Meeting the mental health needs of people with chronic obstructive pulmonary disease: a qualitative study

Abstract

Objectives: This study aimed to understand the mental health needs of people living with chronic obstructive pulmonary disease: what they were experiencing, what they wanted (or did not want) which might be described as ‘felt need’, what they had accessed or received (‘expressed need’) and how, from their perspective, their emotional needs might be more effectively met by health care services.

Methods: Qualitative study with 14 patients with a confirmed diagnosis of chronic obstructive pulmonary disease, where a member of the clinical team had recognised that the patient was suffering from associated emotional distress.

Results: Three themes emerged: a sense of assuming a different identity as the disease challenged abilities, the experience of social isolation with fear of dependence and barriers the participants encountered acting as obstacles to coping, adapting and accessing treatments. There were mixed feelings about the value of talking about problems, with both psychological and physical barriers strongly militating against both expression of need and utilization of care offered.

Conclusions: Innovative research and clinical care should be aimed towards development of skills, strategies and systems required to engage sensitively and negotiate needs for care, in a patient-centred manner, with people who do not necessarily see the need to ask for emotional support.

Keywords

Chronic obstructive pulmonary disease mental health unmet need qualitative research quality of life

Introduction

Chronic obstructive pulmonary disease (COPD) is manifested by physical symptoms of breathlessness, fatigue and cough affecting sufferers in their activities of daily living particularly at times of exacerbation. Mental health problems co-occur in people with a diagnosis of COPD. Depression and anxiety have been described as the most common yet least-treated co-morbidities¹ and significantly impact on quality of life.² The prevalence of depression has been found to be as great as 42% and that of anxiety as high as 19% in those with stable COPD¹ and is high in comparison with other long-term conditions.³ Additionally 25–50% of patients diagnosed with severe COPD and 19% of those with the mild to moderate form of the disease suffer from anxiety or depression.^1,4^–⁶ Fear and anxiety, in particular panic disorder,⁷ have been shown to be directly associated with episodes of breathlessness particularly during the night,⁸ and dyspnoea has a significant influence on perceived burden of disease.⁹ Women, older patients and those with greater depression scores have poorer physical functioning.¹⁰ No study has yet shown anxiety or depression to be an independent risk factor for hospital readmission, but depression is possibly causally associated with exacerbation frequency and risk of hospital admission¹¹ and depressive symptoms with increased risk of mortality in COPD.^12,13

In a focus group study of people with chronic bronchitis, Nicolson and Anderson¹⁴ described the negative impact on self-esteem; participants thought of themselves as different to who they were before the onset of illness, which led to a sense of frustration and emotional decline. They also perceived themselves to be a burden and avoided contact leading to increasing social isolation. Other qualitative research has highlighted the importance of the perception of ‘control’ over symptoms¹⁵ and the pervasive impact of dypsnoea on everyday life.¹⁵^–¹⁷ For a sample of patients with severe COPD,¹⁸ quality of life was seen as mainly depending on family relationships, opportunities afforded locally for neighbourliness and freedom from fear, mobility and independence in the activities of daily living in addition to the absence or successful mitigation of symptoms of concomitant disease.

However, despite recommendations that mental health problems co-morbid with COPD should be more actively treated,¹⁹ the mental health needs of people with COPD are notably poorly served, with both patient- and physician-level barriers to the detection and management of anxiety and depression. Patient barriers may include a lack of knowledge about depression and treatment options, stigma, reluctance to talk about emotional problems or the masking of mood symptoms by physical symptoms such as fatigue, decreasing exercise tolerance and dyspnoea.^1,20 A small qualitative study of newly diagnosed patients with COPD in Sweden suggested that ‘shame’ for perceived self-inflicted disease may be a factor in failure to seek help.²¹ This is echoed in the themes of ‘self-blame’ but also a resistance to being blamed by others (and thus avoidance of others’ gaze) described by the participants in Nicolson and Anderson’s study.¹⁴

In this study, we aimed to try and understand how the un-met mental health needs of this group might be better served by health care services. We approached this by exploring the mental health needs of people living with COPD from four related perspectives which are integral to developing improved services and interventions for this group: what were they experiencing at present? What had they already accessed or received (‘expressed need’)?²² What did they want which they had not already received? ‘(felt need’) and how might, from their perspective, their emotional needs be more effectively met by the National Health Service.

Methods

Study design

Qualitative study with in-depth interviews of participants.

Setting

Two community–based COPD clinics in Salford, Greater Manchester, United Kingdom.

Sample

Fourteen patients with a spirometry-confirmed diagnosis of COPD using the British Thoracic Society (BTS) guidelines,²³ attending a community-based COPD out-patient clinic, where a member of the clinical team (the Consultant Physician) had previously clinically identified associated emotional distress, were invited to participate. Those who gave informed written consent were recruited to be interviewed. All consents were collected and interview dates confirmed with the patients a week prior to the interview date. The sample was both a convenience sample (approaching those who were due to attend the clinic over a 10-week time period) and purposive (specifically recruiting a sample of those patients within this group with already known associated emotional issues). Selected patients were over the age of 16 but with no upper age limit. We excluded patients whom the clinician considered would be unable to carry out an interview without incurring undue distress because of breathlessness or other associated physical or psychological symptoms. Twenty-two patients were initially approached, seven refused and one withdrew consent after interview. Reasons were unwilling/insufficient time to stay for interview after their appointment with the physician and feeling too breathless to engage in an interview.

Ethics

Ethical approval was obtained from the North Manchester Local Research Ethics Committee with Research and Development approval gained from Salford Research and Development committee.

Interviews

In depth, semi-structured interviews lasting between 40 and 60 min were carried out by a medical student researcher, trained and supervised by an experienced qualitative researcher (neither of whom were part of the clinical team). They were conducted in a private interview room and audiotaped and transcribed for analysis. The interviewer was guided by a list of topics (see Box 1) to address the research questions covering various issues including the background to the individual developing COPD; the ways in which their lives had changed; the impact of the illness on their mental health and the way they perceived themselves; the coping strategies they had developed (to explore their experience of the illness); what help they has received to date (to explore ‘expressed need’) and what help they would like to have received but had not (to explore ‘felt need’). Questions were modified in order to address points emerging from the thematic analysis of the data which was conducted concurrently.

Box 1.

Topic guide for interviews.

1. I’d like to start by asking you a bit about yourself

Prompts: age, marital status, children, work

2. Next I’d like to ask you about your illness

• Could you tell me about what has happened to you?

Prompts: How diagnosed? When diagnosed? Currently how well controlled is your illness? How does it affect your life?

How has your illness affected the way you think about yourself?

○ How did you feel at diagnosis? (e.g. depressed, angry, frightened, relieved at diagnosis, suspected it could be worse) or isolated

○ How do you feel now?

○ If different what do you think has brought about this change in the way you feel?

○ How do your physical symptoms affect how you are feeling in yourself?

○ How do changes in your mood affect your physician symptoms? Have you noticed anything? If so what?

• Stressors and coping strategies

○ What things make your feel stressed?

▪ (psychological, physical, social, familial)

○ Coping strategies

▪ What ways do you use to cope with how you feel?

3. Now I’d like to ask about your treatment

• What treatments are you receiving?

• What help have you received for how you have been feeling emotionally?

○ Treatment from GP or clinic

○ Medication

○ Talking treatments

○ Anything else?

• What help would you have liked to receive that you have not?

○ Treatment from GP or clinic

○ Medication

○ Talking treatment

○ Anything else?

▪ Information

▪ Support

▪ Treatment

Finally is there anything else you would like to tell me that would ensure that we could improve how we help people who have experienced similar problems?

Participants were also asked about anything that, from their perspective, would be an effective addition to their treatment. They were asked to complete two standardised self-report measures of the severity of depression and anxiety (PHQ-9 and GAD-7).^24,25 Information indicating the severity of the interviewee’s COPD as per the British Thoracic Society (BTS) classification²³ was also collected.

Analysis

Data were initially analysed concurrent with continuing data collection by development of a simple thematic coding template using MAXqda2 qualitative software; drawing on both the interview questions informed by the literature, and novel concepts emerging from the data, in construction of the template. Interviews were examined thematically across the whole dataset as well as in the context of each person’s interview, using a ‘constant comparative’ method,²⁶ developing from simple codes to concepts and emergent themes, feeding back developing ideas and questions into the interview process. The transcripts were discussed at length by the research interviewer [LE] and her supervisor [LG] during regular debriefing meetings, and both collaborated in each stage of development of the themes. No new themes were emerging from the data at the conclusion of the thematic analysis, and the researchers were satisfied that saturation had been achieved at this point. This analysis was then further developed by [LG] [supervisor] who utilized a Framework approach²⁷ to specifically develop and discern what constituted ‘met’ and ‘unmet needs’ in this dataset. This involved interrogating both the raw data and emergent themes from the initial thematic analysis to distil, interpret and structure findings in the light of the original research questions. A biopsychosocial taxonomy,²⁸ considering physical, psychological and social aspects of care, was employed in developing and populating frameworks with data. At each stage of the analysis, emergent concepts and ideas were developed and refined through discussion in the broader research team to include the respiratory physician and nurse and obtain feedback.

Results

The sample interviewed included 14 patients (7 male; 7 female), with a wide variation in age from 49 to 79 years with PHQ- 9 scores ranging from 4 to 24 (note the range is from 0 to 27 where >10 would suggest the need for some kind of therapeutic intervention) and GAD-7 from 0 to 20 (range is from 0 to 21 and a score of >8 suggests probable panic disorder or generalised anxiety). This indicated a wide variation in symptom severity from sub-threshold anxiety and or depression, to severe symptoms (see Table 1). Half of those interviewed had a carer (member of the family) present during the interview (at their request). Characteristics of those interviewed can be found in Table 1.

Table 1.

Characteristics of participants

Subject number	Age	Sex	PHQ-9	GAD-7	Current smoking status	Marriage status	Occupation	Home support	FEV1	FEV1%	FVC	FVC%	FEV1/ FVC
1	70	M	6	8	Current smoker	Widow	Manual worker in abrasive company	None	0.73	24	1.93	49	38
2	62	M	10	7	Ex-smoker	Married	Painter and decorator	Partner	0.64	22	2.23	61	29
3	54	F	19	14	Current smoker	Divorced	Shop manager	Carer	1.44	57	2.83	95	46
4	61	M	14	14	Ex-smoker	Divorced	Plumber	Partner	0.9	28	2.04	51	44
5	64	F	11	4	Ex-smoker	Widow	Cleaner	Daughter	0.97	37	1.5	59	53
6	79	F	11	0	Current smoker	Married	Machinist/cleaner	Partner	0.57	33	1.64	77	35
7	62	F	4	4	Ex-smoker	Married	Office worker	Partner	1.01	48	1.63	64	63
8	78	F	10	19	Ex-smoker	Widow	Welfare assistant	None	0.95	64	2.31	126	41
9	65	M	21	20	Current smoker	Divorced	Long-distance lorry driver	None	0.77	30	1.93	63	40
10	73	F	4	0	Current smoker	Widow	Dental nurse	None	0.76	35	1.8	70	42
11	49	M	10	2	Ex-smoker	Single	Painter and decorator	None	1.48	50	3.5	90	42
12	50	F	24	15	Current smoker	Partner	Shop assistant	Partner	1.12	46	1.65	58	68
13	77	M	12	6	Current smoker	Married	Laboratory technician in petrol company	None	1.34	35	2.39	50	56
14	50	M	4	1	Ex-smoker	Divorced	Accountant	None	0.67	22	2.22	58	30
Mean (SD)	64 (10.5)		11 (6.2)	8 (7)					0.95 (0.29)	40 (13)	2.1 (0.54)	69 (21)	45 (12)

GAD: generalized anxiety disorder; FEV1: forced expiratory volume; FVC: forced vital capacity; PHQ: personal health questionnaire.

Experiencing the illness

Three main themes emerged which relate directly to the first research question – participants’ experience of the illness. First, a sense of changing identity as the disease challenged abilities, affecting confidence and self image. Second, the experience of social isolation, a consequence of experiencing physical limitations and emotional problems. Third, particular types of barriers the participants encountered acting as obstacles to coping, adapting and accessing treatments.

Changing identity

Almost all the participants experienced a change in and loss of their previous sense of who they were. This seemed to be a result of the disease changing the individuals’ abilities, independence and confidence levels, particularly in the presence of other people, and in comparison with their ‘past self’:

They don’t look at you the same – you aren’t the person that you used to be. You are somebody else now – … . And I was walking behind these two people. and my chest was really bad so I was going like that (breathing really deep and raspy) and they were looking round at me like I was some kind of monster you know – because my chest was that bad. (SN 9)

Sometimes, when I get out of the bath, sometimes M [carer] has to wipe me down, well most of the time really. She wipes me down … . I think it’s just you feel a bit degraded. It is like when it comes to me having to bend down – simple things. (SN 2)

The former had worked very independently as a long-distance lorry driver, and the latter had previously been a fit, active manual worker on a building site.

A wide range of emotional reactions in response to these distressing changes were described by participants (see Box 2). Many of those interviewed openly expressed embarrassment about their physical symptoms. Others spoke about how the symptoms prevented them doing things they wanted to which made them annoyed and frustrated.

Box 2.

Emotional reactions to illness.

Denial/resistance	“I didn’t take it on board.. I didn’t read about it or anything. I thought he was wrong so I didn’t … I didn’t do as I was told … I didn‘t go for my inhaler and when I did go … he told me off blah blah blah … stop it.” [SN 3]
Depression	“you feel what is the point of being here kind of thing. Because I can’t breath, I can’t move and I can’t do anything.”[SN 9]
Embarrassment	“You feel embarrassed and everything because it isn’t very good or nice -coughing and barking in front of someone.” (SN 1)
Resignation, guilt	“I refused to go to the doctor. I thought it was self-inflicted. If it’s self inflicted, why bother anyone?” [SN 13]Well, you know, if you’re breathless and you’ve smoked, well that’s it isn’t it? [SN 11]
Burden to others	“I just feel like I’m surplus to requirements as far as my family is concerned” [SN 12]“l I daren’t bother them. Say I’m ill … I’d never phone. I’d rather find my own way to do it. “[SN 1]
Anxiety, fear	“I’m hoping the doctor wants me to go onto the rehab at Hope, not that I’m frightened, I’ve got the forms, I’ve filled them out. It’s just a matter of sticking the envelope down. It was the word ‘gym’ that scared me.” [SN 14]
Panic	“Sometimes, when I can’t breathe and I can’t breathe and there’s just me and the baby just on our own, and I’m thinking, ‘Shit, I can’t breathe.’ What if anything happens to me, he’s going to be there.” [SN 10]
Frustration, anger	“I find it really hard and very frustrating because I can’t do it. Because there is nothing wrong with my brain but my body just says that’s it, no!” (SN 9)
Passive acceptance/stoicism	“It doesn’t bother me. It’s something I have to live with.” [SN 1]

Isolation and fear of dependence

Isolation from others, both due to decreased capability, but also self-imposed isolation related to their mood, was common:

I don’t see a fraction of the people I used to. (SN 13 former lab technician)

[swearing] don’t want anyone to come anywhere near me. (SN 12 former shop assistant)

A majority of the interviewees expressed a sense of feeling they were a burden to and dependent on those around them. They described how they attempted to reduce their reliance on others which contributed further to social isolation because of their fear of dependence and being a burden.

I don’t like relying on folk to come with me because I have always done things myself you know what I mean? I have never relied on people before me. They have always relied on me. But I just can’t do it now. I think I can but I can’t. (SN 8 former welfare assistant)

Several felt that nobody really understood what they were experiencing or how they were feeling which led to both a perceived and real distance between them and those that they had been close to. One woman who had been the manager of a shop said that her partner:

… would never understand, people don’t. He tries to understand now, but he doesn’t, he doesn’t. That’s why I get so frustrated. I can be walking and he’ll be walking miles in front of me and I’ll go … and he’ll turn around and look at me and say ‘what’s wrong!?’ and I’ll say ‘For god’s sake.. nothing!?’ and I sit down and go … (SN 3)

Relationships came under pressure, as friends and family tried to support them and prevent the person with COPD from becoming depressed and thus more isolated. This sometimes changed the dynamics of relationships:

That’s my own independence I don’t want to lose that … . Like my daughters will say why didn’t you phone when you were ill and all that. I think to myself – why should I? (SN 1 former manual worker)

Nevertheless, others also talked of how they found reassurance in being with people such as their family. They felt ‘safe’ in case their physical health started to deteriorate suddenly. They knew their family would instantly appreciate what was wrong with them and be able to do what was needed to help them.

… the only thing I think of is … I know she is there … . Probably if she wasn’t there … I don’t know … I do panic. (SN 5 former cleaner)

… at the moment now I feel quite alright, whether it’s because he’s here [referring to partner] constantly, I don’t know. [SN 10 former dental nurse]

However, they were aware that carers did not necessarily find it easy to provide this intensity of support, which contributed to and further compounded the sense of guilt that they felt.

Barriers to accessing care

Physical disability resulting from the illness itself functioned as a barrier to accessing care for several of the interviewees who talked about the practical barriers facing them in getting to clinics:

I mean, if I was going to Hope Hospital instead, I would still go in a taxi because I don’t want to park across the road at Stott Lane and then have to walk to the hospital, but I could go through the door there and find one of the hostesses who’d find me a wheelchair and take me wherever I was going … but here you can’t even be dropped off at the door. I bet it’s a man designed it. [SN 11]

But this was also compounded by emotional barriers which were intimately intertwined-acceptance, despair and guilt and which might all serve to militate against seeking further external help. Many of the participants talked about reaching an acceptance that nothing could be done to alleviate the situation. In some, this seemed to have some adaptive aspects in terms of being able to cope more effectively, by employing the technique of downward social comparison²⁹:

It’s not only me that has got this, there are hundreds and hundreds of other people as bad as me. (SN 1)

But some statements of ‘acceptance’ seemed potentially to mask a sense of deeper resignation:

If you get used to something, and you’ve had it so long, it’ll stop becoming an embarrassment, I’m sure. At this rate, in another two years time it won’t embarrass me because you become accustomed to it (SN 14).

And a desire not to be a burden to others:

If you’re really bad you rely on other people a lot of the time which I don’t like, because you feel a nuisance, well I do. Or a bit of a burden like. (SN 2)

Further compounded by a belief in some that this was all due to a self-inflicted problem anyway:

The reason I refused to go to the doctor . [was because] . . I thought it was self-inflicted. If it’s self-inflicted why both anyone? [SN 14]

For many interviewees, the focus was on finding their own ways of coping with their symptoms, particularly by ‘being positive’, resisting letting things get them down and simply bearing it:

[its] my own fault through smoking … . so I have to deal with it. It’s not fair on other people. [SN 3]

Well my attitude is, you know, don’t let it get into your head. If I were to allow this, what I have got, to get in to my head, I might as well get measured up. That’s how I look at it. I don’t let anything like this get on top of me. I’ll walk about even though it kills me. [SN 1]

These appeared however not only to serve as coping strategies but effectively as barriers to accessing emotional care:

I don’t want to go through everything again and again plus the fact I can’t remember much … like you talk about when it first started … that is an age ago to me … so much has changed … a life time ago … umm … . No and I don’t want to think about it and I don’t want to think that far back. I just go day to day now … and take it how it comes … that’s the only way I can do it. [SN 7]

Experiencing treatment

Interviewees expressed mixed feelings about the treatment that they had received thus far in their illness. Some expressed little faith in further medication – either for their physical or psychological problems:

Because over the last five years I’ve had more antibiotics and steroids than goodness knows what. You name it … I’ve had it. [SN 1]

And there was a general reluctance to take antidepressant medication.

I didn’t feel like they were doing me any good so I stopped taking them. He doesn’t know about that though. [SN 3 referring to antidepressant medication]

But I don’t think that makes much difference … . I don’t know whether it was any good or that but I just took it … .

I’ve not took two. [SN 6 talking about fluoxetine]

However, where the participants had been able to engage with pulmonary rehabilitation this was viewed very positively, learning ways to cope with symptoms and getting support from others:

… there are people there the same as me, you know. They’re not crying and I’m not crying. It helps to see others cope you know? And we are there together. [SN 4]

And where it had been accessed, psychological therapy was also viewed positively.

She was such a lovely lady [the psychologist] … she seemed to understand. She never judged me or anything and she did say if I ever needed her again I just had to see my doctor and she would be there for me. [SN 3]

Unmet needs

There were however doubts expressed by several participants about whether it was actually possible to do anything further to help them, either physically or emotionally. This was unsurprising given the powerful and often negative emotional reactions that many of them were having to their illness as described above.

The possibility that talking therapy might help was viewed with some scepticism:

Talking to other people isn’t going to give me a new set of lungs now is it? [SN 1]

Talking about it gets on my nerves to be honest. [SN 7]

Others considered that they might benefit from a more supportive approach, and in particular the opportunity to share the burden of their illness with peers:

I got a leaflet through from the doctors … it is like a 6 week course thing and it is with other people who have COPD and they are doing group therapies and all sorts of different things to do and activities so.. I think that would be pretty good because like I say you are not just helping yourself then. You would be helping other people [SN 9]

However this was balanced by a viewpoint expressed by others of simple resignation that there was nothing else that could be done, and no unmet needs to be met:

They’ve helped me as much as possible and they’ve been very very good with me. [SN 3]

You’ve got to sort your own way out of it, anyway, at the end of the day … . I think you’ve got to work your way through it yourself [SN 11]

There was also evidence in some interviews of a degree of ambivalence about expressing need. For example, early in his interview SN 1 talks about ‘feeling very down’ on some days but later counters this with ‘it doesn’t bother me, it’s something I have to live with.’ Similarly SN 6 says: I get down because I can’t do what I want to do’ but later adds ‘there’s no use moaning and groaning over it, what has happened has happened’.

Meeting unmet need

It was thus very difficult to facilitate discussion in the interviews of what might ensure that needs might be more effectively met. Many participants had difficulty in even acknowledging the existence of any unmet needs. As we noted above, there were instances in the interviews of where the apparent need for emotional support was met with ambivalence or rejected. Such rejection might in some people have been strongly related to their view of COPD itself as being self-inflicted and thus that their suffering was somehow ‘justified’. Thus, there was nothing that can be done to help them as noted above. In some instances, such barriers had been overcome by sensitive and flexible engagement by a therapist (as for participant SN 3 above). In other cases, engagement with treatment generally (but not focusing specifically emotional aspects of it) seemed to have been achieved by the provision of information about COPD in a clear and non-confrontational way.

The way they’ve explained everything, about what the condition is, yes, brilliant. Really brilliant, because it makes you understand; I can understand what’s happened to my lungs and how it’s been affecting them and what’s affected it, yes … .

… I’m very happy with all the help and the consideration I’ve had off everybody that’s been concerned. I’ve just had to learn to do what I’m told, for once. [SN 14]

Discussion

Interviews with participants with a diagnosis of COPD who had been identified by their consultant physician as suffering from associated emotional distress revealed three major themes that characterised their experience of the disorder: a sense of altered identity, social isolation and fear of dependence and barriers to accessing care. Although some had clearly accessed emotional support for their problems, and benefited from it, there was a sense of passive acceptance and resignation, compounded by the emotional concomitants of depressed mood such as despair and guilt. To this, for some, was added the impact of their belief in the disorder being essentially self-inflicted and thus something they would have to deal with themselves. All of these problems were further compounded by the negative views of the self and the future that are the recognised concomitants of depressed mood. Participants were thus largely unable to express whether or what their unmet needs for emotional care actually were, although for some their distress was clearly apparent and palpable.

During the analysis, it became apparent there was a need for health professionals to possess the necessary consultation skills to be able sensitively to negotiate with the patient in relation to denial and uncertainty about addressing emotional aspects of COPD.

Findings in relation to the published literature

A sense of altered identity in a similar group of patients (with chronic bronchitis) has previously been reported by Nicolson and Anderson.¹⁴ This also echoes the work of Bury³⁰ in his description of biographical disruption in people who experience chronic illness. Previous research has also highlighted how a sense of being a burden to others can result in social isolation,¹⁴ and the key role played by family and supporters in contributing to quality of life,¹⁸ both of which were echoed in our participants. Downward social comparison, which we identified as a coping mechanism used by some subjects, may be important in militating against depression older people with chronic physical symptoms.³¹ Our study adds to the literature by exploring how unmet needs for mental health care might, if at all, be addressed.

Clinical implications

There is undoubtedly evidence for the effectiveness of psychological interventions in COPD both in terms of the impact of pulmonary rehabilitation³² and some evidence for brief cognitive behaviour therapy-based intervention in primary care.³³ However, given the barriers that our participants experienced in accessing care, we would suggest that care may need to be more assertive, using, for example, active case management methods and collaborative care models to engage people more effectively.³⁴

We would suggest that consideration might be given to how denial of the specifically emotional consequences of COPD and mixed feelings about the need for emotional help and support might also be addressed earlier in the course of the illness. This could be through provision of appropriately designed information and sensitive use of negotiation, before such attitudes become entrenched. This however needs to be done in a way that does not disrupt and indeed promotes normal adaptive coping mechanisms. It will also require improved training of clinicians in patient-centred approaches to exploring the meaning and impact on mental health of chronic illness and assessment of severity of associated anxiety and depression. We think this may be more effective if focussed within primary care, rather than in the specialist setting in which we recruited our sample. It was our perception that in this setting participants may be much more difficult to engage in such discussions because of the increasing chronicity and severity, not only of their physical disease, but associated mental health problems. However, this necessitates further research.

Strengths and limitations of the study

Our sample was necessarily small, given the time limitations of the research interviewer who was a medical student, but saturation of themes was achieved. Although the student was an inexperienced interviewer she was closely supervised and proved highly able to engage interviewees in difficult discussion. Presence of carers and family members may have limited some aspects of the interview (for example in completion of the questionnaires) but the interviews nevertheless proved to be highly insightful.

Conclusions

Provision of mental health care to people with COPD poses major challenges in view of the physical and particularly psychological barriers that they experience in being able to access care. We would suggest that innovative research and clinical care should be aimed towards development of skills, strategies and systems required to engage sensitively and negotiate needs for care, in a patient-centred manner, with people who do not necessarily see the need to ask for emotional support.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

References

Maurer

Rebbapragada

Borson

. Anxiety and depression in COPD: current understanding, unanswered questions and research needs. Chest 2008; 134: 43–56.

Cully

Graham

Stanley

. Quality of life in patients with chronic obstructive pulmonary disease and co-morbid anxiety or depression. Psychosomatics 2006; 47: 312–319.

van den Bemt

Schermer

Bor

. The risk for depression comorbidity in patients with COPD. Chest 2009; 135: 108–114.

Light

Merril

Despars

. Prevalence of depression and anxiety in patients with COPD. Relationship to functional capacity. Chest 1985; 87: 35–38.

Van Manen

Bindels

Dekker

. Risk of depression in patients with chronic obstructive pulmonary disease and its determinants. Thorax 2002; 57: 412–426.

Brenes

. Anxiety and chronic obstructive pulmonary disease: prevalence, impact and treatment. Psychosom Med 2003; 65: 963–970.

Livermore

Sharpe

McKenzie

. Panic attacks and panic disorder in chronic obstructive pulmonary disease: a cognitive behavioral perspective. Respir Med 2010; 104: 1246–1253.

Gruffydd-Jones

Langley-Johnson

Dyer

. What are the needs of patients following discharge from hospital after an acute exacerbation of chronic obstructive pulmonary disease (COPD)? Respir Care J 2007; 16: 363–368.

Izquierido

Barcina

Jiminez

. Study of the burden on patients with chronic obstructive pulmonary disease. Int J Clin Pract 2009; 63: 87–97.

10.

Bentsen

Henriksen

Wentzel-Larsen

. What determines subjective health status in patients with chronic obstructive pulmonary disease: importance of symptoms in subjective health status of COPD patients. Health Qual Life Outcomes 2008; 6: 115–115.

11.

Collet

Shapiro

. Independent effect of depression and anxiety on chronic obstructive pulmonary disease exacerbations and hospitalizations. Am J Respir Crit Care Med 2008; 178: 913–920.

12.

De Voogd

Wempe

Koeter

. Depressive symptoms as predictors of mortality in patients with COPD. Chest 2009; 135: 619–625.

13.

Niti

Tan

. Depressive symptoms and chronic obstructive pulmonary disease: effect on mortality, hospital readmission, symptom burden, functional status, and quality of life. Arch Intern Med 2007; 167: 60–67.

14.

Nicholson

Anderson

. Quality of life, distress and self-esteem: a focus group of people with chronic bronchitis. Br J Health Psychol 2003; 8: 251–270.

15.

Fraser

Kee

Minisk

. Living with chronic obstructive pulmonary disease: insiders’ perspectives. J Adv Nurs 2006; 55: 550–558.

16.

Barnett

. Chronic pulmonary disease: a phenomenological study of patients’ experiences. J Clin Nurs 2005; 14: 805–812.

17.

Gullick

Stanton

. Living with chronic obstructive pulmonary disease: developing conscious bodily management in a shrinking life-world. J Adv Nurs 2008; 64: 605–614.

18.

Gutherie

Hill

Muers

. Living with severe COPD: a qualitative exploration of the experience of patients in Leeds. Respir Med 2001; 96: 196–204.

19.

NICE Clinical guideline 12. Chronic Obstructive Pulmonary Disease. http://www.nice.org.uk/nicemedia/live/13029/49397/49397.pdf (accessed 24 May 2012).

20.

Yohannes

Connolly

Baldwin

. A feasibility study of antidepressant drug therapy in depressed elderly patients with chronic obstructive pulmonary disease. Int J Geriatr Psychiatr 2001; 6: 451–454.

21.

Arne

Emtner

Janson

. COPD patients’ perspectives at the time of diagnosis: a qualitative study. Prim Care Respir J 2007; 16: 215–221.

22.

Bradshaw

The taxonomy of social need. In: McLachlan

(ed.) Problems and progress in medical care, Oxford: Oxford University Press, 1972; 71–92.

23.

Chronic obstructive pulmonary disease. National clinical guideline on management of chronic obstructive pulmonary disease in adults in primary and secondary care. Thorax 2004; 59(Suppl. 1): 1–232.

24.

Wittkampf

Naeije

Schene

. Psychiatry and primary care diagnostic accuracy of the mood module of the Patient Health Questionnaire: a systematic review. Gen Hosp Psychiatr 2007; 29: 388–395.

25.

Spitzer

Kroenke

Williams

. A brief measure for assessing generalized anxiety disorder – the GAD-7. Arch Intern Med 2006; 166: 1092–1097.

26.

Thorne

. Data analysis in qualitative research. Evid Based Nurs 2000; 3: 68–70.

27.

Ritchie

Spencer

Qualitative data analysis for applied policy research. In: Bryman

Burgess

(eds). Analysing qualitative data, London: Routledge, 1993; 173–194.

28.

Engel

. The need for a new medical model: a challenge for biomedicine. Science 1977; 196: 129–136.

29.

Gibbons

Gerrard

Downward comparison and coping with threat. In: Suls

Wills

(eds). Social comparison: contemporary theory and research. Hillsdale, NJ: Erlbaum, pp. 317–345.

30.

Bury

. Chronic illness as biographical disruption. Sociol Health Ilness 1982; 4: 167–182.

31.

Kohn

Smith

. The impact of downward social comparison processes on depressive symptoms in older men and women. Aging Int 2003; 28: 37–65.

32.

Coventry

. Does pulmonary rehabilitation reduce anxiety and depression in chronic obstructive pulmonary disease? Curr Opin Pulm Med 2009; 15: 143–149.

33.

Lamers

Jonkers

Bosma

. A minimal psychological intervention in chronically ill elderly patients with depression: a randomized trial. Psychother Psychosom 2010; 79: 217–226.

34.

Horn

van Benthem

Hakkaart-van Roijen

. Cost-effectiveness of collaborative care for chronically ill patients with comorbid depressive disorder in the general hospital setting, a randomised controlled trial. BMC Health Serv Res 2007; 26(7): 28–28.