Current Problems in Pediatric and Adolescent Health Care最新文献

Given the widespread impact of child trauma, it is important that child- and family-serving systems adopt trauma-informed care. Because of their integral relationships with families, pediatricians and family medicine physicians play critical roles in disrupting negative societal and developmental cascades for trauma-exposed youth through their potential for early identification and intervention. When implemented alongside organization-wide trauma-informed care practices, trauma screening is one concrete trauma-informed care practice that has shown both feasibility and positive impacts on pediatric healthcare. In support of this practice, the Care Process Model for Pediatric Traumatic Stress (CPM-PTS) helps pediatric care providers to identify and respond to children and adolescents who may need trauma-focused supports. In this paper we discuss the importance of pediatric physicians adopting trauma-informed care and how evidence-based screening practices in pediatric settings is a trauma-responsive approach with great potential for meeting unmet needs among trauma-exposed children and families.

Specialized knowledge and skills applicable to caring for children in foster care include guidelines developed to address this population's special health care needs, cross-system collaboration, and helping families cope with the health impacts of trauma. This paper begins with a review of the special health care needs of children in foster care and relevant guidelines. We discuss different models of health care delivery that can be employed to meet the special health care needs of children in foster care. We then provide examples of two programs employing different models of care that work collaboratively to deliver care to children in foster care in our community.

The first palliative care services were started in Uganda 30 years ago with services continuing to develop since then. The Ministry of Health and the Palliative Care Association of Uganda have played key roles in the development of paediatric palliative care in the country. There are a range of paediatric palliative care service providers in Uganda, and these have developed alongside educational programmes and research in PPC. Care is provided across the Uganda health system and across the age range from neonates through to adolescents and young adults. Whilst recognising the importance of shared decision-making there is little literature with regards to this in the Ugandan context. However, a variety of factors have been shown to influence decision-making, along with the challenges and recommendations for the future. Uganda has made significant strides in the provision of paediatric palliative care although there is still a way to go before all children with palliative care needs, and their families, can access palliative care.

Specialized pediatric palliative care (PPC) in Japan evolved primarily to care for children with cancer. As a result, the system for providing PPC to pediatric cancer patients is much more advanced than systems for non-cancer patients with life-limiting diseases. About 40% of pediatric cancer patients die at home, while most non-cancer patients die in the hospital under intensive care. In Japan, the wishes of the family tend to precede the children in decision-making for children who lack decision-making capacity. This is true even for adolescents whose medical treatment decisions may not fully reflect the wishes and preferences of the teen patients. There are efforts to empower adolescents to participate in shared decision making.

In Sweden, the governance of healthcare is decentralized, so PC is provided with regional or local differences in organization, level of competence, and recourses. Ongoing regional and national initiative to increase quality of pediatric palliative care in Sweden aligns with the international standard of pediatric palliative care as a care directed towards all children with life-threatening or life-limiting illness or conditions from the time of diagnosis. Examples of such initiatives and of different care-services providing pediatric palliative care will be presented. Finally a case to highlighting how a child's care needs might change throughout the illness trajectory and how various healthcare facilities and organizations when collaborating can support the child's participation in decision making is presented.

Shared decision-making (SDM) is a process in which health care professionals (HCPs) involve parents and children - when appropriate- to decide together on future treatment. These decisions are based on values that are important for the family, goals of care and preferences for future care and treatment. Elucidation of these values and preferences is preferably done early in the disease trajectory via so-called Advance Care Planning (ACP) conversations.

In the Netherlands, ACP and SDM are being adopted by most health care professionals. This has happened only recently. Ten years ago, ACP and SDM were unknown concepts for the vast majority of Dutch HCPs. Today, interest in these conversational approaches is booming in both daily practice and in research.

This rise has been reinforced by two recent major advancements in Dutch pediatric palliative care: the Individual Care Plan (ICP) and the Dutch Evidence-Based Guideline on Pediatric Palliative Care (DGPPC).

Despite this positive evolution, a lot of work is still ahead. ACP and SDM demand a change in mindset from the traditional paternalistic approach by which the HCP ‘knows what is best for this child’ to a more humble and open approach in which (non-medical) factors that are important to the child and family and may influence the final treatment decision. Such changes in mindset don't happen overnight.

In this article we describe the situation of pediatric palliative care in the Netherlands, with focus on the recent evolution of ACP and SDM.

The evolution of paediatric palliative care in Malaysia has followed a distinct trajectory compared to adult palliative care. While adult palliative care was well-established by the mid-1990s, paediatric palliative care was still then largely ad hoc, with individual paediatricians and NGOs taking on the responsibility. Despite progress over the last decade, challenges persist. There is a shortage of trained paediatricians in this subspecialty, and financial constraints hinder progress. Decision-making in paediatric palliative care is also influenced by cultural values, religious beliefs, and societal norms. Parents are steered by cultural practices and the guidance of elder family members in a setting of communitarian traditions that are prevalent in Asian cultures. Discussions about end-of-life matters are hampered by cultural taboos. Additionally, the hierarchical medical culture, where doctors are seen as authoritative, hinder patients, including parents, from taking an active role in decision-making. The paper exemplifies these complexities through a case study, where the family's hopes and concerns were overlooked in a hectic and hurried hospital environment. The narrative calls for a compassionate, collaborative ecosystem that bridges cultural gaps and embraces shared decision-making in paediatric palliative care. It emphasizes the need to harmonize palliative care with societal values, involving healthcare providers, families, and the community. However, recognizing individual preferences and avoiding cultural assumptions are crucial. Healthcare professionals must develop skills in cultural diversity, delivering distressing news with compassion, and effectively communicate to involve families in decision-making, all while respecting their beliefs and values.