Abstract：
Children with congenital heart disease are more likely to receive special educational services in schools and have an increased risk of mental health issues. We explored the lived experiences of parents caring for a child with heart disease and concurrent mental health issues in Denmark. Semi-structured interviews with ten parents (age 39-57 years) to these children (age 5-17 years) were analysed using interpretative phenomenological analysis. Three Group Experiential Themes (GETs) were generated from the analysis: The first GET, Parental roles and caring behaviours, described parental struggles of fulfilling their parenting role ideals and experiences with stigmatization of MHI. GET two, Parental reflections on their illness explanations, portrayed how parents utilize different illness explanations to make sense of their child\'s MHI. GET three, Differences in access to help and support, captured how the CHD affected overall access to mental health support. The results may inform various topics of importance for health professionals to address in their clinical encounters with these families.
Congenital heart disease is the most common congenital condition, affecting approximately 1% of newborns. Parents of these children often experience substantial psychological distress due to the fear of losing their child, the burden of hospital stays and surgeries, and concerns about their child’s future health. Additionally, children with congenital heart disease more often require special education services and face a higher risk of mental health issues. Parenting a child with mental health issues also presents specific challenges, as parents may find it hard to access proper help for their child, may feel stigmatised or have feelings of blame and guilt. We explored the lived experiences of parents raising a child with both heart disease and mental health issues in Denmark by interviewing ten parents (aged 39–57) of children (aged 5–17). Through qualitative analysis, we identified 3 themes of importance for these parents: (1) Parental roles and caring behaviours: Parents struggled with meeting their own parenting ideals and dealing with the stigma of mental health issues. (2) Parental reflections on their illness explanations: Understanding the child’s mental health issues was important. Parents often perceived a connection between their child’s heart disease and mental health issues, influenced by biological, psychological, or social factors. (3) Differences in access to help and support: Parents described how their child’s heart disease impacted their ability to obtain mental health support. Some felt that the heart disease delayed access to mental health support, while others leveraged the physical condition to secure mental health support. Overall, these findings might assist health professionals in providing better support to these families in clinical settings.
Congenital heart disease is the most common congenital condition, affecting approximately 1% of newborns. Parents of these children often experience substantial psychological distress due to the fear of losing their child, the burden of hospital stays and surgeries, and concerns about their child’s future health. Additionally, children with congenital heart disease more often require special education services and face a higher risk of mental health issues. Parenting a child with mental health issues also presents specific challenges, as parents may find it hard to access proper help for their child, may feel stigmatised or have feelings of blame and guilt. We explored the lived experiences of parents raising a child with both heart disease and mental health issues in Denmark by interviewing ten parents (aged 39–57) of children (aged 5–17). Through qualitative analysis, we identified 3 themes of importance for these parents: (1) Parental roles and caring behaviours: Parents struggled with meeting their own parenting ideals and dealing with the stigma of mental health issues. (2) Parental reflections on their illness explanations: Understanding the child’s mental health issues was important. Parents often perceived a connection between their child’s heart disease and mental health issues, influenced by biological, psychological, or social factors. (3) Differences in access to help and support: Parents described how their child’s heart disease impacted their ability to obtain mental health support. Some felt that the heart disease delayed access to mental health support, while others leveraged the physical condition to secure mental health support. Overall, these findings might assist health professionals in providing better support to these families in clinical settings.
摘要：
患有先天性心脏病的儿童更有可能在学校接受特殊教育服务，并且患心理健康问题的风险增加。我们探索了父母在丹麦照顾患有心脏病和并发心理健康问题的孩子的生活经历。使用解释性现象学分析对10位父母（39-57岁）对这些孩子（5-17岁）的半结构化访谈进行了分析。从分析中生成了三组体验主题(GET)：第一个GET，父母的角色和关怀行为，描述了父母为实现其育儿角色的理想和经历而进行的斗争，并对MHI进行了污名化。得到两个，父母对他们疾病解释的反思，描绘了父母如何利用不同的疾病解释来理解他们孩子的MHI。得到三个，获得帮助和支持方面的差异，捕获CHD如何影响获得心理健康支持的整体机会。结果可能会为卫生专业人员在与这些家庭的临床接触中解决各种重要主题。
先天性心脏病是最常见的先天性疾病，影响大约1%的新生儿。这些孩子的父母经常由于害怕失去孩子而经历巨大的心理困扰，住院和手术的负担，以及对孩子未来健康的担忧。此外,患有先天性心脏病的儿童更经常需要特殊教育服务，面临更高的心理健康问题风险。养育有心理健康问题的孩子也面临着具体的挑战，因为父母可能会发现很难为他们的孩子获得适当的帮助，可能会感到污名化或有责备和负罪感。我们通过采访10名儿童（5-17岁）的父母（39-57岁），探索了父母在丹麦抚养患有心脏病和心理健康问题的孩子的生活经历。通过定性分析,我们确定了对这些父母重要的三个主题：（1）父母的角色和关怀行为：父母在满足自己的育儿理想和处理心理健康问题的耻辱方面苦苦挣扎。（2）父母对他们的疾病解释的反思：了解孩子的心理健康问题很重要。父母经常认为孩子的心脏病和心理健康问题之间存在联系，受生物的影响，心理,或社会因素。（3）获得帮助和支持的差异：父母描述了孩子的心脏病如何影响他们获得心理健康支持的能力。一些人认为心脏病延迟了获得心理健康支持的机会，而其他人则利用身体状况来获得心理健康支持。总的来说,这些发现可能有助于卫生专业人员在临床环境中为这些家庭提供更好的支持.
先天性心脏病是最常见的先天性疾病，影响大约1%的新生儿。这些孩子的父母经常由于害怕失去孩子而经历巨大的心理困扰，住院和手术的负担，以及对孩子未来健康的担忧。此外,患有先天性心脏病的儿童更经常需要特殊教育服务，面临更高的心理健康问题风险。养育有心理健康问题的孩子也面临着具体的挑战，因为父母可能会发现很难为他们的孩子获得适当的帮助，可能会感到污名化或有责备和负罪感。我们通过采访10名儿童（5-17岁）的父母（39-57岁），探索了父母在丹麦抚养患有心脏病和心理健康问题的孩子的生活经历。通过定性分析,我们确定了对这些父母重要的三个主题：（1）父母的角色和关怀行为：父母在满足自己的育儿理想和处理心理健康问题的耻辱方面苦苦挣扎。（2）父母对他们的疾病解释的反思：了解孩子的心理健康问题很重要。父母经常认为孩子的心脏病和心理健康问题之间存在联系，受生物的影响，心理,或社会因素。（3）获得帮助和支持的差异：父母描述了孩子的心脏病如何影响他们获得心理健康支持的能力。一些人认为心脏病延迟了获得心理健康支持的机会，而其他人则利用身体状况来获得心理健康支持。总的来说,这些发现可能有助于卫生专业人员在临床环境中为这些家庭提供更好的支持.
