Partnership-based nursing practice framework for patients with advanced chronic obstructive pulmonary disease and their families-A discursive paper.

AIM: The increase in the number of people with chronic obstructive pulmonary disease (COPD) and the disease burden, has prompted concerted efforts to improve healthcare, particularly outpatient services. In line with these attempts the Partnership-Based Nursing Practice Theoretical Framework for People with COPD was developed to guide outpatient nursing care. The principal approach of the framework is a 'Dialogue' with the patients, which has four components: 'Establishing family involvement', 'Assisting living with symptoms' and 'Facilitating access to healthcare', with the primary goal being 'Enhancement of the health experience'. With new knowledge, research on the framework, and extensive experience in using it, a need arose to modify the framework to maximize its clinical utility. DESIGN: Discursive paper. METHODS: A narrative review and critical reflection was conducted to revise the nursing practice framework via selected literature search from 2012 to 2022, research on the framework, and the authors' reflections on the clinical experience of using the framework. RESULTS: The nursing practice framework highlights capacities and possibilities that lie in the nurse-patient relationship. The overarching dialogue in the revised framework includes both patients and families. The action-related component 'Assisting living with the disease' was added to the framework to underscore the significance of attempting to understand what may lie ahead for patients and families. The other action-related components are as follows: 'Assisting living with symptoms' and 'Facilitating access to healthcare'. The primary goal remains unchanged: enhancing the 'Health experience'. CONCLUSION: Using the revised nursing practice framework in outpatient care may help to enhance the lives of people with COPD and their families, particularly at advanced stages of the disease. It may have transferability to other groups of people living with progressive diseases dealing with complicated health problems, and to reduce the usage of costly healthcare resources such as hospital care. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The partnership-based nursing practice framework assumes an extension of conventional specialized respiratory service and embraces a comprehensive account for that which may influence the patient's health problems. This guidance, which holistically attends to patient-family needs of living with complicated and progressive health predicaments, is fundamental. It contributes to strengthening the disciplinary focus of nursing, interdisciplinary collaboration, person-family-centred quality nursing care and inspires research initiatives. Critical reflections and updates on nursing practice frameworks, such as this revision, are essential to advance nursing and healthcare. PATIENT OR PUBLIC CONTRIBUTION: There is no direct patient- or public contribution.

Reluctance of patients with chronic obstructive pulmonary disease in its early stages and their families to participate in a partnership-based self-management trial: A search for explanation.

Recruitment, the process of accessing, screening, selecting and retaining participants for research remains a challenge. In a randomized controlled trial, partnership-based self-management intervention for patients who have chronic obstructive pulmonary disease (COPD) in its initial stages, and their families, a theoretical framework developed for patients with an advanced COPD and their families was modified and implemented in a primary care context. In contrast to recruitment to the original study where 4% decline participation, in this study 25% of the potential patients declined participation. Although participants were encouraged to bring a family member, only 25% of them did so. The main reason for not being accompanied by a family member was that patients did not want anybody accompany them. Those who had quit smoking were more often accompanied by a family member compared to those who smoked. Reviewing the literature, the most compelling explanations for non-participation are shame and self-blame due to smoking, and that potential participants may not have envisioned any benefits from participating since they might not have realized that they had COPD. An alternative recruitment process needs to embrace the situation that potential participants find themselves in and which takes account of the issues at stake.

Effectiveness of a partnership-based self-management programme for patients with mild and moderate chronic obstructive pulmonary disease: a pragmatic randomized controlled trial.

AIMS: To evaluate the effectiveness of a 6-month, partnership-based self-management programme for patients with mild and moderate chronic obstructive pulmonary disease. BACKGROUND: Self-management is a widely valued concept used to address contemporary issues of chronic health problems. Findings of self-management programmes for people with chronic obstructive pulmonary disease are inconclusive. DESIGN: Pragmatic randomized control trial. METHODS: Patients, 45-65 years old, with mild and moderate chronic obstructive pulmonary disease were invited with a family member. Experimental group (n = 48) participated in a 6-month, partnership-based self-management programme consisting of: (a) three to four conversations between nurse and patient-family member; (b) 6 months of smoking cessation; and (c) interdisciplinary team-patient-family member group meeting. Control group (n = 52) received usual care. Data were collected at months zero, six and 12. The trial lasted from June 2009-March 2013. RESULTS: Patients with mild and moderate chronic obstructive pulmonary disease who participated in the partnership-based self-management programme perceived less intrusiveness of the disease and its treatment than patients in the control group. Patients in the experimental group did not have better health-related quality of life, less anxiety or depression, increased physical activity, fewer exacerbations or better smoking status than patients in the control group. Patients in both groups found participation in the research useful and important. CONCLUSION: The partnership-based self-management programme had benefits concerning perception of the intrusiveness of chronic obstructive pulmonary disease and its treatment on lifestyles, activities and interests for young patients with the disease in its early stages. High satisfaction in control group, low family attendance and the relatively short treatment period may explain the less than expected benefits of the programme.

Health in partnership: family nursing practice for people with breathing difficulties.

Reorienting the focus of health systems to incorporate a multifaceted approach that allows for comprehensive and humane health care is pending. Using the participatory paradigm approach, we describe a study of a partnership-based family nursing practice for people with breathing difficulties. We generated data through nine conversations with eight patients accompanied by a close family member (n = 6) and one wife, 15 conversations between the authors, and through a reflective journal. Narrative data analysis was conducted. Results that reveal the meaning and experience of the family nursing practice are presented in four interlacing descriptive statements: (a) surfacing and contextualizing health problems, (b) responsiveness of services, (c) security-stability-self-direction, and (d) unified family efforts- transformation. We conclude that the conceptual framework of partnership is a useful approach to nursing practice within a nurse clinic for people with advanced breathing difficulties and their families.

Technological dependency--the experience of using home ventilators and long-term oxygen therapy: patients' and families' perspective.

Technological dependency is defined as a short or long-term reliance on machines and techniques to evaluate, satisfy or resolve health problems. In nursing technological dependency has been explored in the context of caring. Hitherto it has been maintained that technology and caring are contradictory, but a more prominent view is that technology and caring can and must be reconciled to provide high-quality care. This study describes patients' and families' experience of long-term home treatment with noninvasive ventilation during sleep with or without additional oxygen therapy. Considering the potential burden of undergoing this treatment the research question is: What is patients' and families' experience of being dependent on technical breathing assistance during sleep? The methodological approach draws from interpretive phenomenology and narrative analysis. Participants were six patients aged 45-70, five spouses and one daughter. Data, generated through two 1-hour semi-structured interviews with each pair of participants, were analysed into themes. Results are presented by the following narratives: (i) mixed blessing: life-saving treatment - meaningless exertion; (ii) compassion and understanding central amid use of complex machines; (iii) listening to the body; (iv) wanting to be seen as healthy; (v) dominance of technological thinking; and (vi) sustained work in maintaining the treatment. It is concluded that being dependent on technical breathing assistance during sleep, with or without oxygen, was a major life event for participants. The treatment was experienced as constraining and intrusive, particularly at the beginning, but concurrently it dramatically relieved difficulties for most participants. Regardless of its usefulness it provoked questions on purpose, indicating that the way to implement the treatment is crucial. Professionals need to pay close attention to how they introduce noninvasive ventilation technique, putting caring concern and respect for unique needs of patients and their families at the forefront.