Patient-reported outcome measures (PROMs) and shared decision-making (SDM) are increasingly valued in Pediatric physiotherapy (PPT). Online PROM portals can facilitate PROM use and SDM, but require adaptation for its use in PPT. This study aimed to adapt the online KLIK PROM portal for primary PPT, identify preferences for data visualization, and explore integration of SDM. A co-design approach was used. Two co-creation sessions including adolescents, parents, patient representatives, PPTs, and researchers were organized and results were discussed in an analyze-session with the research team. Subsequently, a demo version of the adapted KLIK portal was tested for usability in twelve individual think aloud sessions with parents, adolescents, and PPTs. After discussing results in a second analyze-session, the final version of the KLIK PROM portal was developed. Thematic content analysis was applied to all qualitative data. Key adaptations included automatically selecting predefined PROM sets based on the patient registration form depending on complaints and age, and the possibility to schedule a series of PROMs linked to evaluation moments. Literal responses on items without color coding were preferred by patients and parents, while PPTs favored line graphs with heatmaps indicating concerning scores. Both patients and PPTs emphasized the importance of discussing results in person using child-friendly visualizations. Aggregated data were valued for supporting reflective practice. SDM was integrated into the portal through information pages, subtle nudges to encourage PPTs and patients to engage in SDM, and by motivating patients to complete PROMs by personalizing the portal. The adapted KLIK portal is ready for pilot implementation in primary PPT. Updates should be applied based on user feedback from ongoing evaluations. While PROM use can facilitate SDM, impact on SDM depends on effective patient-clinician dialogue and should be further investigated.

Objective To support clinical decision-making and treatment evaluation, outcome measures need to accurately detect changes in patient health. As such, we aim to assess and compare the responsiveness of the v2.0 and v3.0 self- and proxy-reported PROMIS® Item Banks for Mobility, Pain Interference and Upper Extremity in the context of pediatric physical therapy (PPT). Methods Children (8-17 years), and parents (of children aged 5-17 years), completed three pediatric PROMIS® item banks v2.0 (Mobility, Pain Interference, Upper Extremity) while following PPT treatment (baseline) and six months later (follow-up). Eligible participants expected to progress between baseline and follow-up. Responsiveness was evaluated by hypotheses testing for four multimethod approaches: (1) comparison of PROMIS and two legacy instruments; (2) known-group responsiveness, based on physical complaints of the child, and (3) based on focus of PPT intervention; (4) anchor-based method, based on ratings of change.Instruments were deemed responsive if ≥75% of results were in line with hypotheses. To compare v2.0 and v3.0, data reported on v2.0 were collapsed/recalculated to match v3.0. Subsequently, all above hypotheses were investigated for v3.0. Versions were compared on number of hypotheses met. Results Follow-up was completed by 63 children and 80 parents. Sufficient responsiveness was observed for the pediatric Mobility, and pediatric and parent-proxy Pain Interference item banks, in v2.0 and v3.0. The parent-proxy Mobility v2.0 and v3.0 item banks showed 70.0% of results in line with hypotheses. V2.0 and v3.0 did not differ in responsiveness. Due limited reported change, it was not possible to perform the analyses for Upper Extremity. Conclusion The PROMIS pediatric Mobility, pediatric Pain Interference and parent-proxy Pain Interference item banks, in both v2.0 and v3, demonstrate sufficient responsiveness in PPT, supporting their use for reliably capturing change over time in clinical practice. The parent-proxy Mobility v2.0 and v3.0 showed promising indications of responsiveness. Impact statement This study demonstrates that PROMIS pediatric Mobility, as well as the pediatric and parent-proxy Pain Interference, v2.0 and v3.0 item banks are effective tools for detecting change over time in children in pediatric physical therapy. This supports their use in clinical research and practice to enhance treatment evaluation and patient care.

The study aim was to evaluate the measurement invariance of the Parental Burnout Assessment (PBA), across parents of children with complex care needs (CCN) and parents of children without CCN, compare burnout scores between these groups, and explore how socio-demographic characteristics relate to parental burnout within each parenting context. The PBA was completed by 337 parents of children with CCN and 329 parents who did not have a child with CCN. Confirmatory factor analysis (CFA) supported the theoretically proposed four-factor structure of the PBA, encompassing exhaustion in the parental role, feelings of being fed up, contrast with pervious parental self, and emotional distancing. A subsequent second-order CFA indicated that these four dimensions could be explained by a single overarching factor, parental burnout. Multigroup CFA supported scalar invariance across groups for both the four-factor model and the second-order model, indicating that the observed group differences in PBA scores reflect true differences rather than measurement bias. Parents of children with CCN reported significantly higher PBA scores than parents of children without CCN (d = 1.33, p < .001). Among the socio-demographic characteristics examined, we found that being a mother of a child with CCN was associated with substantially higher PBA scores compared to being a father of a child with CCN. This gender difference was smaller among parents of children without CCN. Parental age, ethnicity, educational attainment, being single parent, the number of children, and minimum and maximum age of the child were not associated with higher parental burnout scores. Findings underscore the heightened vulnerability for parental burnout among parents of children with CCN compared to parents of children without CCN while also providing further evidence for the suitability of the PBA as a research instrument for assessing parental burnout across the caregiving context of being a parent of a child with CCN or not.

Objective:Children frequently experience fear and distress during medical procedures. 'My Hospital Passport' app was co-created to help children identify and share their preferred coping strategies. This study explored the feasibility and acceptability of the app in clinical practice. Methods:A qualitative feasibility study was conducted in a tertiary pediatric hospital. Semi-structured interviews were held with children (n = 3), parents (n = 8), and HCPs (n = 10) who had used or supported use of the app. Data were analyzed using reflexive thematic analysis. Results:All participants viewed 'My Hospital Passport' as a valuable communication tool to enhance predictability, trust, and shared understanding around medical procedures. For children and parents, completing the app encouraged reflection and dialogue about coping preferences, contributing to a sense of control and calm. When HCPs acknowledged these preferences, it fostered partnership and predictability. However, when preferences were overlooked, children and parents reported disappointment. HCPs recognized the app's potential to support communication and continuity of care but noted barriers such as lack of integration with electronic health records and limited time during clinical routines. Conclusion:'My Hospital Passport' is an acceptable and feasible tool that helps children prepare for medical procedures by articulating and sharing their coping strategies. Its successful use, however, depends on active engagement by HCPs and structural embedding in care routines. Organizational and technological integration are essential to ensure consistent recognition of children's preferences and sustainable implementation in practice. Innovation:'My Hospital Passport' enables two-way communication on coping strategies, improving procedural support.

Objectives To examine psychometric properties of three Dutch-Flemish pediatric and proxy PROMIS® item banks in pediatric physical therapy (PPT). Methods Children (8–18 years) attending PPT in the past year, and their parents, completed Dutch-Flemish PROMIS® Mobility, Upper Extremity, Pain Interference item banks (v2.0). Structural validity, internal consistency, reliability, test-retest reliability, known-group validity, comparability and child-parent agreement were assessed. Results 244 children and 361 parents participated. A third of the children (37.1%) had a chronic medical diagnosis. The physiotherapeutic goals of the children in our sample were related to musculoskeletal (57.3%), neurological (28.8%), gastrointestinal, endocrine, and/or hematological (0.8%), cardiovascular/respiratory (7.8%), mental health (2.5%), and behavioral (13.3%) conditions. Structural validity, internal consistency, test-retest reliability, comparability and child-parent agreement were sufficient. Children in PPT scored lower on all three PROMIS instruments compared to the general pediatric population (p < 0.05). PROMIS Mobility and Upper Extremity scores were reliable for clinical scores. PROMIS Pain Interference scores were reliable for population average and clinical scores. Computerized adaptive testing provided most information per item. Conclusion PROMIS v2.0 pediatric/proxy Mobility, Upper Extremity, and Pain Interference instruments displayed sufficient validity in PPT and sufficient reliability for clinical scores. They are appropriate for use in PPT. Impact statement This study provides the first comprehensive validation of the scores on the PROMIS v2.0 pediatric Mobility, Upper Extremity, and Pain Interference item banks for use in pediatric physical therapy, demonstrating that these instruments are suitable for clinical practice. By showing that computerized adaptive testing offers most information per item and that parent-proxy scores are reliable when self-report is not possible, this research advances the science and practical application of PROMs in heterogeneous pediatric populations and highlights key areas for future improvement.

Participatory research practices are increasingly being initiated between patients, caregivers, and researchers in traditional health research. We focus on the integration of Patient and Public Involvement and Engagement (PPIE) in health research in a setting where PPIE has become a strategic aim and examine institutional structures through the experience of patients and relatives invited into PPIE activities. Despite the increasing emphasis on PPIE to enhance research quality and healthcare outcomes in Denmark and internationally, our findings show that PPIE is currently located on the fringes of the research process. Consequently, researchers who are constrained by existing institutional structures and processes decide how to make use of patients' and relatives' input. Patients and relatives often feel valued for their unique perspectives in certain parts of the research process, and being part of research gives them unique insights into the healthcare institution. However, the strong institutional context and translocal relations end up shaping their input rather than their input actually shaping research. Through institutional ethnographic methods and the coproduction of the study with patients and relatives, we highlight the complex interplay and negotiation of roles between institutional demands and the personal experiences of being a patient or relative in a research collaboration. By understanding the experience of patients and relatives invited into PPIE activities and how those experiences are influenced, the study shows the importance of how PPIE is implemented within current research institutions by attending to the people who are incorporating it into their praxis as well as to the institution context. The insights gained from this study prompt a reconsideration of roles and legitimate contribution, if PPIE is to truly make a difference in research collaborations.

Background Parents caring for children with neurodevelopmental disorders (NDD) face unique and ongoing challenges that impact family well-being. Peer support from individuals with shared lived experiences can offer recognition, shared understanding and empowerment. Despite its promise, peer support for parents of children with NDD remains largely informal, under-researched and poorly integrated within standard healthcare, limiting its potential accessibility and impact. Little is known about what parents seek in peer support, how they experience it, and which factors facilitate meaningful engagement. This study therefore aimed to explore parents' perceptions of peer support, focusing on uptake, impact and conditions influencing its effectiveness.Methods A survey co-created with parent-carers collected quantitative and qualitative data on perceptions, needs, concerns and barriers related to peer support. The online survey was distributed via parent organisations. Descriptive statistics summarised participant characteristics and peer support uptake, while thematic analysis identified key experiential themes from open-ended responses.Results Among the 225 participating parents (89% mothers), 77.3% expressed a need for peer support, mostly because friends and family did not fully understand their situation. Of these parents, 65.6% reported finding peer support, mostly informal initiatives. Thematic analysis of participants' comments revealed four key categories describing the experience with and need for peer support: (1) support, (2) mutual learning, (3) connection by recognition and (4) experiencing no judgement. Also included in the results are concerns reported by parents and factors facilitating or hindering successful peer support.Conclusion Parents of children with NDD valued peer support for emotional connection, practical advice and shared understanding. Preferences are highly individual, emphasising the need for tailored peer support. These findings may guide the design and implementation of peer support initiatives aligned with parents' needs and preferences. Future research should focus on how the full potential of peer support for these parents can be unlocked.

Objective Shared Decision Making (SDM) is a collaborative process between patients and clinicians. A structured approach for SDM in pediatric physical therapy is lacking. This two-phase study aimed to 1) explore how and when to apply SDM in pediatric physical therapy in primary healthcare, and to identify barriers and facilitators influencing its use, and 2) adapt an SDM model for use in pediatric physical therapy and propose strategies for implementation. Methods The study consisted of two phases. In Phase 1, six focus groups were conducted, two per participant group: adolescents (12-18y, n = 11), parents of children (4-18y, n = 9), and pediatric physical therapists (n = 6). A qualitative survey among 46 pediatric physical therapists validated focus group results. An inductive analysis explored how and when SDM should be applied, and a deductive analysis identified barriers and facilitators by linking codes to Consolidated Framework for Implementation Research (CFIR) domains. In Phase 2, the research team integrated results into an existing goal-based SDM-model, and implementation strategies were selected using the CFIR-Expert Recommendations for Implementing Change tool. Results SDM can begin at intake and goal setting, with ongoing, individualized involvement of children and parents throughout therapy. When comparing therapy options, treatment frequency, duration, homework, expectations, and possibilities at home can be discussed. Barriers included time constraints and the challenge of balancing multiple perspectives, while facilitators were the possibility to adapt SDM conversations per family and a supportive practice culture. A goal-based SDM-model was adapted for pediatric physical therapy. Implementation strategies identified were professional training, use of SDM tools, sufficient contact with parents, time to learn SDM, a supportive team culture, and empowering parents and children. Discussion This study provides guidelines for implementing SDM in pediatric physical therapy in primary care. A multifaceted implementation approach, guided by this study’s implementation strategies, may enhance SDM integration into clinical practice.

Communication Brain-Computer Interfaces (cBCIs) are a promising tool for people with motor and speech impairment, in particular for children and young adults with communication impairments, for example due to cerebral palsy (CP). Here we aimed to create a solid basis for the user-centered design of cBCIs for children and young adults with severe CP by investigating the perspectives of their parents/caregivers and health care professionals on communication and cBCIs. We conducted an online survey on 1) current communication problems and usability of used aids, 2) interest in cBCIs, and 3) preference for specific types of cBCIs. A total of 19 parents/caregivers and 36 health care professionals who interacted directly with children and young adults (8-25 years old) with severe CP, corresponding to Gross Motor Function Classification System level IV or V, participated. Both groups of respondents indicated that motor impairment occurred the most frequently and had the greatest impact on communication. The currently used communication aids included mainly no/low-tech aids and high-tech aids. The majority of health care professionals and parents/caregivers reported an interest in cBCIs, with a slight preference for implanted electrodes over non-implanted ones, and no preference for either of the two proposed mental BCI control strategies. Results indicate that cBCIs should be considered for a subpopulation of children and young adults with severe CP, and that in the development of cBCIs for this group both visual stimuli and sensorimotor rhythms, as well as the use of implanted electrodes, should be considered.

Aim: To understand experiences and therapy needs of parents with an infant with unilateral perinatal brain injury and at high risk for unilateral spastic cerebral palsy in the first year. Patients and Methods: Sixteen parents (from 8 children with unilateral spastic cerebral palsy, 3 without) diagnosed with unilateral perinatal brain injury participated in semistructured interviews. Data were analyzed using thematic analysis. Results: The overarching theme, "an unexpected journey," included 4 subthemes: (1) "A roller coaster start"-stressful initial experiences on a neonatal intensive care unit; (2) "Wishing for a crystal ball"-need for information on (future) development; (3) "Reaching for the stars"-value of therapist guidance in supporting infant development; (4) "Growing seeds of confidence"-increased parental confidence in their child's development and their role. Conclusion: Parents have information needs about their child's (future) neurodevelopment. Physical or occupational therapists provide information, monitor motor progress, and guide parents in supporting development and can offer needed reassurance.

Objective: Perinatal brain injury can result in long-term neurodevelopmental sequelae. To examine the most significant consequences from a patient perspective, this questionnaire study explored the strengths and difficulties in daily functioning after perinatal brain injury, by child self-report and parent-proxy report. Study design: Cross-sectional questionnaire study of participants ≥8 years of age born with hypoxic-ischemic encephalopathy treated with therapeutic hypothermia, or with perinatal arterial ischemic stroke, and their parents. Open-ended questions regarding strengths and difficulties in daily functioning were analyzed by thematic analysis using the International Classification of Functioning, Disability and Health as coding framework. Results: Of the 102 participants (hypoxic-ischemic encephalopathy: n = 50, perinatal arterial ischemic stroke: n = 52) with a median age of 12.4 (range 8-25) years, 81% of the questionnaires (n = 83) were filled out by both participants and parents. Participants mainly reported participation in recreational activities and school-related learning abilities as strengths, while parents most frequently highlighted their child's personality traits. Difficulties were reported by 91% of participants and 76% of parents. Both parents and participants often mentioned difficulties with cognitive functioning including attention, memory, and processing speed. Furthermore, parents described social skills and movement difficulties, while participants mostly reported learning difficulties. Half of the parents reported that the difficulties significantly impacted their families' daily lives. Conclusions: Children and young adults with a history of perinatal brain injury face a variety of challenges in their everyday lives, emphasizing the importance of taking the full spectrum of sequelae into account in care, counseling, and future research.

Patient-reported outcome measures (PROMs) can be used as tools for understanding patients’ health perceptions. Gaining a comprehensive understanding of the landscape of PROs and PROMs within PPT, along with identifying potentially valuable (generic) PROs for the specific context and population, provides a valuable foundation for developing recommendations on PROM use in PPT. To provide a scoping review of measured PROs in studies describing PPT interventions. Additionally, to provide an overview of used PROMs in PPT. This review is conducted based on the PRISMA-ScR Checklist. A systematic search was conducted in Medline (2013–2023). Peer-reviewed studies for children aged 4–17 years with problems in physical functioning, were included when a described intervention was related to PPT or exercise therapy, and the studies reported PROs or used PROMs (proxy/self-reported). PROs were extracted verbatim, categorized and labelled based on the Alonso Valderas model. A graphical overview was created to synthesize PROs measured per diagnosis. 172 studies were included. We identified 168 measured PROs which could be categorized into 40 unique PROs, measured with 158 PROMs. Most measured PROs fell in the ‘Functional Status – Activities and Participation’ and ‘Symptom Status’ classification of the Alonso and Valderas model. An excessive number of PROs and PROMs is used in PPT, which complicates standardization and implementation of PROMs. Harmonization of PRO(M)s in PPT is needed to address this problem. Therefore, a generic core set of PROs and PROMs should be developed for daily practice and research within PPT.

Siblings can have multiple roles in the lives of each other over time, including the roles of friend, role model, and caregiver at different time points. These roles may be different for siblings of youth with disabilities, and yet, there are limited resources to support siblings in the health, rehabilitation, and education systems. This protocol outlines a study for which the primary aim is to develop and evaluate a toolkit to support youth and young adult siblings to initiate conversations about their roles and responsibilities with their sibling(s) with a disability and family. The secondary aim of the study is to test a framework for and evaluate the process of partnered research with siblings and other family members. This qualitative descriptive study will adopt a participatory approach where a Sibling Youth Advisory Council (SibYAC) of young adult siblings of individuals with a disability and/or chronic health condition will be engaged as research partners. The long standing partnership with the SibYAC and our team has informed the need to conduct this study. This study will be conducted in two stages to address our primary aim. First, a co-design workshop will be held with siblings (ages 14 to 25 years old) to develop the content and format of the toolkit. Second, focus groups will be conducted with siblings, parents, and healthcare professionals to provide feedback on the toolkit prototypes. Data will be analyzed using directed content analysis with implementation science frameworks as a guide. Specifically, the Theoretical Domains Framework and COM-B model will be used to identify toolkit elements focused on supporting siblings, and the Consolidated Framework for Implementation Research (CFIR) will provide considerations about settings for where the toolkit could be implemented in the future. The secondary aim is addressed where our partnership with the SibYAC will be evaluated through formative discussions and the Public and Patient Engagement Evaluation Tool. This study protocol advances the methods and rigour in participatory research with young people, including siblings. This study is the first step towards the development of a toolkit to support siblings of persons with disabilities to foster dialogue between families, health and education professionals about their roles. Clear expectations about family roles can promote positive health and wellbeing for siblings and the whole family. Siblings can have different roles in the lives of each other, such as a friend, role model, or caregiver. There are few supports for siblings who are youth and young adults of individuals with disabilities in the fields of health, rehabilitation, and education. This manuscript describes the process to creating and testing a toolkit to help youth and young adult siblings with their sibling(s) with a disability and family. In this study, we partnered with siblings as members of our research team who highlighted the importance of conducting this study. This study will be conducted in two parts. First, a workshop will be held with siblings (ages 14 to 25 years old) to discuss information to be included in the toolkit and how the toolkit should look like. Second, we will have conversations with groups of siblings, parents, and healthcare professionals who can provide feedback on the toolkit. We will analyze the data to see what kind of information should be included in the toolkit and how the toolkit can be delivered. We will use tools to study how we can improve our partnership with siblings and researcher. This study is the first step towards creating a toolkit to support siblings of persons with disabilities. The toolkit can guide siblings in having conversations with their families and healthcare professionals about their roles. It is important to have open and clear communication about the roles that siblings and families have, ultimately supporting positive health and wellbeing of siblings and the whole family.

OBJECTIVES:This study investigated psychometric properties and reference values of the Patient-Reported Outcomes Measurement Information System (PROMIS®) pediatric v2.0 Mobility, Upper Extremity, and Pain Interference item banks, short forms and computerized adaptive tests (CATs) in the Dutch general population, supplemented with a clinical sample to improve low-end item parameter estimates. STUDY DESIGN AND SETTING:Children (aged 8-18 years) completed PROMIS® item banks and legacy instruments (Pediatric Quality of Life Inventory 4.0 subdomain Physical Health, Numeric Pain Rating Scale). Structural validity of item banks was evaluated by fitting a graded response model and inspecting item-fit statistics. Reliability of item banks, short forms, and post-hoc CATs was expressed as standard error of measurement/theta. To compare measurement efficiency of instruments, relative efficiency was calculated. Construct validity was assessed by correlating item banks with legacy instruments. Differential item functioning between Dutch and US samples was evaluated. RESULTS:Seven hundred eighty three children participated: 555 children from the general population and 228 children receiving physical therapy. Structural validity was sufficient for all banks. PROMIS® Pain Interference was reliable at the sample mean (standard error of theta < 0.32) and up to 2 standard deviations in the clinically relevant direction (indicating worse health). PROMIS® Mobility and Upper Extremity scales were reliable in the clinically relevant direction, but less so within the normal range. CAT outperformed other assessment methods in efficiency. Construct validity was sufficient. No items displayed differential item functioning. CONCLUSION:The PROMIS® v2.0 pediatric Mobility, Upper Extremity, and Pain Interference item banks displayed sufficient validity in the Dutch general population and sufficient reliability in the clinically relevant direction.

The neurodiversity approach recognizes autism as a natural variation of human experience, emphasizing unique strengths while acknowledging social and behavioral challenges that may affect quality of life. Peer support, based on shared experiences and mutual understanding, has shown benefits in mental health care, yet its impact for autistic individuals remains underexplored. This review is of peer-support programs for individuals with autism, focusing on impact, facilitators, and barriers. A systematic literature review was conducted using Cochrane Library, Web of Science, PubMed, Embase, PsycINFO, and Sociological Abstracts. Studies involving peer-support programs for autistic individuals aged 12 and older were selected. Fifteen articles described 12 unique peer-support programs with varying goals, such as enhancing personal development. Studies reported diverse improvements, including enhanced well-being, self-esteem, and academic performance. Many participants valued connecting with peers in an autism-focused context. Most articles discussed some facilitators and barriers. Peer support shows promising benefits for autistic individuals, fostering empowerment and well-being. However, the methodological limitations of the included studies, such as small sample sizes and lack of control groups, limit the strength of these conclusions. Future research should therefore use more robust research methods and investigate accessibility and potential risks to optimize peer support for this population.Lay AbstractConnecting through peer support: Understanding the impact of peer-support programs on individuals with autism and exploring barriers and facilitators.Aim and Purpose of the Research: This study aims to explore the impact of peer-support programs for autistic individuals. Peer support is defined as a supportive relationship between people with shared lived experiences. This review examines the impact of these programs on autistic individuals and identifies key challenges and facilitators that may influence outcomes.Background: Autism, characterized by differences in social interaction and behavior, can affect many aspects of daily life, including social and academic functioning, which can lead to a reduced quality of life. While peer support has proven beneficial in general healthcare, its potential for autistic individuals remains underexplored. Peer-support programs may offer mutual understanding and emotional support, making them a promising approach to improving well-being for people with autism.Methods: A systematic review was conducted using multiple databases to identify research articles published up to January 17, 2024. Studies included focused on peer-support programs for autistic individuals aged 12 and older, employing methods such as interviews or questionnaires to assess their impact.Results and Importance: The findings indicate that peer-support programs generally have a positive impact, including improved self-esteem, academic performance, and overall well-being. Participants valued the opportunity to connect with others with similar experiences. Although the findings are promising, most studies were small and low quality, so more research is needed. Future research should also investigate the factors contributing to successful peer support and explore ways to optimize these programs for autistic individuals.

Background: Parental burnout has been proposed as resulting from a persistent imbalance between stress-enhancing factors (demands/ risk factors) and stress-alleviating factors (resources/ protective factors). Parents of children with complex care needs (CCN) face this imbalance more often than parents in general. To address this, we need to know which factors are considered as risk and protective for burnout from the perspectives of parents of children with CCN. To facilitate targeted interventions, this study sought to explore both risk and protective factors associated with burnout as perceived by parents of children with CCN.Methods: We conducted semi-structured interviews with 38 parents, who recognized or identified themselves with burnout-related thoughts and feelings. Parents were selected for maximal variation, based on parental, child, and family characteristics. The data was analyzed through inductive thematic analysis.Results: Fifteen themes, divided in three categories were identified: 1) ‘the parent’ encompassing factors intrinsic to the parent, such as emotional factors and internal drivers, and physical health; 2) ‘the environment interacting with the parent’ including organization of care, social support, and socio-economic factors; and 3) ‘the sum of all factors’ – themes underscoring the collective impact of the context including the caregiving and parental responsibility, and the perception of no option but to endure. Most factors were identified as both risk and protective factors, underscoring the dynamic nature of burnout.Conclusion: Participating parents ascribed burnout to unique combinations of risk and protective factors. Notably, these factors extended beyond the personal sphere to encompass societal structures that current conceptual models for dealing with burnout often ignore. From the perspective of parents, broad multisystem approaches to address parental burnout would likely appear most relevant.