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Hoyos ME, Well A, Van Diest H, Lopez H, Morris M, Carberry KE, Johnson G, Fraser CD, Mery CM, Lamari-Fisher A. Navigating life with single-ventricle CHD: psychosocial needs across adulthood. Cardiol Young 2024; 34:2341-2348. [PMID: 39552548 DOI: 10.1017/s1047951124036084] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/19/2024]
Abstract
OBJECTIVE The population of adults with single-ventricle congenital heart disease (CHD) is growing. This study explores their lived experiences through an adult developmental psychology framework. METHODS Individuals aged 18 and older with single-ventricle CHD participated in Experience Group sessions and 1:1 interviews. Sessions were transcribed and analysed thematically. Themes were categorized by developmental domains and age group. RESULTS Of the 29 participants, 18 (62%) were female, 10 (35%) were emerging (18-29 years), 13 (45%) were established (30-45 years), and 6 (21%) were midlife adults (46-60 years). Emerging adults expressed reluctance to initiate romantic relationships and fear of burdening partners, while established adults reported strong relationships with partners deeply involved in caregiving. Emerging adults struggled with finding fulfilling work that meets their health needs, whereas established and midlife adults faced unemployment or early retirement due to health limits. Family dynamics shifted, with established and midlife adults educating their children to become caregivers. Physical limitations and low self-rated health were consistent across life stages, and midlife adults did not worry about traditional chronic conditions. Mental health concerns, including anxiety and depression, persisted across all life stages, but resiliency and positive affect were also evident. CONCLUSION Adults with single-ventricle CHD experience developmental milestones differently, indicating the need for early anticipatory guidance in these domains to achieve optimal outcomes in adulthood.
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Affiliation(s)
- Maria E Hoyos
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
- Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
| | - Andrew Well
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
- Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
| | - Heather Van Diest
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Health Social Work, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
| | - Hannah Lopez
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Health Social Work, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
| | - Marian Morris
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
| | - Kathleen E Carberry
- Value Institute for Health and Care, The University of Texas at Austin Dell Medical School and McCombs School of Business, Austin, TX, USA
| | - Gregory Johnson
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Pediatrics, The University of Texas at Austin Dell Medical School, Austin, TX, USA
| | - Charles D Fraser
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
| | - Carlos M Mery
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Surgery and Perioperative Care, Dell Medical School at the University of Texas at Austin, Austin, TX, USA
| | - Alexandra Lamari-Fisher
- Texas Center for Pediatric and Congenital Heart Disease, UT Health Austin and Dell Children's Medical Center, Austin, TX, USA
- Department of Psychiatry and Behavioral Sciences, The University of Texas at Austin Dell Medical School, Austin, TX, USA
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Hanley SJ, McCann S, Lee SI, Vowles Z, Plachcinski R, Nirantharakumar K, Black M, Locock L, Taylor B. Lost in the System: Responsibilisation and Burden for Women With Multiple Long-Term Health Conditions During Pregnancy. Health Expect 2024; 27:e14104. [PMID: 38872453 PMCID: PMC11176589 DOI: 10.1111/hex.14104] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/07/2024] [Revised: 05/23/2024] [Accepted: 05/26/2024] [Indexed: 06/15/2024] Open
Abstract
INTRODUCTION Over a fifth of pregnant women are living with multiple long-term health conditions, which is associated with increased risks of adverse outcomes for mothers and infants. While there are many examples of research exploring individuals' experiences and care pathways for pregnancy with a single health condition, evidence relating to multiple health conditions is limited. This study aimed to explore experiences and care of women with multiple long-term health conditions around the time of pregnancy. METHODS Semistructured interviews were conducted between March 2022 and May 2023 with women with multiple long-term health conditions who were at least 28 weeks pregnant or had had a baby in the last 2 years, and healthcare professionals with experience of caring for these women. Participants were recruited from across the United Kingdom. Data were analysed using thematic analysis. RESULTS Fifty-seven women and 51 healthcare professionals participated. Five themes were identified. Women with long-term health conditions and professionals recognised that it takes a team to avoid inconsistent care and communication, for example, medication management. Often, women were required to take a care navigation role to link up their healthcare providers. Women described mixed experiences regarding care for their multiple identities and the whole person. Postnatally, women and professionals recognised a downgrade in care, particularly for women's long-term health conditions. Some professionals detailed the importance of engaging with women's knowledge, and recognising their own professional boundaries of expertise. Many participants described difficulties in providing informational continuity and subsequent impacts on care. Specifically, the setup of care systems made it difficult for everyone to access necessary information, especially when care involved multiple sites. CONCLUSION Pregnant women with long-term health conditions can experience a substantial burden of responsibility to maintain communication with their care team, often feeling vulnerable, patronised, and let down by a lack of acknowledgement of their expertise. These results will be used to inform the content of coproduction workshops aimed at developing a list of care recommendations for affected women. It will also inform future interventional studies aimed at improving outcomes for these women and their babies. PATIENT OR PUBLIC CONTRIBUTION Our Patient and Public Involvement group were involved in the design of the study and the analysis and interpretation of the data, and a public study investigator was part of the author group.
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Affiliation(s)
- Stephanie J. Hanley
- Institute of Applied Health ResearchUniversity of BirminghamBirminghamWest MidlandsUK
| | - Sharon McCann
- Health Services Research UnitUniversity of AberdeenAberdeenAberdeenshireUK
| | - Siang Ing Lee
- Institute of Applied Health ResearchUniversity of BirminghamBirminghamWest MidlandsUK
| | - Zoe Vowles
- Department of Women and Children's HealthGuy's and St. Thomas' NHS Foundation TrustLondonUK
| | - Rachel Plachcinski
- Institute of Applied Health ResearchUniversity of BirminghamBirminghamWest MidlandsUK
| | - Krish Nirantharakumar
- Institute of Applied Health ResearchUniversity of BirminghamBirminghamWest MidlandsUK
| | - Mairead Black
- Aberdeen Centre for Women's Health ResearchUniversity of AberdeenAberdeenAberdeenshireUK
| | - Louise Locock
- Health Services Research UnitUniversity of AberdeenAberdeenAberdeenshireUK
| | - Beck Taylor
- Department of Health SciencesUniversity of WarwickWarwickWest MidlandsUK
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Sandberg M, Fomina T, Macsali F, Greve G, Estensen ME, Øyen N, Leirgul E. Time trends and birth rates in women with congenital heart disease; a nationwide cohort study from Norway 1994-2014. INTERNATIONAL JOURNAL OF CARDIOLOGY CONGENITAL HEART DISEASE 2024; 16:100507. [PMID: 39712532 PMCID: PMC11657671 DOI: 10.1016/j.ijcchd.2024.100507] [Citation(s) in RCA: 2] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/02/2024] [Revised: 03/11/2024] [Accepted: 03/14/2024] [Indexed: 12/24/2024] Open
Abstract
Background More women with congenital heart disease (CHD) reach reproductive age, but little is known of their success in having children. We investigated time trends of CHD in women of reproductive age and maternal CHD in childbirth and compared birth rates in women with CHD to birth rates in women without heart disease. Methods and results In a national cohort, we combined information from five registries in Norway 1994-2014. Among 1,644,650 women aged 15-45 years, 5672 had CHD. Among 1,183,851 childbirths, 3504 were registered with maternal CHD. The prevalences of mild and moderate/severe CHD in women increased by an average of 3-4% per year 1994-2014, as did the prevalences of mild and moderate/severe maternal CHD in childbirth. Compared to women without heart disease, the likelihood of having children was similar for women with mild CHD (rate ratio 1.03, 95% confidence interval 0.97-1.09) but lower for women with moderate/severe CHD (rate ratio 0.75, 95% confidence interval 0.68-0.84). The mean number of childbirths was similar in women with mild CHD and women without heart disease (1.81 vs 1.80, p = 0.722) but lower in women with moderate/severe CHD (1.42, p < 0.001). Conclusion In a national cohort over two decades of women of reproductive age, the prevalence of maternal CHD in childbirth reflected the increasing prevalence of CHD in the population. Birth rates were similar for women with mild CHD and women without heart disease, whereas women with moderate/severe CHD were less likely to have children and had a lower mean number of childbirths.
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Affiliation(s)
- Marit Sandberg
- Department of Clinical Science, University of Bergen, Norway
- Department of Obstetrics and Gynecology, Haukeland University Hospital, Bergen, Norway
| | - Tatiana Fomina
- Department of Global Public Health and Primary Care, University of Bergen, Norway
| | - Ferenc Macsali
- Department of Obstetrics and Gynecology, Haukeland University Hospital, Bergen, Norway
- Norwegian Institute of Public Health, Norway
| | - Gottfried Greve
- Department of Clinical Science, University of Bergen, Norway
- Department of Heart Disease, Haukeland University Hospital, Bergen, Norway
| | | | - Nina Øyen
- Department of Global Public Health and Primary Care, University of Bergen, Norway
- Department of Medical Genetics, Haukeland University Hospital, Bergen, Norway
| | - Elisabeth Leirgul
- Department of Heart Disease, Haukeland University Hospital, Bergen, Norway
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Harb E, Obieat HDA, Khalaf IA, Obeidat HM, Al-Ammouri I, Rn HAB, Momany MSA. Exploring the healthcare needs and experiences of pregnant women with congenital heart disease: A qualitative study. Women Birth 2024; 37:223-228. [PMID: 37821255 DOI: 10.1016/j.wombi.2023.10.002] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2023] [Revised: 10/05/2023] [Accepted: 10/05/2023] [Indexed: 10/13/2023]
Abstract
PROBLEM Little is known regarding the healthcare needs and experiences of pregnant women with congenital heart disease (CHD) during pregnancy. BACKGROUND Congenital heart diseases are the most common birth anomalies, and they embrace a wide range of defects ranging from mild to complex and life-threatening defects. Pregnancy carries many physiological and psychological changes that affect pregnant woman with CHD and need special attention and consideration. AIM To explore the healthcare needs and experiences of Jordanian women with CHD during pregnancy. METHODS A descriptive phenomenological design was used. Utilising purposive sampling, 15 participants were recruited. Data was collected using individualised semi-structured interviews. Interviews were recorded and transcribed verbatim. Data were analyzed using Colaizzi's method. FINDINGS Three themes were identified: a) A broad spectrum of health needs during pregnancy, b) not being cared for, c) and the healthcare journey: Challenges and recommendations. Findings revealed that pregnancy in women with CHD is associated with many challenges and needs, and the lived healthcare experiences are mostly negative. DISCUSSION This study addresses the healthcare needs and experiences of pregnant women with CHD during pregnancy. Our findings shed light on healthcare needs explored hidden aspects of the experiences of this vulnerable population and gave them the chance to make their voices heard. CONCLUSION The study concluded that pregnant women with CHD experience hardship associated with negative challenges and personal suffering. The findings highlight the importance of the basic values and the need for a holistic approach and effective teamwork to minimise suffering among pregnant women with CHD.
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Affiliation(s)
- Eman Harb
- Al-albayt University, School of Nursing, Jordan
| | - Hanan D Al Obieat
- Royal Medical Services College/ Al Balqaa Applied University, Sweileh, Amman 11910, Jordan.
| | - Inaam A Khalaf
- The University of Jordan, School of Nursing, Vice President for Scientific Schools, Jordan
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Liu JL, Wang Q, Qu DY. Postpartum quality of life and mental health in women with heart disease: Integrated clinical communication and treatment. World J Psychiatry 2024; 14:63-75. [PMID: 38327887 PMCID: PMC10845230 DOI: 10.5498/wjp.v14.i1.63] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/21/2023] [Revised: 12/06/2023] [Accepted: 12/21/2023] [Indexed: 01/19/2024] Open
Abstract
BACKGROUND Postpartum quality of life (QoL) in women with heart disease has been neglected. AIM To improve clinical communication and treatment, we integrated medical data and subjective characteristics to study postpartum QoL concerns. METHODS The study assessed QoL 6 wk after birth using the 12-Item Short-Form Health Survey. The Edinburgh Postnatal Depression Scale, Cardiac Anxiety Questionnaire, European Heart Failure Self-Care Behavior Scale, and a self-designed questionnaire based on earlier research were also used to assess patient characteristics. Patient data were collected. Prediction models were created using multiple linear regression. RESULTS This retrospective study examined postpartum QoL in 105 cardiac patients. Postpartum QoL scores were lower (90.69 ± 13.82) than those of women without heart disease, with physical component scores (41.09 ± 9.91) lower than mental component scores (49.60 ± 14.87). Postpartum depression (33.3%), moderate anxiety (37.14%), pregnancy concerns (57.14%), offspring heart problems (57.14%), and life expectancy worries (48.6%) were all prevalent. No previous cardiac surgery, multiparity, higher sadness and cardiac anxiety, and fear of unfavorable pregnancy outcomes were strongly related to lower QoL (R2 = 0.525). CONCLUSION Postpartum QoL is linked to physical and mental health in women with heart disease. Our study emphasizes the need for healthcare workers to recognize the unique characteristics of these women while developing and implementing comprehensive management approaches during their maternity care.
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Affiliation(s)
- Jia-Lin Liu
- Department of Obstetrics and Gynecology, China Medical University, Shenyang 110122, Liaoning Province, China
| | - Qi Wang
- Department of Psychiatry, General Hospital of Northern Theater Command, Shenyang 110016, Liaoning Province, China
| | - Dong-Ying Qu
- Department of Obstetrics and Gynecology, General Hospital of Northern Theater Command, Shenyang 110016, Liaoning Province, China
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West KM, Bayley E, Pechan J, Engelberg RA, Albright C, Buber J, Steiner JM. Adults with CHD balancing motivations and concerns in pregnancy decision-making. Cardiol Young 2023; 33:2221-2227. [PMID: 36632799 DOI: 10.1017/s1047951122004139] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/13/2023]
Abstract
BACKGROUND While the incidence of pregnancy has increased among individuals with adult CHD, little has been described about considerations and experiences of patients with adult CHD regarding pregnancy. OBJECTIVE We aimed to explore patients' motivations, concerns, and decision-making processes regarding pregnancy. METHODS In April 2019-January 2020, we conducted in-depth telephone interviews with patients (n = 25) with simple, moderate, or complex adult CHD, who received prenatal care at the University of Washington during 2010-2019 and experienced a live birth. Transcripts were analysed using thematic analysis. RESULTS Participants described motivations for pregnancy as both internal desires (motherhood, marriage fulfillment, biological connection, fetal personhood, self-efficacy) and external drivers (family or community), as well as concerns for the health and survival of themselves and the fetus. Factors that enabled their decision to maintain a pregnancy included having a desire that outweighed their perceived risk, using available data to guide their decision, planning for contingencies and knowing their beliefs about termination, plus having a trusted healthcare team, social support, and resources. Factors that led to insurmountable risk in subsequent pregnancies included desire having been fulfilled by the first pregnancy, compounding risk with age and additional pregnancies, new responsibility to an existing child, and reduced healthcare team and social support. CONCLUSIONS Understanding individuals' motivations and concerns, and how they weigh their decisions to become or remain pregnant, can help clinicians better support patients with adult CHD considering pregnancy. Clinician education on patient experiences is warranted.
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Affiliation(s)
- Kathleen M West
- Department of Health Systems and Population Health, University of Washington, Seattle, WA, USA
| | - Elizabeth Bayley
- Division of Cardiology, University of Washington, Seattle, WA, USA
| | - Jaimie Pechan
- Division of Cardiology, University of Washington, Seattle, WA, USA
| | - Ruth A Engelberg
- Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, USA
- Division of Pulmonary, Critical Care and Sleep Medicine, University of Washington, Seattle, WA, USA
| | - Catherine Albright
- Department of Obstetrics & Gynecology, University of Washington, Seattle, WA, USA
| | - Jonathan Buber
- Division of Cardiology, University of Washington, Seattle, WA, USA
| | - Jill M Steiner
- Division of Cardiology, University of Washington, Seattle, WA, USA
- Cambia Palliative Care Center of Excellence, University of Washington, Seattle, WA, USA
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Eli K, Lavis A, Castleman JS, Clift PF, Fox CE, Giles D, Grocott L, Harrison K, Hudsmith LE, Kaplan K, McDougall H, Powell C, Drury NE. Maternal mental health: a key area for future research among women with congenital heart disease. Open Heart 2023; 10:e002312. [PMID: 37827809 PMCID: PMC10582993 DOI: 10.1136/openhrt-2023-002312] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 06/23/2023] [Indexed: 10/14/2023] Open
Abstract
In this viewpoint, we respond to the recently published national priorities for research in congenital heart disease (CHD) among adults, established through the James Lind Alliance Priority Setting Partnership, with specific attention to priority 3 (mental health) and priority 5 (maternal health). Our recent policy impact project explored how maternal mental health is currently addressed in adult congenital heart disease (ACHD) services in the National Health Service, identified gaps and discussed possible ways forward. Our multidisciplinary discussion groups, which included women with lived experience of CHD and pregnancy, cardiology and obstetrics clinicians and medical anthropologists, found that while pregnancy and the postnatal period increase the mental health challenges faced by women with CHD, current services are not yet equipped to address them. Based on this work, we welcome the prioritisation of both mental health and maternal health in ACHD, and suggest that future research should focus on the overlaps between these two priority areas.
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Affiliation(s)
- Karin Eli
- Division of Health Sciences, Warwick Medical School, University of Warwick, Coventry, UK
| | - Anna Lavis
- Institute of Applied Health Research, University of Birmingham, Birmingham, UK
- Institute for Mental Health, University of Birmingham, Birmingham, UK
| | - James S Castleman
- Department of Obstetrics, Birmingham Women's Hospital, Birmingham, UK
| | - Paul F Clift
- Department of Adult Congenital Cardiology, Queen Elizabeth Hospital Birmingham, Birmingham, UK
- Institute of Cardiovascular Sciences, University of Birmingham, Birmingham, UK
| | - Caroline E Fox
- Department of Obstetrics, Birmingham Women's Hospital, Birmingham, UK
| | - Donna Giles
- Patient and Public Involvement (PPI) Group Member, Coventry, UK
| | - Laura Grocott
- Department of Adult Congenital Cardiology, Queen Elizabeth Hospital Birmingham, Birmingham, UK
| | - Kirsty Harrison
- Patient and Public Involvement (PPI) Group Member, Coventry, UK
| | - Lucy E Hudsmith
- Department of Adult Congenital Cardiology, Queen Elizabeth Hospital Birmingham, Birmingham, UK
| | | | | | - Charlene Powell
- Patient and Public Involvement (PPI) Group Member, Coventry, UK
| | - Nigel E Drury
- Institute of Cardiovascular Sciences, University of Birmingham, Birmingham, UK
- Paediatric Cardiac Surgery, Birmingham Children's Hospital, Birmingham, UK
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Exploring the lived experiences of women with congenital heart disease during pregnancy: A phenomenological study. Midwifery 2023; 119:103630. [PMID: 36804830 DOI: 10.1016/j.midw.2023.103630] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/12/2021] [Revised: 01/25/2023] [Accepted: 02/06/2023] [Indexed: 02/13/2023]
Abstract
OBJECTIVE Congenital heart diseases (CHDs) are the most common birth anomalies, and they embraced a wide range of defects ranging from mild defects to complex and life-threatening defects. Medical advancement improved children's survival, and more females are reaching childbearing age. The purpose of this study was to explore and describe the lived experience of Jordanian pregnant women with CHD during pregnancy. METHOD This study used a descriptive phenomenological design. Purposive sampling was used in recruiting 15 women from Jordan with CHD who had given birth to at least one live newborn. The study was conducted from October 2019 to April 2020. Data was collected from a public cardiac centre using face-to-face semi-structured interviews. Interviews were recorded and transcribed verbatim. Analysis was done using Colaizzi's method. FINDINGS Three themes were identified: Being a woman with CHD, being pregnant with CHD, and being a CHD patient and healthcare-seeking behaviour. The findings revealed that pregnancy experiences of women with CHD are usually associated with many difficulties, negative emotions, and challenges. CONCLUSION AND IMPLICATIONS FOR PRACTICE The findings indicated the need for increased awareness and the importance of social support amongst both Jordanian women with CHD and healthcare providers. Also, the study provides new information to healthcare providers and policymakers to better understand the lived experiences of pregnant with CHD from their perspectives as it was associated with many difficulties, negative emotions, and challenges.
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Freiberger A, Beckmann J, Freilinger S, Kaemmerer H, Huber M, Nagdyman N, Ewert P, Pieper L, Deppe C, Kuschel B, Andonian C. Psychosocial well-being in postpartum women with congenital heart disease. Cardiovasc Diagn Ther 2022; 12:389-399. [PMID: 36033219 PMCID: PMC9412213 DOI: 10.21037/cdt-22-213] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/28/2022] [Accepted: 07/21/2022] [Indexed: 11/06/2022]
Abstract
Background Improved treatment options for congenital heart disease (CHD) lead to a growing number of women with CHD at reproductive age. Due to physical and psychological burden, pregnancies in women with CHD often count for high-risk. Resulting emotional distress can adversely impact pregnancy, motherhood and fetal health. The present study aims to retrospectively investigate mental outcomes and indices of adjustment in women with CHD before, during and after pregnancy. The novel concept of illness identity is applied to explain how patients experience and integrate their CHD into their identities. Methods Patient-reported outcome measures on mental functioning and illness identity were assessed in a sample of 121 postpartum women with CHD [mean age: 42.7±9.2 (range, 27-81) years] at the German Heart Centre Munich between August and November 2021 in a cross-sectional design. Descriptive analyses, correlations and linear regression models were calculated. Results Retrospectively assessed prevalence of emotional distress before giving birth was high (47.0%) and peaked shortly after childbirth in terms of elevated symptoms of postpartum depression and trauma. During the course of maternity, emotional distress decreased significantly (24.1%, P<0.001). Overall, postpartum women demonstrated high scores in functional illness identity states (i.e., acceptance and enrichment) and low scores in dysfunctional states (i.e., rejection and engulfment). CHD severity was not directly associated with mental outcomes (P>0.05), whereas maternal cardiovascular risk, according to the WHO classification, was significantly associated with a higher prevalence of postpartum trauma (t=2.485, P=0.015). Conclusions Postpartum mental health problems, such as (postpartum) depression, anxiety, and posttraumatic stress can become a serious burden which might be detrimental to the mother's well-being and her infant's development. Present findings emphasise the urgent need for a holistic approach focusing on pregnant women with CHD starting at the prepartum stage to prevent adverse consequences and promote maternal well-being. Illness identity might become an important target construct for clinical practice as it may positively and enduringly influence mental well-being of pregnant women with CHD.
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Affiliation(s)
- Annika Freiberger
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Jürgen Beckmann
- Department of Sport and Health Sciences, Chair of Sport Psychology, Technical University, Munich, Germany.,School of Human Movement and Nutrition Sciences, University of Queensland, Brisbane, QLD, Australia.,Health Research Institute, University of Limerick, Limerick, Ireland
| | - Sebastian Freilinger
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Harald Kaemmerer
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Maximilian Huber
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Nicole Nagdyman
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Peter Ewert
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Lars Pieper
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany
| | - Charlotte Deppe
- Department of Obstetrics and Gynecology, University Hospital, LMU Munich, Munich, Germany
| | - Bettina Kuschel
- Department of Gynecology and Obstetrics, Klinikum Rechts der Isar Technical University Munich, Munich, Germany
| | - Caroline Andonian
- Department of Congenital Heart Disease and Pediatric Cardiology, German Heart Center, Technical University Munich, Munich, Germany.,Department of Sport and Health Sciences, Chair of Sport Psychology, Technical University, Munich, Germany
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Trenta AM, Belloni S, Ausili D, Caruso R, Arrigoni C, Russo S, Moro M, Vellone E, Dellafiore F. What is the lived experience of patients with left ventricular assist devices during the COVID-19 pandemic? A qualitative analysis. Eur J Cardiovasc Nurs 2021; 21:438-445. [PMID: 34741597 PMCID: PMC8689891 DOI: 10.1093/eurjcn/zvab097] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/16/2021] [Revised: 05/12/2021] [Accepted: 09/14/2021] [Indexed: 12/22/2022]
Abstract
Background During the COVID-19 outbreak, patients with left ventricular assist device (LVAD) faced several changes in their daily life. However, the effects of these changes on the patients’ lived experiences are not still investigated. Aims The current study explored the lived experience of people with left ventricular assist device (LVAD) during the COVID-19 pandemic. During the COVID-19 outbreak, people with LVADs faced several changes in their daily life. However, the effects of these changes on the patients’ lived experiences are not still investigated. Methods and results Qualitative data analysis was conducted employing the interpretative phenomenological analysis approach. We followed the Standards for Reporting Qualitative Research guidelines. Eight male participants with LVAD aged from 65 to 82 were interviewed. Overall, two main themes (‘Worsening of psychological distress’ and ‘Moving forward’) and eight sub-themes emerged from the qualitative analysis. Conclusions People with LVADs experienced feelings of worry and solitude related to the risk of being infected or not receiving adequate treatment due to changes in the healthcare system during the pandemic; however, they managed to move forward with their lives using different strategies for dealing with the difficult situation.
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Affiliation(s)
- Alessia Martina Trenta
- Heart Failure Unit, Cardiology Center Monzino IRCCS, Via Carlo Parea, 4, 20138, Milan, Italy.,Department of Medicine and Surgery, University of Milano-Bicocca, Piazza dell'Ateneo Nuovo, 1, 20126, Monza, Italy.,Department of Biomedicine and Prevention, University of Rome Tor Vergata, Via Cracovia, 50, 00133, Rome, Italy
| | - Silvia Belloni
- Educational and Research Unit, Humanitas Clinical and Research Center IRCCS, Via Alessandro Manzoni, 56, 20089, Rozzano (MI), Italy
| | - Davide Ausili
- Department of Medicine and Surgery, University of Milano-Bicocca, Piazza dell'Ateneo Nuovo, 1, 20126, Monza, Italy
| | - Rosario Caruso
- Health Professions Research and Development Unit, IRCCS Policlinico San Donato, Piazza Edmondo Malan, 2, 20097, San Donato Milanese (MI), Italy
| | - Cristina Arrigoni
- Department of Public Health, Experimental and Forensic Medicine, Section of Hygiene, University of Pavia, Viale Forlanini, 2, Pavia, Italy
| | - Sara Russo
- Department of Emergency Medicine, Humanitas Clinical and Research Center IRCCS, Via Alessandro Manzoni, 56, 20089, Rozzano (MI), Italy
| | - Massimo Moro
- Health Professions Management Unit, Cardiology Center Monzino IRCCS, Via Carlo Parea, 4, 20138, Milan, Italy
| | - Ercole Vellone
- Department of Biomedicine and Prevention, University of Rome Tor Vergata, Via Cracovia, 50, 00133, Rome, Italy
| | - Federica Dellafiore
- Department of Public Health, Experimental and Forensic Medicine, Section of Hygiene, University of Pavia, Viale Forlanini, 2, Pavia, Italy
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11
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Facchin F, Scarfone G, Tamanza G, Ravani S, Francini F, Peccatori FA, Di Loreto E, Dell'Acqua A, Saita E. "Lights and Shadows": An Interpretative Phenomenological Analysis of the Lived Experience of Being Diagnosed With Breast Cancer During Pregnancy. Front Psychol 2021; 12:620353. [PMID: 33868088 PMCID: PMC8049111 DOI: 10.3389/fpsyg.2021.620353] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/22/2020] [Accepted: 03/11/2021] [Indexed: 11/13/2022] Open
Abstract
Cancer diagnosed during pregnancy is a rare event. The most common type of malignancy diagnosed in pregnant women is breast cancer, whose incidence is expected to raise in the next future due to delayed childbirth, as well as to the increased occurrence of the disease at young age. Pregnant women diagnosed with breast cancer are exposed to multiple sources of stress, which may lead to poorer obstetric outcomes, such as preterm birth and low birth weight. In addition, pregnancy involves physiological changes in the breasts that may blur the signs of cancer, with delayed diagnosis and poor prognosis. However, the lived experience of these women was investigated in very few studies. Given this scenario, we conducted this qualitative study to describe and understand women’s subjective experience of being diagnosed with breast cancer during pregnancy. The study was conducted following the principles of Interpretative Phenomenological Analysis. Participants were five women with breast cancer diagnosed during pregnancy, purposefully recruited at a public hospital during medical visits and interviewed at treatment initiation. The interview transcripts were analyzed using thematic analysis. The textual analysis led to the identification of three main themes related to: (1) the emotional storm experienced after cancer diagnosis, and the importance of receiving appropriate information and being focused on treatment decisions; (2) physical changes and comparisons with healthy women, associated with feelings of sadness and inadequacy; (3) being positive, feeling free to disclose all kinds of emotions, religion and spirituality as sources of strength. The paradoxical coexistence of pregnancy and cancer represents a stressful experience for women and their loved ones. Adopting a systemic perspective may be important to understand the effects of such a complex condition, also considering its impact on healthcare workers.
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Affiliation(s)
- Federica Facchin
- Department of Psychology, Catholic University of the Sacred Heart, Milan, Italy
| | - Giovanna Scarfone
- Gynecology Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy
| | - Giancarlo Tamanza
- Department of Psychology, Catholic University of the Sacred Heart, Milan, Italy
| | - Silvia Ravani
- Faculty of Psychology, Catholic University of the Sacred Heart, Milan, Italy
| | - Federica Francini
- Faculty of Psychology, Catholic University of the Sacred Heart, Milan, Italy
| | - Fedro Alessandro Peccatori
- Fertility and Procreation Unit, Division of Gynecologic Oncology, European Institute of Oncology IRCCS, Milan, Italy
| | - Eugenia Di Loreto
- Gynecology Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy
| | - Andrea Dell'Acqua
- Gynecology Unit, Fondazione IRCCS Ca' Granda, Ospedale Maggiore Policlinico, Milan, Italy
| | - Emanuela Saita
- Department of Psychology, Catholic University of the Sacred Heart, Milan, Italy
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