Palliative Care Guidelines for Physicians and Nurses Caring for Children and Their Families in the Pediatric Intensive Care Units: A Participatory Action Research Study

Main Article Content

Jutarat Mesukko
Sue Turale
Usanee Jintrawet
Srimana Niyomkar

Abstract

         Pediatric palliative care in intensive care units entails challenging tasks for healthcare professionals, and distressing times for parents and families of children around the world.It is vital that care is of the highest quality and is focused on the needs of the child and family members.Guidelines for such care were urgently needed in Thailand for physicians and nurses caring for the children and their families to enhance their quality of life,provide a good death for children,and appropriate support for families.A 5-phase participatory action research study was conducted in a university hospitalin northernThailand,and findings from the first three phases are reported here.Forty-four healthcare professionals,consisting of physicians,registered nurses and practical nurses,working at two pediatric intensive care units in a university hospital in northern Thailand were purposively recruited.In-depth interviews and focused group discussions were the primary means of collecting data.Data were analyzed by content analysis
       Findings revealed five critical components that needed to be included in the Palliative Care Guidelines forPhysiciansandNursesinPediatric IntensiveCare:Breaking bad news,Decision making,Carebefore death,Imminent death care,and Care after death.Nurses and physicians can use guidelines to ensure a dignified death and quality of palliative care for a child in a pediatric intensive care unit.The benefit of the guidelines can be extended to support a child’s family members through their difficult times and experiences.Our findings also help inform the international community of nurses and physicians caring for children in palliation.The guidelines will distributed to different locations for testing to ensure relevancy for practice and may be adapted for contextual and cultural relevancy elsewhere.

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1.
Mesukko J, Turale S, Jintrawet U, Niyomkar S. Palliative Care Guidelines for Physicians and Nurses Caring for Children and Their Families in the Pediatric Intensive Care Units: A Participatory Action Research Study. PRIJNR [Internet]. 2020 Mar. 14 [cited 2022 Aug. 16];24(2):202-18. Available from: https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/188181
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References

WHO. Maternal, newborn, child and adolescent health: New quality of care standards to save lives and improve the health of children and young adolescents. [accessed 24 April 2018]. Available from: http://www.who.int/maternal_child_ adolescent/topics/quality-of-care/quality-standardschild/en/

Matchim Y, Aud M. Hospice care: A cross-cultural comparison between the United States and Thailand. J of Hospice and Pallia Nurs. 2009; 11(5): 262-268.

Butler AE, Hall H, Willetts G, Copnel B. Family experience and PICU death:A meta-synthesis. Pediatrics. 2015; 136 (4): 961-973.

Short SR, Thienprayoon R. Pediatric palliative care in the intensive care unit and questions of quality: A review of the determinants and mechanisms of high-quality palliative care in the pediatric intensive care unit (PICU). Transl Pediatr. 2018; 7(4):326-343.

Burns JP, Sellers DE, Meyer EC. Epidemiology of death in the pediatric intensive care unit at Five U.S. teaching hospitals. Crit Care Med. 2014; 42(9): 2101–2108.

Maharaj Nakorn Chiang Mai Hospital. Statistic of mortality rate in the PICU at Maharaj Nakorn Chiang Mai Hospital; 2017.

Blume ED, Balkin EM, Aiyagari R, Ziniel S, Beke DM, Thiagaraja R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: An exploratory study. Pediatr Crit Care Med. 2014; 15(4):336–342.

Kon AA, Morrison W. Shared Decision-making in pediatric practice: A broad view. Pediatrics. 2018; 142(13):130–132.

Meert KL, Keele L, Morrison W, Berg RA, Dalton H, Newth CJ, et al. End-of-life practices among tertiary care pediatric intensive care unit in the U.S.: A multicenter study. Pediatric Crit Care Med. 2015; 16(7): e231–e238.

Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI., Rosenberg A, et al. Symptoms and distress in children with advanced cancer: Prospective patient-reported outcomes from the PediQUEST study. J of Clin Oncology. 2015; 33(17): 1928-1935.

Halal GM, Piva JP, Patrícia M Lago, Halal MG, Cabral FC, Nilson C, et al. Parents' perspectives on the deaths of their children in two Brazilian pediatric intensive care units. Intern J of Pall Nurs. 2013; 19 (10): 495-502.

Judy DE , Rebecca AA, Ann CL, Kathleen AP, Erin KK, Joanna H Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017; 45(1): 103-128.

Lamiani G, Giannini A, Fossati I, Prandi E, Vegni E. Parental experience of end-of-life care in the pediatric intensive care unit. Minerva Anestesiol. 2013; 79(12):1334-1343.

October TW, Hinds PS, Wang J, Dizon Z B, Cheng YI, Roter DL. Satisfaction with communication is associated with physician patient-centered communication patterns during family conferences. Pediatr Crit Care Med. 2016; 17(6): 490–497.

Forsner M, Mattsson J. Caring for dying children in the pediatric intensive care unit, nurses and parent’s perspective. Online Journal of Complimentary & Alternative Medicine [Internet]. 2019;1(2):1–7. Available from: http://urn. kb.se/resolve?urn=urn:nbn:se:rkh:diva-2823

Weaver MS, Heinze KE, Kelly KP, Wiener L, Casey RL, Bell CJ, Wolfe J, Garee AM, Watson A, Hinds PS. Palliative care as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015 Dec;62 Suppl 5(Suppl 5):S829-33. doi: 10.1002/pbc.25695. PubMed PMID: 26700928; PubMed Central PMCID: PMC5198905.

Doorenbos A, Lindhorst T, Starks H, Aisenberg E, Curtis JR, Hays R. Palliative care in the pediatric ICU: challenges and opportunities for family-centered practice. J Soc Work End Life Palliat Care. 2012;8(4):297-315. doi: 10. 1080/15524256.2012.732461. PubMed PMID: 23194167; PubMed Central PMCID: PMC3647033.

Polit, DF, Beck CT. Nursing research: generating and assessing evidence for nursing practice. (10th edition) Philadelphia, Pa.: Wolters Kluwer; 2017.

Kemmis, S, McTaggart, R. The action research planner. Victoria: Deakin University Press; 1988.

Lincoln YS, Guba EG. Naturalistic inquiry. Thousand Oaks, Ca: Sage; 1985.

Curtis JR, Treece PD, Gold J, Nielsen EL, Ciechanowski PS, Shannon SE, et al. Randomized trial of communication facilitators to reduce family distress and intensity of endof-life care. Am J Respir Crit Care Med. 2016; 193 (2): 154-62.

Aein F, Delaram M. Giving bad news: A qualitative research exploration. Iran Red Crescent Med J. 2014; 16(6):e8197.

Monden KR, Gentry L, Cox TR. Delivering bad news to patients. Proc (Bayl Univ Med Cent). 2016 Jan;29(1): 101-2. doi: 10.1080/08998280.2016.11929380. PubMed PMID: 26722188; PubMed Central PMCID: PMC4677873.

Naik SB. Death in the hospital: Breaking the bad news to the bereaved family. Indian J Crit Care Med. 2013; 17 (3): 15178-181.

Sisk BA., Bluebond-Langner M, Wiener L, Mack J, Wolfe J. Prognostic disclosures to children: A historical perspective. Pediatrics. 2016; 138(3): 1-10.

Jalmsell L, Lövgren M, Kreicbergs U, Henter JI, Frost BM. Children with cancer share their views: Tell the truth but leave room for hope. Acta Paediatrica.2016; 105 (9) 1094-1099.

Coynea I, Amorya A, Kiernanb G, Gibson F. Children's participation in shared decision-making: Children, adolescents, parents and healthcare professionals' perspectives and experiences. Euro J of Oncol Nurs. 2014; 18(3) 273-280.

Morrison W, Faerber J, Hexem K, Ruppe M, Feudtner C. Children's hospital ICU nurse and physician rankings of important considerations in pediatric end-of-life decision making. AJOB Empirical Bioethics. 2015; 6 (3): 50-58.

D’Angelo D, Mastroianni C, Hammer JM, et al. Continuity of care during end of life: an evolutionary concept analysis. Int J Nurs Knowl. 2015; 26: 80–89. 9. 24.

Eerden M , Hasselaar J, Payne S, Varey S, Schwabe S, Radbruch L, et al. How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries. Pall Med. 2017; 31(10) 946 –955.

Gardiner C, Ingleton C, Gott M, et al. Exploring the transition from curative care to palliative care: a systematic review of the literature. BMJ Support. Palliat Care.2015; 5: 335–342.

Almaawiy U, Pond GR, Sussman J, et al. Are family physician visits and continuity of care associated with acute care use at end-of-life? A population-based cohort study of homecare cancer patients. Palliat Med.2014; 28: 176–183.

Hartogh GD. Suffering and dying well: on the proper aim of palliative care. Med Health Care Philos. 2017 Sep; 20(3):413-424. doi: 10.1007/s11019-017-9764-3. PubMed PMID: 28374105; PubMed Central PMCID: PMC5569128.

Arutyunyan T, Odetola F, Swieringa R, Niedner M. Religion and spiritual care in pediatric intensive care unit: Parental attitudes regarding physician spiritual and religious inquiry. Amer J of Hospice and Pallia Med. 2016; 35(1): 28- 33.

Hawthorne DM., Youngblut JM, Brooten F. Parent spirituality, grief, and mental health at 1 and 3 months after their infant's/child's death in an intensive care unit. J of Ped Nurs. 2016; 31(1): 73-80.

Hui D, dos Santos R, Chisholm G, et al. Clinical signs of impending death in cancer patients. Oncologist. 2014; 19:681–7.

White N, Harries P, Harris AJ, Vickerstaff V, Lodge P, McGowan C, et al. How do palliative care doctors recognize imminently dying patients? A judgement analysis. BMJ. 2018; 8: 1-9.

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 Pallia Med2015; 18(2). Published Online: 26 Jan 2015 https://doi.org/10.1089/jpm.2014.0285

Bluebond-Langner M, Beecham E, Candy B, Langner R, Jones L. Preferred place of death for children and young people with life-limiting and life-threatening conditions: A systematic review of the literature and recommendations for future inquiry and policy. Pallia Medic. 2013; 27(8): 705 –713.

National Hospice and Palliative Care Organization. Partnering for children: pediatric outreach guide. http://www.caringinfo .org/files/public/outreach /Outreach_Guide_Pediatric. pdf Item No. 821397. Accessed August 17, 2015.

Rodgers D,Calmes B, Grotts J. Nursing care at the time of death: A bathing and honoring practice. Oncol Nurs Forum. 2016;43(4):363-371.

Mullen JE, Reynolds MR, Larson JS. Caring for pediatric patients' families at the child's end of life. Crit Care Nurse. 2015; 35(6): 46-55.

Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospital‐ based bereavement services following the death of a child: A mixed study review. Palliat Med. 2015; 29:193–210.

Granek L, Barrera M, Scheinemann K, Bartels U. When a child dies: Pediatric oncologists' follow up practices with families after the death of their child. Psychoncology. 2015; 24(12):1626-31.

Forster E, Paediatric AH. Death and dying: exploring coping strategies of health professionals and perceptions of support provision. Intern J of Pallia Nurs. 2015; 21(6): 294-301.

Carton, ER. Hupcey, JE. The forgotten mourners addressing health care provider grief: Asystematic review. Journal of Hospice & Palliative Nursing. 2014; 16(5): 291-303.

McDermott A, Brook I, Ben-Isaac E. Peer-debriefing after distressing patient care events: A workshop for pediatric residents. MedEdPORTAL. 2017 Sep 5;13:10624. doi: 10.15766/mep_2374-8265.10624. PubMed PMID: 30800825; PubMed Central PMCID: PMC6354715.

Chen C, Chow AYM., Tang S. Bereavement process of professional caregivers after deaths of their patients: A meta-ethnographic synthesis of qualitative studies and an integrated model, Int J Nurs Stud. 2018; 88: 104-113.

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