A Qualitative Study of Turning Points or Aha! Moments in Older Adults' Discussions About Organ Donation.

INTRODUCTION: Older adults (50-70 years old) have lower organ donor registration rates than younger adults. Older adults have different informational needs and donor registration behavior than younger age groups. OBJECTIVE: The objective of this qualitative study was to understand insights of older adults about organ donation to effectively address the barriers to becoming an organ donor. This study identified turning points as "Aha!" moments that occurred during a dialogue intervention where older adults discussed benefits, barriers, and process to organ donation. SETTING AND PARTICIPANTS: Dialogues were held with small groups of older adults in 11 communities in a Midwestern organ procurement organization service area. Participants were positive to organ donation, but not registered as an organ donor. Methods/Approach: Qualitative analysis of verbatim comments from the dialogue and a follow-up survey were used to examine turning points or "Aha!" moments of participants' decision-making about organ donation and organ donor registration. FINDINGS: Twenty-one separate in-depth dialogues were conducted with 198 participants, with mean age of 60.57 years. There were 2757 separate comments coded with 465 of the comments (17%) identified as providing Aha! moments during the dialogue. Three themes include benefits of organ donation (30%), barriers about organ donation (39%), and organ donation process (31%). DISCUSSION: The research identified moments in the dialogue where possible learning about organ donation may have occurred. After participation in the dialogue process, there was an increase in intent to register to be an organ donor, organ donation discussion with family and friends, and organ donor registration.

Important knowledge for parents of children with heart disease: parent, nurse, and physician views.

OBJECTIVES: Parental understanding of their children's heart disease is inadequate, which may contribute to poor health outcomes. The purpose of this study was to determine what parental knowledge is important in the care of children with heart disease from the perspective of parents, nurses, and physicians. METHODS: Focus groups were formed with parents of children with single ventricle congenital heart disease (CHD), biventricular CHD, and heart transplantation, and with nurses and physicians who provide care for these children. A nominal group technique was used to identify and prioritise important parental knowledge items and themes. The voting data for each theme were reported by participant type--parent, nurse, and physician--and patient diagnosis--single ventricle CHD, biventricular CHD, and heart transplantation. RESULTS: The following three themes were identified as important by all groups: recognition of and response to clinical deterioration, medications, and prognosis and plan. Additional themes that were unique to specific groups included the following: medical team members and interactions (parents), tests and labs (parents), neurodevelopmental outcomes and interventions (physicians), lifelong disease requiring lifelong follow-up (physicians and nurses), and diagnosis, physiology, and interventions (single ventricle and biventricular CHD). CONCLUSIONS: Parents, nurses, and physicians have both common and unique views regarding what parents should know to effectively care for their children with single ventricle CHD, biventricular CHD, or heart transplantation. Specific targeted parental education that incorporates these findings should be provided to each group. Further development of questionnaires regarding parental knowledge with appropriate content validity is warranted.

A Qualitative Study Describing Pediatric Palliative Care in Non-Metropolitan Areas of Illinois.

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.

A multi-center, qualitative assessment of pediatrician and maternal perspectives on rotavirus vaccines and the detection of Porcine circovirus.

BACKGROUND: In 2010, researchers using novel laboratory techniques found that US-licensed rotavirus vaccines contain DNA or DNA fragments from Porcine circovirus (PCV), a virus common among pigs but not believed to cause illness in humans. We sought to understand pediatricians' and mothers' perspectives on this finding. METHODS: We conducted three iterations of focus groups for pediatricians and non-vaccine hesitant mothers in Seattle, WA, Cincinnati, OH, and Rochester, NY. Focus groups explored perceptions of rotavirus disease, rotavirus vaccination, and attitudes about the detection of PCV material in rotavirus vaccines. RESULTS: Pediatricians understood firsthand the success of rotavirus vaccines in preventing severe acute gastroenteritis among infants and young children. They measured this benefit against the theoretical risk of DNA material from PCV in rotavirus vaccines, determining overall that the PCV finding was of no clinical significance. Particularly influential was the realization that the large, randomized clinical trials that found both vaccines to be highly effective and safe were conducted with DNA material from PCV already in the vaccines.Most mothers supported the ideal of full disclosure regarding vaccination risks and benefits. However, with a scientific topic of this complexity, simplified information regarding PCV material in rotavirus vaccines seemed frightening and suspicious, and detailed information was frequently overwhelming. Mothers often remarked that if they did not understand a medical or technical topic regarding their child's health, they relied on their pediatrician's guidance.Many mothers and pediatricians were also concerned that persons who abstain from pork consumption for religious or personal reasons may have unsubstantiated fears of the PCV finding. CONCLUSIONS: Pediatricians considered the detection of DNA material from PCV in rotavirus vaccines a "non-issue" and reported little hesitation in continuing to recommend the vaccines. Mothers desired transparency, but ultimately trusted their pediatrician's recommendation. Both vaccines are currently approved for their intended use, and no risk of human PCV illness has been reported. Communicating this topic to pediatricians and mothers requires sensitivity to a broad range of technical understanding and personal concerns.

Designing an educational strategy for increasing organ donor registration among older adults.

CONTEXT: Older adults (50-70 years of age) have lower organ donor registration rates than younger adults. Despite recent increases in organ donation registration of adults 18 to 49 years of age, the increase in older adult registrations is less. OBJECTIVE: To use research results from surveys and focus groups to inform an educational strategy and design for the older adult population. DESIGN: Pooled survey data from 3 statewide random-digit dial telephone interview surveys of 6230 adults, including 2631 respondents age 50 or older, were used to identify barriers to organ donor registration and information needs of older adults compared with younger adults. Two focus groups with older adults were used to further identify barriers and to pilot test messages for an educational strategy for older adults. SETTING AND PARTICIPANTS: Surveys were conducted with adults in Ohio. Focus groups were conducted in 2 major cities in Ohio with older adults, 50 to 70 years of age. RESULTS: Survey results indicate that older adults and younger adults differ on several factors regarding their beliefs, attitudes, and behavior concerning organ donation. Although older adults express positive attitudes toward donation, they often "opt out" from registering to be organ donors for age and health reasons. Focus groups show similar barriers to organ donor registration and indicate that brochures are a preferred way to educate older adults about organ donation. CONCLUSION: Using research results to identify barriers and information needs of specific demographic groups is very important in designing a targeted educational strategy. An educational campaign addressing the concerns and information needs of this age group could increase organ donor registration.

Family-Centered Pediatric Emergency Care: A Framework for Measuring What Parents Want and Value.

OBJECTIVE: To identify and describe dimensions of family-centered care important to parents in pediatric emergency care and compare them to those currently defined in the literature. METHODS: A qualitative study was conducted involving 8 focus groups with parents who accompanied their child to an emergency department visit at a large tertiary-care pediatric health system. Participants were identified using purposive sampling to achieve representation across demographic characteristics including child's race, insurance status, severity, and participant's relationship to child. Focus groups were segmented by patient age and presence of a chronic condition. They were moderated by a facilitator experienced in health-related topics. A 6-member multidisciplinary team completed a content analysis. RESULTS: Sixty-eight parents participated. They were female (77%); aged 20 to 29 years (19%), 30 to 39 years (47%), more than 40 years (31%); black (44%), white (52%); and married (50%). Their child's characteristics were: public insurance (52%); black (46%), white (46%); and admitted as an inpatient (46%). The analysis resulted in 8 dimensions: 1) emotional support; 2) coordination; 3) elicit and respect preferences, and involve the patient and family in care decisions; 4) timely and attentive care; 5) information, communication, and education; 6) pain management; 7) safe and child-focused environment; and 8) continuity and transition. Compared to those published in the literature, the most notable differences were combining involving family and respect for preferences into a single dimension, and separating physical comfort into 2 dimensions: pain management and safe/child-focused environment. CONCLUSIONS: The resulting dimensions provide a framework for measuring and improving the delivery of family-centered pediatric emergency care.