Views and Perspectives on Children With Complex Health Complaints and Complex Care Needs

Peter Almgren Lars Gelander Effective management of a child with complex care needs requires a comprehensive perspective that considers the physical, psychological and social factors influencing the child's symptoms and their underlying causes. This holistic approach is especially crucial for children who have frequent referrals or repeated visits to clinics and emergency departments. As Lygre et al. [1] describe in the study published in Acta Paediatrica, a broad perspective can easily be lost when a child's symptoms are evaluated individually. They state: “Managing patients with complex health complaints is challenging, because cumulative functional impairment may be overlooked when such complaints are considered individually” [1]. In the current study, the children suffered from less severe but very common problems but still, a low quality of life, a high school absence and parents being absent from work to a high degree were found. The functional impairment had a considerable impact on their everyday lives. It is well known that this imposes a risk for long-term consequences, for the individuals as well as for society as a whole [2]. The present study explores common symptoms, such as recurrent abdominal pain and headache, in paediatric patients who have undergone multiple referrals without an established organic diagnosis [1]. These cases highlight a broader challenge within the current medical care system. The management of conditions like paediatric obesity, for example, is often complicated by a high co-occurrence of psychiatric disorders, including autism or attention-deficit disorder [3]. A similar complexity exists in the treatment of paediatric feeding disorders [4]. Moreover, conditions resulting from child abuse, parental stress or emotional or physical neglect can present with symptoms that mimic medical problems like chronic pain [5] or growth disorders [6]. Consequently, managing psychiatric issues in this population often requires a broad, interdisciplinary approach. However, what can be stated concerning this population of children, whom we both observe and overlook in our routine clinical practice? How can we effectively approach this group, enhance our understanding, and more critically—how can we best address their needs, prevent suffering, and promote optimal health? In Region Västra Götaland, Sweden, we found that approximately 20% of all children had long-term and/or more extensive contact with the healthcare system, often necessitating coordinated interventions from either one or more of multiple specialists in paediatrics, child psychiatry, child habilitation, and a range of paramedical disciplines [7]. Furthermore, the number of children with special healthcare needs has significantly increased over time [7]. At the time of our article, there were no established definitions and also different methods to evaluate prevalence regarding children with complex care needs or special healthcare needs. In this regard, it is interesting to look at the definition ‘complex health symptoms’ as another variant on the same theme. It is also difficult to grade severity in the whole group since it could be a wide range from mild chronic illness to extremely severe. Lygre et al. have shown a way to display a more homogenous fraction of children using functional impairment through life quality scoring [1]. Is this maybe a good collective variable for children with complex care needs? In addition to our own study, we also performed structured interviews with parents of children with complex care needs. One mother cried out: ‘They basically send her lungs to the asthma specialists, the stomach to the gastroenterologist, the ears to the ENT. They send the joints and muscles to the physiotherapist. They send the nosebleeds and ear infections to the ENT doctors, but no one has ever thought: Hey, wait a minute: we have an 8-year-old with many different symptoms. Maybe we should consider that it could be one disease? I don't think we have got good help at the places we've been. They've tried to solve the problems they were referred for. It's just that I don't think any of them can solve the problems on their own—they have to talk to each other. So, they'll never come up with a solution’. Many parents gave similar reflections about an uncoordinated, compartmentalised approach based on how medical care is structured. At the same time, one should keep in mind that we should not see and treat children with health challenges as weak or pitiful—much more as individuals with a strong life force and healthiness, disregarding diseases or symptoms. It is always a balance between listening, seeing and caring for needs, but also giving space for life, resilience and a salutogenic perspective. Even a very sick child has a joyful spirit and need for normality and playfulness. The healthcare system has long been primed for a scrutinizing search for diseases and problems, which could cloud a more healing and holistic perspective. As important as it is to detect all symptoms and an eventually impaired quality of life, such paramount and simple things as deeper listening, understanding and connection might in themselves, in some cases, ease both symptoms and functional impairment. But what could be the solution regarding the healthcare system? Could we reorganise medical care for children to deliver a more holistic approach? The current study originates from Norway, where the healthcare system is organised to secure continuity with the same doctor in primary care. This has shown important benefits in reducing emergency care visits and even prolonging life [8]. But could secondary care for children also be reorganised to secure continuity and multidisciplinary teams, not just related to a specific medical problem, instead tailoring the needs for the specific child? And how can we reach early identification and intervention at the most appropriate level of care? Could, for example, primary care offer more early and pragmatic support and interventions, to avoid escalation to secondary care, and keep the continuity with your family doctor and team? These questions were further elaborated and put forth as proposals for decision by the Swedish government in a state investigation report, declaring the need for the National Board of Social Affairs and Health to analyse and confirm national definitions, care needs and suggestible actions for children with extensive and long-term needs of health care [9]. Their needs should also be met more proactively and integrated in the close care setting, this including a strong partnership and collaboration between primary care, student health and specialised care stakeholders. A special national health program for all children (from conception to 20 years of age) was proposed in the first report in the same investigation [10] aiming to strengthen this development in the Swedish healthcare system. The full program is right now in a final stage of construction and is to be presented in August 2026. This program also contains the function of “red flags” for children with complex health complaints or other early signals of distress or illness requiring swift, appropriate and coordinated interventions. In this regard, it is essential to overcome the compartmentalised organisation of services, both within but also between secondary care paediatrics and child psychiatry, in order to guarantee the delivery of an effective seamless multidisciplinary approach. We can no longer put a blind eye to the long-term consequences, for society and the individual [9, 10]. We need to deliver coordinated and seamless proximity care, integrating primary and specialist health care to children with complex care needs. Peter Almgren: writing – original draft, writing – review and editing, investigation, conceptualization, methodology. Lars Gelander: writing – original draft, writing – review and editing, investigation, methodology, conceptualization. The authors declare no conflicts of interest. There is no related data directly linked to this editorial.