Живой опыт родителей с воспалением артрита: Обобщающий протокол о качественных доказательствах.

Introduction

Parenting involves the provision of nurturing care throughout childhood to prepare children to live in society, form relationships, learn, work and thrive (UNICEF 2021 ). It is a complex, dynamic and evolving role based on the child's needs, family values, and societal influences (American Psychological Association 2023 ). To ensure that support for parents is prioritised at all levels of society, a life‐course lens for parenting has been proposed (UNICEF 2021 ). Adopting this lens recognises that parenting demands and challenges exist from birth to early adulthood and represents a shift in focus in policy and practice, moving from a child‐centric view to a parent‐centred focus (UNICEF 2021 ).

Despite this global ambition to develop a parent‐centred model of health and social care support, its integration into occupational therapy practice remains limited (McGrath et al. 2024 ). Parenting is recognised as a valued occupational role (Honey et al. 2025 ), and the multifaceted demands of parenting can present challenges that occupational therapists are well positioned to address. While research has identified a need for parenting support among individuals with physical disabilities, occupational therapists often lack the specific knowledge and skills to meet this need effectively (Honey et al. 2025 , 2024 ). Similarly, Pastor‐Bédard et al. ( 2023 ) highlighted that parenting occupations receive limited attention in occupational therapy practice, particularly with mothers experiencing disability and chronic conditions such as cerebral palsy, arthritis, multiple sclerosis and spinal cord injury. This lack of focus may reflect a limited understanding of how long‐term health conditions impact the performance of parenting roles and activities.

Although many occupational therapists acknowledge that supporting parents is part of their professional scope, they often report lacking the confidence, training and resources needed to fully integrate parenting support into their practice. Additionally, a need for greater institutional support and a broader recognition of their role has been identified (Honey et al. 2025 ). To develop meaningful interventions and supports, it is essential that occupational therapists gain a comprehensive understanding of parenting as a dynamic and multifaceted occupation. Recent research has raised awareness of parenting as a valued occupational role and advocated its integration into healthcare services and systems (Codd et al. 2023 ; Honey et al. 2024 ; McGrath et al. 2025 ; Pituch et al. 2022 ). In response to the growing recognition of this approach, the Parenting Occupations and Purposes (POP) framework (Lim et al. 2022 ) has been developed to guide practice and deepen understanding of parenting as an occupation. The POP provides a structured approach for occupational therapists to understand parenting from an occupational perspective by categorising parenting occupations into broad themes and situating them within a sociocultural context. Budman and Maeir ( 2024 ) applied components of this framework to develop an occupational therapy parenting intervention for Ultra‐Orthodox Jewish mothers of children with ADHD. This approach facilitated the authors to focus on the development of parenting skills, promotion of self‐care and raising knowledge of the condition as key components of an intervention programme. Their work highlights the potential of the POP framework to inform both clinical practice and research, specifically in the development of parent‐focused intervention programmes. The framework provides a valuable point of reference for identifying parenting occupations, which will inform and underpin our analysis.

Inflammatory arthritis (IA) is a collective term for a group of autoimmune conditions including rheumatoid arthritis, undifferentiated inflammatory arthritis, spondyloarthritis and juvenile idiopathic arthritis that present with inflammatory synovitis alongside other systemic symptoms (Poudel and Lappin 2023 ). IA typically affects more women than men at a ratio of 3:1 and can occur at any age with a peak age of onset between 35 and 45 years of age (Health Service Executive 2018 ). In Ireland, an estimated 2% of the population has a diagnosis of IA (Centre for Arthritis and Rheumatic Diseases 2024 ). Symptoms include joint pain, stiffness and fatigue, which affect all areas of human functioning classified by the World Health Organization (WHO) in the International Classification of Functioning, Disability and Health (ICF; WHO 2001 ). The onset of symptoms and subsequent diagnosis of IA often coincide with a stage of life when individuals are taking on or engaging in parenting responsibilities, which can present physical, psychological and social challenges in fulfilling parenting roles (Codd et al. 2023 ).

The lived experience of parenting with IA across the disease trajectory has been explored in the literature. Most published studies in this area involve small sample sizes (< 20 participants, often < 10), and focus on one aspect of parenting with IA, such as the physical or psychological experience. It is widely reported that parents with IA experience physical limitations in performing daily caregiving tasks, such as lifting, playing or managing household responsibilities (Feddersen et al. 2019 ; Parton et al. 2021 ; Stransky et al. 2022 ). This altered physical capacity can impact parent‐child interactions, with parents often expressing remorse over their perceived inability to facilitate key experiences with their children (Barlow et al. 1999 ; Codd et al. 2023 ; Katz et al. 2003 ). Loss of identity and frustration arising from these barriers to meaningful occupation can have a profound impact on mental health and emotional capacity. Parents with IA report experiencing feelings of loss, low mood, irritability and disappointment as a result of limitations imposed by their symptoms (Avrech Bar et al. 2021 ; Backman et al. 2007 ; Del Fabro Smith et al. 2011 ; Grant 2001 ; Parton et al. 2021 ). The literature reflects a range of parental experiences at different stages of the disease. While some studies concentrate on early inflammatory arthritis (Codd et al. 2023 ; Grant 2001 ; Zelkowitz et al. 2013 ), others include parents with long‐standing disease or capture a broader trajectory (Feddersen et al. 2019 ; Mitton et al. 2007 ). A majority of parenting studies have considered the mother's lived experience. Conversely, the father's voice has received less attention in the literature to date. One study exclusively considered the male parenting experience in IA and reported that men were less restricted by their condition once practical and social supports were available (Avrech Bar et al. 2021 ). Fathers with IA have identified breadwinning and financial stability as key aspects of their parenting role and fear of role loss was associated with a risk of negative impact on their children's financial security (Avrech Bar et al. 2021 ; Codd et al. 2023 ). These parenting experiences, challenges and strategies are dispersed across a wide body of literature. We aim to complete an exhaustive search and synthesise this qualitative evidence to capture the lived experience of a diverse group of parents with IA across the disease trajectory.

A framework synthesis has been selected for this review in order to enhance its relevance and immediate applicability to the occupational therapy profession and to offer a holistic understanding of parenting experiences with IA. Occupational therapy is underpinned by core beliefs in the therapeutic value of occupation and an understanding that engagement in meaningful activities is essential for health and well‐being (Royal College of Occupational Therapists 2021 ). Occupational therapists use conceptual models as theoretical frameworks to understand lived experiences and guide practice interventions and research. These models define key concepts such as the relationship between a person, their environment, and occupation factors that support performance (doing), participation (engagement) and well‐being (health and quality of life) (Baum et al. 2015 ). The person–environment–occupation–performance (PEOP) model is one such conceptual model (Baum et al. 2015 ). The PEOP model is a holistic theoretical framework, which integrates bio‐medical and sociocultural approaches using familiar terminology to describe the core paradigms of occupational therapy (Bass et al. 2024 ). Consequently, it is well suited to understanding and addressing complex conditions, such as IA, which involve both physical and psychological elements. Using theoretical models such as the PEOP in research can align and strengthen clinical practice by providing a clear framework to understand the occupational impact of a condition. Several authors have used the PEOP model to synthesise data within an occupation‐focused framework. Forhan and Gill ( 2013 ) applied the PEOP to organise literature on obesity‐related research and interventions aligning findings to occupational therapy theory. This approach strengthened the resulting clinical practice recommendations by visually mapping them onto the PEOP domains, thereby enhancing their accessibility and relevance for occupational therapists. Similarly, Wilson et al. ( 2013 ) utilised the PEOP framework to organise themes from primary qualitative research on perceptions of a men's shed mentoring programme, visually representing intergenerational mentoring through the PEOP lens. The PEOP framework's simplicity and clarity support its use in making research findings more accessible to a broad audience while effectively linking occupational therapy theory to lived experience. In IA research, Somerville et al. ( 2025 ) utilised the PEOP model to map vocational rehabilitation interventions, providing a comprehensive framework for clinical practice and highlighting the model's capacity to capture the complexity of rehabilitation across domains. Building on this approach, the proposed qualitative evidence synthesis (QES) will explore how individuals diagnosed with IA experience parenting using the PEOP model to guide the mapping and interpretation of synthesised data. This approach is expected to enhance the applicability of the findings to the development of parent‐focused programmes tailored to the needs of individuals living with IA.

Parenting support should be viewed as a collaborative partnership that involves a co‐construction of support for both the child and, importantly, the parents themselves, moving beyond the provision of information or education (UNICEF 2021 ). A foundational understanding of the lived experience of parenting with IA is needed to guide the development of tailored occupational therapy parent‐focused interventions. Narratives from the literature on parenting in IA are rich and wide ranging, however comprehensive synthesis of these narratives is lacking and no research to date has yet mapped these experiences of parenting with inflammatory arthritis through an occupational therapy framework. Rebić et al. ( 2021 ) conducted a QES examining the challenges of pregnancy and early parenting with IA and identified barriers to pregnancy as well as highlighting a significant emotional and psychological burden associated with pregnancy and early parenting in IA. However, these authors focused on pregnancy planning and the antenatal period; the lived experience of early parenting constituted a minor component of the overall study. To our knowledge, no QES uniquely considers parenting with IA across the lifespan of childhood from birth to early adulthood. A broader life course lens is needed which reflects parenting as a continuum. In addition, we have not identified any synthesis of qualitative evidence that utilises an occupational therapy framework to map the lived experience of parenting with IA. Our review aims to provide a comprehensive understanding of the experiences of parenting with IA for mothers, fathers or other individuals with primary responsibility for parenting children and/or young adults across the spectrum of disease course and duration of childhood and into early adulthood. Mapping findings to occupation‐focused theory will increase our understanding of how occupational therapy can address the complex challenges experienced by parents living with IA.

Methodology

We will conduct a QES review to synthesise qualitative research to explore the lived experience of parenting with IA. This review protocol is registered with the PROSPERO international systematic review registry (CRD420251071366). Qualitative research offers rich insights into individuals’ experiences, allowing them to share the meaning and impact of phenomena within the context of their broader life narratives (Creswell 2007 ). QES will be used for this review as it will facilitate understanding of the topic by collating diverse perspectives (Flemming and Noyes 2021 ).

Question Formulation

Initial question formulation was completed using the PerSPEcTiF structure (Perspective, Setting, Phenomenon of interest/Problem, Environment, Comparison [optional], Time/Timing, Findings) (Booth et al. 2019 ; See Table 1 ). This structure has been developed to describe both the wider context and immediate setting of a research question, components that are particularly suited to qualitative evidence synthesis (Booth et al. 2019 ).

Definition of Childhood for the Purposes of This QES

The age of majority, which marks the legal threshold of adulthood, is almost universally set at 18 years (Arnett 2018 ; Hamilton 2016 ). However, it is widely recognised that this legal definition of adulthood contrasts sharply with social and cultural perceptions of maturity, independence and educational attainment, suggesting that the responsibilities associated with active parenting often extend beyond the age of 18, particularly in industrialised countries (Hamilton 2016 ). For the purposes of this QES, childhood has been defined as individuals aged from birth to 21 years to reflect contemporary societal views that transitions to adulthood are often delayed beyond traditional timelines (Arnett 2018 ).

Search Strategy

Preliminary searches have been completed using keywords identified from the PerSPEcTiF categories for the research question. A preliminary meeting was held with a specialist health science librarian at Trinity College Dublin for guidance on developing an effective search strategy. A preliminary scoping search of EMBASE and Web of Science was completed to refine the study question, to consider the available articles in the review area and to inform the literature review (See Table 2 ).

Following this preliminary scoping search, the titles, keywords, and abstracts of the relevant articles were compared to the QES aim and objectives to refine the search strategy. Search terms were discussed among the three authors. A consensus was reached on the selection of diagnoses for inclusion, as well as on the refinement of the search strategy, to effectively capture studies related to these diagnoses. Search terms were reviewed by two patient representatives who are parents with lived experience of IA, training in PPI, and hold gender and geographical diversity. Amendments were made in response to PPI feedback; the wording of the inclusion and exclusion criteria was revised to specify the requirement of a primary diagnosis, and the final search strategy was refined and subsequently confirmed in collaboration with the three authors and the specialist librarian.

The full search is planned to take place in June 2025. We will expand the search to the following databases: APA PsychInfo (EBSCO Host), Campbell Collaboration (Wiley Online Library), CINAHL Ultimate (EBSCO Host), EMBASE (Elsevier), JBI Evidence Synthesis, Medline (Ovid Platform), OTseeker, The Cochrane Library, Web of Science Core Collection (Clarivate). Hand searches of relevant references and citations will be undertaken. Agreed inclusion and exclusion criteria are presented in Table 3 .

Study Selection

Following completion of the full search strategy, we will remove duplicates. All remaining citations will be uploaded to Covidence, a research collaboration and data management website which facilitates blind review by authors. Two authors (first and third) will independently review the titles and abstracts of the identified records. Studies meeting the inclusion criteria will progress to full text review for consideration against the inclusion criteria. The Preferred Reporting Items for Systematic Reviews and Meta‐analyses (PRISMA; Page et al. 2021 ) flow chart will be used to report the findings. Any disagreements between reviewers will be resolved through consensus or, if necessary, by the second author.

Data Extraction

Data extraction will be managed by the latest version of NVivo Qualitative Data Analysis Software (version 14). A data extraction table (presented in Table 4 ) will be used to summarise key information including the demographic study characteristics and lived experience data. Lived experience data will be extracted from the findings and discussion sections in the main text of each paper. Data including primary quotations and author interpretations from text, table and figures will be analysed. These data will be mapped onto the PEOP model, which will serve as a priori framework for framework synthesis. Line‐by‐line coding of the findings will be used to map data onto the structured data extraction table. This will be carried out as an iterative process. Any required modifications to the data extraction table will be noted and explained in the final paper. A pilot data extraction from two papers will be completed and discussed with all authors. Subsequently, the first and third authors will complete the full data extraction. The second author will be consulted to resolve any disagreements. Data that fall outside the conceptual framework but are deemed relevant to the research objectives will be documented and reviewed collaboratively by all three authors. A collective decision will then be made regarding their inclusion in the study.

Assessing Methodological Quality

We will use the Critical Appraisal Skills Programme Qualitative Research Checklist (CASP, 2025 ) to assess the quality of the included studies. The CASP has been endorsed by the Cochrane Qualitative and Implementation Methods Group and is a preferred appraisal tool for qualitative research as it strikes a balance between comprehensiveness and usability, making it accessible to both novice and experienced reviewers (Long et al. 2020 ). Two authors (first and third) will independently evaluate methodological quality against 10 criteria: aims, design, methodology, recruitment, data collection, data analysis, ethical issues, participant‐researcher relationship, findings and research value. Any conflicts will be resolved through discussion or, if required, by the second author. Methodological quality will not be used as an exclusion criterion.

Framework Synthesis Using PEOP Model

For the purpose of this QES, examples from the domains of the PEOP model have been developed that are specific to IA and parenting, ensuring alignment with the overall research aims.

These include: — Person: relating to the person’s capabilities; encompassing the physical, cognitive, psychological and spiritual aspects, their personal elements, and their IA diagnosis as it impacts their personal capacity to perform their parent role. Examples for inclusion are physical symptoms and their impact on parenting, psychological symptoms and their impact on parenting and the impact of symptoms on a person's identity as a parent; — Environment: relating to the context in which a person performs their parent role, encompassing the cultural considerations, social determinants, social supports, education, health policy, physical environment, community and assistive technology. Examples for inclusion are the impact of IA on relationships with co‐parents and children, the impact of IA on accessing environments where parenting takes place, the cultural or societal expectations of parenting and how this is impacted by IA; — Occupation: relating to the impact on activities, tasks and occupations that comprise their parent role. The Parenting Occupations and Purposes (POP) framework (Lim et al. 2022 ) will be used to identify parenting occupations prior to the synthesis.

Assessing Confidence in Findings

GRADE‐CERQual is increasingly used in QES reviews, particularly in health policy contexts such as those of the World Health Organization (WHO) (Flemming and Noyes 2021 ; Lewin and Glenton 2018 ; WHO 2018 ). GRADE‐CERQual comprises four components which we will use to assess methodological limitations, coherence, adequacy of data and relevance. Confidence in each finding will be based on consensus by the first and third authors, and assessed as high, moderate, low or very low (Lewin and Glenton 2018 ). Consultation with the second author will be sought in the event of disagreement. A summary of the GRADE‐CERQual appraisal for each finding will be included in table format. No studies will be excluded on the basis of this assessment.

Collating, Summarising and Reporting the Results

Findings will be collated with review by PPI partners to sense‐check relevance and appropriateness of decisions and to ensure transparency and accuracy of data management. Results will be initially presented in a table with a narrative summary reflecting on the synthesised evidence. The optimal representation of the results will be determined during the collation stage. Potential options include a table or diagram of data visually presenting the findings across the three domains of the PEOP model. The structure of our reporting will be guided by the Enhancing Transparency in Reporting the Synthesis of Qualitative Research Statement (Tong et al. 2012 ).

Dissemination of Results

Findings will be disseminated to clinicians, researchers and stakeholders via professional advisory groups and clinical and scientific conference presentations. The completed research paper will be submitted to an open access peer‐reviewed journal. A plain English summary will be included at all dissemination stages.

Implications of Results

This review will be the first to synthesise research on parenting with IA through an occupational lens. It will offer occupational therapists a clear and comprehensive summary of the available evidence on parenting with IA using a systematic and transparent approach. By deepening understanding of the parenting experience in the context of chronic illness, this review aims to inform the development of parent‐centred approaches within occupational therapy practice. In addition, the QES will inform the next phases of this project, which aims to design and assess the feasibility of a parent‐focused intervention to support parenting for individuals living with IA. Developing a comprehensive understanding of the lived experience of parenting with inflammatory arthritis mapped to occupational therapy theory will provide a strong theoretical basis for the planned research. This will include a qualitative descriptive study to explore barriers and facilitators to parenting with IA, a consensus study to prioritise intervention content and delivery, and feasibility testing of the developed occupational therapy‐led parenting programme within a clinical population.

Author Contributions

A/Professor Yvonne Codd conceived the study. Catherine White researched the literature and developed the protocol under the guidance of A/Professor Yvonne Codd and Professor Margaret McGrath. Catherine White wrote the first draft of the manuscript with guidance and contributions from A/Professor Yvonne Codd and Professor Margaret McGrath. All authors reviewed and edited the manuscript and approved the final version of the manuscript.

Ethics Statement

The authors have nothing to report.

Conflicts of Interest

The authors declare no conflicts of interest.

Acknowledgements

The authors acknowledge the support of Mr David Mockler, Health Specialist Librarian at John Stearne Medical Library, School of Medicine, Trinity College Dublin, with the search strategy. The authors acknowledge the contributions of Peter Boyd and Aoife McCoy, patient representatives.

Data Availability Statement

The authors have nothing to report.

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