Support for living well with long-term conditions: How people manage.

Abstract

To explore how people self-manage their long-term conditions and the support enabling them to do so. People with long-term conditions are required to engage in daily self-management with the support of health practitioners, family and friends. A qualitative interview study. Thirty-two New Zealand European and Pacific people with long-term conditions were interviewed about how they manage their condition/s at home with support from family, neighbours, agencies and general practice doctors and nurses. Interviews were recorded, transcribed, checked and analysed for thematic content. The COREQ checklist was used. Three themes emerging from the data were as follows: 'acceptance' of conditions, limitations, support and advice; 'making it work' regarding life with long-term conditions; and the need for health practitioners to 'work alongside me'. People with long-term conditions struggle with acceptance of a diagnosis and symptoms, and acceptance of help which conflicts with their need to maintain independence and personal control. They self-manage every day, learning to plan, choose what and what not to do and negotiate with others to get tasks done and maintain quality of life. They manage better with support from understanding health practitioners, especially advanced nurses, with whom they have established a positive, sustained relationship. Active support for people to self-manage has been shown to assist people to achieve their goals and improve overall health and well-being. Nurses are well positioned to provide self-management support for people with long-term conditions but require allocated time and system changes to enable this. Practitioners need to acknowledge that it is difficult for people to accept diagnoses and symptoms and provide individualised support for this process. The desire to remain independent may limit acceptance of help, making it harder for people to maintain life quality. A change in length and content of consultations is required in order for practitioners to really get to know people and provide the self-management support they need to meet their goals.