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Keywords:

  • home care;
  • midwives;
  • mixed methods;
  • nurses;
  • nursing;
  • paediatric end-of-life care;
  • parental experiences;
  • parental needs

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

Aims

(a) To explore parental experiences and needs during their child's end-of-life care at home; (b) to explore patient's characteristics and current provision of paediatric end-of-life care in the home care setting in Switzerland; and (c) to determine influencing system factors impacting end-of-life care at home.

Background

Parental experiences/needs and paediatric end-of-life care services in the home care setting are influenced by national healthcare policy, determinants of the family and the individual patient. In Switzerland, there is a lack of information about the provision of paediatric end-of-life care at home and related parent's experiences/needs.

Design

Sub-study of the nationwide multicenter study ‘Paediatric End-of-Life CAre Needs in Switzerland’ using a concurrent qualitative embedded mixed methods design.

Methods

Data will be collected from January–May 2014 through community care organizations and children's hospitals. The study includes approximately 40–50 families whose child (0–18 years) died in the years 2011–2012 due to a cardiological, neurological or oncological condition and spent at least 21 days at home during the last 4 weeks of life. Qualitative data will be collected through semi-structured interviews with parents and analysed by ‘thematic analysis’. Quantitative data about patient's characteristics will be obtained from patient's medical charts and parental experiences/needs through the parental questionnaire. Appropriate descriptive and inference statistical methods will be used for data analysis.

Discussion

This study will provide comprehensive basic information about parental needs and patient characteristics for the provision of paediatric end-of-life care and may promote the development of family-centred paediatric end-of-life care services at home.

Study registration: The PELICAN-study is registered in the database of Clinical Trial gov. Study ID-number: NCT 01983852.

Why this study is needed?

  • Parental experiences and needs during their child's end-of-life care at home have been sparsely studied.
  • Data on patient's characteristics and the provision of paediatric end-of-life care during the final weeks of life are needed for the development of needs-adapted services in the home care setting in Switzerland.

Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

Despite continuing advances in paediatrics, deaths in childhood still occur. Children with complex chronic conditions, i.e. long-term life-threatening conditions including one or more organs and requiring specialist care are especially affected (Burns et al. 2010). In Switzerland, approximately 200 children (aged 0–14 years) die annually due to complex chronic conditions (FSO 2013). In most Western European countries and the USA, the majority of childhood deaths occur in hospitals (Feudtner et al. 2007, Pousset et al. 2010). Nevertheless, the number receiving end-of-life (EOL) care in the home care setting is growing (Feudtner et al. 2007, Schmidt et al. 2013). Most studies on the topic focus on children with cancer (Bluebond-Langner et al. 2013). In the UK, the Netherlands and Germany, depending on the underlying illness, approximately 50% of children in the terminal stages of a chronic condition receive EOL care at home, while in Italy the rate is below 22% (Pousset et al. 2010, Shah et al. 2011, von Lutzau et al. 2012). In Switzerland, approximately 50% of EOL care for children beyond the first year of life takes place at home (Bergstraesser 2004). Various studies have indicated that, presented with the choice, the majority of terminally ill children and their parents prefer EOL care to be at home (Vickers et al. 2007, Dussel et al. 2009, Kassam et al. 2013). Clearly, the anticipated death of a child is agonizing for the parents. During the EOL phase, they have to cope with a highly complex and demanding situation: maintaining hope while readying themselves to accept the loss of their child (Laakso & Paunonen-Ilmonen 2001, Kars et al. 2010, 2011). EOL care at home, where the child is surrounded by family and friends, allows some degree of ‘normal’ family life (Vickers & Carlisle 2000). During this time, parents have serious needs: honest and comprehensive information; coordinated and continuous care; shared decision-making; empathic and supportive professionals and optimal treatment of the child's pain and other physical symptoms (Browning et al. 2005, Truog et al. 2006).

In Switzerland, little data are available concerning the incidence of childhood deaths occurring in home care settings, the underlying illnesses or other relevant circumstances, including the associated parental experiences and needs (Inglin et al. 2011). Given the complexities of the matter, and the severity of the suffering and the challenges involved for the children and their families, studies enhancing the advanced knowledge available on EOL care in the home care setting are urgently needed. To provide the support and services the parents require, it is of the utmost importance to understand their needs and expectations and to explore the system factors influencing the provision of paediatric EOL care in Switzerland. Based on this knowledge, new family-centred models of care including multiprofessional teams can be developed.

Background

No standard definition exists for EOL care. Bergstraesser (2013) defines EOL care as a part of palliative care, but including the phase of dying. This final phase of illness entails a high probability of medical and caring needs, physical instability, increased suffering and the phase of dying (Bergstraesser 2013). The current study defines paediatric EOL care as the care provided to a child in the final 4 weeks of life.

The provision of paediatric EOL care at home is influenced by numerous system factors interacting on various levels. This study uses a multi-level systems model developed by Feudtner et al. (2011a) as a framework to investigate and explain issues, challenges and dynamics affected children and parents face. This model (Figure 1) is composed of four main levels, each of which is divided into four sub-categories. The main levels are: (1) the regional and national system; (2) the healthcare system; (3) the family system; and (4) the individual system.

image

Figure 1. Multi-level systems influencing experience of children receiving palliative or hospice care. From ‘Epidemiology and the care of children with complex conditions’ by C. Feudtner, K. Hexem, and M.T. Rourke, 2011, Textbook of interdisciplinary pediatric palliative care, pp. 7–17. Reprinted by permission of C. Feudtner.

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Facilitators and barriers to paediatric EOL care in the home care setting according to Feudtner's multilevel systems model

Regional and national systems

Legal regulations and policies on the national and regional level can be important either as facilitators or as barriers to a successful paediatric EOL care provision (Junger et al. 2010). In Switzerland, the Federal Office of Public Health (FOPH) develops and controls legal regulations and guidelines, while the individual Cantons are responsible for the implementation of palliative care programmes and the provision of related services (FOPH 2013). After the FOPH ‘National Strategy for Palliative Care 2010–2012’ identified a lack of access to palliative care for children in Switzerland, further investigations were launched in the extended ‘National Strategy for Palliative Care 2013–2015’ (FOPH 2013). The guidelines developed for paediatric palliative care throughout Europe in the International Meeting for Palliative Care in Children, Trento (IMPaCCT) (Craig et al. 2008), could serve as guidelines and be implemented in Switzerland too. Among their recommendations, IMPaCCT guidelines specify that the home should be the target location for Paediatric Palliative Care (PPC) and that round-the-clock professional care and support should be guaranteed for all affected families. In Europe and North America, social, ethnic, cultural and economic factors, and the geographical context correlate strongly with the likelihood of children receiving EOL care at home. In the USA and in the UK, Black, Hispanic or Asian children were less likely to die at home (Feudtner 2007, Shah et al. 2011), as were those in rural areas and poor neighbourhoods (Feudtner et al. 2002b, Shah et al. 2011). Language has also been identified as a barrier to access to EOL care and information sharing (Linton & Feudtner 2008).

Healthcare systems

In Switzerland, PPC and EOL home care is mainly provided by paediatric community nursing organizations, which collaborate closely with the children's hospitals and paediatricians. As elsewhere, though, the children's huge range of diagnoses and developmental stages, with relatively small numbers of cases associated with each, make it extremely difficult for healthcare professionals to gain expertise (Junger et al. 2010). This lack of expertise is one of the main hindrances to the provision of paediatric EOL care (Himelstein et al. 2004, Carroll et al. 2007, Junger et al. 2010). For the child and family alike, efficient care coordination is a crucial factor in assuring high-quality EOL home care (Truog et al. 2006, Junger et al. 2010, Vollenbroich et al. 2012). In the USA, hospital-based programs using interdisciplinary collaboration, e.g. Pediatric Advanced Care Teams (PACTs) and the Footprintsm-Project, have been launched to organize and coordinate family-oriented paediatric palliative home care (Toce & Collins 2003, Duncan et al. 2007). A ‘key worker’ is crucial to coordinate the care and support parents (Collins et al. 1998, Himelstein et al. 2004, Junger et al. 2010). Dussel et al. (2009) reported that advanced care planning helps parents feel better prepared for their child's EOL care and improves their readiness to care for the child at home. Thorough EOL care planning also correlates with fewer hospital admissions (Dussel et al. 2009).

Family systems

By caring for their dying child at home parents take over the roles of primary care givers (St-Laurent-Gagnon 1998, Vickers & Carlisle 2000). However, the burden of care can lead to emotional and physical exhaustion (Groh et al. 2013). To be able to carry out all of the necessary tasks, some parents cut back their working hours or quit their jobs (Dussel et al. 2011, Bona et al. 2013). As a consequence, even in countries where medical expenses are covered by mandatory health insurance, dealing with a child's EOL care can lead many families into financial difficulties (Dussel et al. 2011, Bona et al. 2013). In addition to allowing affected children the comfort and security of home life, EOL care at home allows parents a feeling of control over their environment and daily life (Vickers & Carlisle 2000). To support them, the coordination of care and the involvement of a flexible interdisciplinary team is vital (Vickers et al. 2007). Clear and honest communication from healthcare professionals about the illness prognosis and expected trajectory is essential (Vollenbroich et al. 2012), along with information regarding available support services and detailed practical care guidelines (Junger et al. 2010).

Individual-level systems

One of the most decisive factors in a child's EOL care provision is the underlying illness. Children with cancer are more likely to receive EOL care at home than those with non-malignant diseases (Feudtner et al. 2011a,b). Vickers et al. (2007) reported that in the UK, 77% of children with cancer die at home. Age is also a significant predictor for the location of a child's EOL care (Feudtner et al. 2002a,b, 2007, Pousset et al. 2010). While 92% of terminally ill infants under 1-year die in hospital, older children are more likely to die at home. Depending on the underlying disease, children and parents often have to cope with a variety of symptoms during EOL care at home, e.g. cognitive impairment, pain, fatigue, dyspnoea, problems with enteral intake or loss of appetite, seizures and anxiety (Hechler et al. 2008, Pritchard et al. 2008, Feudtner et al. 2011a,b). Among children suffering from cancer, pain remains the most pronounced issue (Wolfe et al. 2000, 2008). However, suffering from fatigue/weakness was valued comparably (Goldman et al. 2006). Heath et al. (2010) showed that pain and other symptoms were treated equally effectively at home and in hospital. Surkan et al. (2006), demonstrated that symptom relief correlated positively with EOL care at home.

Overall, only few studies have focused on the specific characteristics of paediatric EOL care in the home care setting. Regarding paediatric EOL care in the home care setting in Switzerland, no systematic, comprehensive information is available about specific patients’ characteristics or the provision of care; and little is known of what parents experience or need, or of their roles as primary EOL care givers. Understanding the dynamics acting on affected children and their parents in Switzerland will help to improve paediatric EOL care in the home care setting.

The study

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

Aims

This study aims to explore in depth the experiences and needs of parents during their children's EOL care in the home care setting by means of interviews and by a questionnaire survey. Furthermore, it will describe patient characteristics and provision of paediatric EOL care to children/adolescents (aged 0–18 years) who died in 2011 or 2012 due to cardiological, neurological or oncological diseases and who spent at least 21 of the last 4 weeks of life at home. Finally, it aims to identify system factors influencing the provision of EOL care at home and parental experiences and needs during that period.

The specific aims of this study are as follows:

  • Qualitative aims:
    • To explore parental perspectives in depth concerning their experiences and needs related to EOL care provision of their child in the home care setting, identifying their perceived facilitators and barriers regarding the provision of that care.
  • Quantitative aims:
    • Via a questionnaire survey, to explore and describe parental experiences and needs regarding their children's EOL care in the home care setting and to compare the results with data from parents whose children's EOL care took place in the hospital.
    • To describe and explore specific patient characteristics and the provision of paediatric EOL in the home care setting in Switzerland to determine differences and relationships with EOL care of children who died in hospital settings.
    • To explore for differences in socio-demographic factors between parents whose children's EOL care took place at home and those whose children's EOL care took place in hospital.
  • Mixed methods aim:
    • Using the multi-level systems model, to elaborate in depth key factors influencing paediatric EOL care provision in relation to the experiences and needs of families in Switzerland during their children's EOL care in the home care setting.

Design/methodology

The PELICAN HOME study is a sub-study of PELICAN I and II, a national multicentre study on Paediatric End-of-LIfe CAre Needs in Switzerland. The PELICAN study includes three components: PELICAN I is a retrospective medical chart analysis to describe patient characteristics and the current practice of EOL care in Switzerland for children and adolescents across the whole country. The aim of PELICAN II is to assess parents’ perspectives of their children's EOL care through a newly developed questionnaire and individual interviews. And PELICAN III will describe and explore the perspectives of healthcare professionals providing paediatric EOL care.

The PELICAN HOME sub-study uses a concurrent qualitative embedded mixed methods design (Creswell & Plano Clark 2011). Through face-to-face interviews, embedding will enable a deeper view of parents’ experiences and needs, resulting in a more comprehensive knowledge of the benefits and barriers they perceive regarding paediatric EOL care at home. The quantitative data will be derived from the PELICAN main study and will provide the descriptions of the participants, the parents’ needs and the provision of EOL care. For this study, EOL care in the home care setting is defined as care of a paediatric patient who spent at least 21 days of the last 4 weeks of life at home. The time frame of at least 21 days at home was considered to be long enough to draw conclusions about the EOL care received in the home. Furthermore, this period allows consideration of dynamics related to transfers from the home into hospital care and vice versa.

Sample/participants

The PELICAN main study will be conducted in 18 of children's hospitals or general hospitals with paediatric wards in Switzerland. Furthermore, 10 Swiss paediatric community care organizations will be involved across the entire country.

PELICAN I includes children/adolescents who died in the years 2011–2012 from cardiological, neurological or oncological disease, or who died during the neonatal period. PELICAN II includes parents of these children.

PELICAN HOME Sample 1

A selected sample of German speaking parents of the sample of PELICAN II (all of whom have personal experience with paediatric EOL care in the home care setting and whose child spent ≥21 days in the last 4 weeks of life at home) will be invited to participate in a semi-structured interview. Participants will be selected via purposive sampling according to diagnostic group, socio-demographic characteristics, etc., all data derived from the national questionnaire, to obtain a sample sufficiently heterogeneous to offer a broad perspective on the topic (e.g. parents from urban and rural areas). The sample size will be determined by data saturation.

PELICAN HOME Sample 2

Children/adolescents (aged 0–18 years) from the PELICAN I sample (each of whom spent ≥21 days at home during the last 4 weeks of life), will be included in the PELICAN HOME sub-analysis of patient characteristics and EOL care provision.

PELICAN HOME Sample 3

Parents who meet the PELICAN II inclusion criteria, i.e. whose child died in 2011 or 2012 and whose child spent ≥21 days at home during the last 4 weeks of life will be included in the PELICAN HOME quantitative sub-analysis regarding parental experiences and needs in the home care setting.

Exclusion criteria

Neonates are excluded from the PELICAN HOME sub-study, as they are most likely not to fulfil the inclusion criteria, i.e. they do not spend ≥21 days at home in their last 4 weeks of life. Parents who do not understand written or spoken German, French or Italian are also ineligible.

Data collection

To identify patients and participants for the PELICAN main study, every children's hospital and general hospital with a paediatric ward in Switzerland and each paediatric community care organization were contacted between August and November 2013. Parents whose children fit the eligibility criteria for PELICAN study were mailed an invitation letter by the former treating hospital and asked to fill out an informed consent document accepting or declining study participation (i.e. allowing the use of data from their child's medical charts, the parental questionnaire and/or a parental interview). Completing the questionnaire will be considered a formal agreement to the analysis of the survey data. Additional written informed consent will be obtained from parents who participate in the interviews. All participants in the PELICAN HOME sub-study will be selected based on the inclusion criteria described above.

Parental interviews

Selected parents who have completed the questionnaire and consented to participate in the qualitative part of the study will be contacted by telephone for an appointment. The interviews will be conducted between January 2014–April 2014 by a trained study collaborator at the parents’ home or another place of their preference. The semi-structured interview will last approximately 60 minutes, with a further 30 minutes conceded for questions and clearing statements. Interviews will be audio recorded. An interview guideline has been developed with open-ended questions related to each of the four levels in Feudtner's multilevel system model (Figure 1). This guideline focuses on the parents’ experiences during their child's EOL care at home in the last 4 weeks of life and on their particular needs during this distressing time. It was pilot tested with one affected mother and minor modifications were undertaken. ATLAS.ti 7© software will be used for data management and organization.

Medical charts

Data collection from patients’ medical charts will be conducted between November 2013–May 2014. At each participating study site (hospital, community care centre), local coordinators will be assigned to facilitate logistics concerning medical charts and workspaces. SecuTrial® software will be used for data entry and management. To gather demographic information about paediatric EOL care in Switzerland on the individual system level, patient characteristic variables, e.g. diagnosis, illness trajectory and circumstances at death, will be obtained from patients’ medical charts. To describe the details of paediatric EOL care provision in the home care setting, variables on the family and healthcare system levels will be extracted from patients’ medical charts or from healthcare organizations’ records.

Parental questionnaire survey

Further data pertaining to the individual, family and healthcare system levels and their effects on EOL care provision will be collected via the parental questionnaire. Parents who consent to participate in the quantitative survey will receive a parental questionnaire via normal mail. The Parental PELICAN Questionnaire – PaPEQu, has been developed specifically for the main PELICAN II study. Based on the conceptual model of Truog et al. (2006), it includes six core domains of high-quality family-centred EOL care and related parental needs: (1) Support of the family unit; (2) Communication with the child and family; (3) Ethics and shared decision-making; (4) Relief of pain and other symptoms; (5) Continuity of care; and (6) Grief and bereavement support. For each of the four eligible diagnostic groups (cardiology, neonatology, oncology and neurology), separate versions have been developed and designed for mothers and fathers. Each questionnaire is composed of approximately 100 items (including socio-demographic factors and questions related to overall parental satisfaction). Questions are predominantly closed-ended and are presented in various formats, with the majority either using Likert-type scales or requesting categorical responses. Data collection will be conducted between March 2014 and May 2014.

Data analysis

Qualitative data analysis

Parental interviews will be subjected to ‘thematic analysis’, a qualitative analytic method for identifying various themes, analysing them and reporting patterns in a data set (Braun & Clarke 2006). Themes and patterns pertaining to the EOL care of a child in the home setting will be placed in a semantic context and further examined in relation to the underlying structure of Feudtner's multi-level systems model.

The analytic process is segmented into six steps. In the first, familiarization with the data will be developed through reading and rereading during transcription and initial ideas noted. In the second, interesting features in the overall data set will be assigned initial codes. The third entails arranging these codes into potential themes and enriching them with further information. In the fourth, themes and their relation to the coded extracts will be tested for suitability and a thematic map constructed. In step five, analysis will continue with the refinement of each theme's specific characteristics, and the generation of clear definitions. Finally, in step six, the refined main themes will be examined in the context of Feudtner's multilevel systems model, research questions and existing literature.

Quantitative data analysis

All data will undergo exploratory analysis to describe the data and uncover any data inconsistencies that might impact the validity of the data analysis. Appropriate descriptive statistics will be used to summarize data pertaining to individual variables, considering each variable's level of measurement and the observed distribution of its data. Data will be analysed using IBM SPSS Statistics® 22·0 (IBM Corp., Armonk, NY, USA), with P-values of <0·05 considered significant.

To describe patients’ characteristics and the current provision patterns of EOL care in the home care setting and the parents’ experiences and needs, appropriate measures of central tendency will be used. Data distribution will be assessed via Q-Q-Plot, histograms generated and frequencies calculated. Depending on the distributional properties of the measures, appropriate tests and analyses will be applied (anova, Mann–Whitney, χ2-test, Pearson's correlation coefficient). In the case of normal distribution of the data and to account for the clustering effects of parents of the same child and to test for differences between parents whose child's EOL care took place at home and those whose care took place in the hospital, we will compute a hierarchical linear model.

The extent and pattern of missing data will be described for each patient, and across participants, to discern any non-random patterns of missingness. Methods of handling missing data will be applied according to their volumes and patterns.

Mixed methods data analysis

After concurrent data collection and separate analysis, the major themes identified across the qualitative data set will be compared with quantitative data results using side-by-side comparison on a summary table. Results of this comparison will be discussed in the context of Feudtner's multilevel systems model. Mixed methods analysis will provide a comprehensive picture and a fuller understanding of the parents’ specific experiences and needs.

Ethical considerations

As all participants have lost a child, the study population is particularly vulnerable. However, recent studies have showed that bereaved parents appreciate the opportunity to talk about their loss and share their experiences (Dyregrov 2004, Hynson et al. 2006). In the present study, the data will be collected a minimum of 1-year after the child's death, as this will be outside what is considered the most intense period of grief (Maciejewski et al. 2007). In addition to explaining the relevant details of the study, the invitation letter informs parents of local psychological support resources. Participation in this study is entirely voluntary: participants have the right to withdraw their consent at any time.

All data will be collected, analysed and stored in accordance with the international ethical and scientific quality standard known as Good Clinical Practice (ICH 1996, Graneheim & Lundman 2004). Receiving and returning the encoded parental questionnaire separately from the informed consent documents will guarantee participants’ anonymity. The dataset linking the study identification number to the patients’ names will be encrypted at all times and stored separately. The complete data sets will be stored on a secure server at the Institute of Nursing Science, University of Basel, Switzerland, for a period of 10 years. The PELICAN research project, including the PELICAN HOME sub-study, has been approved by the ethical board of the Canton of Zurich as the leading ethical board, and by all relevant cantonal ethical boards of participating study sites across Switzerland.

Validity and reliability/rigour

Qualitative data

The criteria of credibility, dependability and transferability will guide every step of this study to increase validity in the context of the qualitative approach (Graneheim & Lundman 2004). Concerning data analysis, discussions will be conducted in a research group to ensure the accuracy of the analytic process and the credibility of its results. A pilot interview has been conducted to test the accuracy of the interview guideline.

Quantitative data

Data collectors will receive instructions and training before the start of data collection to assure and enhance data quality. Furthermore, 5% of the charts will be randomly chosen and assessed independently by a second data collector to check quality.

To establish the PaPEQe questionnaire's content validity, it was reviewed by an external review panel of medical and nursing experts. The Item Content Validity Index (I-CVI) averages for understandability were as follows: Cardiology: 0·82; Neonatology 0·82; Neurology 0·84; and Oncology: 0·89. For relevance, the averages were: Cardiology: 0·85; Neonatology: 0·90; Neurology: 0·87; and Oncology: 0·94. Based on this content validation, appropriate modifications have been implemented. The questionnaires have been forward- and back-translated to French and Italian according to the guidelines of (Wild et al. 2005). Prior to finalization, the PaPEQu questionnaire was pilot tested with 15 parent couples and revised as necessary.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

Parents of a child whose EOL care takes place at home carry multiple burdens. Not only do they assume responsibility for the physical care of their child, they do so while moving through the stages of grief at losing that child. Parents often perceive themselves as helpless in the face of their child's suffering, while the lack of professional support in the home care setting may leave them feeling abandoned. Recent studies have shown that paediatric EOL care provision in the home care setting often falls short of affected families’ needs (Junger et al. 2010). Our study will give a deeper insight into these parental needs and expectations in the context of the impacting system factors. Ultimately, it will generate a comprehensive picture of the current state of paediatric EOL provision in the home care setting in Switzerland, which is essential to optimize family-centred EOL care.

Limitation

This study will be subject to certain predictable limitations, particularly involving sample size. Based on our literature review, we estimate that approximately 20% of terminally ill children in Switzerland receive EOL care at home. This might result in a small sample size (expected number: 40–50). Some parents might also not be willing to participate because of the emotional distress participation evokes. Exclusion of parents unable to communicate effectively in any of the three main national languages might also influence the results.

Conclusion

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

This study is the first to collect data on paediatric EOL home care in Switzerland. As such, it will provide urgently needed knowledge to develop needs-driven, family-centred, high-quality paediatric EOL home care services for future EOL patients and their families. Further, it follows the National Strategy for Palliative Care Switzerland 2013–2015 of Switzerland's Federal Office of Public Health and will provide information necessary for future policies and education concerning paediatric EOL care practices in the home care setting.

Funding

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

The planned sub-study PELICAN HOME has received funding from the following sponsors: Swiss Academic of Medical Sciences, Basel, Switzerland (Gottfried and Julia Bangerter-Rhyner-Foundation, Bern, Switzerland) (29 619 CHF), Susy-Rückert Foundation, Basel, Switzerland (40 000 CHF). The main study PELICAN has received funding from following sponsors: Federal Office of Public Health, Switzerland (60 000 CHF), The Swiss Cancer League (189 000 CHF), Nursing Science Foundation, Basel, Switzerland (100 000 CHF), Start Stipend Department Public Health, University of Basel, Switzerland (25 000 CHF).

Author contributions

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References

All authors have agreed on the final version and meet at least one of the following criteria [recommended by the ICMJE (http://www.icmje.org/ethical_1author.html)]:

  • substantial contributions to conception and design, acquisition of data, or analysis and interpretation of data;
  • drafting the article or revising it critically for important intellectual content.

References

  1. Top of page
  2. Abstract
  3. Introduction
  4. The study
  5. Discussion
  6. Conclusion
  7. Funding
  8. Conflict of interest
  9. Author contributions
  10. References
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