Anxiety and depression symptoms, coping strategies, and appraisal of living with idiopathic pulmonary fibrosis: implications for psychological support

Graphical abstract

IPF: idiopathic pulmonary fibrosis; PSS-10: 10-item Perceived Stress Scale; STAI-Y: State-Trait Anxiety Inventory form Y; BDI-II: Beck Depression Inventory II; Brief-COPE: Brief Coping Orientation to Problems Experienced questionnaire.

Abstract

Background

To determine whether the strategies people implement to cope with idiopathic pulmonary fibrosis (IPF) help to explain individual differences with regard to comorbid anxiety/depression, we investigated whether coping strategies moderate the associations between perceived stress and symptoms of anxiety/depression. The perception of living with fibrosis and its associations with coping strategies were also explored to better understand the processes underlying the use of different strategies.

Method

Mixed-methods cross-sectional study design. Perceived stress, anxiety/depression symptoms and coping strategies were assessed among 35 people with IPF using the Beck Depression Inventory-II, Spielberg's State-Trait Anxiety Inventory-Y, 10-item Perceived Stress Scale and Brief Coping Orientation to Problems Experienced questionnaire scales. We created experimental videos showing an actor playing the role of a person with IPF accompanied by two extras, and interviewed participants about the emotions, thoughts, expectations, and behaviours they projected onto the characters in order to assess their perception of life with IPF.

Results

“Self-blame” was associated with perceived stress, anxiety and depression symptoms and moderated the relationship between perceived stress and anxiety symptoms: perceived stress predicted anxiety symptoms only when participants blamed themselves. Anxiety symptoms were also negatively associated with the “humour” and “acceptance” strategies. Depression symptoms were predicted by perceived stress, “behavioural disengagement” and lower use of the “venting” strategy. Participants who described no positive aspects of living with IPF used “instrumental and social support”, “active coping” and “distractibility” strategies the most.

Discussion

The results highlight the relevance of assessing coping strategies in cases of anxiety/depression and suggest that adaptive strategies such as commitment to actions in line with personal values and acceptance should be prioritised.

Shareable abstract

Links between coping and anxiety/depression show the relevance of assessing and considering coping strategies as therapeutic targets for the prevention and care of comorbid anxiety and depression among patients with idiopathic pulmonary fibrosis https://bit.ly/4chED7p

Introduction

Idiopathic pulmonary fibrosis (IPF) is a rare and serious disease characterised by irreversible damage to respiratory function, leading to dyspnoea, cough, fatigability and eventually the need for oxygen therapy [1]. The literature reports a high prevalence of symptoms of anxiety (21–60%) and depression (24–49%) comorbid with fibrosis [2–7]. This invites reflection on whether individual factors, such as the strategies used to cope with IPF, influence the emergence of anxiety/depression symptoms.

Lazarus and Folkman's [8] transactional model of stress and coping is based on interactions between the individual and their environment in situations threatening psychosocial wellbeing. The individual evaluates the situation and feels stressed if their resources are insufficient to manage the threatening situation. To cope with the stressful situation and reduce its impact, the individual implements adjustment strategies called coping. Coping strategies are defined as “all cognitive and behavioural efforts” [8] employed to manage stress. These strategies focus on problem solving, seeking social support, avoidance, or positive thinking [9]. They can be understood as adaptive or maladaptive [10, 11] depending on the extent to which they reduce emotional distress, improve overall functioning, and promote psychological wellbeing in the short and long term, or whether they provide temporary relief, but have negative medium- or long-term psychological, physical or social consequences. For example, among people who feel stressed about slowing down their friends during a walk because of their dyspnoea, some people may choose to give up the walk: this strategy of “avoidance” reduces short-term stress, but may be maladaptive by causing loneliness and by leading to a vicious circle with an accelerated decline in health due to a reduced level of physical activity. Conversely, using the “active coping” strategy would be adaptive: it aims to resolve the problem, for example by choosing excursions where it is possible to arrange a shorter circuit without penalising friends. A qualitative study conducted among 10 people with fibrosis showed that the use of the coping strategies of “acceptance”, “thinking positively” and “emotional expression” helped them to be optimistic, change their perspective and overcome depression symptoms [12]. All the participants in the study took part in a support group: the group encouraged both emotional expression and problem-focused coping strategies. These data highlight the relevance of assessing the links between coping and depressive symptoms in a larger group of people with IPF, looking at both adaptive and maladaptive strategies, and focusing also on links between coping and anxiety due to the high prevalence of anxiety among people with fibrosis and the fact that chronic stress can lead to both anxiety and depression symptoms [13].

Coping strategies are implemented when a stressful event is appraised by a subject as exceeding their individual resources and as representing a threat, pain or loss [8, 14]. To understand how people with IPF appraise living with fibrosis, a cognitive behavioural model approach would be to analyse their emotions, thoughts and behaviours associated with the situation [15], as well as the influence of the thoughts, emotions and behaviours of people around the individual with IPF on the situation [16].

The objectives of this study were to recommend therapeutic targets for the prevention and care of comorbid symptoms of anxiety and depression among people with IPF by:

• 1) Assessing associations between perceived stress, symptoms of anxiety, symptoms of depression and coping strategies (figure 1).

• 2) Specifying the relationships between these variables by testing whether perceived stress can play a role in predicting the severity of symptoms of anxiety and depression, and whether the implementation of maladaptive coping strategies or, conversely, the failure to use adaptive coping strategies moderates the effect of perceived stress on the severity of symptoms of anxiety and depression, to determine whether coping strategies could be relevant therapeutic targets to help people with anxious depressive symptoms and under stress caused by fibrosis.

• 3) Exploring the appraisal of living with fibrosis in a new way thanks to experimental videos showing an actor playing a person with IPF in everyday situations, and exploring the relationships between this appraisal and the coping strategies implemented.

FIGURE 1.

Conceptualisation of the links between perceived stress, coping and anxiety-depressive affects.

Material and methods

Participants, procedure and measures

All consecutive people with IPF followed-up and seen in medical consultation at one tertiary interstitial lung disease centre (Centre de Référence Constitutif des Maladies Pulmonaires Rares de l'Adulte, Dijon-Bourgogne University Hospital) were invited to participate to this cross-sectional study design, from January 2023 to July 2024.

This study uses mixed methods. After collecting informed consent, a psychologist interviewed participants and administered the different questionnaires individually (supplementary methods). Participants first watched three experimental videos showing an actor playing the role of a person with IPF alongside two extras (see the “making of” videos in the supplementary material and figure 2). Five versions of the videos were developed, with the symptoms presented by the actor playing a person with pulmonary fibrosis varying in each one; in the version used in the present study, the actor had dyspnoea, cough and oxygen therapy. After each filmed video sequence, participants were asked questions assessing the emotions, thoughts, expectations and behaviours they projected onto the characters in the video, so as to access their appraisal of living with pulmonary fibrosis (supplementary methods). Next, participants answered questionnaires assessing the severity of depression symptoms (Beck Depression Inventory-II [17]), perceived stress (10-item Perceived Stress Scale [18, 19]), anxiety symptoms (Spielberg's State-Trait Anxiety Inventory, form Y [20]), their coping strategies (Brief Coping Orientation to Problems Experienced questionnaire (Brief-COPE) [21]) and their socioeconomic status (Barratt Simplified Measure of Social Status [23]). Data relating to pulmonary fibrosis were collected from the medical records. The ethics evaluation committee/institutional review board (IRB00003888, IORG0003254, FWA00005831) of the INSERM (French Institute of Health and Medical Research) has reviewed and approved the research project (identifier 21-849).

FIGURE 2.

Photos taken during each of the three video sequences (walking, stairs, card game).

More information about the procedure is provided in the supplementary material.

Statistical analysis

To determine whether age and socioeconomic status should be controlled for in the main analyses, correlations between these variables and the scores of perceived stress, anxiety symptoms, depression symptoms and coping were calculated. Then correlations were analysed between perceived stress, anxiety symptoms, depression symptoms and coping strategy scores. The GAMLj module (General Analyses for the Linear Model in jamovi) [24], was used to assess the moderation model in which coping strategies moderate the effect of perceived stress on the degree of anxiety and depression symptoms (variables were centred). Depending on whether the normality condition was met or not, either the t-test or the Mann–Whitney U-test was used to test for differences in coping strategies between participants groups, based on two quantitative indicators established from the qualitative analysis data.

Results

Quantitative analyses

35 participants (32 men and three women), with a mean age of 75 years (range 60–89 years) and a diagnosis dating back 2 years and 4 months on average (sd 23.7 months; range 1–106 months) were included in this study. Descriptive scores are shown in table 1 and in the supplementary material.

TABLE 1.

Descriptive sample data: scores for perceived stress (10-item Perceived Stress Scale), symptoms of depression (Beck Depression Inventory II), symptoms of anxiety (State-Trait Anxiety Inventory form Y) and coping (Brief Coping Orientation to Problems Experienced questionnaire), socioeconomic status and medical data

Dimensions (/total score)	Subjects n	Mean±sd	Median (range)
Perceived stress (/40)	33	14.6±6.19	15 (2–31)
Depression symptoms (/63)	33	9.52±8.68	8 (1–37)
Anxiety symptoms (/80)	31	39.6±10.8	37 (25–70)
Coping
Factor: social support (/32)	32	16.6±5.16	16.5 (6–28)
Venting (/8)	32	4.09±1.78	4.0 (1–8)
Emotional support (/8)	32	4.47±1.78	4.0 (2–8)
Instrumental support (/8)	32	4.56±1.97	4.0 (1–8)
Religion (/8)	32	3.50±2.02	2.0 (1–8)
Factor: problem solving (/16)	32	9.56±2.85	10.0 (3–16)
Active coping (/8)	32	4.84±1.53	5.0 (1–8)
Planning (/8)	32	4.72±1.78	5.0 (2–8)
Factor: avoidance (/40)	32	15.8±4.43	15.5 (6–27)
Behavioural disengagement (/8)	32	2.91±1.35	2.0 (2–8)
Self-distraction (/8)	32	4.47±1.57	5.0 (2–8)
Substance use (/8)	32	2.03±0.47	2.0 (1–4)
Denial (/8)	32	3.09±1.73	2.5 (1–8)
Self-blame (/8)	32	3.34±1.66	3.0 (1–7)
Factor: positive thinking (/24)	32	15.8±3.22	15.0 (8–24)
Humour (/8)	32	4.09±1.78	4.0 (1–8)
Positive reframing (/8)	32	5.16±1.46	15.0 (2–8)
Acceptance (/8)	32	6.59±1.46	7.0 (3–8)
Socioeconomic status (/66)	34	33.1±14.5	30.3 (8–66)
6MWD m	33	358±123	385 (100–575)
mMRC score (/4)	35	1.86±0.73	2 (1–3)
FVC % pred	35	82.3±20.8	81 (41–128)
DLCO % pred	35	40±17.4	34 (15–87)
Total lung capacity %	33	80.1±18.6	77 (46–121)
Cough score (/10)	26	4.92±1.76	5.0 (2–8)

6MWD: 6-min walk distance; mMRC: modified Medical Research Council dyspnoea; FVC: forced vital capacity; % pred: % predicted; D_LCO: diffusing capacity of the lung for carbon monoxide.

Correlations between perceived stress, anxiety symptoms, depression symptoms and coping

Socioeconomic status was negatively correlated with the coping factor “avoidance” (r=−0.37, p=0.04), and age with the coping strategy “distractibility” (r=−41, p=0.018): partial correlations were thus run for “avoidance” and “distractibility” in the following analyses.

Table 2 shows correlations between scores of depression symptoms, anxiety symptoms, perceived stress and coping. Perceived stress, anxiety symptoms and depression symptoms were positively correlated in pairs. Perceived stress was also positively correlated with the coping factor “avoidance” and more specifically with the strategy “self-blame”. The score of symptoms of anxiety was negatively correlated with the coping factor “positive thinking”, and more specifically with the strategies “humour” and “acceptance”; and positively with the coping factor “avoidance”, and more specifically with the strategy “self-blame”. The score of symptoms of depression was negatively correlated with the strategy “venting” and positively with three avoidance coping strategies: “behavioural disengagement”, “substance use” and “self-blame”.

TABLE 2.

Correlations between perceived stress, depression symptoms, anxiety symptoms, and coping scores assessed respectively with the 10-item Perceived Stress Scale, Beck Depression Inventory-II, State-Trait Anxiety Inventory form Y and Brief Coping Orientation to Problems Experienced questionnaire

	Depression symptoms		Anxiety symptoms		Perceived stress
	r	p-value	r	p-value	r	p-value
Factor: social support	−0.18	0.32	0.007	0.97	0.24	0.18
Venting	−0.45*	0.011	−0.18	0.33	0.08	0.65
Emotional support	−0.22	0.24	−0.04	0.81	0.14	0.44
Instrumental support	−0.10	0.60	−0.11	0.55	0.10	0.60
Religion	0.22	0.24	0.31	0.08	0.33	0.06
Factor: problem solving	−0.13	0.47	−0.025	0.89	0.10	0.58
Active coping	−0.26	0.14	−0.19	0.30	0.02	0.91
Planning	0.01	0.94	0.13	0.49	0.14	0.43
Factor: avoidance	0.35	0.055	0.40*	0.031	0.39*	0.033
Behavioural disengagement	0.41*	0.019	0.26	0.17	0.23	0.19
Self-distraction	0.16	0.38	0.23	0.22	0.11	0.57
Substance use	0.38*	0.03	0.10	0.58	0.25	0.18
Denial	0.03	0.86	0.09	0.62	0.13	0.49
Self-blame	0.49**	0.004	0.53**	0.002	0.45**	0.009
Factor: positive thinking	−0.15	0.41	−0.36*	0.042	−0.09	0.62
Humour	−0.25	0.17	−0.39*	0.031	−0.28	0.12
Positive reframing	0.05	0.78	0.10	0.57	0.29	0.10
Acceptance	−0.08	0.65	−0.46**	0.009	−0.16	0.38
Depression symptoms			0.72***	<0.001	0.65***	<0.001
Anxiety symptoms					0.63***	<0.001

Pale orange/plain text: no correlation; yellow/italic text: negative correlation; dark orange/bold text: positive correlation. *: p<0.05; **: p<0.01; ***: p<0.001.

Moderation models of coping strategies on the association between perceived stress and participants’ anxiety and depression symptoms

The correlation results enabled us to specify the conceptual model according to which the association between perceived stress and anxiety/depression symptoms may be moderated by coping strategies: we have only included in the model the coping strategies which were significantly correlated to anxiety symptoms (“self-blame”, “humour”, “acceptance”) and/or depression symptoms (“venting”, “behavioural disengagement”, “substance abuse”, “self-blame”). Thus, the moderation analysis was performed at the level of individual coping strategies. We also considered anxiety and depression symptoms as two different outcomes because of their different relationships with coping strategies. Thus, two moderation models were run: 1) the moderation of the relationship between perceived stress and anxiety symptoms by the strategies “self-blame”, “humour” and “acceptance”; 2) the moderation of the relationship between perceived stress and depression symptoms by the strategies “self-blame”, “behavioural disengagement”, “substance use” and “venting”.

The first moderation model (supplementary table S1) was significant and explained 54% of the variance of anxiety symptoms (F(7,23)=6.05, p>0.001, adjusted R²=0.54). Interaction between perceived stress and self-blame was significant (β=0.39, se=0.19, t=2.31, p=0.03): the effect of perceived stress on the degree of anxiety symptoms varied according to the extent of the use of the strategy “self-blame” (moderation effect). Interactions between perceived stress and the strategies “humour” (p=0.79) and “acceptance” (p=0.13) were nonsignificant. The main effect of perceived stress on anxiety symptoms was not significant either (β=0.18, p=0.25): perceived stress was associated with a greater degree of anxiety symptoms only when participants used the strategy “self-blame”.

The second moderation model (supplementary table S2) was significant and explained 80% of the variance of depression symptoms (F(9,22)=14.93, p<0.001, R²=0.80), but the effects were additive and not interactional: none of the interactions between perceived stress and the four moderators was significant (p_s>0.05). The main effect of perceived stress was significant (β=0.45, p<0.001), as well as the effect of venting (β=−0.33, p=0.005) and behavioural disengagement (β=0.23, p=0.035): venting and behavioural disengagement predicted depression symptoms, but did not moderate the effect of perceived stress on depression symptoms.

Qualitative analyses: appraisal of living with fibrosis

Furthermore, we wanted to explore the appraisal of living with fibrosis by identifying the thoughts, emotions and behaviours that participants associate with fibrosis and their perceptions of how others view them, through the exploration of the thoughts, emotions and behaviours participants project onto others, in order to assess links between this appraisal of living with fibrosis and coping strategies related to fibrosis. To this end, we conducted an inductive thematic analysis based on participants’ answers to the questions following filmed video sequences.

Actor playing a person with pulmonary fibrosis

The responses of most participants suggested an identification with the actor playing the role of a person with pulmonary fibrosis (e.g. “I personally…” (P21), “If it was me” (P19), “I annoy people by coughing like that, I think I would say that to myself” (P23), “What he has is what I have” (P15)). This spontaneous identification highlighted the relevance of the experimental videos as a tool to explore the perceptions and emotions associated with fibrosis. Out of the 35 participants, one single participant did not answer the questions (P15), because the identification with the actor playing a person with pulmonary fibrosis led to an intense emotional activation.

The thematic analysis of thoughts, emotions and behaviours that participants projected onto the actor playing a person with pulmonary fibrosis enabled access to their appraisal of living with fibrosis. Three main themes were highlighted (table 3):

• 1) The experience of living with pulmonary fibrosis: aspects of living with fibrosis reported were mainly negative, but there were nevertheless a few positive points, such as the satisfaction of being able to do activities despite the symptoms.

• 2) Coping strategies: most of the strategies described were adaptive, but some were maladaptive and a few participants described having no coping strategies in some situations.

• 3) Expectations regarding the two extras: the majority of participants (32 out of 34) described an expectation of support from these two extras, but only four out of 34 participants spontaneously mentioned that the actor playing a person with pulmonary fibrosis might actively ask them for help (except for help from a doctor).

TABLE 3.

Thematic analysis of thoughts, emotions and behaviours that participants projected onto the actor playing a person with idiopathic pulmonary fibrosis (IPF): examples of narratives by theme

Themes and subthemes#	Examples	Participants n/N
Theme 1a: the experience of living with fibrosis, negative points
Subtheme 1: anxious and depressive feelings	“Sadness” (P18), “loss of zest for life” (P29), “anxious” (P6), “overwhelmed” (P17), “annoyance” (P13), “helplessness” (P27)	27/34
Subtheme 2: feeling of being diminished or inferior	“He feels diminished because of his loss of autonomy” (P23), “feels inferior because he cannot keep up with other people” (P6), “traumatised by being disabled” (P12)	24/34
Subtheme 3: physical symptoms: pain, respiratory distress, cough, exhaustion	“What he has is what I have”, “you think you're dying when you have these coughing fits because you can't stop them” (P15)	21/34
Subtheme 4: embarrassment and/or guilt towards oneself or others (in relation to symptoms, the need for help, feeling like a burden)	“He feels that he is disturbing others” (P6), “when you want to speak, you start coughing. It's embarrassing for you and for those who hear you” (P1), “he is making others suffer [because of his condition]” (P2), “he should have been more careful when he was younger” (P10)	17/34
Subtheme 5: anxious anticipation of the future, loss of capacity and/or death	“One day or another I'm going to suffocate” (P5)	12/34
Subtheme 6: feeling or fear of being alone, neglected, abandoned, uninteresting, judged	“He is afraid that people will abandon him when he is at an advanced stage” (P12)	10/34
Subtheme 7: suicidal thoughts, death seen as an escape from illness	“Wishing for a fatal outcome rather than enduring this situation” (P2)	9/34
Subtheme 8: feeling of injustice/anger towards others who do not help, understand or consider him	“Injustice because others are not interested in him” (P7)	7/34
Subtheme 9: does not know what the actor feels or thinks that he feels nothing	“I don't know” (P1), “nothing in particular” (P14)	5/34
Subtheme 10: wondering about the cause of fibrosis or why him	“Why is this happening to me, why do I have this?” (P18)	4/34
Subtheme 11: need to be alone	“I hope people will leave so that I can rest and be alone” (P5)	4/34
Subtheme 12: difficulties in communicating to others that he is not contagious	“He doesn't know how to justify himself, thinking that they will think it's another disease that may be contagious” (P6)	2/34
Subtheme 13: fear that too much effort will worsen the fibrosis	“Fear that his condition will worsen if he overexerts himself” (P12)	1/34
Theme 1b: the experience of living with fibrosis, positive points
Subtheme 1: pleasant emotions related to oneself: pride in doing, desire to fight, enjoyment of playing, wisdom	“Pride and satisfaction at having managed to climb the stairs” (P24), “the wisdom of living in the present moment” (P28)	10/34
Subtheme 2: pleasant emotions related to others	“He feels good because he is surrounded by people” (P23)	3/34
Theme 2a: coping strategies, adaptive ones
Subtheme 1: problem solving to adapt to the situation	“Take a break” (P31), “stop and catch one's breath, sit down” (P3)	20/34
Subtheme 2: seek or follow the care and advice of a doctor or psychologist; hope in research	“Continue to take care of yourself and stay on the right path by following your doctors’ instructions” (P18)	19/34
Subtheme 3: positive thinking and acceptance: rationalising, encouraging oneself, holding on to the good times, thanking others	“Regain moral strength to enrich your mind” (P5), “he tells himself that he must mourn the loss of certain activities that he will no longer be able to do” (P34)	15/34
Subtheme 4: seeking emotional or instrumental support from others	“Getting involved with an organisation that allows them to share their experiences and give each other tips” (P29)	4/34
Theme 2b: coping strategies, maladaptive ones
Subtheme 1: avoiding difficulties by discontinuing the current activity or similar future activities	“He's going to say, ‘I'm fed up, I'm bothering you, I'm leaving’” (P1)	8/34
Subtheme 2: hiding one's condition: forcing oneself to walk, hurry, play, pull oneself together, not express one's emotions or difficulties, maintain self-control	“For his own self-esteem, even if he feels like giving up, he won't want to show that he's weak. He'll keep playing. That's what I would do. I would keep fighting so as not to show that I'm not well” (P11)	7/34
Subtheme 3: blaming others	“The others don't care about him, they're all hypocrites” (P7); “they're scumbags” (P33)	6/34
Subtheme 4: self-blaming	“He should have realised from the outset that he was not going to take the stairs” (P21), “I keep them waiting” (P23)	5/34
Theme 2c: lack of coping strategies	“There is nothing he can do; he can only endure it” (P20)	8/34
Theme 3: expectations toward others
Subtheme 1: support through reassurance, guidance, cheerfulness, attentiveness, empathy, attention to needs, not showing sadness	“A helping hand, assistance, even just holding onto someone's shoulder, physical support” (P20), “they cannot provide physical comfort, but they can offer moral support” (P17)	32/34
Subtheme 2: medical assistance	“He expects affection from those around him and an improvement [in his health] from the medical staff, that would give him a zest for life” (P19)	11/34
Subtheme 3: no expectations because of the belief that others cannot or will not do anything	“Materially, we cannot help someone who is choking” (P13), “they can't do anything” (P15)	9/34
Subtheme 4: respect for pace and autonomy	“Let them advance at their own pace” (P31), “let them be autonomous” (P18)	6/34
Subtheme 5: affection, sharing good times	“Let them continue to play with him” (P14)	6/34
Subtheme 6: to be at ease	“Let him cough alone” (P10), “let him finish coughing” (P20)	5/34
Subtheme 7: to be considered a normal person, not just someone who is ill	“That they continue to treat him as a normal person” (P30), “they should look at him much less insistently […]. I also see it when we go through the disabled checkouts, we get comments” (P8)	5/34
Subtheme 8: that others do not know their condition	“I don't want to show that I'm not well, even if I'm ill, I don't want them to realise that I'm not well” (P11)	1/34

^#: subthemes are listed in decreasing order of frequency.

Two extras with the actor playing a person with pulmonary fibrosis

With regard to the thoughts, emotions, and behaviours that participants projected onto the two extras, three main themes were highlighted (table 4):

• 1) Support provided: most participants described the two extras as being sometimes caring and supportive and sometimes not, depending on their perceived closeness with the actor playing a person with pulmonary fibrosis, the situation or the match between the support provided and the needs projected onto the actor playing a person with pulmonary fibrosis.

• 2) Understanding and interpretation of the situation: two-thirds of participants described the two extras as having a realistic and empathetic perception of the situation experienced by the actor playing a person with pulmonary fibrosis and one-third described a misunderstanding of the fibrosis or a misinterpretation leading to judgement and blame of the actor playing a person with pulmonary fibrosis.

• 3) Emotions and behaviours: most of the time participants projected empathy, sadness and/or feelings of helplessness onto the two extras, but some of them described avoidance, indifference and aggressivity.

TABLE 4.

Thematic analysis of thoughts, emotions and behaviours that participants projected onto the two extras: examples of narratives by theme

Themes and subthemes	Examples	Participants n/N
Theme 1: help and support provided by the two extras
Subtheme 1: fluctuations in description: the two extras are sometimes described as helpful and/or supportive and sometimes not, depending on their presumed closeness to the actor playing the person with pulmonary fibrosis, the situation, or the adequacy of the help provided	(P13) Situation 2: “Invite him to rest” (support) versus situation 3: “Either doing nothing or leaving because he [the person] is no longer fit to play” (no support) and situation 1: “it depends on their relationship with that person, whether they are children, acquaintances or strangers. In any case, they would react with restraint, with discretion rather than overflowing empathy”	17/34
Subtheme 2: positive perception: others are described as helpful (seeking solutions, offering advice) and/or supportive (comfort, encouragement, affection, distraction)	(P14): Situation 1: “take him home or to hospital, in any case to a bed”; situation 2: “support him emotionally and then physically if he stumbles”; situation 3: “ask him what's wrong, how he is, keep distracting him”	8/34
Subtheme 3: negative perception: others are described as unable or unwilling to help, or as not knowing how to help.	(P17): Situation 1: “they won't do anything because they don't know what to do”; situation 2: “they do nothing, they completely ignore the situation so as not to have it on their conscience”; situation 3: “get up and leave, they won't do anything special”	9/34
Theme 2: understanding and interpretation of the fibrosis
Subtheme 1: realistic and empathetic perception of the situation	“It's not funny to have this disease” (P3), “they tell themselves that it's not his fault, that he doesn't have to apologise, and wonder how they can help him” (P24)	22/34
Subtheme 2: lack of knowledge about the illness or misinterpretation of the situation, sometimes leading to blaming	“They have questions about the disease he has” (P6); “ah, the poor old man” (P13), “perhaps he is coughing because of smoking” (P1), “he should have sought treatment earlier” (P10), “think that he is not really ill because it is a little-known disease; they are ignorant about the disease” (P20)	9/34
Theme 3: emotions and behaviours projected onto extras
Subtheme 1: empathy, sadness and helplessness	“Empathy, at least” (P20), “mercy” (P3), “they feel sorry for him, seeing him like this” (P25), “resignation” (P2), “distraught” (P29), “they are disoriented, they are helpless” (P6)	30/34
Subtheme 2: avoidance either out of embarrassment or modesty, or so as not to hurt, worry or embarrass them	“They will leave, run away, so they no longer have to face him” (P1), “they will pretend not to see anything, so as not to hurt him or embarrass him” (P23)	12/34
Subtheme 3: indifference, disinterest, impatience or annoyance	“It doesn't bother them” (P7)	11/34
Subtheme 4: pleasant emotions	“Share his joy” (P19), “happy to share a good time” (P29)	8/34
Subtheme 5: embarrassment at hearing coughing, seeing the actor unwell, not knowing how to help, being in good health oneself	“Someone coughing is annoying” (P1), “slight embarrassment at knowing that they are in good health” (P2)	6/34
Subtheme 6: comparison of their condition with that of the actor playing the person with pulmonary fibrosis	“They wouldn't like to be in his shoes” (P23)	6/34
Subtheme 7: actor described as troublesome, burdensome, even shameful; aggressive comments towards the actor playing the person with pulmonary fibrosis	“I can't wait for him to die” (P35), “ashamed to be with him” (P35), “better to let him die to get rid of him, he's a burden on the family” (P33)	5/34
Subtheme 8: overprotection	“They say they have to watch him because he has difficulty walking” (P12)	2/34
Subtheme 9: belief that the actor playing the person with pulmonary fibrosis is unaware of their illness	“They tell themselves that it's very unfortunate, that he's a poor chap who isn't aware of his illness” (P7)	1/34

^#: subthemes are listed in decreasing order of frequency.

Data also showed that nine out of 34 participants had a predominantly negative impression of the two extras; eight out of 34 a predominantly positive one; and 17 out of 34 participants had a mixed/ambivalent impression, that was sometimes negative, sometimes positive depending on the closeness with the actor playing a person with pulmonary fibrosis projected onto the two extras and/or the situation (e.g. they would offer help with walking, but not to pick up the card; close relatives are helpful and empathetic, but strangers are indifferent).

Links between coping and appraisal of living with pulmonary fibrosis

Qualitative analysis of thoughts, emotions and behaviours that participants projected onto the three characters enabled the generation of two quantitative indicators: 1) presence (score 1) versus absence (score 0) of positive aspects in the participant's description of the sequences of daily life of the actor playing a person with pulmonary fibrosis; 2) description of the two extras either mainly negative (score 0), including both positive and negative aspects (score 1), or mainly positive (score 2). Among participants who described no positive aspect of the actor's sequences of daily life (n=12), the mean scores of the strategies “emotional support”, “instrumental support”, “active coping” and “distractibility” were higher than among participants who had described at least one positive aspect (n=18; supplementary table S3). Mean score differences between groups were not significant for other coping strategies. None of the coping strategies were significantly correlated to the indicator of description of the two extras (negative, mixed, positive; p_s>0.05)

Discussion

Faced with the major stressor of IPF, most participants in our study do not passively deal with the situation; on the contrary, they cope with it. Interestingly, descriptive results show that the most frequently implemented coping strategies seem to be adaptive, such as “acceptance” and “positive reframing”. However, the adaptiveness or effectiveness of a strategy depends on the situation at stake and the factors considered, such as wellbeing [25]. For example, “self-distraction” was initially classified as an inappropriate strategy, but recent studies show that it can be adaptive and effective to deal with sources of chronic stress when it involves engaging in an activity that generates pleasant emotions [11]. This seems to be the case in IPF, as several participants spontaneously expressed the emotional benefits of distraction by playing cards (feeling “good” [being] “surrounded by people”). Effectiveness can be monitored through levels of anxiety and depression symptoms: the least depressed participants are those who use the “venting” strategy more and the less anxious participants are those who use the “humour” and “acceptance” strategies most, which leads us to consider these strategies as effective (figure 3). Since coping is considered a specific, changing and modifiable process, it is possible to offer educational interventions to people with IPF aimed at reinforcing functional strategies, reducing harmful ones and increasing flexibility in the choice of strategies [25]. An intervention such as this could have significant potential, in view of the results of this study showing that the use of these adaptive strategies is not easy for all people with IPF, and not in all contexts: indeed, depression symptoms are associated with “substance abuse” and predicted by low use of the “venting” and “behavioural disengagement” strategies. Also, participants who cope with fibrosis stress by “blaming themselves” are the most anxious and depressed and, when they blame themselves, their perceived stress increases their anxiety symptoms. These results extend those of previous studies [3–7] by highlighting the effect of perceived stress and coping strategies on anxiety and depression symptoms and by leading us to consider “self-blame”, “behavioural disengagement”, “venting”, “humour” and “acceptance” as psychotherapeutic targets for people with IPF care.

FIGURE 3.

Summary of the effects highlighted in the present study between perceived stress, coping and anxiety-depression symptoms.

Self-blame may help people to cope with IPF by giving meaning to a situation that has none: having the fibrosis. It may also be the expression of the rumination process, a depression symptom leading to devaluation and excessive guilt [26]. People may initially use the “self-blame” strategy to cope with IPF, which triggers the rumination process and reinforces self-blaming, leaving them at risk of deteriorating mood. Similarly, “behavioural disengagement” may be considered both as a coping strategy which allows the individuals to escape from stress by avoidance and as a depression symptom, with mutual reinforcement [26]. Thus, assessing these processes among people with IPF and the associated vicious circles with fibrosis appears to be important.

Lazarus and Folkman's [8] transactional model allows us to consider the coping strategies implemented by the individual as dependent on their subjective perception of the situation and their assessment of it. Qualitative data analysis suggests that participants’ appraisals of living with fibrosis are mainly negative and characterised by symptoms of anxiety and depression, the feeling of being diminished, physical pain, embarrassment and anxious anticipation of the future. Only one-third of participants have a more nuanced assessment which includes positive aspects of living with fibrosis, such as feeling supported and the pride of succeeding despite illness. These results are consistent with the high prevalence of demoralisation, loss of sense of dignity and existential suffering described in a previous quantitative study [27]. However, they contrast with data collected through questionnaires showing that most participants have minimal/low range of depression/anxiety symptoms. This difference may be due to the social desirability bias [28]. This bias may be less pronounced in the interview following the experimental videos, which allowed participants to project their experiences onto the actor playing a person with fibrosis, with whom they easily identified, instead of describing their own feelings. It underlines the usefulness of an assessment based on situations of everyday life. The difference between qualitative data and data collected through questionnaires might also be explained by the fact that humans, even with a good mental health, have a tendency to focus on negative information and events more than on positive ones [29]. This negativity interpretation bias is amplified among people with depression [30], but also among people who had adverse childhood experiences [31], and it varies according to some personality traits [32]. Assessing this bias among people with pulmonary fibrosis might be relevant in order to better understand their living with pulmonary fibrosis.

Faced with this stressful experience of fibrosis, participants mention both adaptive coping strategies such as problem solving, asking for medical assistance and support from others, positive thinking and acceptance; and maladaptive coping strategies, such as avoidance and self-blame, in line with the results collected through the coping questionnaire. Qualitative data add that six out of the 34 participants projected onto the actor playing a person with pulmonary fibrosis the use the strategies of blaming others and hiding feelings. A few participants also projected on the actor playing a person with pulmonary fibrosis the feeling of enduring the situation without being able to cope with it. All participants projected on the actor playing a person with pulmonary fibrosis a need and an expectation of help and support from others. 25 out of the 34 participants described others as supportive, at least partially: support is offered by certain people or in certain situations. However, the other nine participants described others as powerless, clumsy, indifferent, annoyed by the actor playing a person with IPF or ashamed to be with him. Some comments towards the actor playing the person with pulmonary fibrosis are even blaming and aggressive: “Better to let him die to get rid of him, he's a burden on the family” (P33). These results highlight the need to systematically assess people's experiences of living with fibrosis in order to guide their care.

As suggested by Lazarus and Folkman [8], participants’ coping strategies differ according to their perception of living with pulmonary fibrosis: indeed, participants who project only negative aspects of living with fibrosis onto the actor have higher scores for the use of several coping strategies (“instrumental and emotional support”, “active coping” and “distractibility”) than participants who cite at least one positive aspect. As these strategies seem adaptive, we would have expected them to be more present among participants who perceive positive aspects of the situation. However, coping strategies are used when the stress exceeds peoples’ resources [8]. Therefore, these results emphasise quite significant needs for support and distraction to cope with living with fibrosis among people who perceive only negative aspects of living with fibrosis and are in line with the study by Senanayake et al. [12] reporting the benefits of support.

Taken together, the results suggest that it would be useful to offer people with IPF who have comorbid anxious/depressed symptoms a safe space where they can express their emotions, get support to engage themselves in actions that are meaningful and in line with their values (so as to avoid “behaviour disengagement” and “self-blame”) and to develop adaptive coping strategies, such as acceptance, humour and venting, to better regulate their emotions and gain access to a more satisfying life balance. From this perspective, acceptance and commitment therapy [33, 34] is interesting because it focuses on helping people to accept what is beyond their personal control and commit to carrying out actions that enrich their life. This therapy also enhances psychological flexibility, and interventions designed to foster flexibility in the use of coping strategies have been shown to reduce depressive symptoms [35]. It is interesting to note that most participants in our cohort do not have any anxiety or depressive disorders. This result leads us to wonder whether those who present these symptoms have a predisposition to anxiety and depression. To prevent anxiety and depression symptoms, particularly in people who might have a predisposition to anxiety/depression, it seems to be beneficial to help people with IPF engage in proactive coping strategies [36], that is, to build resources that will promote personal development and help them face challenges and achieve their goals.

Limitations

The limitations of this study stem from the sample size, the fact that the sample is skewed by gender, and the single-centre design. The limitations also come from the fact that we have only indirect access to participants’ perceptions via the thoughts, emotions and behaviours they attribute to the characters in the video. However, many participants reported identifying with the actor, which highlights the relevance of those videos.

Conclusion

This study highlights the emotional, cognitive, adaptive and social repercussions of fibrosis on people's quality of life. In particular, it shows that perceived stress predicts anxiety symptoms only when participants use the “self-blame” strategy, that anxiety symptoms are associated with the “humor” and “acceptance” strategies and that depression symptoms are predicted by perceived stress, “behavioural disengagement” and lower use of the “venting” strategy. It thus underlines the relevance of assessing coping when anxiety/depression symptoms are comorbid to pulmonary fibrosis or to prevent anxiety/depression symptoms. The Brief-COPE scale [22] may be used to screen for coping. When difficulties are detected, screening needs to be followed by a clinical interview with a psychologist or a psychiatrist to complete assessment, as for screening of other psychological dimensions such as anxiety and depression symptoms. Results also emphasise the usefulness of conducting a systematic assessment of the people's experience of the pulmonary fibrosis, in addition to assessing their emotional state and coping strategies, in order to better understand how people with fibrosis are doing.

To help people with fibrosis who face depression and anxiety symptoms, educative and psychotherapeutic care might be proposed in group sessions to promote social and instrumental support. Experimental videos created for this research could be used in such sessions, because they facilitate identification and emotional engagement, two essential components for therapy. From a research perspective, it would be interesting to demonstrate the relevance of experimental videos to promote mental reflection by comparing how people with IPF express their experiences through the experimental videos versus during a clinical session without using videos.

Supplementary material

Please note: supplementary material is not edited by the Editorial Office, and is uploaded as it has been supplied by the author.

Supplementary material 01732-2025.SUPPLEMENT ^{(323.8KB, pdf)}

Video S1 01732-2025.SUPPLEMENT ^{(686MB, mp4)}