Exploring parental perspectives on toileting management for children with cerebral palsy: a scoping review protocol

Abstract

Introduction

Cerebral palsy (CP) is the most common motor disability in children, with higher prevalence in low-income and middle-income countries (LMICs) compared with high-income countries (HICs). Children with CP (CwCP) often face significant challenges in achieving toileting independence due to motor, sensory and cognitive impairments. Parents play a pivotal role in managing these challenges, often encountering significant emotional, physical and social burdens. Despite the importance of toileting for autonomy and dignity, limited evidence exists on tailored toilet training programmes for CwCP, especially in LMICs. Understanding parental perspectives is essential to addressing these gaps and informing family-centred interventions.

Methods and analysis

This scoping review aims to explore parents’ perspectives on toileting management for CwCP, focusing on strategies, challenges and unmet needs, to inform future research and the development of supportive interventions. This scoping review will be conducted in accordance with the guidelines of the Joanna Briggs Institute and summarised using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews framework. The English language full-text articles, published between January 2014 and December 2024, addressing the parental perspectives, challenges and strategies related to the task of toileting in CwCP below 18 years of age will be included. Systematic searches will be conducted through PubMed, EMBASE, CINAHL, Scopus, Web of Science and grey literature. The data will be extracted and analysed thematically using Microsoft Excel.

Ethics and dissemination

The present protocol has been registered in the Open Science Framework (DOI: https://doi.org/10.17605/OSF.IO/73YQZ). Ethical approval is not required, as this review uses secondary data from published studies and does not involve direct participant recruitment. The findings will synthesise themes related to parents’ strategies, challenges and expectations in toileting management for CwCP. They will help address existing literature gaps and inform the development of practical, evidence-informed toileting education programmes for parents.

STRENGTHS AND LIMITATIONS OF THIS STUDY

• This review will adhere to a multi-database search strategy following Joanna Briggs Institute and Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews guidelines.

• Captures in-depth qualitative insights into caregiving experiences and challenges.

• Dual independent screening and extraction will enhance methodological rigour and reduce bias.

• English-only inclusion may omit perspectives from non-English-speaking regions.

Introduction

Cerebral palsy (CP) is one of the most prevalent childhood motor disabilities, with a significant global prevalence that varies from 2.95 to 3.4 per 1000 live births in low-income and middle-income countries (LMICs) to 1.5–1.6 per 1000 live births in high-income countries (HICs).^{1 2} Children diagnosed with CP (CwCP) often have a history of abnormal fetal development with non-progressive brain injuries, which leads to difficulties in postural as well as other motor abilities.³ This often results in difficulties performing activities of daily living like toileting, as it needs well-coordinated fine and gross motor skills.⁴ For a child, being able to perform toileting independently is a significant milestone, as it enhances the sense of autonomy, competence and dignity. However, in CwCP, the attainment of this skill may be hindered by concurrent motor, sensory and cognitive impairments associated with the condition.⁵

The role of parents of CwCP in their child’s toileting rituals is complex with their unique caregiving responsibilities, as they also have their own difficulties related to changing routines and environments and accommodating their child’s toileting needs while balancing their own physical and emotional demands.⁶ Understanding these perspectives of parents can play a critical role in developing our insights into the obstacles, facilitators, unmet requirements, need for adaptations and their lived experience.⁷ Managing toileting for CwCP can also impair parents’ overall well-being and family dynamics due to increased caregiving responsibilities and stressors.^{8 9}

Despite the importance of toileting for personal hygiene, dignity and social participation, there is a notable scarcity of evidence-based toilet training programmes tailored for CwCP.¹⁰ In LMICs, where access to specialised caregiving resources is often limited, understanding the parental role becomes even more crucial in addressing these caregiving gaps.¹¹ If these gaps are addressed, it can help many parents who lack the necessary tools and strategies to effectively manage their child’s toileting needs and face challenges in daily caregiving, which can in turn reduce their parental stress. Understanding parents’ perspectives on toileting management is crucial for developing supportive interventions that can enhance both the child’s functional independence and the overall quality of life for families affected by CP. With the above explained background and understanding of the need, this study aims to explore the current literature for the parental perspectives on toileting management for CwCP with a specific focus on examining various strategies implemented by parents, challenges faced and overall expectations regarding the process of toileting management. While doing this study, we hope to provide an in-depth understanding of parents’ experiences and highlight areas for future research and development of more targeted, practical and inclusive toilet education programmes beneficial for parents as well as CwCP.

Methods

Study design

Keeping in mind the nature of the diversity of studies available as well as meeting the needs of the study and providing a comprehensive overview of parental perspectives on toileting management for CwCP, We decided to conduct a scoping review methodology and thus will be able to systematically explore as well as collate the variety of current evidence in this area.

We will adhere to the Westphaln et al,¹² further adaptation of Arksey and O’Malley¹³ which includes six stages: (1) The identification of a research question, (2) The identification of studies relevant to the research question, (3) A selection of studies for inclusion in its review, (4) The charting of information and data within the included studies, (5) The collection, summarisation and reporting of its results and (6) The integration of expert consultation. To enhance clarity, this protocol will incorporate recommendations from the Joanna Briggs Institute, the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews) guideline and PRISMA-P (Preferred reporting items for systematic review and meta-analysis protocols)¹⁴ to ensure methodological rigour, transparency and systematic reporting. The following sections outline our step-by-step approach in accordance with the PRISMA-P checklist, which includes our criteria for research eligibility, sources of information, search strategy, study selection, data extraction and synthesis of results.¹⁵

Stage 1: identification of a research question

From the existing literature:

1. What strategies do parents use to manage toileting for CwCP?

2. What are the common challenges faced by parents in managing toileting for CwCP?

3. What are the unmet needs and expectations of parents regarding managing toileting in CwCP?

Stage 2: identification of studies relevant to the research question

To ensure a comprehensive and systematic literature review, the search strategy will be developed using the PCC framework (Population, Concept, Context), which is particularly suited for qualitative research reviews. This approach will be implemented in alignment with the PRISMA-ScR guidelines^{16 17} to ensure rigour and relevance in the identification and selection of studies.

• Population: the target population will comprise parents of CwCP aged under 18 years.

• Concept: the primary focus of the review will be parents’ perspectives, including their experiences, challenges, strategies and opinions related to the management of toileting for their CwCP.

• Context: the review will be limited to qualitative information that will examine these issues, published in English within the last 10 years, reflecting contemporary practices and experiences.

Stage 3: selection of studies for inclusion in its review

Criteria for considering the studies:

Inclusion criteria

The review will focus on studies published in the English language between January 2014 and December 2024 that specifically explore in-depth insights into parents’ views, opinions, experiences, or challenges in toileting management for their CwCP within the age range up to 18 years (table 1).

Table 1. Summary of inclusion and exclusion criteria.

Inclusion criteria	Exclusion criteria
Studies exploring parents’ views, opinions, experiences or challenges related to toileting management for their CwCP	Studies that do not focus on parents’ perspectives or only focus on toileting intervention, including management or strategies
Focus on CwCP aged under 18 years	Studies involving other comorbid physical disability conditions
Studies published between January 2014 and December 2024	Studies published more than 10 years ago
Qualitative or mixed-methods studies	Quantitative studies without qualitative inputs about the parents’ perspectives
Published in the English language	Published in languages other than English

CwCP, children with cerebral palsy.

Exclusion criteria

Studies that focus solely on interventions or management strategies, particularly if they do not directly explore the perspectives of parents, will not be included. Any studies involving CwCP who have other comorbid conditions will be excluded to avoid confounding variables that might influence the results, such as managing additional disabilities that significantly influence caregiving practices. Quantitative studies, or studies employing methods other than qualitative approaches, will also be excluded, as they may not provide the rich, detailed data necessary for understanding parental experiences.

Information sources and search strategies

While conducting our scoping review, a comprehensive search across several databases, including PubMed, CINAHL, Scopus, Web of Science and grey literature from Google Scholar, will be done using the strategic combination of keywords and Medical Subject Headings (MeSH) terms related to ‘cerebral palsy’, ‘parents’ perspectives’ and ‘experiences’. The Boolean operators such as ‘AND’, ‘OR’ and ‘NOT’ will be employed to refine the search strategically, as per the need. For example, the draft PubMed search strategy will be as follows: (‘Cerebral Palsy’(MeSH) OR ‘cerebral palsy’ OR CP) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toileting OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*). The draft search strategy will be pilot tested in PubMed to ensure relevance, identify additional terms and refine the search. The tentative search strategy for all the databases is provided in table 2.

Table 2. Database and tentative search strings.

Database	Search string
Scopus	((‘cerebral palsy’ OR cp) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toileting OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*))
PubMed	((‘Cerebral Palsy’(MeSH Terms) OR ‘cerebral palsy’ OR CP) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toileting OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*))
CINAHL	((‘Cerebral Palsy’ OR ‘CP’) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toilet* OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*))
Embase	(‘cerebral palsy’/exp OR ‘cp’) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toilet* OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*) AND ((infant)/lim OR (child)/lim OR (preschool)/lim OR (school)/lim OR (adolescent)/lim) AND (humans)/lim AND (english)/lim AND(2005–2024)/py
ProQuest	((SU(‘Cerebral Palsy’) OR ‘CP’) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toilet* OR ‘potty training’ OR ‘toilet training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother*))
Web of Science	TS=((‘cerebral palsy’ OR CP) AND (opinion OR perspective OR experience OR view OR felt OR need) AND (child* OR youth OR adolescent* OR children) AND (toileting OR ‘potty training’ OR ‘toilet (training’ OR self-care) AND (parent* OR family OR caregiver* OR father* OR mother* OR sibling*))

Additionally, we will conduct field searching for specific fields, such as TITLE, ABSTRACT and MeSH terms, to effectively filter out irrelevant articles. The filters for publication dates, limiting the search to up to 10 years, and language, for studies published in the English language, will be applied to further refine our search. As the study progresses, if necessary, we will adjust our search method to include more articles that may have been missed in a broader keyword search, thereby refining our study findings.

Selection of sources of evidence

Extracted data in CSV file format from each database will be stored in an encrypted Microsoft Excel sheet with controlled access restricted to the research team. Duplicates will be removed manually using Microsoft Excel. For each article, two independent reviewers (AAJ, AL, DS, MRS and SD) will conduct an initial screening of the titles and abstracts and then categorise articles as ‘included’, ‘excluded’ or ‘unsure’. Disagreements will be resolved through discussion, and a third reviewer (AD and MS) will be consulted if necessary. For articles marked as ‘unsure’, full texts will be retrieved and evaluated against the inclusion and exclusion criteria. This assessment will undergo screening to consider all relevant criteria. Articles that do not meet the criteria will be excluded, with documented reasons provided for transparency. The KMC Library portal’s single-window search of Manipal Academy of Higher Education, Manipal, offers a significant advantage for our review by streamlining the process of retrieving full-text articles.

The final selection of studies will be compiled, and any discrepancies in the decision-making process will be discussed among reviewers. A PRISMA-ScR flow diagram¹⁸ will be created to visualise the screening process, showing the number of records identified, screened, excluded and included. Detailed documentation of the data extraction process will be maintained, including any challenges encountered and the resolutions applied, in accordance with the PRISMA-ScR guidelines. Data files will be regularly backed up on a secure institutional drive.

Stage 4: charting of information and data within the included studies

Following the screening, data extraction will commence using Microsoft Excel developed specifically for this review. This form (table 3) will capture essential variables, including authorship, year of publication, study design, methodology, sample size, context of the study (eg, geographical location, cultural considerations), participant characteristics and key findings relevant to parents’ perspectives such as challenges, strategies and felt needs. Two independent reviewers will conduct data extraction to enhance reliability and reduce bias, with any discrepancies resolved through discussion.

Table 3. Data extraction framework.

Variable	Description
Author(s), year	Name of the author(s) and year of publication
Country/setting	Location where the study was conducted
Study design	Type of study (qualitative, mixed methods)
Sample size	Number of participants included in the study
Participant details	Parents’ characteristics (age, gender, relationship)
Child’s characteristics	Age, type of cerebral palsy
Methodological details	Tools, data collection methods
Key findings	Major themes and findings relevant to toileting management

NA, not applicable.

Stage 5: collection, summarisation and reporting of its results

The synthesis of findings will employ a thematic analysis approach as outlined by Braun and Clarke,¹⁹ aimed at identifying and interpreting common themes across the included studies and will be reported in accordance with the PRISMA-ScR guidelines. This process will begin with familiarisation, where reviewers will immerse themselves in the extracted data to gain a deep understanding of the content. Initial coding will involve identifying significant statements or phrases related to parents’ experiences with each code, aiming to uncover broader themes, such as parents’ challenges, insights into the child’s needs and the need for support for parents. These themes will be continuously reviewed and changed if needed to accurately represent the study findings.

These findings will be organised and presented in a structured manner, with detailed discussions wherever necessary. Information will be organised by theme as discussed above, and tables and charts will be used as necessary. Each theme and sub-theme will be discussed in detail, supported by direct quotations from participants wherever applicable, to provide a rich, context-based insight into the experiences of parents raising CwCP.

The discussion section will summarise and analyse these findings within the existing literature and the gaps in knowledge will be identified. Furthermore, future recommendations will be identified along with limitations of the review process, such as potential biases in study selection or limitations inherent in the included studies, in subsequent sections providing a balanced perspective.

Stage 6: integrate expert consultation

An expert consultation (MS) will be conducted to determine if the study findings can fulfil the initial objective. This consultation will also be held during the data analysis, interpretation and drafting stages until the final version of the manuscript is submitted.

Patient and public involvement

This scoping study did not engage patients or the general public in its design, implementation, reporting or dissemination plans.

Timeline

The anticipated timeline for this scoping review is shown in table 4.

Table 4. Timeline for the study.

Task	November 2024	December 2024	January 2025	February 2025	March 2025	April 2025	May 2025
Protocol development	●	●
Database search			●
Screening articles			●	●
Data extraction				●	●
Analysis and mapping					●	●
Drafting the review						●	●
Review and submission							●

● Indicates the period when the task will be performed.

Discussion

This scoping review will explore qualitative data from the past decade to understand the perceptions and challenges faced by parents of CwCP in the performance and management of toileting. It will discuss the parents’ insights into this area and attempt to highlight the challenges they face.

CP, being a complex neurological condition significantly impacting motor function as well as family dynamics, affects the parents and may create an imbalance in their role of caregiving. This review aims to synthesise qualitative data on parents’ perceptions of toileting management in children with CwCP, offering deeper insights into their experiences, highlighting gaps in existing knowledge and supporting the development of more effective family-centred care practices.

Additionally, this review will employ a valid methodology, including systematic searches across multiple databases using an appropriate search strategy, as explained in the previous sections. By focusing on qualitative studies, the review aims to capture contemporary and in-depth parental experiences. Qualitative methods are particularly well-suited for exploring the nuanced challenges faced by families, offering valuable insights into the lived experiences of parents. A systematic and transparent approach to data extraction and synthesis will ensure the reliability of findings. Methodological limitations of this protocol include restricting the review to English-language publications, which may lead to language bias. Only qualitative studies will be included; therefore, the findings will not reflect prevalence or quantitative trends. Additionally, grey literature searching will be limited and may not be fully exhaustive, which could result in missing relevant informal or unpublished evidence.

The review’s findings will inform healthcare providers, educators and policymakers about the unique needs of families with CP, facilitating the development of tailored interventions and resources. Insights into parental experiences can inform future research, including cross-cultural analyses and evaluations of interventions designed to enhance parental well-being and satisfaction.

Ethics and dissemination plan

As this review involves secondary data from published studies, no direct participant recruitment is required, and ethical approval is not necessary. The scoping review protocol has been registered on the Open Science Framework in December 2024 (Registration DOI: https://doi.org/10.17605/OSF.IO/73YQZ). We have developed the keywords for the search strategy and will run the search in predefined databases by January 2025. The findings will be submitted for publication in a peer-reviewed journal.