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BMC Palliative Care
Published in: BMC Palliative Care 1/2015

Open Access 01-12-2015 | Research article

Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care

Authors: Kimberley Widger, Ann E Tourangeau, Rose Steele, David L Streiner

Published in: BMC Palliative Care | Issue 1/2015

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Abstract

Background

The field of pediatric palliative care is hindered by the lack of a well-defined, reliable, and valid method for measuring the quality of end-of-life care.

Methods

The study purpose was to develop and test an instrument to measure mothers’ perspectives on the quality of care received before, at the time of, and following a child’s death. In Phase 1, key components of quality end-of-life care for children were synthesized through a comprehensive review of research literature. These key components were validated in Phase 2 and then extended through focus groups with bereaved parents. In Phase 3, items were developed to assess structures, processes, and outcomes of quality end-of-life care then tested for content and face validity with health professionals. Cognitive testing was conducted through interviews with bereaved parents. In Phase 4, bereaved mothers were recruited through 10 children’s hospitals/hospices in Canada to complete the instrument, and psychometric testing was conducted.

Results

Following review of 67 manuscripts and 3 focus groups with 10 parents, 141 items were initially developed. The overall content validity index for these items was 0.84 as rated by 7 health professionals. Based on feedback from health professionals and cognitive testing with 6 parents, a 144-item instrument was finalized for further testing. In Phase 4, 128 mothers completed the instrument, 31 of whom completed it twice. Test-retest reliability, internal consistency, and construct validity were demonstrated for six subscales: Connect With Families, Involve Parents, Share Information With Parents, Share Information Among Health Professionals, Support Parents, and Provide Care at Death. Additional items with content validity were grouped in four domains: Support the Child, Support Siblings, Provide Bereavement Follow-up, and Structures of Care. Forty-eight items were deleted through psychometric testing, leaving a 95-item instrument.

Conclusions

There is good initial evidence for the reliability and validity of this new quality of end-of-life care instrument as a mechanism for evaluative feedback to health professionals, health systems, and policy makers to improve children’s end-of-life care.
Appendix
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Literature
1.
2.
Together for Short Lives: Standards framework for children’s palliative care (2nd edition). Bristol, England: Together for Short Lives; 2013.
3.
Canadian Hospice Palliative Care Association [CHPCA]: Pediatric hospice palliative care: guiding principles and norms of practice. Ottawa, Canada: CHPCA; 2006.
4.
Field MJ, Behrman RE: When children die: improving palliative and end-of-life care for children and their families. Washington, DC: The National Academies Press; 2003.
5.
Larsson BW, Larsson G, Carlson SR: Advanced home care: patients’ opinions on quality compared with those of family members.J Clin Nurs 2004,13(2):226–233. 10.1046/j.1365-2702.2003.00866.xCrossRefPubMed
6.
Homer C, Marino B, Cleary P, Alpert HR, Smith B, Crowley Ganser CM, et al.: Quality of care at a children’s hospital: the parent’s perspective.Arch Pediatr Adolesc Med 1999,153(11):1123–1129. 10.1001/archpedi.153.11.1123CrossRefPubMed
7.
Rosenberg AR, Baker KS, Syrjala K, Wolfe J: Systematic review of psychosocial morbidities among bereaved parents of children with cancer.Pediatr Blood Cancer 2012,58(4):503–512. 10.1002/pbc.23386CrossRefPubMed
8.
Kreicbergs U, Valdimarsdottir U, Onelov E, Bjork O, Steineck G, Henter JI: Care-related distress: a national study of parents who lost their child to cancer.J Clin Oncol 2005,23(36):9162–9171. 10.1200/JCO.2005.08.557CrossRefPubMed
9.
Wolfe J, Grier H, Klar N, Levin S, Ellenbogen J, Salem-Schatz S, et al.: Symptoms and suffering at the end of life in children with cancer.N Engl J Med 2000,342(5):326–333. 10.1056/NEJM200002033420506CrossRefPubMed
10.
Meyer E, Ritholz M, Burns J, Truog R: Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations.Pediatrics 2006,117(3):649–657. 10.1542/peds.2005-0144CrossRefPubMed
11.
Brinchmann BS, Forde 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. 10.1191/0969733002ne523oaCrossRefPubMed
12.
Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR: Infant end-of-life care: the parents’ perspective.J Perinatol 2007, 27:510–516. 10.1038/sj.jp.7211755CrossRefPubMed
13.
Williams C, Cairnie J, Fines V, Patey C, Schwarzer K, Aylward J, Lohfeld L, Kirpalani H: Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit.Pediatrics 2009,123(1):e87-e95. 10.1542/peds.2007-2950CrossRefPubMed
14.
Streiner DL, Norman GR: Health measurement scales: a practical guide to the development and use. 4th edition. New York: Oxford University Press; 2008.CrossRef
15.
Donabedian A: The quality of health care: how can it be assessed?JAMA 1988, 260:1743–1748. 10.1001/jama.1988.03410120089033CrossRefPubMed
16.
Morgan D, Krueger R: The focus group kit. Thousand Oaks, CA: Sage Publications Inc; 1998.
17.
Krueger R: Analyzing and reporting focus group results. Thousand Oaks, CA: Sage Publications Inc; 2007.
18.
Grant JS, Davis LL: Selection and use of content experts for instrument development.Res Nurs Health 1997, 20:269–274. 10.1002/(SICI)1098-240X(199706)20:3<269::AID-NUR9>3.0.CO;2-GCrossRefPubMed
19.
Polit D, Beck C: The content validity index: are you sure you know what’s being reported? Critique and recommendations.Res Nurs Health 2006, 29:489–497. 10.1002/nur.20147CrossRefPubMed
20.
Knafl K, Deatrick J, Gallo A, Holcombe G, Bakitas M, Dixon J, et al.: The analysis and interpretation of cognitive interviews for instrument development.Res Nurs Health 2007,30(2):224–234. 10.1002/nur.20195CrossRefPubMed
21.
Streiner D: Being inconsistent about consistency: when coefficient alpha does and doesn’t matter.J Pers Assess 2003,80(3):217–222. 10.1207/S15327752JPA8003_01CrossRefPubMed
22.
Fayers PM, Hand DJ: Factor analysis, causal indicators and quality of life.Qual Life Res 1997, 6:139–150.PubMed
23.
Norman G, Streiner D: Biostatistics: the bare essentials. 3rd edition. Hamilton, ON, Canada: B.C. Decker Inc; 2008.
24.
Pett M, Lackey N, Sullivan J: Making sense of factor analysis: the use of factor analysis for instrument development in health care research. Thousand Oaks, CA: Sage Publications; 2003.CrossRef
25.
Streiner D: Starting at the beginning: an introduction to coefficient alpha and internal consistency.J Pers Assess 2003,80(1):99–103. 10.1207/S15327752JPA8001_18CrossRefPubMed
26.
Cicchetti DV: Sample size requirements for increasing the precision of reliability estimates: problems and proposed solutions.J Clin Exp Neuropsychol 1999,21(4):567–570. 10.1076/jcen.21.4.567.886CrossRef
27.
Heath J, Clarke N, McCarthy M, Donath S, Anderson V, Wolfe J: Quality of care at the end of life in children with cancer.J Paediatr Child Health 2009,45(11):656–659. 10.1111/j.1440-1754.2009.01590.xCrossRefPubMed
28.
Monterosso L, Kristjanson LJ, Phillips MB: The supportive and palliative care needs of Australian families of children who die from cancer.Palliat Med 2009,23(6):526–536. 10.1177/0269216309104060CrossRefPubMed
29.
Contro N, Larson J, Scofield S, Sourkes B, Cohen H: Family perspectives on the quality of pediatric palliative care.Arch Pediatr Adolesc Med 2002,156(1):14–19. 10.1001/archpedi.156.1.14CrossRefPubMed
30.
deCinque N, Monterosso L, Dadd G, Sidhu R, Macpherson R, Aoun S: Bereavement support for families following the death of a child from cancer: experience of bereaved parents.J Psychosoc Oncol 2006,24(2):65–83. 10.1300/J077v24n02_05CrossRefPubMed
31.
Konrad S: Mothers’ perspectives on qualities of care in their relationships with health care professionals: the influence of relational and communicative competencies.J Soc Work End Life Palliat Care 2008,4(1):38–56. 10.1080/15524250802072161CrossRefPubMed
32.
Roose RE, Blanford CR: Perinatal grief and support spans the generations: parents’ and grandparents’ evaluations of an intergenerational perinatal bereavement program.J Perinat Neonatal Nurs 2011,25(1):77–85. 10.1097/JPN.0b013e318208cb74CrossRefPubMed
33.
Hale C, Long T, Sanderson L, Carr K: Identifying the attributes of threshold and higher level nursing practice for children’s cancer and palliative care nurses: the views of children, their parents and other stakeholders.J Res Nurs 2008,13(1):9–20. 10.1177/1744987107086099CrossRef
34.
Midson R, Carter B: Addressing end of life care issues in a tertiary treatment centre: lessons learned from surveying parents’ experiences.J Child Health Care 2010,14(1):52–66. 10.1177/1367493509347060CrossRefPubMed
35.
D’Agostino N, Berlin-Romalis D, Jovcevska V, Barrera M: Bereaved parents’ perspectives on their needs.Palliat Support Care 2008,6(1):33–41.PubMed
36.
Macnab A, Northway T, Ryall K, Scott D, Straw G: Death and bereavement in a paediatric intensive care unit: parental perception of staff support.Paediatr Child Health 2003,8(6):357–362.PubMedPubMedCentral
37.
Monterosso L, Kristjanson L: Supportive and palliative care needs of families of children who die from cancer: an Australian study.Palliat Med 2008, 22:59–69. 10.1177/0269216307084608CrossRefPubMed
38.
Widger K, Picot C: Parents’ perceptions of the quality of pediatric and perinatal end-of-life care.Pediatr Nurs 2008,34(1):53–58.PubMed
39.
Stevenson M, Achille M, Lugasi T: Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families.J Palliat Med 2013,16(5):566–577. 10.1089/jpm.2011.0076CrossRefPubMed
40.
Curtis J, Patrick D, Engelberg R, Norris K, Asp C, Byock I: A measure of the quality of dying and death. initial validation using after-death interviews with family members.J Pain Symptom Manage 2002,24(1):17–31. 10.1016/S0885-3924(02)00419-0CrossRefPubMed
41.
Higgins P, Prigerson H: Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: the caregiver’s perception of patient care near death.PLoS One 2013,8(6):e66066. 10.1371/journal.pone.0066066CrossRefPubMedPubMedCentral
42.
Hinds P, Burghen E, Pritchard M: Conducting end-of-life studies in pediatric oncology.West J Nurs Res 2007,29(4):448–465. 10.1177/0193945906295533CrossRefPubMed
43.
Macdonald M, Chilibeck G, Affleck W, Cadell S: Gender imbalance in pediatric palliative care research samples.Palliat Med 2010,24(4):434–444.CrossRef
Metadata
Title
Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care
Authors
Kimberley Widger
Ann E Tourangeau
Rose Steele
David L Streiner
Publication date
01-12-2015
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2015
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/1472-684X-14-1

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