. 2022 Feb 17;36(4):567–580. doi: 10.1177/02692163221074539

Table 4.

Included study characteristics (n = 35).

Author Country	Journal	Participant characteristics	Study design	Recruitment setting and sample size	Methods	Analysis	Findings
1. Brien et al.⁶⁵ United Kingdom	Primary Care Respiratory Medicine	9 participants had a very high score on health related QOL impact of COPD. 14 participants classified as having either severe or very severe COPD	Purposive sample from primary and secondary care sites – maximum variation sample across disease severity.	34 Participants Primary and Secondary Care settings	Semi-structured interviews	Thematic analysis	Coping strategies commonly used are medication, pacing with activities of living and distraction. Challenges to coping are psychological and co-morbidities
2. Cooney et al.⁶⁶ United Kingdom	Journal of Clinical Nursing	Participants from within PRINCE RCT (2012) – 31.5% of intervention group (interviewed in this study) had severe COPD	Grounded Theory Purposive sample leading to theoretical sample from primary care settings.	26 participants 15 Male/11 Female Primary Care setting	Semi-structured Interviews	Constant comparative technique	The theory of-co existing is prevalent within COPD, particularly when managing breathlessness
3. Cruz et al.⁴¹ Portugal	Health and Social Care in the Community	Included studies had participants with severe/advanced/terminal COPD	Integrative Review	18 included studies	Liberati et al. (2009) principles of a systematic search were followed	Thematic Synthesis	Caring for someone with COPD is a stressful experience, carers perceived a loss of identity and personal freedom.
4. Disler et al.⁴² Australia	Journal of Pain and Symptom Management	Review focus upon individuals with advanced COPD	Qualitative Systematic Review	22 included studies.	PRISMA guidelines followed	Meta-synthesis of Qualitative data. Thematic synthesis – descriptive and analytical themes	Themes identified for use when caring for those with COPD included a better understanding of the condition and the unrelenting psychological impact.
5. Dunger et al.⁶⁷ Germany	Palliative and Supportive Care	Sample constructed of participants with Severe or Very severe COPD. Focus upon symptoms at end of life	Qualitative longitudinal study	10 participants with COPD 4 Male/6 Female. Primary and secondary care including palliative care units	Topic-guided in-depth interviews	Framework analysis	The impact of breathlessness causes disruption to how life is lived. This disruption causes feelings of despair and hopelessness.
6. Ek and Ternestedt³¹ Sweden	Journal of Advanced Nursing	All participants with COPD were in the palliative phase of disease progression	Giorgi’s phenomenological method	8 participant’s Secondary care	Semi-structured interviews	Phenomenological-hermeneutical analysis	Living with COPD in a couple resulted in living with uncertainty, a changed intimate relationship and developing new ways of living together
7. Ek et al.⁶⁸	Journal of Palliative Care	Considered to be in the final phase of COPD disease progression	Phenomenological-hermeneutical methodology	4 couples/8 participants Primary care	Repeated interviews over an eight-month period	Dialectical movement analysis	An awareness of the importance of personal values facilitates daily structure
8. Elofsson and Ohlén²⁸ Sweden	Palliative Medicine	Advanced COPD	Phenomenological-hermeneutical methodology	6 participant’s Secondary care	Narrative dialogues	Phenomenological analysis	Participants had feelings of resignation and sadness. They had little interest in hobbies and found living with COPD to be a hard life. Socialising was important to give the individual a sense of identity.
9. Gabriel et al.⁶⁹ Portugal	Psychology & Health	60% of participants had severe to very severe COPD	Exploratory Qualitative Study	20 patients – 16 male/14 female 20 family member’s – 12 spouses, 8 adult children Primary and Secondary care.	Open-ended question interviews	Descriptive statistical thematic analysis	Coping strategies used to handle the difficulties of living with COPD included socialisation, help from professional networks and seeking relevant information about COPD.
10. Gale and Sultan⁷⁰ United Kingdom	Health and Place 21	6 participants had severe/very severe COPD	Intervention study	5 male/2 female Community setting	Situated interviewing	Thematic analysis	The telehealth intervention gave participants peace of mind through contact with healthcare professionals and through increasing their own self-confidence.
11. Gardener et al.⁴³ United Kingdom	International Journal of COPD	Within included studies, participants all symptomatic of breathlessness – palliative need	Qualitative systematic review	31 included papers	PRISMA guidelines followed	Thematic analysis mapped to palliative and end of life care policy.	Identified support needs of patients included understanding COPD, managing feelings and worries, families and close relationships and social and recreational life
12. Gardener et al.⁵⁷ United Kingdom	Palliative Medicine	All patient participants had advanced COPD	Two-stage qualitative study	20 patients	Focus groups	Content analysis	Development, review, and refinement of patient support needs tool to enable delivery of person-centred care
13. Harb et al.⁵⁸ Australia	International Journal of COPD	Severe COPD	Qualitative study design	26 participants	Semi-structured interviews	Framework analysis – using establishes treatment burden framework	COPD has a substantial treatment burden. Patients are less likely to accept medical treatment if they perceive the benefit to be insufficient
14. Hayle et al.⁵⁹ United Kingdom	Palliative Medicine	Participants receiving palliative care	Phenomenological-hermeneutical methodology	8 participants Community or Hospice setting	Semi-structured interviews	Hermeneutic phenomenological approach	Specialist palliative care was perceived to have a positive impact upon psychological symptoms. Opportunities to improve palliative care for this group remain
15. Lee et al.⁶⁰ Canada	Physiotherapy Theory and Practice	Participants had severe or very severe COPD and pain	Phenomenological study	8 participants Community setting	Semi-structured interviews	Interpretive Phenomenological Analysis	COPD participants found difficulty in explaining pain resulting in feelings of frustration and loss of self-worth
16. Lindqvist and Hallberg²⁹ Sweden	Journal of Health Psychology	Participants had severe COPD	Grounded Theory	23 participant’s Secondary care	Semi-structured interviews	Grounded theory	Suffering from COPD resulted in feelings of guilt because of self-infliction. Linked to management strategies including making sense of existence, adjustment to bodily restrictions, surrendering to fate.
17. Lovell et al.⁴⁴ United Kingdom	Journal of Pain and Symptom Management	Participants within included studies had severe/very severe COPD	Qualitative systematic review	38 included studies	PRISMA guidelines followed	Thematic synthesis	The importance of social participation and activities is of importance to individuals with COPD
18. Marx et al.³⁰ Germany	BMJ Open	All participants had advanced COPD	Qualitative longitudinal study	Community setting 17 participants	Narrative semi-structured interviews	Grounded theory	Patients with COPD have difficulties accepting their life situation and feel at mercy of the disease.
19. May et al.⁴⁵ United Kingdom	BMJ Open	Papers included participants with severe and very severe COPD	Qualitative systematic review	53 included papers	Qualitative content analysis	Thematic synthesis	People living with COPD have significant pathophysiological deterioration. COPD disrupts social networks and gives associated feelings of dependence and vulnerability.
20. Olsman et al.⁶¹ Netherlands	Palliative and Supportive Care	Participants with COPD defined as severe	Qualitative longitudinal method	Community and Hospice setting 29 participants (10 with COPD)	Semi-structured interviews	Thematic analysis	COPD presents feelings of hope for the future, hopelessness, and despair.
21. Russell et al.⁴⁶ United Kingdom	Primary Care Respiratory Medicine	Papers included participants with severe and very severe COPD	Qualitative systematic review	33 studies included in review	Qualitative content analysis	Thematic analysis	Over time, COPD can consume existence and reduce motivation. Family support may prove vital yet trigger feelings of being a burden
22. Sheridan et al.⁶² New Zealand	Primary Care Respiratory Journal	Participants had from moderate to very severe COPD	Qualitative methodology	29 participants Community setting	Semi-structured interviews	Thematic analysis	All participants expressed feelings of helplessness in managing their condition.
23. Strang et al.⁶³ Sweden	Palliative and Supportive Care	Papers included participants with severe and very severe COPD	Qualitative methodology	31 participants Community and clinic settings	In-depth interviews	Thematic content analysis	Three themes identified contributing to anxiety associated with COPD – death anxiety, life anxiety and counterweights to anxiety.
24. Stridsman et al.⁶⁴ Sweden	Primary Health Care Research & Development	Participants had severe and very severe COPD	Qualitative methodology	10 participants	Semi-structured interviews	Latent qualitative content analysis	Participants adjusted to new limitations through acceptance and undertaking new activities
25. Chochinov et al.⁴⁷ Canada	PLoS ONE	Participants with very severe COPD	Prospective multi-site approach	100 participants with very severe COPD Outpatient departments, care homes, inpatient care settings	Questionnaires including: Structured Interview of Symptoms and Concerns, Herth Hope Index, Spiritual Survey, Patient Dignity Inventory and	Descriptive statistics using Patient Dignity Inventory.	Participants with COPD face a loss of personal dignity. Patterns of existential distress identified.
26. Doyle et al.⁴⁸ Australia	British Journal of Health Psychology	Participants had severe COPD	Pragmatic Randomised Controlled Trial	95 Participants Community setting	Intervention – CBT or Befriending service	Intention to treat analysis	CBT Therapy reduced depression symptoms but not anxiety.
27. Harrison et al.⁴⁹ Canada	Chronic Respiratory Disease	9 out of the 15 participants had severe or very-severe COPD	Two-stage mixed methods study	15 participants Community setting	Mixed method study. Semi-structured interviews and Questionnaires	Inductive thematic analysis Pearson correlations	Self-conscious emotions were related to elevated anxiety and depression.
28. Ivziku et al.⁵⁰ Italy	Quality of Life Research	49 of the participants had severe or very severe COPD	Cross-sectional descriptive design	80 Participants Outpatient setting	Patient health questionnaire Generalised Anxiety Disorder questionnaire 12-Item Short form health survey	Descriptive statistics Pearson’s product-moment correlation coefficients	Caregivers psychological distress influences patient’s physical quality of life.
29. Keil et al.⁵¹ Germany	Chronic Respiratory Disease	406 of the participants had severe or very severe COPD	Online study	Community setting 531 participants	Online survey utilising COPD disability index, Hospital Anxiety and Depression Scale, Antonovsky’s sense of coherence scale, 13-item Resilience Scale	Multiple linear regression analyses	Sense of coherence and resilience hold potential to assist adjustment to living with COPD.
30. Low et al.⁵² Canada	Western Journal of Nursing Research	38 of the participants had severe to very severe COPD	Cross-sectional survey study	87 Participants Community Setting	Questionnaires: St. George’s Respiratory Questionnaire, Attitudes to Aging Questionnaire.	Multiple analysis of variance	Participants downplayed their symptoms of COPD and psychosocial impact.
31. Reijnders et al.⁵³ Germany	Journal of Chronic Obstructive Pulmonary Disease	41 participants had severe or very severe COPD	Outcome measurement study	Inpatient setting 104 participants	Face to face questionnaire completion – 6-minute walk test, De Jong Gierveld Loneliness Scale, The patient health questionnaire, Health-related quality of life questionnaire	Hierarchical linear regression	Loneliness identified in COPD and impacts upon ability to undertake pulmonary rehabilitation. Loneliness associated with poor exercise function.
32. Stenzel et al.⁵⁴ Germany	Psychology & Health	101 participants had severe or very severe COPD	Longitudinal physical examination and questionnaire	131 participants Inpatient setting	Self-report questionnaires	Regression and mediation analysis.	End of life care should not only be based upon physical illness symptoms but also upon psychological distress and disease-specific anxieties.
33. Vaske et al.⁷¹ Germany	Journal of Health Psychology	342 participants had severe or very severe COPD	Online survey design	444 participants Secondary Care	Online Questionnaires: Illness Perceptions Questionnaire/Essener Coping Questionnaire/HR-QOL Short Form	Hierarchical regression and moderation analysis	To prevent reduced HR-QOL in COPD, treatment needs to include promotion of coping with the disease and functional illness perceptions.
34. Vitacca et al.⁵⁶ Italy	Journal of Palliative Medicine	All participants had less than a 1-year life expectancy	Intervention study	Inpatient and outpatient settings 10 participants	Self-report questionnaires	Data expressed as an absolute number of percentages.	Bad days of life, negative emotions and perception of disease deterioration were topics discussed by patients. Telehealth is accepted by patients.
35. Rosa et al.⁷² Italy	Nursing Open	Participants within included papers had severe or very severe COPD	Mixed methods Systematic Review	20 papers reviewed	Rapid evidence assessment	Thematic synthesis	Resilience is a useful concept when understanding family caregiving within COPD.