Abstract
Background
Most people with congenital heart disease (CHD) now reach adulthood, and many wish to become parents. However, many in this group struggle with health challenges and are at risk for complications related to their heart disease early in life. What parenthood means for adults with CHD is still an unexplored area.
Objectives
Describe experiences of being a parent with CHD.
Methods
Ten semi-structured interviews with six women and four men were conducted using an inductive approach. Inclusion criteria: (i) visiting a CHD clinic at least once after age 18 and (ii) having biological children. Data were analyzed using qualitative content analysis, from a manifest level to deeper latent interpretation.
Results
The results comprised three themes. The complex emotional landscape of parenthood covered how heart disease became a tangible concern after becoming a parent, making life feel fragile. Strategies for navigating life as a parent illustrated how participants dealt with parenthood by adapting to their limitations and accepting their present and future. Sharing eases life’s challenges described the participants’ need to be met as whole person facing both physical and emotional challenges.
Conclusion
The heart disease became visible in the daily lives of parents with CHD, both as a tangible reminder and in a physical sense. Healthcare professionals should address physical and emotional challenges, as parenthood can heighten awareness of personal vulnerability. The study underlines the need to inquire about support and counseling needs, as parenthood for adults with CHD can add an extra dimension to life’s challenges.
Graphical abstract
Highlights
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Participants expressed deep gratitude for the experience of parenthood.
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The CHD became increasingly visible in daily life as a tangible reminder and in a more physical sense.
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Parents with CHD desire to be met both physically and emotionally by healthcare
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The study emphasises healthcare professionals to be aware and inquire about the need for counselling.
1
Introduction
Parenthood has been described as one of the most overwhelming experiences in a person’s life, with challenges at different levels and different contexts [ ]. Studies show that people with chronic ill health consider parenthood to have made their lives richer [ ], but not being the primary parental caregiver in all situations can also bring sorrow [ ]. Congenital heart disease (CHD) is a structural heart defect developed in the fetal stage, occurring in approximately 1 % of children [ ]. Due to improved pediatric cardiac care, the survival rate in high-income countries has risen dramatically in recent decades, and over 95 % of children with CHD will now reach adulthood [ , ]. The increased chances of survival have led to more women with CHD choosing to become pregnant, and this trend is expected to continue [ ]. Previous research on parenthood and CHD has focused on morbidity and mortality in pregnancy and childbirth [ , ], while research focusing on parenthood from a longer perspective is still limited.
How individuals are affected by their heart disease partly depends on the complexity of the lesion [ ]. However, all adults with CHD can expect to need lifelong follow-up care since complications can develop later in life [ ]. Research also shows that this group experiences accelerated aging [ , ], with a median age at death of 64 years [ ], and those with severe CHD face an even shorter lifespan [ , ]. Despite the severity of the heart condition and the risk of facing health challenges in life, there is an increasing trend of adults with CHD becoming parents [ ]; indeed, women with CHD consider parenthood to be a victory against their heart disease [ ]. However, in addition to their desire to have children, adults with CHD also wish for support from healthcare professionals in the early postnatal period [ , ], and many have concerns about the transmission of genetic risks to their children [ , ].
For all these reasons, it is essential to explore the issue of parenthood among adults with CHD. Existing qualitative research has predominantly centered on women despite the fact that parenthood is an experience shared by both parents. This study, therefore, included perspectives from both male and female parents with CHD to provide a comprehensive understanding of parenthood within this population. Thus, the aim is to describe the experiences of being a parent with CHD.
2
Methods
2.1
Study design and participants
To explore the experiences of parenthood with CHD, semi-structured interviews employing an inductive approach were conducted and analyzed using qualitative content analysis [ ]. This methodology facilitated a step-by-step progression from manifest data analysis to latent interpretation and understanding. The participants comprised six women and four men with structural CHD who had biological children, who had visited a CHD clinic in Sweden after turning 18, and who spoke Swedish. Each participant had 1–3 children aged 2–18 years (average: 8 years). The division participants’ lesion complexity is based on the ESC Guidelines [ ]. Participants’ characteristics are summarised in Table 1 .
| Characteristics | Total number of participants = 10 |
|---|---|
| Gender | |
| Female | 6 |
| Male | 4 |
| Average age | 39 |
| Min–Max | 33–48 |
| Occupation | |
| Full-time | 8 |
| Part-time | 2 |
| Place of residence | |
| Urban area | 7 |
| Rural area | 3 |
| Complexity of lesion | |
| Mild | 1 |
| Moderate | 4 |
| Severe | 5 |
| Symptoms of the heart disease | 7 |
| Cardiovascular medication | 6 |
2.2
Data collection
Participants were recruited via nurses at the heart clinics who informed patients about the study and an online announcement by the Swedish Child Heart Association. Prospective participants contacted the first author via email for more details and to schedule an interview. A total of 13 individuals expressed interest in participating. However, two decided not to proceed after receiving the study information, and one did not fully meet the inclusion criteria. Study information and consent forms were sent by email and post, with written consent obtained before interviews. The research group developed an interview guide, which was slightly adjusted after one pilot interview. After seven interviews, the data became repetitive, with no new information emerging. Nevertheless, three additional interviews were conducted to ensure the robustness of the findings [ ]. Interviews were undertaken mainly digitally, except for two in-person sessions. Participants were initially asked if they had questions about the study, followed by queries about their sociodemographic background and heart condition. Recordings began after these preliminary questions, using an analog Dictaphone. Participants were asked to describe their experiences of parenthood and their future expectations (Interview guide in the supplementary material). Interviews lasted 18 56 min (average: 31 min) and were conducted and manually transcribed verbatim by the first author.
2.3
Analytical process
The analysis started with listening to and reading the interviews to ensure accurate transcription [ ]. Subsequently, meaning units were identified, condensed, and analyzed into codes using a manifest approach to preserve their sense of meaning [ ]. The first author and co-authors AB and AW independently analyzed one interview and compared their findings to ensure analytical consistency. Then, the first author analyzed the remaining nine interviews with support from the co-authors. The analysis involved repeatedly referring to the original text to ensure the integrity of the interview content. Once consensus was reached on the codes, the first author sorted and further abstracted the codes into sub-themes and themes (see Table 2 for an example). These were then refined in collaboration with the co-authors until a final agreement was achieved. Codes unrelated to the study’s aim were excluded from the results. Swedish was used throughout the analysis to ensure the integrity of the data and to facilitate ease of reference. For the present study, quotations were translated from Swedish to English and presented to highlight the content.
| Theme: Strategies for navigating life as a parent | |||
|---|---|---|---|
| Meaning unit | Condensed meaning | Code | Subtheme |
| When we come home from school… She gets to watch TV, and I’m sort of asleep. But then, I usually lie next to her to be close. | When we get home from school, she watches TV and I sleep, but I lie next to her to be close. | When she watches TV, I lie next to her to be close. | Finding ways to be a present parent. |
2.4
Trustworthiness
In conducting this study, we considered the four validity perspectives: credibility, dependability, confirmability, and transferability [ ]. Credibility was ensured by including participants from all over Sweden and by following the same interview guide in every case except for follow-up questions. Dependability was taken into account through discussions within the research group at various stages to ensure transparency and confirmability before reaching a final agreement on the results [ ]. The authors, comprising three midwives and one cardiology nurse, all had experience in qualitative research and were all aware of their pre-understanding regarding the patient group and parenting in general. The findings reflect the experience of parenthood within the Swedish context, and the reader is left to decide whether these results can be transferred to other contexts.
2.5
Ethics
Approval was granted by the Swedish Ethical Review Authority (ref: 2021-02364), and the study adhered to the principles of the Declaration of Helsinki throughout the research process [ ].
3
Results
Parenthood proved to be a transformative experience for all participants, evoking a mixture of great joy and fragility. The results comprised three themes and eight sub-themes ( Table 3 ).
| Themes | Sub-themes |
|---|---|
| Feeling gratitude since children were not a given | |
| The complex emotional landscape of parenthood | Experiencing a sense of loss over physical limitations |
| Living with constant worry | |
| Strategies for navigating life as a parent | Finding ways to be a present parent |
| Striving to accept life and prepare for the future | |
| Holding back to defuse the children’s concerns | |
| Using one’s own experiences | |
| Sharing eases life’s challenges | Professional counselling facilitates acceptance |
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