Development of an international research agenda for adult congenital heart disease nursing

Abstract

Background: Since the population of adults with congenital heart disease (CHD) is growing, the role of nurse specialists is expanding. In order to advance ACHD nursing, the establishment of an international nursing research agenda is recommended. We aimed to investigate research priorities as perceived by nurse specialists and researchers in ACHD. Methods: We applied a sequential quan–qual design. In the quantitative phase, a two-round Delphi study was conducted, in which 37 nurse specialists and nurse researchers in ACHD care participated. Respondents assessed the level of priority of 21 research topics using a 9-point rating scale (1 = no priority at all; 9 = very high priority). In the qualitative phase, semi-structured interviews were performed with six selected Delphi panelists, to scrutinize pending research questions. Results: This study revealed that priority should be given to studies investigating knowledge and education of patients, outcomes of Advanced Practice Nursing, quality of life, transfer and transition, and illness experiences and psychosocial issues in adults with CHD. A low priority was given to post-operative pain, sexual functioning, transplantation in ACHD, and health care costs and utilization. Agreement about the level of priority was obtained for 14 out of 21 research topics. Conclusion: Based on this study, we could develop an international research agenda for ACHD. Researchers ought to focus on these areas of highest priority, in order to expand and strengthen the body of knowledge in ACHD nursing.

An Evaluation of Disease Knowledge in Dyads of Parents and Their Adolescent Children With Congenital Heart Disease

“…Furthermore, evaluation of patient knowledge received the highest priority on the research agenda for CGHD nursing. 34 The present study expands previous investigations on disease knowledge of patients with CGHD by assessing adolescent-parent dyads and by exploring correlates of disease knowledge both in adolescent patients and parents. Adolescents have good knowledge (980% correct answers) about the frequency of follow-up, past treatment, diet, and the need for daily dental care.…”

The Future of Adult Congenital Heart Disease Research: Precision Health Services Delivery for the Next Decade

“…Growing out of the International Society for Adults with Congenital Cardiac Disease, a nurse practitionereled initiative convened a 2-round Delphi process identifying patient-centred research priorities: knowledge and education, quality of life, transfer and transition of care, illness experience, and psychosocial issues and health behaviour. 105 These findings resonate loudly as we move away from episodes of disease to periods of wellness, in a framework that incorporates not just the life span but also the health span with the worldwide expansion of CHD populations. In 2012, the CDC convened experts to identify gaps in CHD research relevant to a public health mandate.…”

Initial validation of a healthcare needs scale for young people with congenital heart disease

“…With a significant increase in life expectancy, issues concerning congenital heart disease (CHD) nursing range from the management of acute symptoms such as postoperative pain, to those related to chronic care, such as knowledge and education, quality of life (QOL) and transfer and transition (Goossens, Fleck, Canobbio, Harrison, & Moons, ). As children with CHD age, they may develop more advanced psychosocial needs and needs concerning employment and pregnancy.…”

“…Among healthcare providers, paediatric and adult CHD nurse specialists play a key role in assessing, coordinating and supporting the transition and transfer of youth with CHD to adult care (Goossens et al., ; Jalkut & Allen, ). As the International Society for Adult Congenital Heart Disease has suggested, promoting a holistic team‐based approach to the care of patients with CHD should be comprehensive, patient‐centred and interdisciplinary (Sillman et al., ).…”