This study employed a modified hybrid three-round Delphi technique to develop comprehensive consensus-based guidelines to support parents of children with DD. The Delphi method was selected for its systematic approach to building consensus among experts while maintaining anonymity and reducing potential bias.¹¹ This methodology was particularly appropriate for our research aim, as it facilitates the integration of diverse professional perspectives across disciplines, a crucial factor in addressing the multifaceted challenges faced by families of children with disabilities. The study design adhered to the Criteria for Reporting Evidence in a Delphi Study (CREDES) guidelines.⁹ One panel member held postgraduate methodological expertise in Delphi consensus research, thereby strengthening design fidelity and execution (see Figure 1).

Purposive and snowball sampling were used to recruit participants from the Western Cape and Gauteng provinces of South Africa, spanning public-sector healthcare facilities, special education schools, disability NGOs and private practice settings. This geographic and sectoral spread was intentional to ensure ecological validity across urban, peri-urban and rural contexts. Twenty-one experts were initially approached through professional networks in paediatric disability care; 10 consented and completed all three Delphi rounds (participation rate: 48%). Participation breakdown by discipline: developmental paediatricians 2/4 (50%); special school heads 2/4 (50%); community health workers 2/4 (50%); social workers 2/4 (50%); NGO staff 1/3 (33%); family counsellor 1/2 (50%).

Following recommendations from²³ for multidisciplinary representation in consensus studies, the selection criteria required: a minimum of 8 years of direct experience working with families of children with DD, demonstrated expertise in at least one core domain of family support and willingness to participate in all three Delphi rounds.

The final panel comprised developmental paediatricians (n = 2), special school heads (n = 2), community healthcare workers (n = 2), social workers (n = 2), an NGO staff member (n = 1) and a family counsellor (n = 1). Panel members possessed field experience ranging from 8 to 20 years (mean = 12.5 years) and diverse educational backgrounds (from doctoral degrees to National Senior Certificate qualifications). Table 1 presents the panel’s demographic and professional characteristics.

The absence of parents of children with DD on the expert panel is acknowledged as a substantive limitation. It is addressed in full in the limitations of the discussion section.

The Delphi process was conducted between January and April 2024 and consisted of three sequential rounds, guided by CREDES reporting standards⁹:

Round 1: A comprehensive questionnaire exploring all 10 capability domains (see Figure 1) derived from the⁵ framework was distributed. Experts evaluated proposed guidelines for relevance, feasibility and potential impact on a 5-point Likert scale. Open-ended questions encouraged detailed feedback.

Round 2: A refined questionnaire focused on areas requiring further consensus development. Experts reviewed anonymised Round 1 feedback alongside preliminary consensus levels and then re-evaluated modified guidelines.

Round 3: The final round focussed on the five highest-consensus domains from Round 2, emphasising practical application and interdisciplinary collaboration strategies.

Between rounds, a face-to-face consultation with the panel was conducted. This session was facilitated solely by the principal researcher; participants did not interact with one another’s identifiable responses. All questionnaire responses were anonymised before circulation; the face-to-face session addressed only aggregated thematic clarifications. This design is accordingly described as a modified hybrid Delphi, consistent with the approach described by Keeney et al.¹¹ and Niederberger and Spranger.²⁴

Quantitative data from the 5-point Likert scale responses were analysed using descriptive statistics. Consensus was defined as ≥ 80% agreement (combined ‘agree’ and ‘strongly agree’ responses), consistent with the threshold recommended by for healthcare Delphi studies.^9,12 This threshold was pre-specified and was achieved across all five priority domains by Round 3.

Qualitative data underwent thematic analysis following.²⁵ Two researchers independently coded the data; discrepancies were resolved through discussion with a third researcher. The progressive filtering approach reflects the findings in²⁶ that targeted consensus-building produces more implementable guidelines.

The final guidelines framework was developed through systematic integration of quantitative consensus levels and qualitative thematic analysis, with expert insights organised by the five priority capability domains. For each domain, thematic categories captured were: rationale and expert consensus; resource considerations; cultural contextualisation; and implementation barriers, consistent with²⁷ recommendation for capability domain frameworks.

This study received ethical approval from the Research Ethics Committee of the University of the Western Cape (Ethics Reference Number: BM23/1/10). All participants provided written informed consent. Confidentiality was maintained by anonymising all responses between rounds. Withdrawal was exercisable at any stage by written email to the principal investigator without penalty. All data are stored on a password-protected, university-managed institutional server and will be retained for a minimum of 5 years in accordance with the Protection of Personal Information Act (POPIA, Act 4 of 2013) and institutional research ethics policy. The research adhered to the Declaration of Helsinki.

The Delphi study recruited a diverse panel of 10 experts (n = 21 approached; participation rate 48%; see Tables 1a and 1b in Methodology for full breakdown). Following the recommendations from on multidisciplinary representation, the final panel comprised developmental paediatricians (n = 2), special school heads (n = 2), community healthcare workers (n = 2), social workers (n = 2), NGO staff (n = 1) and a family counsellor (n = 1).²³

All expert quotations in this section are presented in italics for consistency. The following subsections address each of the five priority capability domains: Life, Bodily Health, Emotions, Affiliation, and Control over Environment.

Our findings significantly advance the application of the⁵ capabilities approach for parents of children with DD. While previous work has applied this framework broadly to disability studies,^31,32 our guidelines represent one of the first systematic operationalisations of capabilities theory specifically for this parent population, developed through an interdisciplinary consensus-building process. The five priority capability domains demonstrate how parental capabilities extend beyond mere functional activities, encompassing genuine freedoms and real opportunities to achieve the life they have reason to value.^5,6

The re-conceptualisation of the ‘bodily health’ capability domain is particularly notable. For parents of children with DD, this domain necessarily incorporates access to respite care and healthcare navigation skills, challenging individualistic interpretations of capabilities theory.²¹

A significant limitation of our study is the absence of parents of children with DD on the expert panel. While professional expertise provided valuable insights, future research should actively incorporate parental lived experience through mixed expert panels that position parents as co-creators consistent with emancipatory disability research principles.³³

In keeping with our previously declared limitation of excluding parents from this research study, the current study design reflects the professionally-dominated model that the disability studies literature critiques.³⁴ We acknowledge this as an inherent tension that future research should address by positioning parents as co-researchers from the outset.

The guidelines developed through our Delphi process have significant implications for professional–parent power dynamics. Traditionally, disability service models have positioned professionals as experts and parents as recipients of knowledge.³⁴ In contrast, our service delivery model explicitly incorporates collaborative decision-making and emphasises family-led goal-setting.

It is important to contextualise the professional hierarchy within multidisciplinary paediatric disability care rather than viewing it as inherently problematic. Each discipline contributes unique, non-substitutable expertise: the developmental paediatrician brings diagnostic precision; the social worker brings family systems expertise; the community health worker brings community contextual knowledge; the special educator brings pedagogical strategies. This hierarchy serves the best interests of the child and family when functioning well. The tension lies not in the hierarchy per se, but whether parental agency is meaningfully incorporated at every stage of care, not only at intake. In current practice, parental input is typically gathered during intake assessments but is not systematically revisited at goal reviews, care planning or service evaluation. The proposed guidelines introduce structured mechanisms for incorporating parental expertise throughout the process.

As notes, even well-intentioned assessment processes can reinforce power asymmetries when they prioritise professional knowledge systems over lived experience. Our guidelines propose structured mechanisms for incorporating parental expertise throughout assessment and implementation, in contrast to current practice, where parental input is collected at intake but not revisited during subsequent goal reviews or service evaluations.³⁵

We wish to affirm the considerable expertise, commitment and dedication of interdisciplinary team members working in this field. Rather than individual blame, sustained investment in programme-level training development is needed. Professionals must develop competencies in interprofessional collaboration, shared decision-making and cultural humility, as well as advanced cross-disciplinary skills that extend beyond most single-discipline training. South African evidence confirms these remain underdeveloped in health and rehabilitation curricula,^10,36 requiring longitudinal programme-level change, including supervised interprofessional placements and structured reflective practice.

A critical consideration is how guidelines might function across different resource settings, particularly relevant in the South African context, characterised by marked health system inequities between the public and private sectors and between urban and rural areas.³⁷ Our findings align with,³⁸ which states that successful implementation in low-resource settings requires prioritising capability domains based on family preferences rather than professional assumptions. Necessary adaptations might include training community health workers to fulfil multiple roles: a concrete South African example is the Ward-Based Outreach Team model, in which community health workers have been successfully upskilled to provide first-line psychosocial support, referral navigation and home-based rehabilitation guidance,³⁹ demonstrating the feasibility of expanded roles with appropriate supervision and training frameworks.

To address contextual variations, we propose an adaptability framework with four implementation tiers:

Building feedback mechanisms for both families and professionals to evolve guidelines based on lived implementation experiences is collaboratively embedded across all implementation tiers.

We propose a staged implementation approach:

This approach explicitly acknowledges findings that sustainable implementation of complex health guidelines requires both bottom-up clinical innovation and top-down structural and policy alignment; professional training alone is insufficient without organisational and system-level alignment; neither alone affects lasting change.⁴⁰

The knowledge translation process must include accessible formats for diverse stakeholders. Professional guidelines require different formats than parent-focused resources, although both should reflect the same underlying capability principles.

Several limitations require explicit acknowledgement. Firstly, the expert panel was small (n = 10), limiting the comprehensiveness of the consensus and statistical representativeness, a recognised trade-off in purposive Delphi sampling.¹¹ Secondly, and most critically, parents of children with DD were absent from the expert panel; guidelines thus reflect professional consensus rather than co-produced knowledge, a substantive epistemic limitation.^14,33 Thirdly, the study was conducted in two South African provinces; direct generalisability to other national or cultural contexts requires local contextual validation. Fourthly, the study presents consensus-based recommendations rather than outcomes-evaluated guidelines; future research should test the impact on parental well-being and child outcomes using validated measures. Fifthly, the hybrid Delphi design carries an inherent risk of subtle social influence in the face-to-face component, which is mitigated by the use of aggregated feedback and sole facilitation by the principal researcher, but not eliminated.