Clinical Dietitians' Perspectives on Nutritional Management in Children's Palliative Care: A Qualitative Study

ABSTRACT

Background

Feeding disorders and gastrointestinal problems are among the most prevalent concerns in children who are eligible for palliative care. Many of these children require medical nutrition therapy and benefit from the involvement of healthcare professionals with expertise in nutrition, such as dietitians. Dietitians may help alleviate the practical and emotional burden parents experience when caring for their sick child at home. However, research is limited regarding dietitians' roles and contributions in children's palliative care.

Aim

This study explores dietitians' experiences and perceptions of nutritional management and care of children in palliative care in Norway.

Methods

Semistructured interviews were conducted with 11 dietitians who provide nutritional management to children in palliative care, and the data were analysed using a reflexive thematic analysis approach, as described by Braun and Clarke.

Results

Four themes were developed through this analysis: First, nutrition is a core component of comprehensive palliative care; second, organisational placement affects dietitians' involvement; third, fragile structures for nutritional care; fourth, close bonds between the family and the dietitian. We found that dietitians face complex feeding and gastrointestinal challenges when working with children and view nutritional care as a responsibility best addressed by a multidisciplinary team, rather than a task for the dietitian to manage independently. Organisational structure impacts a dietitian's ability to collaborate effectively with other professionals in providing nutritional care. Dietitians' knowledge of children's palliative care is primarily experience‐based, and they often lack professional support in decision‐making processes. Nevertheless, dietitians maintain close, ongoing contact with the families of the children they treat and tailor their approach to meet these families' needs as the children's conditions progress.

Conclusion

Nutrition is a core component of comprehensive palliative care and can impact the quality of life of children and their families. Therefore, it should be an integrated component of multidisciplinary palliative care for children.

Summary

• Nutritional management is a core element of children's palliative care, affects quality of life and requires a multidisciplinary approach.

• Organisational structures shape dietitians' involvement and opportunities for multidisciplinary collaboration.

• Dietitians often work with limited formal support, relying largely on experience‐based knowledge in palliative care.

• Sustained therapeutic relationships with families enable dietitians to individualise nutritional strategies in response to disease progression.

1. Introduction

Nutrition and hydration are basic needs for every human being, and adequate nutrition is essential for children's physical growth, cognitive development and immune system functioning. However, some children develop feeding disorders that, if not addressed in a timely manner, can negatively impact their overall health and quality of life [1]. This is especially the case for children with life‐limiting or life‐threatening conditions who are eligible for children's palliative care (CPC) [2]. In this highly heterogeneous group, the majority of children suffer from severe neurologic impairment (SNI), including neurometabolic conditions and childhood‐onset neuromuscular diseases that frequently present with motor and cognitive impairments as well as substantial medical complexity [2, 3, 4]. The conditions are permanent and may be either progressive or static, and the children require extensive assistance with activities of daily living, such as feeding [3].

Children with SNI, or with neurometabolic or neuromuscular diseases, often exhibit symptoms such as reflux and vomiting, dysphagia, constipation, diarrhoea, visceral and neuropathic pain and feeding intolerance [5, 6, 7]. Given the medical complexity and progressive deterioration associated with many conditions, a large proportion of the children in CPC require medical nutrition therapy.

Medical nutrition therapy encompasses oral nutritional supplements, enteral tube feeding/enteral nutrition and parenteral nutrition [8]. Enteral and parenteral nutrition are medical interventions that require daily administration and close monitoring. Therefore, children in palliative care with complex nutritional challenges who require medical nutrition therapy also require the support of competent healthcare professionals.

Clinical dietitians, hereafter referred to as dietitians, are healthcare professionals with specialised expertise in nutritional management. This management typically follows the nutrition care process, which involves assessing nutritional status, identifying specific nutritional problems, developing nutrition care plans and monitoring patient progress to determine whether further interventions are required [9]. Thus, dietitians are often involved in treating children with complex nutritional challenges.

The nutritional management of children in palliative care is a sensitive and challenging field, posing a range of ethical dilemmas, especially when the child's condition is deteriorating [10]. The number of children with life‐limiting conditions is predicted to rise in the coming years [4]. Advances in medical care have prolonged the survival of children with complex conditions [11], increasing the prevalence and complexity of nutritional challenges and gastrointestinal complications [12]. Together, these trends highlight the importance of including dietitians as integral members of paediatric palliative care teams to support appropriate nutritional management and enhance quality of life. However, in Norway, the extent of dietitians' involvement in palliative care teams and their impact on nutritional management remains unclear. Therefore, in this study, we aim to explore dietitians' experiences and perceptions of nutritional management for children in palliative care in Norway.

2. Materials and Methods

2.1. Study Design

In this exploratory and interpretive study, we employ a qualitative design, utilising semistructured interviews. For this study, we developed an interview guide (see File S1) inspired by a theoretical model of motivation and performance [13]. The model outlines how internal factors (needs, thought processes, ability and knowledge) and external factors (social facilitation, task and social factors and external dependencies) influence an employee's motivation and work performance. We used a reflexive thematic analysis approach, as described by Braun and Clarke [14], and the Reflexive Thematic Analysis Reporting Guidelines (RTARG) were followed when reporting the current study [15].

2.2. Recruitment and Participants

Participants were recruited through the parents of children aged 0–18 years with SNI, neurometabolic conditions or childhood‐onset neuromuscular disease who were receiving services from a nonhospital‐based CPC unit in Norway. The parents consented to the researchers' invitation of the healthcare professional providing nutritional care for their child to participate in the study. When the original involved healthcare professional resigned or took leave, the current provider of nutritional care for the child was invited. Potential participants received information about the study by email or telephone and provided electronic written consent to participate. Participants were recruited regardless of their experience, professional background or workplace. The only criterion for participation was that they provided nutritional management for at least one child in palliative care. Of the 18 individuals invited to participate, 11 consented, 1 declined due to time constraints, 3 did not respond to the invitation and 3 were unavailable because they had left their positions or changed jobs. The final group of 11 participants we all female clinical dietitians, with age categories ranging from 26 to 30 to over 65 and work experience ranging from 2 to 5 years to over 20 years. The dietitians represented three out of four health regions in Norway.

2.3. Data Set Generation

The interviews took place between May 2024 and October 2024 via video meetings or in a meeting room at the participant's workplace, depending on participants' preferences. Each interview was audio‐recorded and lasted between 45 and 65 min. Before the interview, the participants received a summary outlining the definitions and goals of CPC and the study's aim. The recording was immediately uploaded to a secure database at the end of each interview. The interviewer (G.T.) is a dietitian who is experienced in multidisciplinary care for families affected by rare genetic disorders, including those with progressive trajectories. Some participants may have previously interacted with the interviewer in her professional role or been familiar with her work. However, any prior connection was incidental due to the recruitment process, though it may have influenced the participants' willingness to participate in the study.

The interviews were transcribed verbatim in Norwegian, and selected excerpts were translated into English by the first author for reporting purposes. All authors reviewed and quality‐assured the translation, and the final version was sent for external copy‐editing to ensure linguistic accuracy. All authors familiarised themselves with the material by reading the transcripts until they were sufficiently familiar with the data. Data were coded inductively, capturing both semantic and latent meanings. The first author carried out the coding manually on paper, and this was an interpretive, iterative process. Codes were then developed into candidate themes through clustering and refinement. The themes were developed and iteratively refined through reflexive discussions among all authors, with careful attention to our respective backgrounds, perspectives and potential biases. This collaborative process allowed us to critically reflect on how our positionalities may have influenced data interpretation and to deepen the interpretive insights generated.

3. Results

The analysis identified four key themes with corresponding subthemes. See Table 1 for an overview of the themes, subthemes, descriptions and excerpts from related quotes from the participants.

Table 1.

Overview of the generated themes.

Theme	Subthemes	Despription	Excerpts of quotes
Nutrition is a core component of comprehensive palliative care	Nutritional management requires a multidisciplinary approach The goals of nutritional care warrant ethical discussions Nutritional management impacts quality of life	Dietitians regard nutritional care as a responsibility best managed through an interdisciplinary approach rather than solely by the dietitian. The joint responsibility should also address the many ethical concerns in the field, as nutritional care impacts quality of life.	Because it's also essential, just like with cardiopulmonary resuscitation, to consider these decisions in advance
Organisational placement affects the dietitian's involvement.	The dietitian's areas of responsibility influence their capacity to work with children's palliative care Organisational structure either promotes or hinders multidisciplinary collaboration	The dietitians indicate that the organisational structure plays a crucial role in shaping their ability to collaborate effectively with other professionals regarding nutritional management for children in palliative care.	Nutrition is often a bit… well, nurses and doctors often work closely together, and because I'm not permanently employed there, […] I'm on the sidelines
Fragile structures for nutritional care	Limited basic knowledge and access to information Dietitians as guardians of nutritional care Nonsystematic collaboration with municipality‐based services	Dietitians often lack reliable clinical decision support and guidelines for clinical decision‐making and must ensure that nutrition is prioritised within the multidisciplinary team. They rarely collaborate with municipality‐based services closer to the families.	And then we sort of have to knock on the door and say that this needs to be interdisciplinary, and we need to take a broader perspective on it. I can't be the only one responsible for that part
Close bonds between the family and the dietitian.	Adjusting to meet the family's needs Gently pushing in the recommended direction	Dietitians maintain close, continuous contact with families, adapting their approach to meet the child's evolving needs as their condition progresses.	Therefore, when we notice that it's becoming difficult and there's a risk of aspiration, we must discuss it with the parents, explain the situation, and allow them the time they need to process it

3.1. Theme 1: Nutrition Is a Core Component of Comprehensive Palliative Care

The dietitians included in this study explicitly emphasised that optimal nutritional management is best achieved through a multidisciplinary approach. This encompasses in‐depth discussions of the factors influencing nutritional intake and feeding tolerance, as well as ethical considerations surrounding nutritional interventions and the crucial role nutrition plays in shaping the quality of life for both the child and their family. The subsequent subthemes further explore the following factors: ‘Nutritional management requires a multidisciplinary approach', ‘The goals of nutritional care warrant ethical discussions' and ‘Nutritional management impacts quality of life'.

3.1.1. Subtheme 1: Nutritional Management Requires a Multidisciplinary Approach

All the dietitians emphasised the importance of addressing nutritional issues in an interdisciplinary manner, as nutrition and feeding tolerance are closely connected to other disciplines and must be viewed holistically. Experienced dietitians observed the impact that other interventions, such as medication, positioning and lung physiotherapy, could have on feeding tolerance. They highlighted the importance of considering this when creating a nutrition care plan.

So, if I am going to set up a plan for a patient, I take meal times into account, and then, I coordinate them with their medications, particularly laxatives and epilepsy medication, because I've noticed that if you give tube feeding just before they receive their epilepsy medicine, everything tends to come back up.

(Dietitian 2)

Some dietitians were well integrated into multidisciplinary teams and were active and engaged team members. They could be part of various types of teams, such as interdisciplinary feeding teams and habilitation teams—that is, multidisciplinary paediatric neurodevelopmental services. Some were affiliated with paediatric palliative care teams, but none had a permanent position on such a team. When the dietitians were part of multidisciplinary teams, they often noted that nutrition was a topic frequently addressed in interdisciplinary consultations. They also found paediatric palliative care teams to be especially beneficial for holistic care.

It's a bit like an extended interdisciplinary consultation, where you try to go through all aspects of the child's and family's situation, including respite, the parents' well‐being and more purely medical and nutritional issues, such as growth and epilepsy, for example. However, the goal is to consider the entire family and their situation, not just the medical aspect.

(Dietitian 4)

The dietitians recognised that nutrition was just one of many concerns parents were required to manage. They emphasised the importance of considering the broader context, including the overall burden on families and their caregiving responsibilities. This holistic perspective was deemed essential in balancing the need for nutritional management with healthcare professionals' diverse aims and priorities.

3.1.2. Subtheme 2: The Goals of Nutritional Care Warrant Ethical Discussions

When working along the nutritional continuum, the dietitians frequently encountered moments in which a child's condition changed and the focus gradually shifted from optimising nutritional intake to accepting inadequate intake levels. Recognising when to acknowledge this transition in the natural progression of the disease could be challenging.

And then, perhaps, it becomes a gradual transition from being unable to provide optimal amounts to moving towards something else. There may not be a specific date when we stop giving enough, but rather that we don't quite reach the goal. We view it as part of the process at the end of life.

(Dietitian 7)

Many dietitians felt there was a lack of ethical discussion regarding continuing or withdrawing medical nutritional therapy. Based on their experiences with parents' reactions to these difficult decisions, they emphasised the importance of advance care planning (ACP) conversations with both families and the multidisciplinary team to prepare for these shifts. The dietitians rarely participated in ACP conversations in a structured or systematic way. However, at times, they did discuss changes in the child's condition with the responsible physician, and ethical issues often emerged spontaneously during everyday clinical work. The dietitians called for more systematic ethical discussions, including those concerning nutritional care towards the end of life.

Because it's also essential, just like with cardiopulmonary resuscitation, to consider these decisions in advance. Feeding your child is so fundamental, and suddenly facing a situation where you can no longer provide food is heartbreaking. That's why preparing parents beforehand for the possibility that this might happen towards the end, in my view, is essential.

(Dietitian 4)

3.1.3. Subtheme 3: Nutritional Management Impacts Quality of Life

For many dietitians, ensuring that nutritional management was integrated within a multidisciplinary approach was essential, given its impact on quality of life. They recognised that nutritional interventions could impose certain constraints on both the child and their family. However, the absence of nutritional care was not considered a viable alternative. When adjustments in nutritional management improved the child's gastrointestinal issues, the dietitians emphasised that this significantly enhanced their overall well‐being, which benefited the entire family.

Nutrition is, of course, a significant part of life and overall well‐being, so inadequate nutrition in a child will undoubtedly impact their condition and mood. And if they experience substantial nutritional issues, such as frequent vomiting and reflux, which all these children do, it will naturally have an impact on their quality of life.

(Dietitian 3)

3.2. Theme 2: Organisational Placement Affects the Dietitian's Involvement

The dietitians held various positions within the hospital. The way their positions were anchored influenced their ability to work systematically and in a multidisciplinary manner with children receiving palliative care, with some organisations supporting this approach more than others. This issue is further elaborated on in the sections ‘The dietitian's areas of responsibility influence their capacity to work with children's palliative care' and ‘Organisational structure either promotes or hinders multidisciplinary collaboration' subthemes.

3.2.1. Subtheme 1: The Dietitian's Areas of Responsibility Influence Their Capacity to Work With CPC

The positions of the dietitians were primarily anchored in three ways: in habilitation units, the paediatric department or an overarching service department within the hospital. Depending on the size of the hospital and the number of patients receiving care, the dietitian may work solely with children in need of habilitation services, all inpatient and outpatient children or with all patients in the hospital, including both children and adults. The number and scope of the patients a dietitian was responsible for affected the opportunity to focus specifically on CPC. While some dietitians could focus their work on children with complex conditions and felt confident in their roles, others were responsible for addressing all nutrition‐related issues across the hospital. Those with broader responsibilities acknowledged that it was impossible to maintain equal competence in all areas due to limited time and resources. Caring for children in palliative care was described as only one of the many complex tasks they were required to manage.

I'm kind of used to not being able to take part in everything, and I have to, in a way, yeah… I don't have time to prepare for everything I perhaps should and, instead, have to look at things afterwards, if you know what I mean. I don't necessarily have time to read through academic literature; unfortunately, it happens very rarely.

(Dietitian 11)

3.2.2. Subtheme 2: Organisational Structure Either Promotes or Hinders Multidisciplinary Collaboration

The dietitians' positions within the organisation influenced their sense of being part of a team. The dietitians who worked in multidisciplinary units appeared to have a good foundation for delivering effective and integrated nutritional care. Their presence in the unit also supported the multidisciplinary team in integrating nutrition into routine care.

Paediatricians, for example, are probably, I think, even better at recognising the importance of nutrition than physicians who work with adult patients might be. They're good at involving the dietitian, and it's very natural for them to do so. And, now, we work interdisciplinarily at the habilitation unit, and of course, now I work alongside them, so they're aware of me. But there's a focus on nutrition, and I get involved where there's a need for me, and I have a role to play.

(Dietitian 6)

Dietitians with job placements outside the habilitation unit or paediatric department felt distanced from the child and their family, and experienced working in isolation and a sense of disconnection from the multidisciplinary teams. They expressed a desire to be more integrally involved in providing care.

I feel somewhat on the sidelines. You know, nutrition is often a bit… well, nurses and doctors often work closely together, and because I'm not permanently employed there, I'm not permanently employed at the habilitation unit. I'm not… I'm on the sidelines. And it probably varies somewhat in terms of how much they consider me an important resource.

(Dietitian 7)

3.3. Theme 3: Fragile Structures for Nutritional Care

When attempting to ensure holistic nutritional care for children receiving palliative care, many dietitians performed their jobs without a structured framework for nutritional management in the context of CPC. How dietitians participated in multidisciplinary teams or interdisciplinary consultations appeared to be random. The knowledge and experience of dietitians and other professionals regarding nutritional management in CPC influenced the nutritional care provided, as demonstrated in the sections regarding ‘Limited basic knowledge and access to information' and ‘Dietitians as guardians of nutritional care' subthemes.

3.3.1. Subtheme 1: Limited Basic Knowledge and Access to Information

The dietitians' competence in nutritional management for children receiving palliative care increased with their professional experience. Most noted that CPC was not included in their educational curricula, and that their competence in CPC was gained through hands‐on practice. The complexity of nutritional challenges children face in palliative care could be difficult to comprehend and address.

I also have to be honest and say that it has been a bit challenging or that this is a group where I've been really challenged, and I feel that I don't have much expertise in this area. I was also uncertain about where I could seek advice.

(Dietitian 1)

When the dietitians began working with seriously ill children, they often relied on the knowledge and experience of colleagues and other healthcare professionals, with paediatricians frequently being cited as valuable discussion partners. However, the level of nutritional expertise and interest among other professional groups in the workplace varied. While some dietitians had access to peer networks for discussing complex cases, others found themselves isolated and had to rely solely on their own professional judgement.

3.3.2. Subtheme 2: Dietitians as Guardians for Nutritional Care

The dietitians emphasised that nutritional management should not be solely the responsibility of the dietitian. They often found themselves acting as nutritional advocates to ensure that nutrition remained a priority within the multidisciplinary team.

I find that it's often brought up as a topic, but sometimes, you just receive a referral, and then, it's a bit like, ‘Okay, you'll have to follow up on that part'. And, then, we sort of must knock on the door and say that this needs to be multidisciplinary, and we need to take a broader perspective on it. I can't be the only one responsible for that part.

(Dietitian 1)

Some dietitians pointed out that nutrition was often sidelined in interdisciplinary care planning. There was a prevailing expectation that it would be managed independently by the dietitian, rather than being integrated into the team's shared responsibilities. The dietitians stressed the importance of embedding nutritional care in interdisciplinary collaboration as a routine component. However, in practice, they continued to feel the need to push for attention to be paid to nutrition, as it was frequently treated as an isolated task.

Then they have a check‐up in the habilitation unit, where they go through many different points, and nutrition is one of them. Some points might be very detailed, but for nutrition, it just says, ‘regular follow‐up with the dietitian', and then, it's kind of like, okay, we don't need to cover that; someone else is responsible—it's the dietitian's job.

(Dietitian 3)

3.3.3. Subtheme 3: Nonsystematic Collaboration With Municipal Services

The dietitians expressed that collaboration between specialist healthcare services and municipal services lacked structure. Their participation in municipal case coordination meetings to discuss a child's nutritional situation often appeared to be random, depending on where the dietitian was employed and whether they had the capacity to attend such meetings. Nevertheless, many of the dietitians emphasised the importance of bringing together all the professionals involved with the child to ensure a comprehensive overview of nutritional care.

One needs to coordinate all instances or obtain a comprehensive assessment in some way. Because parents don't always have a complete overview of how things are going at school or in respite care, for example.

(Dietitian 9)

Public health nurses were often identified as natural partners when cooperation with municipal services was in place. They could monitor the child's weight to support the dietitian in assessing nutritional status. A few hospital‐based dietitians also collaborated with municipal dietitians; however, most lacked this opportunity due to the absence of dietitians in municipal services.

We don't have any dietitians in the municipality; we don't have any further branches here with us.

(Dietitian 10)

The inconsistent collaboration with municipal services influenced the dietitians' ability to advise the assistants and healthcare personnel providing nutritional care in the child's home. As a result, the dietitians assumed that this responsibility often fell on the parents.

3.4. Theme 4: Close Bonds Between Family and Dietitian

Despite varying organisational settings and areas of responsibility, all the dietitians underscored the importance of building a trusting relationship with the child and their family. A referral to a dietitian marked the beginning of a long‐term relationship, as children in palliative care were unlikely to recover from their complex nutritional challenges and likely to require ongoing support from the dietitian throughout their lifespan. The bonds between the dietitian and the family are further described in the ‘Adjusting to meet the family's needs' and ‘Gently pushing in the recommended direction' subthemes.

3.4.1. Subtheme 1: Adjusting to Meet the Family's Needs

The dietitians were attentive to what the parents said that they needed and tailored their follow‐up and care to the children's and families' needs. They stated clearly that they could not provide nutritional care without close collaboration with the parents and emphasised that they partnered with them, offering support throughout the children's illnesses.

I think the most important thing is to have a dialogue with the parents and aim for what we collectively believe is the best goal for the child. Should the focus be on providing the best possible nutrition to support optimal growth and life expectancy, or should we prioritise giving enough food to keep the child satisfied without pushing too hard to keep them on the growth curve?

(Dietitian 5)

In addition to improving the child's nutritional status, the dietitians valued the opportunity to ease the families' daily burdens by finding practical solutions for nutritional care, making daily life easier. They expressed that even small changes in the nutrition care plan could make a significant difference in overcoming logistical challenges and that the families appreciated the services provided by the dietitians.

The fact that we help solve many everyday challenges for the parents—we are there with them, right? The doctors mainly handle the medical aspects, but this is something they often must manage on their own. I find that the families are usually very grateful for the work we do.

(Dietitian 10)

3.4.2. Subtheme 2: Gently Pushing in the Recommended Direction

The dietitians reported developing long‐term relationships with families, providing continuous support throughout the children's illness trajectories. As the child's condition deteriorated, ongoing monitoring and adjustments to the nutritional care plan were required, as the risk of aspiration could increase, and feeding tolerance issues might worsen. The dietitians continued to follow up with families even during periods of stability, being aware of the unpredictable nature of the disease progression. When an initial decline in the child's condition was observed, and a new intervention became necessary, the dietitians described approaching parents with sensitivity, ensuring that shared decision‐making processes were carefully facilitated.

And then, at some point, with some of these children, you reach a stage where they can no longer swallow on their own, right? That can be very difficult for parents to come to terms with because eating might have been one of the few things their child could do that felt somewhat normal, something other children their age also do. Therefore, when we notice that it's becoming difficult and there's a risk of aspiration, we must discuss it with the parents, explain the situation and allow them the time they need to process it.

(Dietitian 5)

The dietitians acknowledged that parents' inability to adequately feed their children was a sensitive and challenging issue and that parents often needed time to accept necessary nutritional interventions. At the same time, the dietitians recognised their professional responsibility to ensure the child received safe and sufficient nutrition to prevent further harm. They continually balanced empathy for the parents with the obligation to provide the best possible care for the child.

4. Discussion

This study highlights the complex and often underrecognised role of dietitians in caring for children eligible for palliative care. Each year, more than 21 million children worldwide could benefit from palliative care, with over 8 million requiring specialised CPC [16]. The demand for CPC varies considerably, ranging from just over 20 per 10,000 children in the United Kingdom to nearly 120 per 10,000 in Zimbabwe [16]. Research also shows that survival among children with medical complexity and severe neurological impairment is increasing rapidly in England [11], and many of these children face significant nutritional challenges. This highlights the substantial need for comprehensive nutritional management within CPC. To our knowledge, this is the first study to explore dietitians' experiences and perceptions of nutritional management and care in this context.

Our study suggests that nutrition is not sufficiently integrated into holistic CPC, which is concerning given the complex nutritional challenges of many children who are eligible for palliative care [5, 6, 7]. Addressing these challenges effectively requires a multidisciplinary approach. The dietitians included in our study reported managing complex issues related to feeding and digestion, including frequent vomiting and severe feeding intolerance. They also described how nutritional intake is influenced by medical interventions and emphasised that a child's overall health and quality of life depend on well‐managed, individually tailored nutrition care plans. These findings are consistent with previous research showing that nutritional support for children with complex medical needs is challenging and requires ongoing, individualised adjustments [17].

Dietitians in our study observed that children receiving palliative care often have fluctuating disease trajectories and rapidly changing symptom management needs. They stated that a multidisciplinary approach best supports this dynamic and complex process. Accordingly, the dietitians advocated for the stronger integration of their role within multidisciplinary teams and their greater involvement in interdisciplinary discussions. This view is supported by the guideline of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) [18], which recommends that the nutritional evaluation and management of children with SNI ideally be conducted by a multidisciplinary team that includes a dietitian.

Multidisciplinary nutritional management has many benefits. For example, a study on the benefits and complications of enteral feeding [19] concluded that a careful, multidisciplinary approach is essential in avoiding complications when providing medical nutrition therapy to children with progressive neurological diseases. Similarly, a review of gastrointestinal and nutritional care in childhood‐onset neuromuscular disorders [8] found that effective interdisciplinary nutritional management can reduce morbidity and mortality, even in diseases without curative treatments.

We found that structured or routine‐based approaches to ethical considerations about nutritional care were absent; instead, ethical discussions tended to occur in an ad hoc manner and lacked structure. Previous research indicates that intractable feeding intolerance may be a significant factor as a child approaches the end of life [20] and that medical nutrition therapy, in this context, requires careful multidisciplinary discussions and well‐defined care goals, which should be shared and discussed with the child and their family [21]. Guidelines concerning ethics in medical nutrition therapy [10] emphasise the importance of establishing an individual care plan and setting goals before interventions involving medical nutrition therapy. Similarly, consensus guidelines for the provision of medical nutrition therapy towards the end of life in children and young people acknowledge the complex considerations that arise in the final stages of illness and offer a practical approach to decision‐making [21]. The dietitians included in our study emphasised the importance of addressing nutrition during ACP conversations. This aligns with a Dutch guideline on symptom management in CPC [22], which explicitly recommends initiating shared decision‐making about the potential forgoing of hydration and nutrition in such discussions. Given that withholding or withdrawing nutrition and hydration is a particularly sensitive issue for parents, incorporating these topics into ACP conversations may help to reduce distress as the child's condition progresses and is essential to address as the child approaches the end of life.

Our study finds that the organisational structures for nutritional management in Norway remain vulnerable and underdeveloped. Children receiving palliative care are geographically dispersed across the country, but they are entitled to equitable access to health services. The dietitians included in our study had varying affiliations within the hospital, and those employed in habilitation units or paediatric departments appeared to have the best conditions for effective interdisciplinary collaboration. The dietitians affiliated with CPC teams highlighted these teams as well‐suited to addressing nutritional care concerning the family's overall needs. However, many dietitians were not part of such teams. To make nutritional management for children in palliative care truly interdisciplinary, it is necessary to recognise the benefits of integrating dietitians into multidisciplinary teams.

The dietitians included in our study highlighted the challenge of lacking formal education in nutritional management within CPC. International guidelines [2] outline three levels of knowledge regarding CPC: basic, advanced and specialist. The advanced level is aimed at healthcare professionals who have regular contact with children requiring palliative care, such as dietitians. Our findings suggest a clear need for a more advanced level of knowledge and training for dietitians working in the context of CPC. For instance, training in nutritional management within CPC should be integrated into dietitians' formal education or provided through specialised courses tailored to this professional group. In the Nordic countries, formal education in CPC is still limited [23], but awareness of CPC is rapidly increasing and shows promise for the future. For example, online courses have been developed to provide advanced‐level knowledge regarding general CPC, including nutrition [24]. For nutritional management specifically, existing guidelines on the treatment of gastrointestinal and nutritional complications in children with SNI [18], the management of gastrointestinal dystonia [25] and medical nutrition therapy in end‐of‐life care [21] are relevant for children receiving palliative care. However, nutritional management should be part of comprehensive CPC throughout the lifespan. This means there is a need for care pathways that include nutritional management in CPC and to clarify the dietitian's role in this regard.

Finally, dietitians included in our study emphasise the importance of maintaining close and ongoing contact with families as the child's condition progresses. In a study examining parental caregiving tasks, nutrition emerged as the most time‐consuming additional responsibility, with parents spending an average of nearly 3 h per day assisting their child with feeding [26]. Previous research also shows that parents must manage numerous medical procedures related to nutrition daily [27] and calls for greater educational support regarding symptom management and their caregiving role [28]. Our findings show that although dietitians interact with the families closely, they rarely supervise the municipality‐based services or the parents in practical nutritional care. This provides a rationale for innovation in nutritional healthcare provision. Interventions that strengthen co‐operation with and the supervision of local carers and caregivers may reduce parents' burden and distress when providing nutritional care for their children.

4.1. Strengths and Limitations

The semistructured nature of the interviews provided rich insights into the dietitians' experiences and perceptions. However, the participating dietitians may not have full insight into all aspects of nutritional management within multidisciplinary teams working with children receiving palliative care, as many decisions involve input from other professionals and vary across clinical contexts. In the reflexive thematic analysis approach, subjective interpretation is considered a strength [14]. Trustworthiness and credibility were demonstrated through transparently describing the analytical process. One strength of the recruitment process is that we asked parents to identify the healthcare professionals responsible for their children's nutritional follow‐up, thereby allowing for the inclusion of professional groups beyond clinical dietitians. While we acknowledge that other healthcare professionals may possess considerable expertise in nutritional management, the parents almost exclusively provided contact details for dietitians, suggesting that they perceive dietitians to be primarily responsible for their children's nutritional care.

In this study, we explore the experiences and perceptions of nutritional management in CPC solely from the perspective of dietitians. While this is an important viewpoint to highlight, incorporating the perspectives of the children themselves, their parents and other healthcare professionals involved in nutritional management in future research would also provide valuable insights into the complexity and coordination of nutritional care in CPC.

5. Conclusion

This study explores dietitians' role in the nutritional care of children who are eligible for palliative care, a role often not fully recognised within current care structures. Even as the global need for CPC grows, our findings suggest that nutritional management is not yet systematically integrated into holistic CPC. Dietitians frequently navigate complex and fluctuating feeding disorders and gastrointestinal challenges, including ethical dilemmas, without standardised care pathways. The findings point to a need for improved organisational structures that support the inclusion of dietitians in interdisciplinary collaboration and provide greater access to CPC training. Strengthening coordination between services, including local care providers, may contribute to more consistent and supportive nutritional care for children and their families. Future research should explore effective models for integrating dietitians into multidisciplinary CPC teams and evaluate the impact of structured nutritional support on both clinical outcomes and family well‐being.

Author Contributions

Gro Trae conducted the interviews and carried out initial coding and analysis. Marianne Nordstrøm and Anette Winger provided intellectual substance through discussion. Gro Trae, Marianne Nordstrøm and Anette Winger refined the themes and discussed their interpretations. Gro Trae drafted the manuscript, prepared it for submission and responded to comments from reviewers, with support from Marianne Nordstrøm and Anette Winger. Marianne Nordstrøm and Anette Winger provided intellectual contributions on earlier drafts and revised and approved the final manuscript.

Ethics Statement

The Norwegian Agency for Shared Services in Education and Research (Sikt) has confirmed by 8 November 2022 that the study complies with the Personal Data Act (Reference number 203705). Ethics approval statement is not applicable. All participants received written information about the study in accordance with Sikt guidelines and provided electronic ID consent before participation.

Conflicts of Interest

The authors declare no conflicts of interest.

Supporting information

Supporting file 1. Interview guide dietitians.

Trae G., Winger A., and Nordstrøm M., “Clinical Dietitians' Perspectives on Nutritional Management in Children's Palliative Care: A Qualitative Study,” Journal of Human Nutrition and Dietetics 38 (2025): 1‐10, 10.1111/jhn.70174.

Data Availability Statement

Due to privacy regulations, the datasets generated and/or analysed during the current study are not publicly available but are available from the corresponding author upon reasonable request.