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

Abstract

BackgroundThe 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.MethodsThe 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.ResultsFollowing 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.ConclusionsThere 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.Electronic supplementary materialThe online version of this article (doi:10.1186/1472-684X-14-1) contains supplementary material, which is available to authorized users.

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

“…Interviewees also reiterated and elaborated on other key findings from Xafis et al [26], such as a general lack of availability of resources of this type, the usefulness of providing parents with a language that could facilitate further communication, and a perception that ascertaining the right time to distribute or make parents aware of the resource is delicate and, if not done well, could present some difficulties. Parents have also expressed the view that such information should only be provided when parents are ready to receive it [50].…”

“…The use of written materials enables families to access language and concepts [24, 25] and can provide one potential way of building decision-making literacy in families [26]. Provision of written informational materials encouragesing parents to speak with each other and participate in otherwise clinically-dominated decision-making environments.…”

“…There is limited evidence, however, about what kind of written materials would best support parents who face decisions about life-sustaining treatment for their critically ill newborn infant or child [26]. There is a small number of existing resources for parents involved in end-of-life decision-making [31–33], but the availability of resources to help parents understand the complex and difficult ethical questions concerning their child or assist them to participate in conversations in written or web-based form are limited [34].…”

A systematic review of prognostic factors at the end of life for people with a hematological malignancy

“…However, it is unclear if these tools are applicable to the specific illness trajectory experienced by people with a hematological malignancy [68]. A number of studies exist highlighting key prognostic factors in the final months of life for people with a solid tumor diagnosis.…”

Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu) – an instrument to assess parental experiences and needs during their child's end‐of‐life care

“…The instrument shows promise for the retrospective application in bereaved mothers. However, the applicability in bereaved fathers remains an open question (Widger et al 2015).None of the instruments available at the beginning of this study included all of the quality domains identified by the IPPC and were applicable to the heterogeneous field of paediatric EOL care, including children/adolescents of different age groups, with different underlying illnesses and in different clinical settings and finally, none considered maternal and paternal perspectives. Gaining uniform information across these different situations will help identifying differences between subgroups and thus, add important and essential knowledge needed for healthcare professionals to provide individualized family-centred care during this difficult period of time.…”