Adult congenital heart disease (ACHD) poses psychosocial and mental health challenges. Integrating ACHD into one's identity, balancing cardiac concerns with adult responsibilities, and facing health challenges contribute to stress. 1 Over time, patients develop stress management strategies, some more successfully than others. Improved understanding of patients' coping patterns can inform clinical care and interventions.
Coping is a complex topic, modeled by various frameworks. The few studies examining coping in ACHD focused on clinical outcomes. The most granular assessment explored approach‐avoidance versus cognitive‐behavioral coping to organize experiences of hospitalized patients. 2 Nuances of how, when, or why patients use certain coping strategies remain largely unexplored.
One approach considered in chronic illness populations is primary‐ versus secondary‐control coping. 3 Primary‐control coping strategies focus on altering the stressor (eg, problem solving). Secondary‐control coping strategies focus on adapting one's response to the stressor (eg, acceptance, cognitive reframing). Through individual interviews, we investigated primary‐ and secondary‐control coping methods used to manage ACHD‐related stress.
We conducted a qualitative study of outpatients with ACHD to examine participants' resilience experiences. Detailed methods have been published 4 ; data are available from the corresponding author upon reasonable request. Briefly, patients were identified through medical records and invited to participate by phone and email. Maximum variation sampling for sex, age, race, ethnicity, and ACHD severity (moderate or complex 5 ) guided selection. Semistructured interviews occurred June 2020 to August 2021. Herein, we report results of our directed content analysis of coping observations that emerged from these interviews. Interviewers (J.M.S., A.C.B.) explored participants' approaches to managing ACHD‐related challenges and factors influencing behaviors. Interviews continued until no new constructs were identified. This study obtained institutional ethics approval; all participants provided informed consent.
To identify a model aligned with our findings, interviewers reviewed coping frameworks (eg, approach versus avoidance, emotion‐ versus problem‐focused, primary‐ versus secondary‐control coping) and developed an initial codebook; this was iteratively modified (by J.M.S., E.B., V.F.) during coding. Data were most closely aligned with the primary‐ versus secondary‐control coping model. One analyst (J.M.S.) classified data for presentation using this model; all authors agreed on its use.
We interviewed 25 participants (telephone n=16, video conference n=9); interviews lasted 34 to 76 minutes (median 52). Median age was 32 years (range 22–44); 52% identified as female, 16% Hispanic, and 72% non‐Hispanic White. Participants' anatomic ACHD was moderate (56%) or complex (44%); 76% were physiologic class C or D. Over 75% reported postsecondary education.
Health‐related anxiety, particularly prognostic uncertainty surrounding future health, was a prevalent driver of the need for effective coping (11/25 participants). Additionally, at least 8 participants mentioned a need to feel “in control” of this chronic, preexisting illness that was “not their fault.”
Many participants described strategies aligned with secondary‐control coping, focusing on their response to stressors rather than the stressors themselves (Figure). Examples of positive thinking (15/25) and acceptance of their condition (14/25) were provided across most interviews. These reflected competence in managing ACHD‐related stress, achieved by adequate knowledge and previously overcoming a difficult situation. “Staying positive will get you so far along the way. You have [ACHD]. You might as well keep a good attitude.” – 29‐year‐old man, IIIC ACHD. Distraction (14/25) was also commonly reported, often related to an uncontrollable situation.
Figure 1.
Demonstrative quotes reflecting primary‐control coping versus secondary‐control coping.
Participants less frequently described actions aligned with primary‐control coping (Figure). Problem solving (8/25) was facilitated by strong relationships with ACHD clinicians and tailored education. Living healthy lives to minimize future illness (5/25) and seeking advice about what to expect from others with ACHD (8/25) were also described as ways to cope.
Participants reported learning coping from family members (14/25) or through their own experiences with time (14/25). Strategies' perceived effectiveness changed with age; acceptance was more common among older patients with longer lived experience. None had specifically talked to their ACHD clinician about coping with stress, although some expressed interest if given the opportunity. Fewer than half had ever seen a mental health professional.
In summary, secondary‐control coping was more frequently described than primary‐control coping among our sample of outpatients with ACHD. This might reflect that many ACHD‐related stressors, like disease progression, are beyond individuals' direct control. Secondary‐control coping is generally considered adaptive in the context of chronic illness; indeed, lower depression and anxiety have been reported among patients with ACHD who practiced secondary‐control coping. 3
A limitation is that interviews were designed to assess resilience; information about coping arose from asking how patients manage ACHD‐related stress. Additionally, results may be biased toward experiences of successful coping.
Our results suggest that patients with ACHD tend to use strategies to modulate their responses to ACHD‐related stress rather than changing stressors themselves, reflecting secondary‐control coping. There have been limited formal means to learn stress management strategies. Knowledge regarding how patients independently navigate ACHD‐related stress may enable clinicians to provide better psychosocial support and inform the development of supportive care programs and research intended to build coping skills.
Sources of Funding
This study is supported by K23HL151801 (National Institutes of Health/National Heart, Lung, and Blood Institute, Steiner).
Disclosures
None.
Acknowledgments
The authors thank D. Erin Blakeney, Dr Andrea Corage Baden, and Ms Vea Freeman for their assistance in conducting this study.
This article was sent to Sula Mazimba, MD, MPH, Associate Editor, for review by expert referees, editorial decision, and final disposition.
For Sources of Funding and Disclosures, see page 3.
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