Skip to main content
Download PDF

Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study

BMC Palliative Care volume 21, Article number: 104 (2022) Cite this article

Abstract

Background

Caring for children living with life-threatening and life-limiting illnesses can be challenging. Parents’ roles as the main caregivers can be complex with extensive responsibilities. The experiences of family caregivers can provide key insights into the provision of home-based Pediatric Palliative Care (PPC) for seriously ill children. This study is aimed at exploring the experiences of family caregivers of children diagnosed with cancer while receiving home-based PPC.

Methods

This was a qualitative study. This study used semi-structured interviews which were audio-recorded with family caregivers of twelve children diagnosed with cancer who had received home-based PPC. The interviews were transcribed verbatim. The data were analyzed using qualitative content analysis. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist.

Results

Three main themes emerged: (1) The implementation of home-based PPC; (2) The benefits of home-based PPC; and (3) The family caregivers’ hopes of the home-based PPC service and their impressions of home-based PPC. The implementation of home-based PPC described the experiences of family caregivers in receiving home-based PPC provided by nurses with particular attention to the bio-psychosocial-spiritual aspects. Family caregivers experienced several benefits from the home-based PCC service, where holistic care was provided for both the patient and the family. Family caregivers shared their hopes prior to receiving support from competent health care professionals to care for their sick child at home and improve the child's quality of life. They confirmed that these hopes were fulfilled through the home-based PPC service delivered by Rachel House.

Conclusions

Home-based PPC provides several benefits with a positive impact for both the children diagnosed with cancer as well as their families. Nurses involved in the home-based PPC service provide holistic care with a family-centered approach. We believe that children with terminal illnesses and their families need and deserve home-based PPC during difficult times.

Peer Review reports

Introduction

Caring for children living with life-threatening and life-limiting illnesses can be challenging [1]. Due to the prolonged and complicated disease trajectory, parents as the main caregivers experience extensive emotional, physical, psychological, technical and nursing demands [2]. Care can also become more challenging when a child is facing imminent death [3]. To support a family dealing with distressing circumstances while caring for a severely ill child, the palliative care (PC) model has been proposed as a holistic and sensitive approach to help reduce families’ and patients’ suffering [4, 5].

Home-based PC has been widely acknowledged as the holistic care model for patients living with life-threatening and life-limiting illnesses that could result in prolonged suffering [5]. The World Health Organization (WHO) guidelines emphasized that Pediatric Palliative Care (PPC) should begin at the time of diagnosis and be made available for every severely ill child and their family in both hospital and home settings [5]. Home-based PC aims to improve the quality of life of patients and their families by alleviating the devastating symptoms throughout the trajectory of the disease [6]. For children with life-threatening illnesses, PPC is essential [7, 8].

The development of PPC in Indonesia began in 2006 and the home-based service has been developing slowly since then [9]. Several hospitals are currently providing the service, albeit still mainly in Jakarta, the capital city of Indonesia. There is a non-profit organization, Rachel House, that provides home-based PPC for children under 18 years old living with serious illnesses such as cancer and HIV/AIDS [9]. The service is delivered by a group of PPC-trained nurses and receives patient referrals from major hospitals mostly around Jakarta. The nurses provide care and support not only for the children, but also for their families [9, 10].

Acceptance of PC in Indonesia remains a challenge due to cultural barriers. Many parents associate PC with care for the dying. Accordingly, accepting PC service may be interpreted as “giving up the fight” or going against the will of God, leaving them with feelings of guilt and regret, or even opening themselves up to criticism from family members. However, home-based PPC as a model of care is gaining acceptance since home is often the preferred place of care for parents with children living with life-threatening illness [11]. Recent research also showed that more children with life-limiting illness are receiving care at home [12].

Home-based PPC is preferred for children and their families because it is likely to improve the children’s quality of life and their health outcomes (e.g. pain, symptom management and anxiety) and minimize the hospital costs for extended care [13]. Furthermore, it was reported that home-based PPC may reduce caregivers’ psychological burden, helping families manage their sense of loss and grief, leading to a better quality of life [14, 15]. Home-based PPC is also essential to ensure a continuity of care and optimize quality of life throughout the disease trajectory, transitioning patients smoothly between hospital care to home [16].

Other benefits of home-based PPC are likely to emerge as we delve deeper into family caregivers’ experiences with the service, providing personal insights that can be considered as the key impressions of home-based PPC [17]. Research conducted by Gurková et al. [17] highlighted that each family’s experience in caring for a child dying from cancer is unique. The understanding of their experiences can be useful in developing a more effective strategy towards improving the quality of life of children living with a life-threatening illness and their families. This more personalized approach could also help improve the understanding of patient preferences, quality management in healthcare and public accountability [18]. This study is aimed at exploring the experiences of family caregivers of children living with cancer while receiving home-based PPC.

Methods

This qualitative study was conducted with a phenomenological design [19]. This methodology is considered to be the most appropriate approach to explore human lived experiences. The data was collected through in-depth interviews allowing the researchers to gain insights into the caregivers’ experiences while receiving home-based PPC [2, 19]. The reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist [20].

Sample and setting

Purposive sampling technique was used to determine and recruit the family caregivers who were interviewed [21]. The sampling method was initiated by defining certain characteristics of targeted participants based on the inclusion criteria, and then applying the exclusion criteria (Table 1) [2, 19,20,21]. This method is considered to be the appropriate design to conduct a phenomenological study, which is aimed to explore participants’ experience. Based on the criteria set and considering the data saturation process, twelve family caregivers were selected to be interviewed regarding their experiences with home-based PPC service. The number of participants was decided when the data were saturated, where no further new information emerged in the code list. The decision was reached based on discussions among the research team. While data saturation was reached at the eleventh participant, one additional participant was added to ensure that the data was saturated.

Table 1 Participants Inclusion and Exclusion Criteria
Full size table

Ethical acknowledgement

This study was ethically approved by the Medical and Health Research Ethics Committee of the Faculty of Medicine, Public Health and Nursing of Universitas Gadjah Mada, Indonesia (number: KE/FK/0001/EC/2021) and the Health Research Ethics Committee Ngudia Husada Madura School of Health Sciences, Indonesia (number: 724/KEPK/STIKES-NHM/EC/XII/2020). All participants signed an informed consent form prior to data collection and anonymity was assured by assigning an identification number to each participant.

Data collection

Data were collected using in-depth interviews from January to June 2020. The recruitment process used a personal approach toward participants who met the criteria [21]. Participants who expressed interest to participate were invited to be involved in the study. The interview was conducted for 40–90 min. At the beginning of each interview, the interviewers explained the aim of the study and data collection techniques. The informed consent was obtained before proceeding with the individual interviews. All the interviews were done by using a semi-structured interview guide (Table 2), audio-recorded, and transcribed verbatim. All interviews were conducted in Bahasa Indonesia (the national language). The interview guidelines were developed by panel discussions [22] among the researchers, including the principal investigator with expertise in qualitative research methods and palliative care, and three nurses at Rachel House who are active in providing home-based PPC [22].

Table 2 Open-Ended Questions
Full size table

Data Analysis

The data of this study were analyzed with qualitative content analysis, which is characterized by de-contextualization and re-contextualization and generally comprises the following steps: selecting the unit of analysis, coding all the data, revising the coding rules (if necessary), creating and defining the categories, revising the category scheme, and constructing themes [23,24,25,26]. First, data were transcribed after each interview was completed, followed by familiarization of data through re-reading of the transcripts by the research team members (DK, SH, and NJ). Second, at least two research team members met to generate the initial coding of the data. This process was completed before interviewing the next participant. Third, the team (DK, SH, NJ, FA and CE) met for recoding and clustering of the codes into potential categories. Fourth, the categories were analyzed to construct themes by the team. All transcripts were in Bahasa Indonesia, which at the reporting stage was translated into English by the team and proofread by a native English speaker.

Trustworthiness

During the study process, the researchers took several strategies to maintain the rigor of this study [22, 25]. Member checking and investigator triangulation were used to ascertain the credibility of the findings. Agreement prior to the data analysis was achieved through peer debriefing and regular meetings among the research members and consultations with the principal investigator. The confirmability of this study was ensured by employing reflexivity for transparency and consistency throughout the analysis process. Furthermore, journaling and extensive meetings within the research team were conducted regularly for communicating and discussing the various perspectives towards data interpretation. The researchers employed an audit trail to ensure the dependability of this study by field noting and journaling throughout the process. The researchers used thick description and purposive sampling technique to establish the transferability of findings.

Results

There were twelve participants involved in this research. All of the participants were female (mothers) except for one male (father). The age ranged from 20 to 50 years old. Seven of the participants were not working and the other five were working. The participants were parents whose children were living with cancer, acute lymphocytic leukemia (ALL) (n = 3; 25%), retinoblastoma (n = 2; 16.67%), neuroblastoma (n = 2; 16.67%), medulloblastoma (n = 2; 16.67%), rhabdomyosarcoma (n = 2; 16.67%), and atypical meningioma (n = 1; 8.33%). All children had died by the time the interviews were conducted (Table 3).

Table 3 Characteristic participants (n = 12)
Full size table

There were three main themes that emerged: [1] the implementation of home-based PPC; [2] the benefits of home-based PPC; and [3] parents’ hopes from the home-based PPC service and their impressions about home-based PPC (Table 4).

Table 4 Themes and Categories
Full size table
Table 5 Theme 1. The implementation of home-based PPC
Full size table

Theme 1: The implementation of home-based PPC

The first theme that emerged from the participants was the type of care they received through the home-based PPC. There were four categories constructing this theme: how nurses educate parents to provide care for their sick child, how nurses provide care for the patients and families, how nurses accompany patients and parents during the end-of-life phase, and finally, how nurses support parents in their grieving and bereavement process (Table 5).

Theme 2: The benefits of the home-based PPC

The participants conveyed that the home-based PPC provided several benefits. The benefits were holistic in nature, managing the physical symptoms of the patients, providing emotional and psychosocial support for the patients and their families, and finally, the provision of logistical support and financial assistance.

Three categories emerged in Theme 2. The first category was chosen because all twelve participants expressed that the home-based PPC service helped them to better care for and manage their children’s physical symptoms and issues. These could be seen from several statements in Table 6. The second category emerged because ten participants expressed that the home-based PPC service also provided them with emotional and psychosocial support, both for their child and also the family. The statements from the participants about this appear in Table 6 below. The third category was chosen because there were nine participants who mentioned that the home-based PPC service provided them with financial relief. They experienced economic relief while receiving the home-based PPC service. The fourth category appeared because there were seven participants who conveyed that the home-based PPC service had a positive impact on their lives while caring for their sick child. This is reflected in several statements in Table 6 below. The final category in this second theme was the notion from parents that they also received support in logistics and essential items from the home-based PPC service. Eleven participants shared their experience in receiving these logistics support. These are illustrated in the statements in Table 6 below.

Table 6 Theme 2. The benefits of home-based PPC
Full size table

Theme 3: Parents’ hopes from home-based PPC and their impressions about home-based PPC

Parents hoped that the home-based PPC would help improve the quality of life of their children with the assistance of competent professionals who provided quality care through the service. Therefore, parents expressed their feelings and thoughts during and after receiving the home-based PPC experience. All parents experienced an unforgettable time and expressed their gratitude as can be seen in the statements in Table 7.

Table 7 Theme 3. Parents’ hopes from home-based PPC and their impressions about home-based PPC
Full size table

Discussion

This study highlights that the home-based PPC delivered by Rachel House provides holistic care for the patients, as well as for their parents. Parents received education to help them provide care for their sick child and was supported during the end-of-life phase, continuing through to their grieving and bereavement process. Even so, it is not easy for parents to initially accept the home-based PPC service [12]. Acceptance of PC in Indonesia remains a challenge due to cultural issues [27] and also family-related expectations such as: a) caring for a sick family member is a family obligation, b) family believes that they must continue to seek a cure and accepting palliative care equals giving up, c) pressure from extended families and feelings of guilt and regrets, and d) family is concerned that accepting PC means they have to forego treatment. Additionally, there is a prevalent belief that parents should surrender to the will of God and not attempt any interventions [28]. However, home-based PPC is gaining acceptance from families with children living with life-threatening illness as they choose home as the preferred care site.

The implementation of home-based PPC could help parents in dealing with many problems in caring for their children living with life-threatening illnesses. Once the family agrees to receive the home-based PPC service, a nurse from Rachel House is allocated to the patient and visits the family regularly. Some of the greatest fears that parents have while caring for their children living with life-limiting or life-threatening illness at home is not knowing what to do, nor how to cope with the children’s daily needs and deal with their deteriorating condition [29,30,31]. The central tenet of holistic care for both the patient and family in PPC is implemented even at the home setting [29,30,31]. The goals of PPC are to reduce the suffering and improve the quality of life of children living with chronic and terminal illness [30, 32, 33] and provide support for their parents and other family members [30, 34].

In this study, we discovered that parents of children living with cancer experienced several benefits from receiving the home-based PPC service, including parents received help to care and manage the physical issues that occurred as their children’s condition deteriorated and particularly, at the end-of-life phase. For example, one mother expressed her feelings of relief because the Rachel House’s nurse was by her side to hold her hand as her child was at the end of his life. She felt supported and did not feel alone during these difficult times. Furthermore, parents experienced positive impacts on their own wellbeing through the home-based PPC service, such as, having peace of mind, reduced anxiety, time effectiveness, and saving energy. The care provided by the nurses also included support for the patients’ basic and essential needs and even financial assistance. These benefits which had been experienced by the families showed that the home-based PPC service would be beneficial not only for the sick children but also their family. This finding is similar to the previous studies [29,30,31,32,33, 35], and also supported by Kringos et al.’s [18] study that mentioned home-based PPC is essential for a better healthcare quality management, public accountability and patient preferences.

In addition, parents mentioned that they were comforted knowing whom to contact and where to seek help if something were to happen with the children. Parents were also assured by the nurses who would regularly follow-up on the children’s and family’s conditions. Moreover, parents could openly share their feelings, thoughts and fears with the nurses. This assistance might also be comforting for the parents knowing that they were not alone, and there will be someone capable to help them deal with uncertainties [30]. This might also manifest as motivational or psychosocial support for patients and their families.

In this study, parents expressed their hopes from the home-based PPC service and their impressions about home-based PPC. Parents mentioned that their interactions with the Rachel House’s nurses played an important role in meeting the care needs of their sick child. The nurses’ competence and their presence seemed to help the parents feel confident and assured to be at home [12, 30, 31]. Parents could discuss important matters with the nurses because they were knowledgeable and skilled. The professional caregivers soothe the patients’ and their parents’ anxieties and reduce their burden by showing their competence and compassion [36,37,38]. Parents named several attributes that were noticeable in the nurses, for instance, good clinical skills in providing care, excellent communication skills throughout the care process (both to patients and the family); good knowledge about the children’s condition and disease trajectory, and their effectiveness in helping bridge the communication between patients and their pediatric oncologists.

Parents as family caregivers in this study mentioned that the home-based PPC helped build their capacity as caregivers. As mentioned in another study [31], home-based PPC nurses were not only helping the patients with symptom management, but they also helped build the capacity of the parents to provide daily care for their sick child. The parents conveyed that they were informed about what their children needed on a daily basis and even trained to apply several basic skills to care for the child, such as feeding by nasogastric tube, wound care, pain management, hyperthermia management, and bleeding management. This gave the parents the opportunity to help their sick child as best as they could and enhance parent–child bonding [31]. The provision of PPC could also be associated with improving the psychosocial outcomes in the family [30, 39]. This positive impact is possible because during the delivery of palliative care, parents were trained and equipped with the skills to manage the child’s symptoms. Moreover, rather that receiving intensive treatment at the end-of-life that may increase the suffering of the child and reduce the time with their parents, the holistic PPC is focused on managing the child’s pain and symptoms while preparing the parents for the end-of-life, which allows parents to spend these precious remaining days with their children [30, 39].

Strengths and Limitations of the Study

This is the first study that explores the experiences of family caregivers in receiving home-based PPC in Indonesia. Given the paucity of PPC in Indonesia, the findings of this study could provide insights into the beneficiaries’ experiences and their needs, rather than that of the medical professionals’, particularly from caregivers of children diagnosed with cancer.

The first limitation of this study is that most of the participants were women (mothers). This is because in Indonesia, women are the dominant family caregivers, whether it be caring for children or elderly, and whether they are healthy or sick. Based on this women-dominant factor in the participants, this study cannot be generalized considering that the experiences of mothers caring for sick children are not necessarily the same as the experiences of fathers caring for sick children. The second limitation of this study is that all the children were diagnosed with cancer, and therefore this study cannot be generalized considering that the experiences of family caregivers caring for sick children with cancer might be different from the experiences of those caring for children with other conditions such as neurologic, pulmonary, genetic. Another limitation is that while caring for terminally-ill children must be unforgettable and deeply remembered by the parents, the recall bias could be possible with the passage of time since the moment of loss.

Conclusions

Family caregivers acknowledged the importance of the home-based PPC service and experienced several benefits in the physical, psychosocial, emotional, spiritual and financial aspects. The sustainability and the expansion of the Rachel House’s home-based PPC service can help increase its contribution towards improving the quality of life of children living with life-threatening illness and their families, particularly in accompanying families facing the difficult times of losing their loved ones.

Availability of data and materials

The datasets used and analyzed during the current study are not publicly available due to restraints of the ethical permit. Some data may be available from the corresponding author upon reasonable request.

Abbreviations

AAP:

American Academy of Pediatrics

ALL:

Acute lymphocytic leukemia

COREQ:

Consolidated Criteria for Reporting Qualitative Research

HBPC:

Home-based Palliative Care

HCPs:

Health Care Professionals

NHPCO:

National Hospice and Palliative Care Organization

PPC:

Pediatric Palliative Care

WHO:

World Health Organization

References

  1. Jones BL. The challenge of quality care for family caregivers in pediatric cancer care. Semin Oncol Nurs. 2012;28(4):213–20. WB Saunders

  2. Woodgate RL, Edwards M, Ripat JD, Borton B, Rempel G. Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs. BMC Pediatr. 2015;15(1):1–15.

    Article  Google Scholar 

  3. Enguidanos S, Housen P, Penido M, Mejia B, Miller JA. Family members’ perceptions of inpatient palliative care consult services: a qualitative study. Palliat Med. 2014;28(1):42–8.

    Article  PubMed  Google Scholar 

  4. Society of Critical Care Medicine. National Consensus Project: Clinical Practice Guidelines for Quality Palliative Care Mount Prospect, IL , USA: The Society of Critical Care Medicine, SCCM, and Critical Care Congress; 2009 [Available from: http://www.learnicu.org/Docs/Guidelines/NCPPalliativeCare2ndEd.pdf.

  5. WHO. Global atlas of palliative care at the end of life Geneva: World Health Organization; 2014 [Available from: http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf.

  6. NHPCO. Standards of practice for pediatric palliative care and hospice Virginia, The U.S.A: National Hospice and Palliative Care Organization; 2009 [Available from: https://www.nhpco.org/wp-content/uploads/2019/07/Pediatric_Standards.pdf.

  7. Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kerry S, et al. Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer. 2011;57(3):361–8.

    Article  PubMed  Google Scholar 

  8. Reigada C, Pais-Ribeiro JL, Novella A, Gonçalves E. The caregiver role in palliative care: a systematic review of the literature. Health Care Curr Rev. 2015;3:2.

  9. Chandra L, Toh YP. Establishment of Home-Based Pediatric Palliative Care: The Indonesian Experience. In Palliative Care for Chronic Cancer Patients in the Community. Springer, Cham; 2021. p. 513–7.

  10. Downing J, Powell RA, Marston J, Huwa C, Chandra L, Garchakova A, et al. Children’s palliative care in low-and middle-income countries. Arch Dis Child. 2016;101(1):85–90.

  11. NHPCO. Community-Based Palliative Care Demonstration Model Virginia, The U.S.A: National Hospice and Palliative Care Organization; 2018 [Available from: https://www.nhpco.org/hospice-care-overview/models-and-demos/attachment/nhpco_x_coalition_cbpc_demo/.

  12. Verberne LM, Kars MC, Schouten-van Meeteren AYN, van den Bergh EMM, Bosman DK, Colenbrander DA, et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. Eur J Pediatr. 2019;178(7):1075–85.

    Article  PubMed  PubMed Central  Google Scholar 

  13. Dhiliwal SR, Muckaden M. Impact of specialist home-based palliative care services in a tertiary oncology set up: a prospective non-randomized observational study. Indian J Palliat Care. 2015;21(1):28.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Goldhagen J, Fafard M, Komatz K, Eason T, Livingood WC. Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study. BMC Palliat Care. 2016;15(1):1–12.

    Article  Google Scholar 

  15. Kassam A, Skiadaresis J, Alexander S, Wolfe J. Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Pediatr Blood Cancer. 2014;61(5):859–64.

    Article  PubMed  Google Scholar 

  16. Kaye EC, Rubenstein J, Levine D, Baker JN, Dabbs D, Friebert SE. Pediatric palliative care in the community. CA Cancer J Clin. 2015;65(4):315–33.

    Article  Google Scholar 

  17. Gurková E, Andraščíková I, Čáp J. Parents’ experience with a dying child with cancer in palliative care. Central European journal of nursing and midwifery. 2015;6(1):201–8.

    Article  Google Scholar 

  18. Kringos DS, Sunol R, Wagner C, Mannion R, Michel P, Klazinga NS, et al. The influence of context on the effectiveness of hospital quality improvement strategies: a review of systematic reviews. BMC Health Serv Res. 2015;15(1):1–13.

    Article  Google Scholar 

  19. Creswell JW, Poth CN. Qualitative inquiry and research design: Choosing among five approaches. Sage publications; 2016.

  20. Walsh S, Jones M, Bressington D, McKenna L, Brown E, Terhaag S, et al. Adherence to COREQ reporting guidelines for qualitative research: A scientometric study in nursing social science. Int J Qual Methods. 2020;19:1609406920982145.

    Article  Google Scholar 

  21. Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract. 2018;24(1):9–18.

    Article  PubMed  Google Scholar 

  22. Korstjens I, Moser A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract. 2018;24(1):120–4.

    Article  PubMed  Google Scholar 

  23. Bengtsson M. How to plan and perform a qualitative study using content analysis. NursingPlus Open. 2016;2:8–14.

    Article  Google Scholar 

  24. Downe-Wamboldt B. Content analysis: method, applications, and issues. Health Care Women Int. 1992;13(3):313–21.

    Article  CAS  PubMed  Google Scholar 

  25. Lindgren B-M, Lundman B, Graneheim UH. Abstraction and interpretation during the qualitative content analysis process. Int J Nurs Stud. 2020;108: 103632.

    Article  PubMed  Google Scholar 

  26. Vaismoradi M, Snelgrove S. Theme in qualitative content analysis and thematic analysis. InForum Qualitative Sozialforschung/Forum. Qual Soc Res. 2019;20(3).

  27. Effendy C, Vernooij-Dassen M, Setiyarini S, Kristanti MS, Tejawinata S, Vissers K, et al. Family caregivers’ involvement in caring for a hospitalized patient with cancer and their quality of life in a country with strong family bonds. Psychooncology. 2015;24(5):585–91.

  28. Sisk BA, Feudtner C, Bluebond-Langner M, Sourkes B, Hinds PS, Wolfe J. Response to suffering of the seriously ill child: a history of palliative care for children. Pediatrics. 2020;145(1).

  29. Boyden JY, Ersek M, Deatrick JA, Widger K, LaRagione G, Lord B, et al. What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting? J Pain Symptom Manage. 2021;61(1):12–23.

    Article  PubMed  Google Scholar 

  30. Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. J Clin Oncol. 2020;38(9):954.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Yeung E, Sadowski L, Levesque K, Camargo M, Vo A, Young E, Duan E, Tsang JL, Cook D, Tam B. Initiating and integrating a personalized end of life care project in a community hospital intensive care unit: A qualitative study of clinician and implementation team perspectives. J Eval Clin Prac. 2021;27(6):1281–90.

  32. Chong LA, Khalid F. Paediatric palliative care at home: a single centre’s experience. Singapore Med J. 2016;57(2):77–80.

  33. Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved Quality of Life at End of Life Related to Home-Based Palliative Care in Children with Cancer. J Palliat Med. 2014;18(2):143–50.

    Article  PubMed  Google Scholar 

  34. Winger A, Kvarme LG, Løyland B, Kristiansen C, Helseth S, Ravn IH. Family experiences with palliative care for children at home: a systematic literature review. BMC Palliat Care. 2020;19(1):165.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Andriastuti M, Halim PG, Tunjungsari E, Widodo DP. Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial. J Clin Oncol. 2019;38(9):954–62.

    Google Scholar 

  36. Akard TF, Hendricks-Ferguson VL, Gilmer MJ. Pediatric palliative care nursing. Ann Palliat Med. 2019;8(Suppl 1):S39-48.

    Article  PubMed  Google Scholar 

  37. Wiener L, Rosenberg AR, Lichtenthal WG, Tager J, Weaver MS. Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings. Palliat Support Care. 2018;16(6):706–11.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Scaccabarozzi G, Lovaglio PG, Limonta F, Floriani M, Pellegrini G. Quality assessment of palliative home care in Italy. J Eval Clin Pract. 2017;23(4):725–33.

    Article  PubMed  Google Scholar 

  39. Schouten B, Hellings J, Vankrunkelsven P, Mebis J, Bulens P, Buntinx F, et al. Qualitative research on the Belgian Cancer Rehabilitation Evaluation System (CARES): An evaluation of the content validity and feasibility. J Eval Clin Pract. 2017;23(3):599–607.

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

The authors acknowledge the support and cooperation of the nurses in Rachel House and thank all the participants for their contributions to the study.

Funding

This study was funded by Irish Aid that give us a grant to conduct this study through the In-Country Micro Project Scheme (ICMPS) 2020.

Author information

Authors and Affiliations

  1. Department of Medical Surgical Nursing, Faculty of Medicine, Public Health and Nursing, Universitas, Gadjah Mada, Yogyakarta, Indonesia

    Christantie Effendy

  2. Department of Nursing, Sekolah Tinggi Ilmu Kesehatan Tarumanagara, Jakarta, Indonesia

    Deby Kristiani Uligraff

  3. Rachel House, Jakarta, Indonesia

    Selvia Harum Sari, Fany Angraini & Lynna Chandra

Authors
  1. Christantie Effendy
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Deby Kristiani Uligraff
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Selvia Harum Sari
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Fany Angraini
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Lynna Chandra
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

CE contributed to designing the study, DK and CE drafted the manuscript, SH and FA collected the data. All authors analyzed the data. The final manuscript was approved by all authors before being submitted for publication. All authors approved the final manuscript.

Corresponding author

Correspondence to Christantie Effendy.

Ethics declarations

Ethics approval and consent to participate

All authors confirm that all methods were done in accordance with the basic principles of ethics, guidelines and regulations to conduct the study. All respondents signed informed consent forms to participate in this study and agreed to be published.

The study has been approved by the Medical and Health Research Ethics Committee (MHREC), of the Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia (number: KE/FK/0001/EC/2021) and the Health Research Ethics Committee Ngudia Husada Madura School of Health Sciences, Indonesia (number: 724/KEPK/STIKES-NHM/EC/XII/2020).

Consent for publication

Not applicable.

Competing interests

There are no competing interests.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Effendy, C., Uligraff, D.K., Sari, S.H. et al. Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study. BMC Palliat Care 21, 104 (2022). https://0-doi-org.brum.beds.ac.uk/10.1186/s12904-022-00986-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://0-doi-org.brum.beds.ac.uk/10.1186/s12904-022-00986-5

Keywords

BMC Palliative Care

ISSN: 1472-684X

Contact us