Medical advances have increased the survival of children and adolescents with complex chronic conditions (CCCs), transforming their health care needs and posing challenges for health care systems.1 The delivery of comprehensive care for patients with CCCs and their families requires coordination across different levels of care, with primary care (PC) playing a key role.2,3 We conducted a study to assess how PC teams perceive the care they provide for children and adolescents with CCCs or pediatric palliative care (PPC) needs and to identify strengths, weaknesses, opportunities, and threats by means of SWOT analysis.

We conducted a descriptive study by means of an ad hoc 20-item questionnaire distributed between January and March 2025 to primary care health professionals in Basque Country public health system (pediatricians, family and community medicine physicians, and nurses in primary care pediatrics), which corresponded to a study universe of 633 health care professionals. Participation was voluntary and anonymous, and the questionnaire could be accessed through the Inkestagune survey platform, with the final sample including 220 responses (34.8% response rate). The analysis of sociodemographic characteristics, training in CCCs/PPC and self-perceived technical skills and the SWOT analysis were performed with SPSS version 23.

There was a substantial predominance of female participants (85%), and similar proportions of physicians (54.5%) and nurses (45.5%). Of the total participants, 43.2% had received specific training in CCCs (chiefly online), 39.5% knew the Sociedad Española de Cuidados Paliativos Pediátricos (PEDPAL, Spanish Society of Pediatric Palliative Care) and 34.1% were acquainted with the classification of life-limiting and life-threatening conditions of the Association for Children's Palliative Care (ACT)/Together for short lives.

Self-perceived technical skills were generally rated as intermediate to low (mean scores, 1.76 and 3.11 on a 5-point Likert scale from 1 to 5), particularly when it came to complex procedures (tracheostomy, home mechanical ventilation, gastrostomy/enteral feeding pump, palliative sedation) (Table 1). Nurses felt more competent than physicians in nearly every technique (P < .05) (Table 1). Among the nurses, specialized pediatric nurses felt more competent in skills related to respiratory and nutritional support and central vascular access (P < .05) (Fig. 1). In spite of this, 55.8% did not feel comfortable managing these patients (mean, 2.53; SD, 1.04), although 83.1% considered their management feasible at the primary care level with support from hospitals and a joint care plan. Overall, 25.9% of respondents reported having at least one patient with a CCC or PPC needs in their caseloads.

Figure 1.

Comparison of self-perceived technical skills between nurse groups.

The main weaknesses and threats identified by participants were the lack of specialized training and technical competencies, inadequate staffing, high staff turnover, the lack of recognition of the pediatric nurse role, inadequate scheduling, and lack of coordination across sectors (health care, social services, education), socioeconomic factors such as regional inequities, language barriers, poverty, and migration, and the potential negative impact of the emotional burden of providers on care quality. When it came to the strengths of PC teams, participants highlighted their close, long-term relationships with families; their knowledge of the family’s biopsychosocial context; the single patient record system; multidisciplinary collaboration; and the ability to keep children and adolescents in non-medicalized settings, facilitating the transition to adult care.

The identified opportunities included institutional initiatives, such as the 2023–2027 Strategic Plan for Palliative Care in the Basque Country; organizational tools for identifying patients with complex PPC needs; online and practical trainings and hospital rotations; and two-way consultations between PC and hospital-based providers to strengthen interprofessional communication. Participants also highlighted the importance of hospital-based care coordinators or case managers for the most complex patients and being able to communicate directly with them from PC.

Our findings were consistent with the previous literature. There is a trend toward greater female representation in pediatric care, and training in CCCs remains insufficient independently of actual experience.1,3 Specialized nurses stood out in terms of technical skills,4 and the feasibility of managing these patients at the PC level depends on interprofessional coordination.2,3 The SWOT analysis revealed structural barriers previously reported in other studies,2 but also showed that PC plays a central role in the delivery of comprehensive care.

On the other hand, in line with the recommendations of the World Health Organization (WHO), initiatives such as GO-PPaCS (Global Overview-PPC Standards) have established global standards that promote child- and family-centered pediatric palliative care5 and integrated models of care (IMOCs) have been found to improve care quality when critical and palliative care services are combined in coordination with PC.6

In conclusion, our study has highlighted gaps in technical training, particularly among physicians, as well as challenges in interprofessional coordination; however, institutional initiatives, corporate tools currently under development, and proposals for practical training offer opportunities to move toward more equitable and effective care. Finally, in adherence with international recommendations, it is essential that PPC services be integrated from the earliest stages, that ongoing training be provided, and that social determinants be addressed through child- and family-centered multidisciplinary approaches.