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The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study

BMC Palliative Care volume 23, Article number: 236 (2024) Cite this article

Abstract

Background

To ensure high-quality pediatric palliative care (PPC) and enable healthcare professionals (HCPs) to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their family, the Individual Care Plan (ICP) for PPC was developed. However, in practice, the ICP for PPC is not used for all children in need of PPC. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice.

Methods

Two semi-structured focus group interviews were held with 15 experienced healthcare professionals in PPC. Data were thematically analyzed.

Results

Participants wish to use an ICP to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other healthcare professionals in the care of the child. Participants think the ICP could also be used in the care for children with complex chronic conditions.

Conclusion

The purposes for which healthcare professionals wish to use an ICP in PPC are broader than the purpose for which the ICP for PPC was developed. Future research should focus on whether the use of an ICP in PPC practice can achieve these purposes.

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Introduction

Pediatric palliative care (PPC) is often complex care delivered by numerous healthcare professionals (HCPs) from different disciplines and organizations [1,2,3]. The care can last for years in which the child usually moves between hospital and home [1,2,3]. To support parents and HCPs in the complexity of PPC, various tools exist internationally, e.g. on supporting communication and documentation of outcomes regarding advance care planning [4,5,6] and shared decision-making [7], and to document and share preferences, desires and agreements for current and future care and treatment [8].

This last tool, the individual care plan (ICP), is a comprehensive tool covering all dimensions of PPC, i.e. physical, psychological, spiritual and social dimensions [8, 9]. It was developed in response to a request from parents and HCPs to translate the general recommendations from the guideline ‘palliative care for children’ into a personalized plan [10]. The aim was to ensure high-quality PPC and to enable HCPs to provide person-centered care for the individual child with a life-limiting or life-threatening illness and their families [8]. Subgoal was to support coordination and continuity of care [8].

Recently, parents’ and HCPs’ experiences with the ICP were explored, resulting in an improved ICP document that was implemented nationwide [11]. However, the study showed that the ICP is not yet used for all children in need of PPC [12]. Insight into why, for which problem and for which children HCPs wish to use an ICP in PPC is therefore necessary to assure that the ICP can be fully implemented in practice.

Methods

Design and sample

Focus group interviews were held, as they are best suited for exploratory qualitative research methods [13]. Using purposive sampling, nurses working in home care or hospitals, pediatricians, psychologists, social workers and spiritual counselors with working experience in PPC in the Netherlands were included to cover all dimensions of PPC, i.e. physical, psychological, spiritual and social. Experience with drawing up or working with the Dutch ICP for PPC was not required. Diversity in discipline and setting was sought.

Recruitment

The researchers contacted twenty eligible participants, who were known in the PPC field nationwide and/or had previously participated in PPC research, via telephone. They received information on the study and an invitation to participate. When interested, they received an email with the study information and an URL to the study website to indicate their availability for the focus group interviews and to fill in the informed consent form. Based on their availability, participants were then invited for either one of the two focus group interviews.

Data collection and measurements

The digital semi-structured focus group interviews explored for which purpose HCPs wish to use an ICP. The topic guide, based on previous research on the ICP [11] and on the research teams’ knowledge, covered the following topics: goal of the ICP, target population, what the ICP should look like with regard to content, and what the use of an ICP should solve, see supplement 1. The focus group interviews were led by CJ (PhD student, female) who is trained in qualitative research and were supported by either AH & JD or MT & AT (all medical students, all female). The two focus group interviews lasted 1,5 h each.

Data analysis

The focus group interviews were transcribed verbatim and pseudonymized. Field notes were made during and after the focus group interviews. Thematic analysis was used [14]. Both transcripts were read individually by CJ and JA (assistant professor, female) to get familiarized with the data. First, the data were open coded individually (CJ, JA). Second, axial coding took place to draw connections between codes and to organize codes in categories. During the whole coding process, the researchers (CJ, JA) compared codes derived from the data and when necessary, the code tree was adapted. The software program Atlas.ti was used to facilitate the analysis.

Results

In total, we included 15 HCPs with diverse professions, see Table 1. Most participants were acquainted with the Dutch ICP for PPC, two third had experience with drawing up or working with the ICP and one third had none or little experience with the ICP. Five of the 20 approached HCPs were willing to participate but unable to be present at one of the two planned dates, of whom three spiritual counselors and two nurses working in primary care.

Table 1 Characteristics of study participants
Full size table

Findings

The main purpose for which participants wish to use an ICP is to collaboratively establish a plan with parents for the care and treatment of the child. By doing so, they also hope: (1) to achieve coordination and continuity of care; (2) to achieve shared decision-making; and (3) to support parents and other HCPs in the care of the child. For illustrative quotes, see Table 2.

Table 2 Quotes per theme
Full size table

Collaboratively establishing a plan for the care and treatment of the child

From the start of the illness, parents and HCPs start on a journey together that requires them to collaborate to establish a plan for the care and treatment of the child. Participants see an ICP as an instrument to guide this journey, based on the needs and wishes of the child and parents to ensure child- and family centered care. This goes beyond physical care, and includes social, psychological, and spiritual care, as well as quality of life and development of the child. Participants wish to establish a plan for both the current and future care and treatment of the child.

Participants mentioned that the preferences of the child and parents can change over time and emphasized the importance to sustain collaboration with parents during the entire journey. Furthermore, participants concluded that the journey is not only a curative journey or palliative journey, but that these journeys should coexist, and both deserve attention in an ICP. Planning current and future care and treatment should not be done urgently, but participants want to see it as ‘normal’ medical care. Participants all agreed that an ICP could be used for all children of whom the disease trajectory is unpredictable but is potentially life-limiting or life-threatening. The use of an ICP is not limited to these children, according to participants, an ICP could also be used for children with complex chronic conditions.

Even though the child was seen as the center point of an ICP, participants predominantly mentioned collaboration with parents throughout the focus group interviews. However, participants all considered it important to prioritize the perspective of the child, but in reality, it is often challenging to involve children in drawing up an ICP. Ideally, participants want to have individual conversations with every child for whom they draw up an ICP, but that is often not possible due to too young age or developmental delays. Some mentioned the importance of having separate conversations with the child and parents, as they felt the presence of parents can affect what the child will say. Furthermore, participants mentioned that children coming of age who become involved in their own ICP might not agree with the plan previously established by parents and HCPs.

To achieve coordination and continuity of care

After establishing a plan for care and treatment of the child, participants intend to use an ICP to communicate the plan to other HCPs involved to ensure coordination and continuity of care. They mentioned that it is important that the plan is written down as concretely as possible, to leave no room for uncertainties.

To achieve shared decision-making

During the journey, many decisions need to be made by parents and HCPs. Participants find it important that parents are involved in the decision-making process and that decisions are made collaboratively as a team. However, they recognized that their perspective on decision-making is influenced by Western values, wherein parents possess considerable autonomy. It was acknowledged that not all parents desire or are able to engage as extensively in decision-making as HCPs wish for. Consequently, participants wish to explore the needs of parents in the decision-making process and document these in the ICP to clarify the decision-making roles for everyone involved.

By making decisions collaboratively as a team, participants actively seek consensus on key decisions to prevent parents from feeling solely responsible for crucial decisions. However, in certain situations, participants believe it is their responsibility to make the decision, particularly when medically futile interventions are at stake. Participants wish to document these decisions explicitly in the ICP to ensure care is provided accordingly, and to spare parents from being confronted with the same inquiries repeatedly.

To support parents and other HCPs in the care of the child

Another purpose for which participants wish to use an ICP is to support parents and other HCPs in the care and treatment of the child. Providing PPC requires expertise from HCPs, but participants do not always feel that others have the required expertise. Consequently, participants wish to increase resilience and take responsibility for the quality of PPC by using an ICP to support and educate other HCPs. They intend to use the ICP in two ways: (1) to communicate a clear plan for current and future care and treatment, and (2) to describe potential scenarios in the illness trajectory of the child, including steps in care and treatment. By describing scenarios, participants hope to primarily prepare general practitioners and home care nurses for potential situations that may arise in the future, with a specific focus on end-of-life care.

Furthermore, participants wish to write down the needs and wishes of parents in an ICP to empower other HCPs to support parents. However, participants struggle with wanting to know everything about parents on the one hand to support them in the care of their child, and on the other hand respecting the privacy of parents as they are not the patient. A few participants suggested that when HCPs clarify the ICP’s purpose and who can access the information, parents can often decide what to include and how to phrase it.

Discussion

In this exploratory study, we aimed to gain understanding of the purpose for which HCPs wish to use an ICP in daily PPC practice. The main purpose for which HCPs wish to use an ICP is to collaboratively establish a plan with parents for the current and future care and treatment of the child. By doing so, they hope to achieve coordination and continuity of care, to achieve shared decision-making, and to support parents and other HCPs in the care of the child. These purposes are broader than the purpose for which the ICP was developed. Furthermore, HCPs believe that the use of the ICP could be extended to children with complex chronic conditions.

HCPs wish to use an ICP to collaboratively establish a plan for current and future care together with parents to achieve shared decision-making. In the last decade, there is growing interest in shared decision-making in PPC [15]. However, literature shows that a paternalistic approach is often still predominant and that it remains a challenge to come to shared decisions with parents [15,16,17]. Our results show that an ICP could support HCPs in shared decision-making, by writing down how decisions should be made, and which decision have been made. This is an important finding to further enhance shared decision-making in PPC. The ICP might also enhance the shared decision-making process by providing a structure and prompts for both medical and psychosocial aspects of care. In addition, since the ICP is intended to document current and future care from a shared perspective, advance care planning conversations might be a valuable tool to facilitate drawing up an ICP.

Furthermore, HCPs wish to use an ICP to achieve coordination and continuity of care by communicating the plan for care and treatment of the child with involved HCPs. Our results are in line with two previous studies that show that ICPs for children in need of complex care could enhance coordination and continuity of care by reducing fragmentation of care and by facilitating interdisciplinary collaboration and information sharing across healthcare sectors [18, 19]. Since coordination and continuity of care are often challenging in PPC due to the many involved HCPs and the many places the child receives care [2, 3, 20], an ICP could be a valuable tool to overcome these challenges. The uniformity of the ICP can support HCPs in communicating and collaborating on the care of the child.

This study showed that it is important to consider the aging and development of the child, as well as changing circumstances, which can alter the child’s’ and parents’ needs and preferences. This necessitates changes to the information documented in the ICP. It is therefore important that the preferences and desires of child and parents are discussed regularly and that the information documented in the ICP is changed accordingly. However, since no care trajectory is the same [21], it is difficult to determine the interval at which the document should be revised. HCPs should assess on a case-by-case basis when revisions of the ICP are necessary. However, annually revisions are advised [7]. Agreements on responsibilities should be made to ensure revision of the document. Furthermore, the child’s development and thus the child’s role in the ICP process must also be reassessed over time. In the Netherlands, children aged 12 and older are allowed to participate in decision-making, if deemed capable, and children aged 16 are allowed to make decisions [22]. Thus, they should be part of the ICP process.

All HCPs agreed that the use of an ICP could be extended to children with complex chronic conditions. This is interesting since the ICP was developed for every child with a life-limiting or life-threatening illness, which also includes children with complex chronic conditions [8, 23]. It appears that this is not yet the scope with which the ICP is used by HCPs. The fact that HCPs wish to use the ICP more broadly should be encouraged. Future research should focus on the use of an ICP for a broader audience.

It is noteworthy that HCPs wish to use an ICP to support and educate others in providing PPC to ensure quality care and enhance resilience, especially since this was not a reason the ICP was developed for. In the Netherlands, a significant portion of the care for children in PPC could be provided by a generalist, such as a general practitioner. Providing PPC is not something they do on a daily basis though; in fact, some may only experience it once in their career [10]. This complicates gaining experience in PPC. Furthermore, PPC is rarely addressed in nursing and medical education [24]. The wish to use an ICP to support and educate HCPs should therefore be taken very seriously, especially as more and more care is provided at home [25]. It is important to study the possibilities of using an ICP for educational purposes in PPC to adhere to the intentions that HCPs have for an ICP.

Strengths and limitations

This study provides important insights in the purpose of an ICP according to HCPs. By including HCPs caring for children with a wide range of PPC needs from different disciplines of whom nurses, physicians, a spiritual counselor, social workers, and psychologists, we provided insights into all four dimensions of PPC.

This study only included females. In line with the overrepresentation of 81% females working in healthcare [26] and in particular in pediatrics and palliative care, we do not expect significant differences. Future studies should still make an effort to included males to minimize possible gender bias. In addition, HCPs working in hospital were overrepresented in this study. These are often professionals with a lot of experience in PPC and the use of the ICP. Still, we believe the results of this exploratory study are representative. Since convenience and purposive sampling were used, generalizability could be limited [27]. However, for exploratory studies, a convenience sample is often sufficient [14]. Furthermore, the sample was drawn nationwide and covered all dimensions of PPC.

Conclusion

HCPs wish to use an ICP in PPC to collaboratively establish a plan for the care and treatment of the child, and thereby achieve coordination and continuity of care, achieve shared decision-making and support parents and HCPs in the care of the child. Our study indicates that HCPs wish to use the ICP for more aspects of PPC than for which the ICP for PPC was once developed, i.e. to provide person-centered care for the individual child and family. To align with the intentions of HCPs for the ICP, future research should focus on whether, and how, the use of an ICP in PPC practice can achieve these purposes.

Data availability

The data generated or analyzed during this study are not publicly available due to the possibility to be traced. We therefore want to protect participants privacy by controlling access to the data. Data are available from the corresponding author on reasonable request and with permission from the principal investigator and co-investigators.

Abbreviations

ICP:

Individual Care Plan

PPC:

Pediatric Palliative Care

HCPs:

Healthcare Professionals

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Acknowledgements

We like to thank all respondents for their contribution to this study.

Funding

No funds were received for this work.

Author information

Authors and Affiliations

  1. University of Groningen, University Medical Center Groningen, Beatrix Children’s Hospital, Hanzeplein 1, Groningen, 9713 GZ, The Netherlands

    C. Y. Joren, J. C. van Dijk, A. M. Habing, A. M. Tijs, A. A. Trampe, A. A.E. Verhagen & J. L. Aris-Meijer

  2. Center of Expertise in Palliative Care Utrecht, Julius Center of Health and Primary Care, UMC Utrecht, Universiteitsweg 100, Utrecht, 3584 CG, the Netherlands

    M. C. Kars

  3. Princess Maxima Centre for Pediatric Oncology, Heidelberglaaan 25, Utrecht, 3584 CS, The Netherlands

    L. C.M. Kremer

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Contributions

CJ contributed to the study design, was responsible for recruitment, conducted the focus group interviews and qualitative analyses, and drafted the manuscript. MK and LK contributed to the study design. JD, AH, MT and AT contributed to the study design, recruitment, and the data collection. EV contributed to the study design. JA contributed to the study design and conducted qualitative analyses. All authors contributed to revising the manuscript and approved the final manuscript.

Corresponding author

Correspondence to C. Y. Joren.

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Ethical approval and consent to participate

Ethical approval was deemed unnecessary according to the Dutch act WMO (https://english.ccmo.nl/investigators/legal-framework-for-medical-scientific-research/your-research-is-it-subject-to-the-wmo-or-not). All participants were fully informed of the study and informed consent was obtained digitally from all participants. All methods were performed in accordance with relevant guidelines and regulations.

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Joren, C.Y., Kars, M.C., Kremer, L.C. et al. The purpose of an individual care plan in pediatric palliative care according to healthcare professionals: a qualitative study. BMC Palliat Care 23, 236 (2024). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-024-01569-2

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BMC Palliative Care

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