Patients and families realising their future with chronic obstructive pulmonary disease-A qualitative study.

AIMS AND OBJECTIVES: To gain insight into the lived experience of learning about having chronic obstructive pulmonary disease for patients and their families. BACKGROUND: Chronic obstructive pulmonary disease often progresses for years. Adjustment to declining health is gradual, and the disease may have developed considerably when health care is sought and people are diagnosed. Reaching patients at early stages is necessary to delay progression of the disease. DESIGN: Interpretive phenomenology. METHODS: Data were collected in four family focus group interviews (N = 37) and a subsample of eight family-dyad interviews. Patients were eight men, and 14 women aged 51-68 years. Majority of the patients (n = 19) were at GOLD grades II and III, with three at grade IV. The family members were eight men, and seven women aged 29-73 years. Data were collected between June-November 2012. RESULTS: Five, not mutually exclusive themes, revealed a long and arduous process of learning about and becoming diagnosed with chronic obstructive pulmonary disease and how unaware participants were of the imminent threat that the disease imposes on life. The themes were as follows: burden of shame and self-blame, enclosed in addiction, living in parallel worlds, realising the existence of the disease and a cry for empathy. CONCLUSIONS: Learning about and realising the existence of chronic obstructive pulmonary disease and what it entails at present time and in the future was bleak for the participants. The patients tended to put aside the thought of being a person with chronic obstructive pulmonary disease and defer actions that might halter progression of the disease, particularly to quit smoking. RELEVANCE TO CLINICAL PRACTICE: Individuals and families need support early in the disease process to realise and accept the existence of chronic obstructive pulmonary disease and particularly to deal with the challenges that nicotine addiction, shame and self-blame present. Increased public awareness about this enormous, but hidden, health problem is necessary.

Partnership-based nursing practice for people with chronic obstructive pulmonary disease and their families: influences on health-related quality of life and hospital admissions.

AIMS AND OBJECTIVES: To evaluate the outcome of a coherent nursing practice in the form of partnership that addresses the complexity of living with chronic obstructive pulmonary disease. BACKGROUND: Chronic obstructive pulmonary disease is a wide-ranging and progressive chronic disease that not only requires relentless attentiveness of the persons having the disease but also the families involved. Particular consideration is called for in health care for those with an advanced and complicated stage of the disease. The nursing practice, grounded in the theoretical framework of 'partnership as practice', is participatory comprehensive, long-term and dynamic to individual patient-family needs. DESIGN: Retrospective and prospective pretest-post-test intervention study. Methods. Eleven men and 39 women participated (n = 50). Mean age was 66 years. The majority (n = 36) had severe chronic obstructive pulmonary disease (GOLD stage III and IV). Actual study period was six months (T2). Hospital admission data were collected six months prior to (T1) and six months after that period (T3), a total of 18 months. RESULTS: Hospital admission rate and days spent in hospital because of chronic obstructive pulmonary disease were significantly reduced. Disease-specific health-related quality of life measured by St. George's Respiratory Questionnaire improved significantly. For those with clinical anxiety and depression, both decreased significantly. Of those who were underweight, body mass index improved significantly. Abstinence from smoking changed non-significantly. Capability in the use of inhaler medications improved. CONCLUSIONS: These results are in contrast to previous studies on outpatient nursing care for people with chronic obstructive pulmonary disease. The participatory nature of partnership with dialogue as central and which was uniquely implemented in this study might be of particular relevance for individuals and families living with chronic obstructive pulmonary disease. RELEVANCE TO CLINICAL PRACTICE: Complex and comprehensive health needs of people with chronic obstructive pulmonary disease and their families may be effectively addressed in partnership centred on dialogue together with efficient intra-and interdisciplinary collaboration.