Evaluating The Reliability And Validity Of A New Pediatric Palliative Care Needs Assessment Tool
Objectives
Describe categories of need faced by parents and
patients in pediatric palliative care.
Describe unmet needs faced by parents and patients
in pediatric palliative care.
322 Schedule with Abstracts Vol. 51 No. 2 February 2016
Describe potential uses for a needs assessment
tool in the delivery of pediatric palliative
care.
Original Research Background. Despite the challenges
faced by children with life-limiting conditions
and their families, there is no validated needs assessment
tool for use in pediatric palliative care. To
address this gap, we developed the Parent/Child
Needs Tool (PC Needs), which assesses physical, psychological,
social, and healthcare team needs.
Research Objectives. Test the reliability and validity
of PC needs, and identify unmet needs in pediatric
palliative care.
Methods. Four community-based organizations in
Chicago, IL and Rochester, NY distributed surveys
to parents of pediatric palliative care patients. The
surveys included three sections: parent demographics;
the PC Needs (22 items rating degree of
need from 1e10 and scored by adding responses);
and the World Health Organization Quality of Life
(WHOQOL-BREF) tool (26 items measuring four
domains: physical, psychological, social and environmental).
We assessed reliability using Cronbach’s
alpha and validity by calculating correlations between
the PC Needs score and WHOQOL-BREF
domains.
Results. Surveys were collected from 82 parents, ages
26 to 64 (Mean¼ 42). Parents were: 73% female and
89% white, 5% African American and 6% Other.
The mean PC Needs score was 81.3 (range¼
25e139, SD¼26.4). The lowest rated (most fulfilled)
needs were palliative care team respect for child and
parent and parent-child relationship. The highest
rated needs were impact of the child’s illness on the
family; managing physical problems; and financial
needs. Reliability (Cronbach’s alpha) was 0.83. Correlations
between the PC Needs score and the
WHOQOL-BREF domains were in the predicted direction
(i.e., greater need¼lower quality of life): Physical
r¼-0.44; Psychological r¼-0.55; Social r¼-0.59; Environmental
r¼-0.45 (all p<.001).
Conclusion. The PC Needs Tool is a reliable and
valid needs assessment measure for pediatric palliative
care. Unmet needs reported by parents included
impact on the family, physical problems, and finances.
Implications for Research, Policy, and
Practice. Future work will assess the use of the PC
Needs in clinical care
Michelson K; Downing K; Rudnik M; Cloen J; Donnelly J
Journal Of Pain And Symptom Management
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.140
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
hospice; Needs Assessment; Only Child; Palliative Care; pediatric palliative care; Psychometrics; Terminal Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. RESULTS: The 93 respondents were predominantly female (n=69, 74%); white (n=79, 85%); college graduates (n=71, 76%); and married or partnered (n=75, 81%). Internal reliability was acceptable (Cronbach's alpha=.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from -.36 to -.51). The most frequently cited need not addressed by our survey was sibling impact (n=17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n=63) rated completion of the survey as "easy" or "very easy." CONCLUSION: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.
Donnelly JP; Downing K; Cloen J; Fragen P; Gupton AW; Misasi J; Michelson K
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.484" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.12.484</a>
Providing pediatric palliative care in non-urban areas of illinois: Challenges identified and recommendations for process improvement
administrative personnel
Objectives *Identify 3 barriers to the provision of care in rural areas for children with life-limiting illnesses and their families. *Describe 3 approaches to improving the provisions of care in rural areas for children with lifelimiting illnesses and their families. *Describe 2 potential mechanisms for supporting the existing pediatric palliative care resources in rural communities. Original Research Background. The absence of formal data about pediatric palliative care in non-urban areas has hindered development of appropriate supportive resources to improve access to services. Research Objectives. To identify pediatric palliative, hospice and bereavement resources, care gaps, and barriers to service provision in four key non-urban regions of Illinois. Methods. We conducted semi-structured focus groups or interviews with parents and healthcare providers from four Illinois non-urban population hubs. Regional champions (e.g., hospice administrator, Social Worker developing a hospital-based pediatric supportive care program) led recruitment. We analyzed the data using a grounded theory approach focusing on issues relevant to non-urban communities. Results. We conducted 12 focus groups/interviews with 8 bereaved parents, 4 non-bereaved parents, and 18 healthcare professionals (6 nurses, 2 doctors, 4 Social Workers, 6 "other") representing hospital, palliative/ hospice care, homecare, or family support organizations. While some participants praised the current services, expressed concerns predominated. Themes identified included: attitudes about pediatric palliative/hospice care and local resources; inadequate care coordination; limited skill/comfort of local healthcare professionals; limited resources for healthcare team members and families; inadequate information about existing resources; need to travel to obtain care. Areas for process improvement focused on enhancing existing resources through better access, utilization and quality, and improving care coordination. Approaches proposed included educational efforts for families and professionals, introducing local and distant resource experts for families and professionals (e.g. navigators, mentors), utilizing technology (e.g. telehealth), providing more symptom management and diagnostic testing locally, and improving funding. Conclusion. Improving pediatric palliative/hospice care delivery in non-urban areas of Illinois will require efforts that match people with existing services and maximize resource utilization and quality. Implications for Research, Policy, or Practice. Improving non-urban pediatric palliative/ hospice care will require engagement of local and distant experts as well as funding to expand services.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Downing K; Michelson K; Murday P; Arsala EG
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.026</a>
A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois
hospice; pediatrics; palliative care; end-of-life care; non-metropolitan communities; rural communities
BACKGROUND: There is little information about providing pediatric palliative care (PPC) in non-metropolitan areas. OBJECTIVE: Describe the strengths of and challenges to delivering PPC in non-metropolitan communities and identify opportunities to improve care delivery. DESIGN: A qualitative study involving focus groups (FGs) with PPC stakeholders. SETTING/PARTICIPANTS: From 4 non-metropolitan areas in Illinois, we recruited 3 stakeholder groups: healthcare providers (HPs); bereaved parents; and parents caring for a seriously ill child (SIC). MEASUREMENTS: At each site, we held an FG with people of the same stakeholder group and then an FG involving all stakeholders. Discussion topics included: availability and strengths of local PPC services, barriers to local PPC, opportunities for improving local PPC access and quality, and clinician educational needs. We analyzed data using phenomenology and directed content analysis. RESULTS: Thirty people, 12 parents and 18 HPs, participated in FGs. Identified themes related to: PPC perceptions; availability and use of local resources; and challenges associated with travel, care coordination, and finances. Participants described benefits of and limits to local PPC including pediatric-specific issues such as attending to siblings, creating child peer-support activities, providing school guidance, and financing for PPC. Recommendations included suggestions to enhance care coordination, use existing resources, improve community and provider education, develop community networks, and minimize financial challenges. CONCLUSION: Unique PPC challenges exist in non-metropolitan areas. PPC in non-metropolitan areas would benefit from enhancing local resource utilization and quality. Future work should address the challenges to providing PPC in non-metropolitan areas with a focus on pediatric-specific issues.
Murday P; Downing K; Gaab E; Misasi J; Michelson KN
American Journal of Hospice & Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091211005700" target="_blank" rel="noreferrer noopener">10.1177/10499091211005700</a>