Emotional Support and Well-Being of Adults with Congenital Heart Disease (ACHD): Contributions of a Specialist Nursing Service

Living with a congenital heart condition can require a daunting and uncertain patient journey during which the support of a specialist nursing service is vital. A descriptive, cross-sectional evaluation completed over two years, utilised a postal questionnaire to investigate patient’s satisfaction with aspects of service. Qualitative responses to open questions on satisfaction with emotional support (n = 103) and contributions to well-being (n = 90) were analysed using a framework approach which identified eight themes. Professional knowledge and expertise, service accessibility, caring attributes, enabling patients to cope with anxiety, depression and meeting changing needs contributed positively to both patient well-being and emotional support. Family support was influential on emotional support alone, whilst mediating medical liaison exerted an impact on well-being by enhancing feelings of security. In conclusion, the specialist nursing service contributed positively to well-being and emotional support of patients and thereby to selective aspects of continuity of care.