Two faces of the same coin: a qualitative study of patients' and carers' coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD)

Diana H Ferreira, Slavica Kochovska, Aaron Honson, Jane L Phillips, David C Currow, Diana H Ferreira, Slavica Kochovska, Aaron Honson, Jane L Phillips, David C Currow

Abstract

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).

Keywords: Carers; Chronic breathlessness; Chronic obstructive pulmonary disease; Patients; Qualitative research.

Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Diagram of patients and carers included

References

    1. Johnson MJ, Yorke J, Hansen-Flaschen J, Lansing R, Ekström M, Similowski T, et al. Towards an expert consensus to delineate a clinical syndrome of chronic breathlessness. Eur Respir J. 2017;49:1602277. doi: 10.1183/13993003.02277-2016.
    1. Celli BR, MacNee W, Agusti A, Anzueto A, Berg B, Buist AS, et al. Standards for the diagnosis and treatment of patients with COPD: a summary of the ATS/ERS position paper. Eur Respir J. 2004;23:932–946. doi: 10.1183/09031936.04.00014304.
    1. Nishimura K, Izumi T, Tsukino M, Oga T. Dyspnea is a better predictor of 5-year survival than airway obstruction in patients with COPD. Chest. 2002;121:1434–1440. doi: 10.1378/chest.121.5.1434.
    1. Pesola GR, Ahsan H. Dyspnea as an independent predictor of mortality. Clin Respir J. 2016;10:142–152. doi: 10.1111/crj.12191.
    1. Ek K, Sahlberg-Blom E, Andershed B, Ternestedt BM. Struggling to retain living space: patients’ stories about living with advanced chronic obstructive pulmonary disease. J Adv Nurs. 2011;67:1480–1490. doi: 10.1111/j.1365-2648.2010.05604.x.
    1. Hutchinson A, Barclay-Klingle N, Galvin K, Johnson MJ. Living with breathlessness: a systematic literature review and qualitative synthesis. Eur Respir J. 2018;51(2):1701477. doi: 10.1183/13993003.01477-2017.
    1. Burki NK, Lee LY. Mechanisms of dyspnea. Chest. 2010;138:1196–1201. doi: 10.1378/chest.10-0534.
    1. Kamal AH, Maguire JM, Wheeler JL, Currow DC, Abernethy AP. Dyspnea review for the palliative care professional: assessment, burdens, and etiologies. J Palliat Med. 2011;14(10):1167–1172. doi: 10.1089/jpm.2011.0109.
    1. Jácome C, Figueiredo D, Gabriel R, Cruz J, Marques A. Predicting anxiety and depression among family carers of people with chronic obstructive pulmonary disease. Int Psychogeriatr. 2014;26(7):1191–1199. doi: 10.1017/S1041610214000337.
    1. Bernabeu-Mora R, García-Guillamón G, Montilla-Herrador J, Escolar-Reina P, Garcia-Vidal JA, Medina-Mirapeix F. Rates and predictors of depression status among caregivers of patients with COPD hospitalized for acute exacerbations: a prospective study. Int J Chronic Obstr. 2016;11(1):3199–3205. doi: 10.2147/COPD.S118109.
    1. Bergs D. ‘The hidden client’–women caring for husbands with COPD: their experience of quality of life. J Clin Nurs. 2002;11:613–621. doi: 10.1046/j.1365-2702.2002.00651.x.
    1. Currow D, Watts GJ, Johnson M, McDonald CF, Miners JO, Somogyi AA, et al. A pragmatic, phase III, multisite, double-blind, placebo-controlled, parallel-arm, dose increment randomised trial of regular, low-dose extended-release morphine for chronic breathlessness: breathlessness, exertion and morphine sulfate (BEAMS) study protocol. BMJ Open. 2017;7:e018100. doi: 10.1136/bmjopen-2017-018100.
    1. Matsuoka H, Allingham S, Fazekas B, Brown L, Vandersman Z, Clark K, et al. Comparability of the Australian National Cancer Symptom Trials (CST) Group’s study populations to National Referrals to non-CST specialist palliative care services participating in the palliative care outcomes collaboration. J Pain Symptom Manag. 2019;57(1):e9–14. doi: 10.1016/j.jpainsymman.2018.09.017.
    1. Bestall JC, Paul EA, Garrod R, Garnham R, Jones PW, Wedzicha JA. Usefulness of the Medical Research Council (MRC) dyspnoea scale as a measure of disability in patients with chronic obstructive pulmonary disease. Thorax. 1999;54(7):581–586. doi: 10.1136/thx.54.7.581.
    1. Stenton C. The MRC breathlessness scale. Occup Med (Lond) 2008;58:226–227. doi: 10.1093/occmed/kqm162.
    1. Farquhar M. Palliative Care in Respiratory Disease (ERS Monograph) Sheffield: European Respiratory Society; 2016. Supporting informal carers; pp. 51–69.
    1. Swetenham K, Tieman J, Butow P, Currow D. Communication differences when patients and caregivers are seen separately or together. Int J Palliat Nurs. 2015;21(11):557–563. doi: 10.12968/ijpn.2015.21.11.557.
    1. Laidsaar-Powell RC, Butow PN, Bu S, Charles C, Gafni A, Lam WW, et al. Physician–patient–companion communication and decision-making: a systematic review of triadic medical consultations. Patient Educ Couns. 2013;91(1):3–13. doi: 10.1016/j.pec.2012.11.007.
    1. Rocker G, Young J, Donahue M, Farquhar M, Simpson C. Perspectives of patients, family caregivers and physicians about the use of opioids for refractory dyspnea in advanced chronic obstructive pulmonary disease. CMAJ. 2012;184(8):E497–E504. doi: 10.1503/cmaj.111758.
    1. Boeije H. A purposeful approach to the constant comparative method in the analysis of qualitative interviews. Qual Quant. 2002;36:391–409. doi: 10.1023/A:1020909529486.
    1. Hagens V, Dobrow MJ, Chafe R. Interviewee transcript review: assessing the impact on qualitative research. BMC Med Res Methodol. 2009;9:47. doi: 10.1186/1471-2288-9-47.
    1. Glaser BG, Strauss AL, Strutzel E. The discovery of grounded theory: strategies for qualitative research. Nurs Res. 1968;17(4):364. doi: 10.1097/00006199-196807000-00014.
    1. Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357. doi: 10.1093/intqhc/mzm042.
    1. Spathis A, Booth S, Moffat C, Hurst R, Ryan R, Chin C, et al. The breathing, thinking, functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease. NPJ Prim Care Respir Med. 2017;27(1):27. doi: 10.1038/s41533-017-0024-z.
    1. Farquhar M, Penfold C, Benson J, Lovick R, Mahadeva R, Howson S, et al. Six key topics informal carers of patients with breathlessness in advanced disease want to learn about and why: MRC phase I study to inform an educational intervention. PLoS One. 2017;12(5):e0177081. 10.1371/journal.pone.0177081.
    1. Gysels M, Higginson IJ. The experience of breathlessness: the social course of chronic obstructive pulmonary disease. J Pain Symptom Manag. 2010;39(3):555–563. doi: 10.1016/j.jpainsymman.2009.08.009.
    1. Lansing RW, Gracely RH, Banzett RB. The multiple dimensions of dyspnea: review and hypotheses. Respir Physiol Neurobiol. 2009;167(1):53–60. doi: 10.1016/j.resp.2008.07.012.
    1. Gysels M, Bausewein C, Higginson IJ. Experiences of breathlessness: a systematic review of the qualitative literature. Palliat Support Care. 2007;5(3):281–302. doi: 10.1017/S1478951507000454.
    1. Bailey PH. Death stories: acute exacerbations of chronic obstructive pulmonary disease. Qual Health Res. 2001;11(3):322–338. doi: 10.1177/104973201129119136.
    1. Mi E, Mi E, Ewing G, Mahadeva R, Gardener AC, Butcher HH, et al. Associations between the psychological health of patients and carers in advanced COPD. Int J Chron Obstruct Pulmon Dis. 2017;12:2813–2821. doi: 10.2147/COPD.S139188.
    1. Nicholls DA. The experience of chronic breathlessness. Physiother Theory Pract. 2003;19:123–136. doi: 10.1080/09593980307965.
    1. Lindqvist G, Hallberg LR. ‘Feelings of guilt due to self-inflicted disease’ a grounded theory of suffering from chronic obstructive pulmonary disease (COPD) J Health Psychol. 2010;15(3):456–466. doi: 10.1177/1359105309353646.
    1. Gabriel R, Figueiredo D, Jácome C, Cruz J, Marques A. Day-to-day living with severe chronic obstructive pulmonary disease: towards a family-based approach to the illness impacts. Psychol Health. 2014;29(8):967–983. doi: 10.1080/08870446.2014.902458.
    1. Caress A, Luker K, Chalmers K. Promoting the health of people with chronic obstructive pulmonary disease: patients’ and carers’ views. J Clin Nurs. 2010;19(3–4):564–573. doi: 10.1111/j.1365-2702.2009.02982.x.
    1. Heyland DK, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ. 2006;174(5):627–633. doi: 10.1503/cmaj.050626.
    1. Ek K, Ternestedt BM, Andershed B, Sahlberg-Blom E. Shifting life rhythms: couples’ stories about living together when one spouse has advanced chronic obstructive pulmonary disease. J Palliat Care. 2011;27(3):189–197. doi: 10.1177/082585971102700302.
    1. Mi E, Mi E, Ewing G, White P, Mahadeva R, Gardener AC, et al. Do patients and carers agree on symptom burden in advanced COPD? Int J Chron Obstruct Pulmon Dis. 2018;13:969–977. doi: 10.2147/COPD.S147892.
    1. Bove DG, Zakrisson AB, Midtgaard J, Lomborg K, Overgaard D. Undefined and unpredictable responsibility: a focus group study of the experiences of informal caregiver spouses of patients with severe COPD. J Clin Nurs. 2016;25(3–4):483–493. doi: 10.1111/jocn.13076.
    1. Gardiner C, Gott M, Payne S, Small N, Barnes S, Halpin D, et al. Exploring the care needs of patients with advanced COPD: an overview of the literature. Respir Med. 2010;104(2):159–165. doi: 10.1016/j.rmed.2009.09.007.
    1. Strang S, Strang P. Spiritual thoughts, coping and ‘sense of coherence’ in brain tumor patients and their spouses. Palliat Med. 2001;15(2):127–134. doi: 10.1191/026921601670322085.
    1. Lin HR, Bauer-Wu SM. Psycho-spiritual well-being in patients with advanced cancer: an integrative review of the literature. J Adv Nurs. 2003;44(1):69–80. doi: 10.1046/j.1365-2648.2003.02768.x.
    1. Farquhar M. Carers and breathlessness. Curr Opin Support Palliat Care. 2017;11(3):165–173. doi: 10.1097/SPC.0000000000000281.
    1. Patsopoulos NA. A pragmatic view on pragmatic trials. Dialogues Clin Neurosci. 2011;13(2):217–224.
    1. Stajduhar KI, Nickel DD, Martin WL, Funk L. Situated/being situated: client and co-worker roles of family caregivers in hospice palliative care. Soc Sci Med. 2008;67(11):1789–1797. doi: 10.1016/j.socscimed.2008.09.012.

Source: PubMed

Patrocinadores e Colaboradores

Condições médicas

Intervenções de drogas

3
Se inscrever