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BMC Palliative Care
Published in: BMC Palliative Care 1/2017

Open Access 01-12-2017 | Research article

A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making

Authors: Clare Delany, Vicki Xafis, Lynn Gillam, Jo-anne Hughson, Jenny Hynson, Dominic Wilkinson

Published in: BMC Palliative Care | Issue 1/2017

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Abstract

Background

Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians’ views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child.

Methods

Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions.

Results

Data analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, ‘I’m not alone in this’, and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care.

Conclusion

The interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.
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Literature
1.
Larcher V. Ethical considerations in neonatal end-of-life care. Semin Fetal Neonatal Med. 2013;18(2):105–10.CrossRefPubMed
2.
American Academy of Pediatrics Committee on Fetus And Newborn. Noninitiation or Withdrawal of Intensive Care for High-Risk Newborns. Pediatrics. 2007;119(2):401–3.CrossRef
3.
British Medical Association. Withholding and Withdrawing Life-Prolonging Medical Treatment: Guidance for Decision Making. Thirdth ed. Malden, Mass, Oxford: Blackwell; 2007.
4.
5.
Royal College of Paediatrics and Child Health: Witholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice In., Second edn: Royal College of Paediatrics and Child Health; 2004.
6.
Charles C, Gafni A, Whelan T. Decision-making in the physician–patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. 1999;49(5):651–61.CrossRefPubMed
7.
MacKean GL, Thurston WE, Scott CM. Bridging the divide between families and health professionals' perspectives on family-centred care. Health Expect. 2005;8(1):74–85.CrossRefPubMedPubMedCentral
8.
Caeymaex L, Speranza M, Vasilescu C, Danan C, Bourrat MM, Garel M, Jousselme C. Living with a crucial decision: A qualitative study of parental narratives three years after the loss of their newborn in the NICU. PLoS ONE. 2011;6(12):e28633.CrossRefPubMedPubMedCentral
9.
Bronner MB, Peek N, Knoester H, Bos AP, Last BF, Grootenhuis MA. Course and predictors of posttraumatic stress disorder in parents after pediatric intensive care treatment of their child. J Pediatr Psychol. 2010;35(9):966–74.CrossRefPubMed
10.
Lefkowitz DS, Baxt C, Evans JR. Prevalence and correlates of postrraumatic stress and postpartum depression in parents of infants int he Neonatal Intensive Care Unit (NICU). J Clin Psychol Med Settings. 2010;17(3):230–7.CrossRefPubMed
11.
Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):336–46.CrossRefPubMed
12.
Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, Annane D, Bleichner G, Bollaert PE, Darmon M, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94.CrossRefPubMed
13.
Meert KL, Thurston CS, Thomas R. Parental coping and bereavement outcome after the death of a child in the pediatric intensive care unit. Pediatr Crit Care Med. 2001;2(4):324–8.CrossRefPubMed
14.
Sharman M, Meert KL, Sarnaik AP. What influences parents' decisions to limit or withdraw life support? Pediatr Crit Care Med. 2005;6(5):513–8.CrossRefPubMed
15.
Meyer EC, Burns JP, Griffith JL, Truog RD. Parental perspectives on end-of-life care in the pediatric intensive care unit. Crit Care Med. 2002;30(1):226–31.CrossRefPubMed
16.
Meert KL, Donaldson AE, Newth CJL, Harrison R, Berger J, Zimmerman J, Anand KJS, Carcillo J, Dean JM, Willson DF, et al. Complicated grief and associated risk factors among parents following a child's death in the pediatric intensive care unit. Arch Pediatr Adolesc Med. 2010;164(11):1045–51.CrossRefPubMedPubMedCentral
17.
Gillam L, Sullivan J. Ethics at the end of life: Who should make decisions about treatment limitation for young children with life-threatening or life-limiting conditions? J Paediatr Child Health. 2011;47(9):594–8.CrossRefPubMed
18.
Truog RD, E M, Burns JP. Toward interventions to improve end-of-life care in the pediatric intensive care unit. Crit Care Med. 2006;24(11 Suppl):S373–379.CrossRef
19.
Verkerk MA, Lindemann H, McLaughlin J, Scully JL, Kihlbom U, Nelson J, Chin J. Where families and healthcare meet. J Med Ethics. 2015;41(2):183–5.CrossRefPubMed
20.
Wilkinson D. The window of opportunity for treatment withdrawal. Arch Pediatr Adolesc Med. 2011;165(3):211–5.CrossRefPubMed
21.
Wilkinson D. The window of opportunity: decision theory and the timing of prognostic tests for newborn infants. Bioethics. 2009;23(9):503–14.CrossRefPubMed
22.
Wilkinson D. "We don't have a crystal ball…" Neonatologists' views on prognosis, magnetic resonance imaging and treatment withdrawal for infants with birth asphyxia. Monash Bioeth Rev. 2010;29(1):5.1–9.CrossRef
23.
Wilkinson D. MRI and withdrawal of life support from newborn infants with hypoxic-ischemic encephalopathy. Pediatrics. 2010;126(2):e451–458.CrossRefPubMed
24.
Pector EA. Views of bereaved multiple-birth parents on life support decisions, the dying process, and discussions surrounding death. J Perinatol. 2004;24(1):4–10.CrossRefPubMed
25.
Menghini KG. Designing and evaluating parent educational materials. Adv Neonatal Care. 2005;5(5):273–83.CrossRefPubMed
26.
Xafis V, Wilkinson D, Sullivan J. What information do parents need when facing end-of-life decisions for their child? A meta-synthesis of parental feedback. BMC Palliative Care 2015:14(19);1–7.
27.
Keenan HT, Doron MW, Seyda BA. Comparison of Mothers' and Counselors' Perceptions of Predelivery Counseling for Extremely Premature Infants. Pediatrics. 2005;116(1):104–11.CrossRefPubMed
28.
Bialoskurski MM, Cox CL, Wiggins RD. The relationship between maternal needs and priorities in a neonatal intensive care environment. J Adv Nurs. 2002;37(1):62–9.CrossRefPubMed
29.
Arockiasamy V, Holsti L, Albersheim S. Fathers' experiences in the neonatal intensive care unit: A search for control. Pediatrics. 2008;121(2):e215–22.CrossRefPubMed
30.
Kavanaugh K, Savage T, Kilpatrick S, Kimura R, Hershberger P. Life support decisions for extremely premature infants: Report of a pilot study. J Pediatr Nurs. 2005;20(5):347–59.CrossRefPubMed
31.
32.
Smith J, Kvinsland B. In: Duris R, Bonniwell D, editors. Life’s Toughest Moments:A Parent’s Guide When Facing End of Life Decisions With Their Child. Seattle: CP & Publishing; 2006.
33.
Dunn H. Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness. 5th ed. VA, USA: A & A Publishers; 2009.
34.
Xafis V, Gillam L, Hynson J, Sullivan J, Cossich M, Wilkinson D. Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions. J Palliat Med. 2015;18(11):945–55.CrossRefPubMedPubMedCentral
35.
Wilkinson D, Gillam L, Hyson J, Sullivan J, Xafis V. Caring Decisions. A handbook for parents facing end-of-life decisions for their child. Melbourne: The Royal Children's Hospital; 2013.
36.
Lotz J, Jox R, Borasio G, Führer, M. "Pediatric advance care planning: a systematic review." Pediatrics. 2013;131(3):e873-80.
37.
Nelson JE, Puntillo KA, Pronovost PJ, Walker AS, McAdam JL, Ilaoa D, Penrod J. In their own words: patients and families define high-quality palliative care in the intensive care unit. Crit Care Med. 2010;38(3):808.CrossRefPubMedPubMedCentral
38.
Pollard S, Bansback N, Bryan S. Physician attitudes toward shared decision making: A systematic review. Patient Educ Couns. 2015;98(9):1046–57.CrossRefPubMed
39.
Deschepper R, Bernheim JL, Stichele RV, Van den Block L, Michiels E, Van Der Kelen G, Mortier F, Deliens L. Truth-telling at the end of life: A pilot study on the perspective of patients and professional caregivers. Patient Educ Couns. 2008;71:52–6.CrossRefPubMed
40.
Finset A. The elephant in the room: How can we improve the quality of clinical communication during the last phases in patients’ lives? Patient Educ Couns. 2016;99:1–2.CrossRefPubMed
41.
Skipper M, Nøhr SB, Jacobsen TK, Musaeus P. Organisation of workplace learning: a case study of paediatric residents’ and consultants’ beliefs and practices. Adv Health Sci Educ. 2015;21:1–18.
42.
Blumer H. Symbolic interactionism: Perspective and method. Berkeley: Univ of California Press; 1986.
43.
Quinn PM. Qualitative research and evaluation methods. California: Sage Publications Inc; 2002.
44.
Atkinson R, Flint J. Accessing hidden and hard-to-reach populations: Snowball research strategies. Soc Res Update. 2001;33(1):1–4.
45.
Guillemin M, Gillam L. Ethics, reflexivity, and “ethically important moments” in research. Qual Inq. 2004;10(2):261–80.CrossRef
46.
Schmidt C: The analysis of semi-structured interviews. In: A companion to qualitative research. edn. Edited by Flick E, von Kardoff E, Steinke I: Sage Publishing; 2004: 253–258.
47.
Hennink MM, Kaiser BN, Marconi VC: Code Saturation Versus Meaning Saturation: How Many Interviews Are Enough? Qual Health Res 2016. doi:1049732316665344​.
48.
Charmaz K: Constructing grounded theory: Sage; 2014.
49.
Polit DF, Beck CT: Nursing research: Principles and methods: Lippincott Williams & Wilkins; 2004.
50.
Brinchmann SB, Førde R, Nortvedt P. What Matters to the Parents? a qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002;9(4):388–404.CrossRefPubMed
51.
Zwaanswijk M, Tates K, van Dulmen S, Hoogerbrugge PM, Kamps WA, Bensing JM. Young patients', parents', and survivors' communication preferences in paediatric oncology: Results of online focus groups. BMC Pediatrics. 2007;7:35.CrossRefPubMedPubMedCentral
52.
Smith T, Handzo G. Textbook of Palliative Care Communication. USA: Oxford University Press; 2015.
53.
Eden OB, Black I, MacKinlay GA, Emery AE. Communication with parents of children with cancer. Palliat Med. 1994;8:105–14.CrossRefPubMed
54.
Durall A, Zurakowski D, Wolfe J. Barriers to conducting advance care discussions for children with life-threatening conditions. Pediatrics. 2012;129(4):e975–982.CrossRefPubMed
55.
Australian Commission on Safety and Quality in Health Care: Safety and Quality of End-of-life Care in Acute Hospitals: A Background Paper. Sydney: Commonwealth of Australia; 2013.
56.
Strand P, Edgren G, Borna P, Lindgren S, Wichmann-Hansen G, Stalmeijer RE. Conceptions of how a learning or teaching curriculum, workplace culture and agency of individuals shape medical student learning and supervisory practices in the clinical workplace. Adv Health Sci Educ. 2015;20(2):531–57.CrossRef
57.
Billett S. Learning Through Practice. In: Billett S, editor. Learning through practice: models, traditions, orientation and approaches. Dordrecht: Springer Netherlands; 2010. p. 1–20.CrossRef
58.
Frenk J, Chen L, Bhutta ZA, Cohen J, Crisp N, Evans T, Fineberg H, Garcia P, Ke Y, Kelley P, et al. Health professionals for a new century: transforming education to strengthen health systems in an interdependent world. Lancet. 2010;376(9756):1923–58.CrossRefPubMed
59.
Lantos JD: The Lazarus case: life-and-death issues in neonatal intensive care: JHU Press; 2007.
60.
Dewey J: Experience and education. In: The Educational Forum: 1986: Taylor & Francis; 1986: 241–252.
61.
Mays N, Pope C. Assessing quality in qualitative research. Br Med J. 2000;320(7226):50.CrossRef
Metadata
Title
A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making
Authors
Clare Delany
Vicki Xafis
Lynn Gillam
Jo-anne Hughson
Jenny Hynson
Dominic Wilkinson
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2017
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-016-0177-5

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