scholarly journals Needs Assessment for the Development of an Electronic Cross-Facility Health Record (ECHR) for Pediatric Palliative Care: A Design Thinking Approach

Children ◽  
2021 ◽  
Vol 8 (7) ◽  
pp. 602
Author(s):  
Theresa Sophie Busse ◽  
Chantal Jux ◽  
Sven Kernebeck ◽  
Larissa Alice Dreier ◽  
Dorothee Meyer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Design Thinking ◽  
Quality Care ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
Time Data ◽  
Basic Model ◽  
Use Of Technology ◽  
Current Medication ◽  
Core Components

Background: Pediatric palliative care (PPC) is characterized by years of multisectoral and multi-professional care. Sharing information between PPC professionals is, therefore, essential for quality care. The evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. Methods: Guided by design thinking, first, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Based on the needs stated in the interviews, prototypes of the ECHR were developed and discussed in the FGs. The indicated needs were supplemented and specified in an iterative process. The prototypes were further adapted according to these results. The unified theory of acceptance and use of technology was the basic model in the evaluation of needs. Results: Across seven main categories, past and current medication, emergency view, and messaging functions were identified as the participants’ desired core components of an ECHR. Utilizing design thinking facilitated the explicit articulation of user needs. Conclusions: Developing an ECHR with the content identified would allow for real-time data during emergencies, tracking what other PPC professionals have done, and making the applied treatments visible to others. This would offer a broader picture of the complex conditions common to PPC.

Needs assessment for the development of an electronic cross-facility health record (ECHR) for pediatric palliative care: A design thinking approach (Preprint)

2021 ◽  
Author(s):  
Theresa Sophie Busse ◽  
Chantal Jux ◽  
Sven Kernebeck ◽  
Larissa Alice Dreier ◽  
Dorothee Meyer ◽  
...  
Keyword(s):  
Palliative Care ◽  
Design Thinking ◽  
Quality Care ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
User Needs ◽  
User Centered Design ◽  
Time Data ◽  
Comprehensive Picture ◽  
User Centered

BACKGROUND Pediatric palliative care (PPC) is characterized by years of multisectoral and multiprofessional care. The exchange of information through effective communication between various PPC professionals is essential for high-quality care. Evidence shows that electronic cross-facility health records (ECHRs) provide useful support in this context. Given the specific needs of and content exchanged within PPC, the use of specific ECHRs in this area is necessary. To our knowledge, no ECHRs have been developed through a user-centered approach for this specific setting in Germany. OBJECTIVE The aim was to record PPC professionals’ needs (nurses, physicians, and secretaries) regarding ECHRs, as they may represent future users in inpatient and outpatient PPC as well as general practitioners and pediatrists from medical offices. METHODS Guided by design thinking, this study consisted of six steps: (1) empathize, (2) define, (3) ideate, (4) prototype, (5) test, and (6) iteration. First, qualitative interviews were conducted to assess the needs of PPC professionals. Second, the elicited needs were specified in focus groups (FGs). Prototypes of the ECHR (mock-ups) were then developed according to the needs mentioned in the interviews and were discussed in the FGs. Finally, the indicated needs were supplemented and specified in an iterative process. The mock-ups were further adapted according to these results. RESULTS Across seven main categories, medical history, actual medication, the emergency view with the most critical data, and messaging functions were identified as some participants’ desired core components of an ECHR. Utilizing design thinking facilitated an explicit articulation of user needs. The mock-ups clearly aligned the research and development team’s ideas with the simulated work in the ECHR for the users. CONCLUSIONS Developing an ECHR with the content that participants identified, which is currently being shared, that integrates overarching new views and functionality would make it possible to obtain real-time data during emergencies, to track what other PPC professionals have done, and to make the applied treatments visible to others. Moreover, it would give all providers with a more comprehensive picture of the complex conditions that are common in PPC. Concerning relevant content and functionality, user-centered design, and sensitivity to the various sectors regarding the needs of PPC professionals employed in those sectors emerged as strengths of the design thinking approach. An ECHR that directly addresses user needs will foster pediatric palliative care across sectors.

Putting pediatric palliative care in prime time.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 68-68
Author(s):  
Rebecca A Kirch ◽  
Christina K Ullrich
Keyword(s):  
Palliative Care ◽  
Childhood Cancer ◽  
Consumer Research ◽  
Quality Care ◽  
Essential Element ◽  
Lessons Learned ◽  
Pediatric Palliative Care ◽  
Cancer Society ◽  
Early Integration ◽  
Care Experience

68 Background: For patients and families at any age and stage, treating the symptoms and stress of cancer is as important as treating the disease. Palliative care has hit its stride as one of the nation’s fastest growing health care trends, with a robust evidence base, new quality standards, increasing awareness and understanding, and a related public policy agenda. This momentum positions pediatric palliative care as an essential aspect of advancing childhood cancer survivorship with high quality of life – particularly important for children given the documented symptoms, late effects and disabling conditions they experience into adulthood and across their lifetime. This oral presentation will describe pediatric palliative care’s prominent role in addressing the challenges of childhood cancer and survivorship across the continuum, providing practical clinical case study context and highlights of consumer research findings and an advocacy agenda helping address palliative care’s “identity problem” that affects access to quality care. Methods: This presentation provides practical information for integrating palliative care to benefit children and families, including lessons learned through implementation of early pediatric palliative care alongside disease-directed treatment under the Concurrent Care for Children Requirement and other initiatives. It will also identify available resources for communicating about palliative care based on consumer research from the American Cancer Society and Center to Advance Palliative Care. Results: This presentation will inform and inspire person-centered and family-focused activities to advance early integration of palliative care in research and clinical practice. It will also highlight opportunities for active involvement in the QOL national movement to improve quality cancer care. Conclusions: Audience will understand benefits of pediatric palliative care and strategies supporting its delivery through the pediatric concurrent care experience in oncology. They will also gain improved proficiency in communicating about palliative care, and will be well-positioned to engage in the QOL legislative campaign to bring palliative care everywhere as an essential element of quality care.

Visualizing social support in home pediatric palliative care using network maps

2019 ◽  
Vol 34 (3) ◽  
pp. 378-386 ◽  
Author(s):  
Daniela Lindemann ◽  
Gian Domenico Borasio ◽  
Monika Führer ◽  
Maria Wasner
Keyword(s):  
Social Support ◽  
Palliative Care ◽  
Family Caregivers ◽  
Health Care Professionals ◽  
Qualitative Interviews ◽  
Pediatric Palliative Care ◽  
Oral Feedback ◽  
Digital Network ◽  
The Social ◽  
Palliative Care Teams

Background: Home care of children with life-limiting diseases is extremely challenging for parents/family caregivers and their social environment. In order to gain new insights into the perspective of family caregivers, we employed digital Network Maps for the first time in the field of pediatric palliative care. Aim: To examine whether the use of Network Maps helps to identify and visualize significant members of the social support system and the quality of the relationship, as well as the main areas of life that are experienced as being supportive by each individual. Design: The design was an integrated mixed methods study. Creation of Network Maps was assessed in conjunction with qualitative interviews. In addition, participants gave an oral feedback on the Network Maps themselves. Setting/participants: Parents of patients supported by a Specialized Home Pediatric Palliative Care team were eligible for inclusion. Forty-five parents were enrolled in the study. Results: All mothers and fathers were able to generate their individual Network Map without problems. The composition of the support systems differed greatly, even between members of the same family. Parents named on average 11 supporting actors, mainly family members and health care professionals. Some relationships were perceived as helpful and stressful at the same time. Conclusion: Network Maps appear to be an appropriate tool for the collection, reconstruction, and assessment of the current support situation of parents of dying children. Further studies should examine the usefulness of Network Maps for the understanding of the caregivers’ support needs and for the development of psychosocial interventional strategies by pediatric palliative care teams.

scholarly journals Participatory Design of a Medication Module in an Electronic Medical Record for Paediatric Palliative Care: A Think-Aloud Approach with Nurses and Physicians

Children ◽  
2022 ◽  
Vol 9 (1) ◽  
pp. 82
Author(s):  
Sven Kernebeck ◽  
Chantal Jux ◽  
Theresa Sophie Busse ◽  
Dorothee Meyer ◽  
Larissa Alice Dreier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Participatory Design ◽  
Development Process ◽  
Qualitative Content Analysis ◽  
Qualitative Interviews ◽  
Think Aloud ◽  
Paediatric Palliative Care ◽  
Use Of Technology ◽  
Actual Use ◽  
High Level

Background: Electronic medical records (EMRs) play a key role in improving documentation and quality of care in paediatric palliative care (PPC). Inadequate EMR design can cause incorrect prescription and administration of medications. Due to the fact of complex diseases and the resulting high level of medical complexity, patients in PPC are vulnerable to medication errors. Consequently, involving users in the development process is important. Therefore, the aim of this study was to evaluate the acceptance of a medication module from the perspective of potential users in PPC and to involve them in the development process. Methods: A qualitative observational study was conducted with 10 nurses and four physicians using a concurrent think-aloud protocol and semi-structured qualitative interviews. A qualitative content analysis was applied based on a unified theory of acceptance and use of technology. Results: Requirements from the user’s perspective could be identified as possible influences on acceptance and actual use. Requirements were grouped into the categories “performance expectancies” and “effort expectancies”. Conclusions: The results serve as a basis for further development. Attention should be given to the reduction of display fragmentation, as it decreases cognitive load. Further approaches to evaluation should be taken.

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