Dataset Information

Parent Perceptions of Team-Delivered Care for Children With Advanced Cancer: A Report From the PediQUEST Study.

ABSTRACT:

Context

Childhood cancer care is delivered by interprofessional health care teams; however, little is known about how parents perceive overall team-delivered care (TDC).

Objectives

We sought to describe parent perceptions of TDC and associated factors, including care rendered by individual clinicians, teamwork, information consistency, and patient and parent characteristics.

Methods

Cross-sectional surveys were distributed to parents of 104 children with recurrent/refractory cancer enrolled in a multisite symptom management trial. The primary outcome, TDC, was parent report of care quality delivered by the child's care team during the preceding three months. Likert-scaled items (excellent/very good/good/fair/poor) queried care quality delivered by individual clinicians, perceived teamwork, and other factors. Factors associated with parent perceptions of excellent TDC were identified using Fisher's exact test.

Results

Eighty-six parents (83%) responded. During the preceding three months, 63% (n = 54) of parents reported excellent TDC. However, only 47% (n = 40) described their care team's teamwork as excellent. Approximately one-quarter (24%) described care rendered by their child's oncologist as less-than-excellent. Among parents who reported psychosocial clinician involvement (71%; n = 60), only 43% described this care as excellent. Individually, excellent care from each clinician type (oncologist, psychosocial clinician, and primary nurse) was associated with excellent TDC (all P ≤ 0.001; no correction for multiple comparisons).

Conclusion

Among parents of children with advanced cancer, more than one-third report less-than-excellent TDC. In addition, less than half report excellent teamwork, and ratings of care rendered by individual clinicians are highly variable. Findings suggest that interventions are needed to enhance interprofessional teamwork in the care of children with advanced cancer.

SUBMITTER: Feraco AM

PROVIDER: S-EPMC7508972 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:Background and objectivesPrognostic uncertainty is one barrier that impedes providers in engaging patients with CKD in shared decision making and advance care planning. The surprise question has been shown to identify patients at increased risk of dying.Design, setting, participants, & measurementsIn our prospective observational study, 488 patients ≥60 years of age with CKD stage 4 or 5 were enrolled. Binary surprise question (i.e., "Would you be surprised if this patient died in the next 12 months?") responses were recorded, and dialysis planning preferences, presence of advance care planning documentation, and care preceding death were abstracted.ResultsThe median patient age was 71 (65-77) years old. Providers responded no and yes to the surprise question for 171 (35%) and 317 (65%) patients, respectively. Median follow-up was 1.9 (1.5-2.1) years, during which 18% of patients died (33% of surprise question no, 10% of surprise question yes; P<0.001). In patients with a known RRT preference (58%), 13% of surprise question no participants had a preference for conservative management (versus 2% of yes counterparts; P<0.001). A medical order (i.e., physician order for life-sustaining treatment) was documented in 13% of surprise question no patients versus 5% of yes patients (P=0.004). Among surprise question no decedents, 41% died at home or hospice, 38% used hospice services, and 54% were hospitalized in the month before death. In surprise question yes decedents, 39% died at home or hospice (P=0.90 versus no), 26% used hospice services (P=0.50 versus no), and 67% were hospitalized in the month before death (P=0.40 versus surprise question no).ConclusionsNephrologists' prognostic perceptions were associated with modest changes in care, highlighting a critical gap in conservative management discussions, advance care planning, and end of life care among older adults with CKD stages 4 and 5 and high-risk clinical characteristics.PodcastThis article contains a podcast at https://www.asn-online.org/media/podcast/CJASN/2017_09_18_CJASNPodcast_17_11.mp3.

Project description:IntroductionFood allergy affects up to 10% of Australian children, and living with food allergic children can be challenging for parents. This study explored parental perceptions and knowledge as they navigate a new reality of keeping their child safe.MethodsParents of children with food allergies completed an online food allergy survey in 2015. Questions explored health knowledge, skills, and attitudes (KSAs) as well as quality of life (QoL) through the inclusion of the Food Allergy Quality of Life - Parental Burden instrument (FAQL-PB). Notification of the survey included advertisements to more than 700 randomly selected Australia-wide preschools, 44 allergy specialists, and Allergy & Anaphylaxis Australia. Responses were tabulated and analysed.ResultsOf the 400 participants who logged on, 357 commenced the survey and 318 finished. Questionnaire analysis showed that 44.1% of parents (n = 135) hesitated to use an adrenaline auto-injector and may be influenced by a classification system where symptom severity is not universally understood. While 79% would sign up to a national Anaphylaxis Registry, intention to participate in clinical trials using vaccines was disclosed by only 56%. Allergen labelling and community acceptance continue to be the most challenging aspects of managing a food allergy, and 50% of parents reported that food allergy played a role in choosing a preschool or primary school. Overall, quality of life for participants was influenced more by gender (male) and age of the child than where they lived - capital city or regional location; however, regional participants were more frustrated over lack of appreciation relating to the seriousness of food allergy (p = 0.010).ConclusionResults highlight the need for educational strategies for both the food allergy community and public, particularly in regional areas, since there is a perceived lack of appreciation as to the seriousness of food allergy. Educational resources and relevant networks are required to support parents and caregivers in the management of children with food allergy.