The experiences and monitoring of people living with chronic obstructive pulmonary disease and utilising long-term oxygen therapy

Abstract

The aims for this study were to gain a greater understanding of how the lives of long-term oxygen therapy [LTOT] recipients with chronic obstructive pulmonary disease [COPD] are affected, either negatively or positively, by the use of LTOT and the monitoring associated with its use. This study explored the experiences of 14 people recruited from the community setting, within two geographical regions within New Zealand. The participants were long-term (> 6 months) recipients of LTOT, which was prescribed and administered to minimise the deleterious physical, social and psychological effects of hypoxic COPD.

There is a paucity of research exploring the experiences and monitoring of people with COPD who utilise LTOT. This paucity of research is particularly evident within the New Zealand context. To date, research has predominantly focussed on patient’s experiences of, and adherence to, LTOT. Little is known about the monitoring activities people who use LTOT undertake and patients’ experiences of arterial blood gas [ABG] analysis and/or spirometry. A plethora of studies have endeavoured to identify the negative and positive impacts of LTOT, including limitations to daily living and the health benefits, however the majority of studies have been undertaken utilising a quantitative methodology, which did not seek to explore the patient’s reality. Qualitative methodology has the advantage of providing an in-depth insight into the patient’s real-world experiences of COPD and LTOT. A general inductive methodology employing thematic analysis was utilised to analyse the data collected from semi-structured face-to-face interviews consisting of 26 open-ended questions. The interview questions sought to elicit information regarding, i) the participant’s experiences of aspects of monitoring, including ABG analysis and spirometry, ii) the participant’s experience of the positive, negative and necessary aspects of LTOT, iii) the participant’s journey with COPD, including knowledge of their disease, important support systems and coping mechanisms, and iv) the participants’ experience of the psychological impacts of COPD. Inductive thematic analysis provided the framework by which to analyse the raw data. The key findings were that participants described the benefits of LTOT to far outweigh the negative aspects. Four major themes emerged from the data: i) ‘Smoking’, ii) ‘Oxygen therapy: The good, the bad and the necessary’, iii) ‘The COPD journey’, and iv) ‘Feel the panic and breathe anyway’ (Psychological aspects of COPD). The impact of LTOT on the lives of a participant and their family was profound and multifactorial. The use of LTOT was associated with an overall improvement in the participant’s perceptions of wellbeing however, LTOT posed restrictions on freedom, daily living, leisure activities and on the lives of family members. For some participants, the use of LTOT was associated with embarrassment and stigmatisation and viewed as the inevitable and very visible end result of a history of smoking. The overwhelming physical benefit of LTOT was lessening the participant’s degree of dyspnoea and increasing their ability to cope with and participate in everyday life, albeit within the restrictions of their disease and oxygen therapy. The strategies the participants employed in order to cope with the demands and challenges of the COPD journey demonstrated both congruence and dissimilarity and each participant had developed strategies to lessen the impact of LTOT on their daily lives. The participant’s ability to cope with their disease was reliant on several factors including, knowledge and ongoing education, informal and formalised support systems, avoidance techniques and the availability of emergency responders in times of perceived crisis. The psychological impacts of COPD and LTOT cover a wide gamut of emotions including depression, worthlessness and self-blame. These emotions impact negatively on the lives of the participants and their families. The participants were unanimous in their descriptions of the impact of debilitating breathlessness, associated anxiety and panic. The participants’ descriptions of the panic they experience on a daily basis provides a valuable insight into the psychological impact of breathlessness, and the profound interruption it imposes on the participant’s ability to function and participate in activities of daily living. Depression, self-blame and worthlessness were experienced by the participants, and in many cases LTOT provided an outwardly visible representation of their disease, further exacerbating the degree of psychological impact. The interviews provided valuable insight into the benefits, barriers and challenges associated with the use of LTOT and its monitoring. In order to enhance the acceptability and maximise the therapeutic efficacy of LTOT, clinicians need to practice alongside and include patients in the development and monitoring of insightful interventions and innovative management strategies.