Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Chiang, Yueh Tao; Chen, Chi-Wen; Su, Wen‐Jen; Wang, Jou‐Kou; Lu, Chun‐Wei; Li, Yuh Fen; Moons, Philip

doi:10.1111/jan.12546

Cited by 33 publications

(31 citation statements)

References 30 publications

(50 reference statements)

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“…Twelve out of 15 participants described experiencing negative mood and in some cases clinically diagnosed depression and suicidal thoughts as a result of their condition/s, and eight reported experiencing anxiety and fear for the future. This complements and expands on earlier findings with predominantly older adults and/or amongst individuals with specific individual LTCs . Nine out of 15 participants made comparisons between their former ‘well’/’healthy’ self and their current ‘ill’/‘sick’ self, with longing for their past self and grieving lost parts of their identity (although it is important to note that this sub‐theme is only applicable to young adults diagnosed from birth/infancy, perhaps excluding for example congenital illnesses such as cystic fibrosis, where there is no prior period of ‘wellness’ or perceived ‘normality’).…”

Section: Discussionsupporting

confidence: 63%

“…A few studies have been conducted with young adults (with chosen age ranges of young adulthood varying between 14 and 45). Studies have found that cystic fibrosis, congenital heart disease and diabetes are associated with anxiety, depression, fear and worry; and that young adults with various LTCs are statistically more likely to experience anxiety and/or depression than healthy participants (eg Ref …”

Section: Introductionmentioning

confidence: 99%

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The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

Wilson

Stock

2019

Health Expectations

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BackgroundIt has been suggested that the mental health impacts of living with long‐term conditions are greater in young adulthood compared to older adulthood, due to greater disruption to identity and routine life events.ObjectivesTo explore the impact of living with long‐term conditions in young adulthood on mental health and identity, and what helps living well with these conditions.MethodsFifteen in‐depth interviews with young adults with various conditions were conducted and analysed thematically.ResultsThemes related to the impacts on mental health and identity include the following: negative mood and depression; anxiety and fear for the future; and identity as ‘ill’/abnormal compared to former self and ‘normal’ others. Themes related to suggestions for addressing negative impacts include the following: promotion of positive thinking; support reaching acceptance with altered identity and limitations (through stages of denial, anger, depression, then acceptance); and more professional mental health support.DiscussionIn order to promote mental health and a positive sense of self/identity, young adults with long‐term conditions should be offered advice and support on positive thinking; the long and difficult process of reconstructing identity; and reaching acceptance. This is particularly important for young adults for whom the identity reconstruction process is more complex and psychologically damaging than for older adults, as this life stage is associated with health/vitality and illness represents a shift from a perceived normal trajectory to one that appears and feels abnormal.

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Section: Discussionsupporting

confidence: 63%

Section: Introductionmentioning

confidence: 99%

The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

Wilson

Stock

2019

Health Expectations

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“…Asking the adolescent to give a short summary in the end of the meeting can be one way to establish that. Inaccurate knowledge about the CHD might lead to unnecessary restrictions [48], avoidance of deeper relations [6] and uncertainty [2, 4, 5, 22]. The majority of the adolescents in our study said that they had general knowledge about their CHD; something they learned over the years in the paediatric setting.…”

Section: Discussionmentioning

confidence: 95%

“…Furthermore, several studies indicate that adolescents do not feel included and involved in the preparation before the transfer [13, 57, 58, 63], which also may increase the risk of loss of follow-up after transfer to adult care [6]. …”

Section: Introductionmentioning

confidence: 99%

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care

et al. 2017

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The aim of the study was to explore what adolescents with congenital heart disease (CHD) view as important in the preparation for the transfer to adult care. We performed interviews in four focus groups with adolescents (14–18 years old) at four university hospitals in Sweden. Data was analysed using qualitative content analysis. The analysis revealed one main category; Becoming a manager of the condition and four subcategories; Sufficient knowledge about the health, Be a participant in the care, Parental support, and Communicate with others about the health. The adolescents’ ages differentiated the discussion in the groups. The older adolescents seemed to have more interest in transition planning, information and transfer. The younger described more frustrations about communication and handling the disease. Conclusion: To become a manager of the CHD in daily life, the adolescents want disease specific knowledge, which should be communicated in a developmentally appropriate way. Adolescents want to participate and be involved in the transition process. They need support and guidance in how to communicate their CHD. Parental support is fundamental but it change over time. Moreover, peer-support is becoming more significant during the transition process. What is Known: • Transition during adolescence and transfer to adult care for adolescents with CHD is complex, and there is a shift in roles. • Adolescents often have poor knowledge and understanding about their heart condition and the consequences. What is New: • Adolescents call for disease specific information regarding health issues of importance for them in daily life. • Communicating the disease with other is a challenge- peer support from other adolescents with CHD could be a facilitator.

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“…In fact, the adolescence is a crucial phase for the formation of the personality [7], during which the CHD adolescents have to face with the consequences of their disease and the need to be adherent with their follow-up indications [10]. Moreover, during the transition into adulthood, CHD adolescents could be exposed to many psychological issues related to their development of self-identity, self-esteem and self-image [8] and they should learn about their disease, overcoming frustration and anxiety and developing self-care strategies [9]. For this reason, the recent clinical research focused to explore the peculiarity of the transition period synthesis.…”

Section: Introductionmentioning

confidence: 99%

The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis

ore¹

2017

Arch Nursing Pract Care

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Introduction: Congenital Heart Diseases (CHD) do not preclude the possibility to become adult due to the different innovations in medical and surgical treatments. The transition from childhood to adulthood is a complex process in the life of CHD adolescents, considering the consequences of their diseases and the need to be adherent with their follow-up indications. In this process, parents play an important role, being a landmark for their children, but the experiences of CHD adolescents' parents are little studied and the literature about their life experiences appears fragmented. Knowledge of life experience of CHD adolescents' parents is important to address a tailored and effi cient health-care delivery for the whole family. Therefore, the aim of this study is to synthesize qualitative papers of life experience of CHD adolescents' parents. Methods:A meta-synthesis study using Noblit and Hare's interpretative meta-ethnography approach was conducted. Databases searched included PubMed, CINAHL, PsycINFO and Google Schoolar and keywords used are "Congenital heart disease", "Parents", "Adolescents" and "life experience". The search process was performed in accordance with the PRISMA guidelines and only the qualitative papers in the last 20 years were included. Studies resulted by search process were critically appraised using the Critical Appraisal Skills Programme qualitative research appraisal tool. Results:The search yielded 386 potentially relevant studies for screening, and only six articles met all the inclusion criteria. In accordance with the seven phases suggested by Noblit and Hare, the papers were analyzed, discussed and a qualitative meta-synthesis was performed. The meta-synthesis results showed four main themes, exploring also four main contradictions that characterize the life experiences of CHD adolescents' parents: "fear and uncertainty of the future versus positive coping strategies"; "parents hyperresponsibility and overprotection versus adolescents' independence desire"; "desire to give support, but not to be supported"; "normality desire versus awareness to live with particular conditions". Conclusions:The role of the CHD adolescents' parents is diffi cult and they experience some contradictions. This study explore their life experiences in a preliminary way, but further analysis and studies are needed.

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Between invisible defects and visible impact: the life experiences of adolescents and young adults with congenital heart disease

Cited by 33 publications

References 30 publications

The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

The impact of living with long‐term conditions in young adulthood on mental health and identity: What can help?

Adolescents with congenital heart disease: their opinions about the preparation for transfer to adult care

The life experience of parents of Congenital Heart Disease adolescents: A meta-synthesis

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