to this. They described that their daughters chose practicality over fashion and one mother wondered whether this had a negative impact on fitting in. Mothers felt that struggling to manage conflict was also a barrier to maintaining friendships.

However, there were ways in which their daughters were fitting in. Mothers described a tendency to either bond more with the boys in the class or with children with neurodevelopmental differences. Daughters’ friendships circles tended to be small and mothers described a social process of building friendships that their daughter tended to follow, which typically started through bonding over their intense interests.

The synthesis identified a theme of masking through the 22 papers, with mothers reporting that it was used by their daughters as a way of coping in school. Mothers also saw this as a problem at times, which could lead to emotional burnout, mis-diagnosis and become a barrier to getting support. Some mothers felt that because their child’s need was not physically visible and they tended to be more introverted than autistic boys, people often did not understand that there was anything different about their child; posing the difficulty of not being believed.

Some mothers described their daughter’s behaviour around hygiene and puberty as challenging, particularly around resistance to the idea of periods, the heightened emotions it brought, and not understanding or carrying out basic hygienic practices; such as cleaning up a menstruation mishap, despite being encouraged by their parents. Others felt that their daughter managed well and better than they had anticipated; responding well when education around puberty was given. Some mothers appeared to take a role in supporting their daughter with their period pain through medication and they received positivity from their daughters about the predictability of periods that the pill could offer.

Finding 5: The Hopes and Fears of Mothers

Mothers’ hopes for their daughter ranged from the immediate to those in the distant future. Mothers wanted their daughters to have appropriate support as soon as possible. In the future, mothers spoke of wanting their child to have feelings of purpose, such as jobs which align with their abilities and interests. Mothers also had more abstract hopes, such as their child feeling fulfilled and happy.

Mothers spoke about the journey to accepting their daughters diagnosis as being a difficult one. Studies described that mothers felt a range of emotions towards the diagnosis of autism, which one compared to a “rollercoaster” of emotion (Fowler & O’Connor, 2021 , p. 279). Denial and disappointment were described, given the loss of the traditional view of what life would be like for their daughter (e.g. getting married and having children). The mothers described a period of adjusting and reshaping their expectations, with the result being that they were more accepting and embraced their daughter’s future.

Mothers noted their safety concerns about their daughters given their social communication difficulties and lack of insight, meaning they were trusting and naive to risks of exploitation. This was particularly evident around romantic relationships, with concern for their daughter’s lack of understanding about romantic interactions as they are less “scientific” (Cridland et al., 2014 , p. 1268). It was also prevalent in terms of non-romantic interactions, particularly around being bullied, their absconding risk, and their risk of suicidality.

This systematic review sought to synthesise qualitative evidence from 22 qualitative or mixed-method studies of mothers’ parenting experiences of autistic females; to generate a meaningful picture of the evidence to help inform clinical practice. Our meta-synthesis identified a total of 5 superordinate themes, reflecting the experiences of over 150 mothers; ‘ The diagnosis process and getting support ’, ‘ Mother’s role as all consuming ’, ‘ Experiences of family wellbeing ’, ‘ Mother as an expert observer ’ and ‘ The hopes and fears of mothers ’.

Collectively, this research is somewhat in line with the broader literature conducted with mothers of autistic children, in terms of the social, emotional and family impacts upon them (Legg & Tickle, 2019 ; Papadopoulos, 2021 ). However, there are also unique difficulties perceived by mothers of autistic daughters; including prominent issues around diagnosis/misdiagnosis, finding and receiving appropriate support/information and puberty needs.

Our review found that, in line with the wider literature, the journey to obtaining a diagnosis for an autistic daughter was not always straightforward; often being lengthy and challenging, with misidentification and the perception that this was a more prominent difficulty for females (Begeer et al., 2013 ; Dworzynski et al., 2012 ; Russell et al., 2011 ). These challenges appear to be specific to having an autistic daughter and may explain the disparity in ratios of prevalence of autism by gender (i.e. that misidentification may negatively impact upon prevalence rates; Bargiela et al., 2016 ; Cridland et al., 2014 ; Trubanova et al., 2014 ). After reaching a diagnosis, getting support could feel like a battle. When supports were given, they could be unsuitable for autistic daughters; when appropriate, supports made a definite positive difference to both daughter and mother; highlighting a positive opportunity for quality improvement in health, social care and educational settings.

Our review found that mother’s largely felt consumed by the role of parent to an autistic daughter. They spent much of their time devoted to learning about and supporting their child, to a greater extent than would typically be expected. Their roles were extensive and covered vast areas of their child’s life; from socialising to personal hygiene. Along the way mothers conscientiously utilised an extensive array of parenting strategies to support their daughter’s development, de-stigmatisation and acceptance of change; many of which could also be utilised by healthcare and education staff to create consistency for the autistic child. To cope, mothers tended to use social supports, such as online groups, which is in line with recent research on coping mechanisms in parents of autistic children; where mothers were more likely to use emotion-focused coping, such as seeking social support (Al-Oran et al., 2022 ).

Mothers felt that their relationship with their daughter was qualitatively different to what they had expected it to be. When developing supports, commissioners may therefore wish to consider supporting mothers to understand and explore how this relationship may feel different; thus supporting acceptance and potentially impacting upon wellbeing.

This synthesis also found a range of evidence to suggest that there were a range of impacts across the whole family. This included impacting upon sibling social experiences, marital relationships, financial matters, mothers’ wellbeing and daughter wellbeing, which is in line with research conducted with parents of both autistic males and females (Ooi et al., 2016 ). Less however was apparent about the direct impact upon fathers and whether more impacts may be apparent from their perspectives. Studies with father perspectives are infrequent and more is required in this area, but suggest that fathers may find it harder to cope with an autistic child and so this viewpoint is extremely important to understand in order to support whole families (Legg & Tickle, 2019 ).

Our findings suggest that the mothers have built up a range of observations of their daughters over time, which paint a picture of their presentation. Their expertise suggests that not only do autistic females present with many “traditional” autistic traits, but also have qualitative differences. Mothers saw these differences in increased motivation to socialise, masking and dealing with menstruation. These qualitative differences have been noted in recent studies from the perspective of professionals and autistic females themselves (Gosling et al., 2023 ; Hiller et al., 2014 ; Tierney et al., 2016 ). These specific additions may help to explain why autistic females experience more mental health difficulties than their male counterparts (DaWalt et al., 2021 ). Given these qualitative differences, we may also reasonably expect autistic females that have been diagnosed to score differently to males using diagnostic tools (e.g. Social Responsiveness Scale; Constantino & Gruber, 2012 ). However, researchers have found no such difference between male and female scores on the SRS-2 (Rodgers et al., 2019 ). This could be because there is no difference, but it could also be possible that females who would score significantly differently have not been identified as having possible autism and so are missing from such studies; creating a cyclical difficulty where we continue to miss those who present in a less “traditional” way (Kirkovski et al., 2013 ; Kreiser & White, 2014 ).

This review highlighted that autistic girls often did not fulfil “typical” gendered expectations (e.g. wearing a dress), and bonded more with male peers. However, what appeared to be missing from this synthesis was a discussion of gender identity and mothers’ experiences of parenting an autistic person who was assigned female at birth (i.e. was given the sex of female at birth), but who may experience gender incongruence or dysphoria related to this. Empirical studies are now showing that this is more common in autistic people than neurotypicals (Glidden et al., 2016 ; Nabbijohn et al., 2019 ; van der Miesen et al., 2018 ; Warrier et al., 2020 ) and recent studies are now beginning to explore this from both autistic adolescent’s and adult’s perspective (e.g. Coleman-Smith et al., 2020 ; Oliver et al., Unpublished). Future studies would benefit from considering a parents’ view, to help understand this experience further.

Strengths and Limitations of the Review

Firstly, it should be acknowledged that due to tight time and budget constraints related to clinical doctorate research, a key limitation of the current review is the lack of community involvement. Additionally, despite using a thorough SPIDER search strategy, which was designed to catch qualitative studies in more systematic way than other methods (e.g. PICO), a further 5 studies were found using backward and forward chaining. This highlights that there are limitations to this method and that a thorough and multi-level search was important to ensure all available and appropriate studies were found.

The included studies have limited representation from black or ethnic minorities; studies were based in the UK, Ireland, USA, Canada and Australia; all of which are westernised countries. As such, this review would not generalise to the views of mothers’ living in non-westernised countries. Future empirical studies which have a broader cultural reach may help to identify the impact of societal expectation on the autistic female presentation. Despite best efforts, this study did not include five studies due to translations not being available. It was unclear as to how relevant these studies were to the current review and may or may not have addressed the research question.

The current review only considered the views of mothers to increase homogeneity and specificity of this perspective. This gives a clearer picture of how mothers’ experience parenting in this context and also highlights the need for other perspectives to be explored (i.e. fathers’ perspectives). All appropriate data was collected; other reviews may wish to be broader and include fathers, but for the purpose of this review we excluded papers where the mothers’ views were not extractable. As with most studies, there is a risk that those who responded to the included studies may have missed a cohort of underrepresented mothers (for a variety of reasons); however, given that views were largely consistent over the 22 studies, this suggests that many mothers’ views are captured within this review.

Given the range of ages of daughters in these studies (under 5 to 29) a broad range of experiences were captured. Future studies should consider the experiences of mothers with autistic adult daughters, to better understand if there are any gender-specific differences which occur in later years (e.g. around menopause). This may now be more possible, given that diagnosis is becoming more common in adulthood; particularly for women (Russell et al., 2022 ).

This thematic synthesis was conducted with rich data to give results which had transparent links with the texts included (Thomas & Harden, 2008 ). As with all thematic synthesis, a level of interpretability is utilised. It has been conducted in a rigorous and reproducible way; a co-rater was used to increase robustness at all levels; screening, full text, data extraction, quality assessment and coding. A reflection diary was taken and reflective discussions with academic supervisor were also utilized.

This review has clear implications for healthcare and national policy. It shows that despite best efforts from healthcare and education, there are still improvements to be made in the process of diagnosis of, and support for, autistic females. In addition, the impact upon families of not having appropriate support is clear and so there are implications for third sector organisations; specifically, the provision of online support groups for mothers and learning from mothers’ extensive array of positive parenting techniques to support their daughters.

Conclusions

This synthesis sought to provide a robust account from mothers’ experiences of parenting autistic women and girls. Overall, the experience of mothers in these 22 studies highlight that timely, accurate identification and appropriate care, using a range of positive parenting techniques, having support for mothers, and focusing on their daughter’s positive traits, are all things that make the experience of parenting more manageable. In contrast, lack of timely, accurate identification or appropriate care, feeling unsupported by others (e.g. spouse and/or professionals) and lack of adequate support for mothers all appear to make the experience of parenting feel more difficult. Despite having timely and appropriate care for the whole family in best practice guidelines (e.g. NICE), this does not appear to be a uniform experience; highlighting an opportunity for the development of more appropriate, timely diagnosis and support pathways, which are understanding of gender-specific differences in autism and consider the insights of mothers of autistic daughters.

Data Availability

Data currently available on request from the authors however will be openly available after 30th November 2024 on Edinburgh DataShare – https://datashare.ed.ac.uk/ .

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Appendix 1. Database searches conducted as part of the systematic review

Appendix 2. Selection tool used for systematic review

Appendix 3. Examples of similar studies which were excluded

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Oliver, M., Poysden, Z. & Gillespie-Smith, K. A Qualitative Systematic Review and Meta-synthesis of Mothers’ Experiences of Parenting Autistic Women and Girls. Rev J Autism Dev Disord (2024). https://doi.org/10.1007/s40489-024-00472-z

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