Dataset Information

Perspectives on team communication challenges in caring for children with medical complexity.

ABSTRACT:

Background

Children with medical complexity (CMC) require the expertise of many care providers spanning different disciplines, institutions, and settings of care. This leads to duplicate health records, breakdowns in communication, and limited opportunities to provide comprehensive, collaborative care. The objectives of this study were to explore communication challenges and solutions/recommendations from multiple perspectives including (i) parents, (ii) HCPs - hospital and community providers, and (iii) teachers of CMC with a goal of informing patient care.

Methods

This qualitative study utilized an interpretive description methodology. In-depth semi-structured interviews were conducted with parents and care team members of CMC. The interview guides targeted questions surrounding communication, coordination, access to information and roles in the health system. Interviews were conducted until thematic saturation was reached. Interviews were audio-recorded, transcribed verbatim, and coded and analyzed using thematic analysis.

Results

Thirty-two individual interviews were conducted involving parents (n = 16) and care team members (n = 16). Interviews revealed 2 main themes and several associated subthemes (in parentheses): (1) Communication challenges in the care of CMC (organizational policy and technology systems barriers, inadequate access to health information, and lack of partnership in care) (2) Communication solutions (shared systems that can be accessed in real-time, universal access to health information, and partnered contribution to care).

Conclusion

Parents, HCPs, and teachers face multiple barriers to communication and information accessibility in their efforts to care for CMC. Parents and care providers in this study suggested potential strategies to improve communication including facilitating communication in real-time, universal access to health information and meaningful partnerships.

SUBMITTER: Adams S

PROVIDER: S-EPMC8015748 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:ImportanceMany of the 50 000 children who die annually are eligible for provision of community-based hospice care, yet few hospice organizations offer formal pediatric services. Population-level data demonstrate that hospice nurses lack training, experience, and comfort in caring for children, but their specific educational needs and preferences are poorly understood.ObjectiveTo assess the pediatric-specific training and support needs of hospice nurses caring for children in the community.Design, setting, and participantsFor this qualitative study, 41 nurses were purposively seletected from a population-level cohort of 551 hospice nurses who completed a previous mixed-methods survey; these 41 nurses participated in semistructured interviews between February and April 2019. Hospice nurses were recruited from all accredited hospice organizations in Tennessee, Mississippi, and Arkansas that offer care to pediatric patients. Content analysis of interview transcripts was conducted.Main outcomes and measuresThe interview guide probed for topics related to prior pediatric hospice training experiences, desires and preferences for training, and perceived barriers to training.ResultsInterviews were conducted with 41 nurses representing different geographic regions and levels of comfort with pediatric hospice provision (as self-reported in the prior survey). Thirty-eight of the nurses were women (92.7%), with a median age of 40-49 years (range, 20-29 to ≥60 years) and median tenure of 5-9 years (range, <1 to ≥20 years) as a hospice nurse. Respondents included 1 American Indian or Alaska Native nurse (2.4%), 1 Black nurse (2.4%), and 39 White nurses (95.1%). Across interviews, most hospice nurses reported feeling uncomfortable caring for children with serious illness, and all nurses used language to express the immediacy behind the need for pediatric-specific training and support. Nurses explained why further training and support are needed and clear preferences for who should provide the education, educational modalities, and specific training topics. Nurses also articulated barriers to training and support opportunities and proposed innovative suggestions for overcoming these challenges. Notably, nurses emphasized the need for connection with experts, a sense of community, and solidarity to support frontline clinicians providing end-of-life care to children in the community.Conclusions and relevanceIn this qualitative study, community hospice nurses expressed an urgent need for improvements in pediatric-specific training opportunities and support, clear preferences for how education should be provided, and recommendations for circumventing barriers to training. These findings are a call to action for the palliative care community to collaborate in rapid implementation of educational programs and networks to systematically support hospice nurses caring for children in the community.