Dataset Information

Maintenance of non-pharmacological strategies 6 months after patients with chronic obstructive pulmonary disease (COPD) attend a breathlessness service: a qualitative study.

ABSTRACT:

Objectives

This study aimed to explore the degree to which non-pharmacological strategies for chronic breathlessness are sustained 6 months after completing a breathlessness service in patients with chronic obstructive pulmonary disease (COPD), and patient perceptions regarding the need for ongoing support.

Design

A qualitative approach was taken using semistructured telephone interviews. Thematic analysis used an integrative approach.

Setting

The Westmead Breathlessness Service (WBS) trains patients with COPD to self-manage chronic breathlessness over an 8-week programme with multidisciplinary input and home visits.

Participants

Patients with moderate to very severe COPD who had completed the WBS programme 6 months earlier.

Results

Thirty-two participants were interviewed. One or more breathlessness self-management strategies were sustained by most participants, including breathing techniques (n=22; 69%), the hand-held fan (n=17; 53%), planning/pacing and exercise (n=14 for each; 44%) and strategic use of a four-wheeled walker (n=8; 25%). However, almost a third of participants appeared to be struggling psychologically, including some who had refused psychological intervention. A 'chaos narrative' appeared to be prevalent, and many participants had poor recall of the programme.

Conclusions

Self-management strategies taught by breathlessness services to patients with moderate to very severe COPD have potential to be sustained 6 months later. However, psychological coping may be more challenging to maintain. Research is needed on ways to improve resilience to set-backs and uptake of psychological interventions, as well as to understand and address the implications of poor recall for self-management.

Trial registration number

ACTRN12617000499381.

SUBMITTER: Luckett T

PROVIDER: S-EPMC8126310 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BACKGROUND:Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although individual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit. METHODS:A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (?32?mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach. RESULTS:From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77?years. Carers were mostly women, who were their wives (n?=?6), median age 70. Five themes emerged from the data: (1) shrinking world; (2) mutual adaptation; (3) co-management; (4) emotional coping; and (5) meaning in the face of death. CONCLUSION:Chronic breathlessness is a systemic condition that permeates all aspects of the patient's and carer's lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and individual needs. TRIAL REGISTRATION:The main trial is registered (registration no. NCT02720822; posted March 28, 2016).