Patients’ independence of a nurse for the administration of subcutaneous anti-TNF therapy: A phenomenographic study

Abstract

Rheumatology nursing supports patients to manage their lives and live as independently as possible without pain, stiffness and functional restrictions. When conventional drugs fail to delay the development of the rheumatic disease, the patient may require biological treatment such as self-administered subcutaneous anti-tumour necrosis factor (TNF) therapy. It is therefore important that the patient perspective focuses on the life-changing situation caused by the administration of regular subcutaneous injections. The aim of this study was to describe variations in how patients with rheumatic diseases experience their independence of a nurse for administration of subcutaneous anti-TNF therapy. The study had a descriptive, qualitative design with a phenomenographic approach and was carried out by means of 20 interviews. Four ways of understanding the patients' experience of their subcutaneous anti-TNF therapy and independence of a nurse emerged: the struggling patient; the learning patient; the participating patient; the independent patient. Achieving independence of a nurse for subcutaneous anti-TNF injections can be understood by the patients in different ways. In their strive for independence, patients progress by learning about and participating in drug treatment, after which they experience that the injections make them independent.

Adult Patients’ Experiences of Nursing Care Dependence

“…The helpers were perceived as liberating, with a crucial role in making it possible to realize the life they wanted (Martinsen & Dreyer, ). Nurses’ accessibility and flexibility allowed for patients’ autonomy and participation in their treatment, thus perceived as being given freedom (Larsson, Bergman, Fridlund, & Arvidsson, , ). Secure dependence implied care continuity, and information provided by competent caregivers who knew the patients and treated them as persons (Larsson et al., , ).…”

“…Older adults tried to adapt themselves to the situation and felt self‐realized when they were enjoying life and helping other people (Carlsson et al., ). Some patients learned to administer their medication themselves, increasing their knowledge and competence (Larsson et al., ). Patients with severe respiratory disease experienced personal body care as a hard daily task and strived to maintain self‐care (Lomborg et al., ).…”

Randomized controlled trial of a nurse‐led rheumatology clinic for monitoring biological therapy

“…When treated with subcutaneous injections, a nurse teaches the patients how to administer the injection, but some patients report missing regular contact with a nurse (Larsson et al . ). The nurse's role has developed into that of an expert with in‐depth nursing knowledge and competence of how to provide evidence‐based care and support patients to become co‐actors in the care (Arvidsson et al .…”

“…Patients perceive the regular contact with a nurse in conjunction with the infusions as secure, invigorating and leading to involvement (Larsson et al 2009). When treated with subcutaneous injections, a nurse teaches the patients how to administer the injection, but some patients report missing regular contact with a nurse (Larsson et al 2010). The nurse's role has developed into that of an expert with in-depth nursing knowledge and competence of how to provide evidence-based care and support patients to become co-actors in the care (Arvidsson et al 2003, Palmer & El Miedany 2010, Oliver 2011.…”

Patients’ conceptions of their own influence on good treatment response to biological therapy in chronic inflammatory arthritis

“…Patients who receive intravenous infusions tend to see the regular contact with a rheumatology nurse as secure, invigorating, and leading to involvement 15. On the other hand, patients performing self-administration of subcutaneous injections describe a striving for independence, and some patients report missing regular contact with a nurse 16. Patients’ values, preferences, and life situations in the treatment must be taken in account in order to achieve the best care,17 and collaboration with health care professionals is essential for enhancing quality of care if the patients have the capacity and desire to engage in such collaboration 18.…”