Needs and experiences of adolescents with congenital heart disease and parents in the transitional process: A qualitative study

2021 ◽  
Vol 61 ◽  
pp. 90-95
Author(s):  
Michèle de Hosson ◽  
Peter J.J. Goossens ◽  
Julie De Backer ◽  
Daniël De Wolf ◽  
Ann Van Hecke
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Congenital Heart ◽  
Transitional Process

scholarly journals Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elena Mitteregger ◽  
Martina Wehrli ◽  
Manuela Theiler ◽  
Jana Logoteta ◽  
Irina Nast ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Motor Development ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
First Year ◽  
First Year Of Life ◽  
Neuromotor Development

Abstract Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

scholarly journals Uncertainty of Prenatally Diagnosed Congenital Heart Disease: A Qualitative Study

2020 ◽  
Vol 3 (5) ◽  
pp. e204082 ◽  
Author(s):  
Kelly W. Harris ◽  
Kathleen M. Brelsford ◽  
Ann Kavanaugh-McHugh ◽  
Ellen Wright Clayton
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Congenital Heart

scholarly journals Experiences of Mothers Facing the Prognosis of Their Children with Complex Congenital Heart Disease

2020 ◽  
Vol 17 (19) ◽  
pp. 7134
Author(s):  
Sunhee Lee ◽  
Jeong-Ah Ahn
Keyword(s):  
Congenital Heart Disease ◽  
Content Analysis ◽  
Heart Disease ◽  
Qualitative Study ◽  
Congenital Heart ◽  
Tertiary Hospital ◽  
Complex Congenital Heart Disease ◽  
Face To Face ◽  
Psychological Difficulties ◽  
Expressed Emotions

Mothers of children with complex congenital heart disease face unique challenges and emotional burdens, while their children go through physical and psychological difficulties during disease progression. In this study, we aimed to explore the in-depth experiences and feelings of mothers facing the prognosis of their children with complex congenital heart disease that was surgically corrected. This is a descriptive qualitative study. We conducted semi-structured, face-to-face interviews with 12 mothers of children with complex congenital heart disease at a tertiary hospital in Seoul, Korea. The interview data were analyzed by content analysis. Participants were mothers aged between 40–58 years whose children were diagnosed with complex congenital heart disease which was surgically corrected. Based on the content analysis, the mothers’ experiences and feelings were categorized as immense suffering and adapting to a new life. Under the main categories, the concepts included feeling of abandonment, anxiety with potentially losing their children, having hope, seeking reassurance, being encouraged, and trying to embrace the situation. Mothers who cared for their children with complex congenital heart disease expressed emotions that changed sequentially alongside physical and psychosocial changes in the children. The results of this study are valuable for understanding the experiences and emotions of mothers facing the prognosis of their children with complex congenital heart disease in order to aid in the development of programs that support these mothers.

"What I Wish You Knew": Social Barriers Toward Physical Activity in Youth With Congenital Heart Disease (CHD)

2011 ◽  
Vol 28 (1) ◽  
pp. 56-77 ◽  
Author(s):  
Fiona Moola ◽  
Caroline Fusco ◽  
Joel A. Kirsh
Keyword(s):  
Physical Activity ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Physical Education ◽  
Qualitative Study ◽  
Congenital Heart ◽  
Main Theme ◽  
Social Barriers ◽  
Psychological Barriers ◽  
The Social

Despite the benefits of physical activity for youth with congenital heart disease (CHD), most patients are inactive. Although literature has addressed medical and psychological barriers to participation, little is known about the social barriers that youth encounter. This qualitative study explored sociocultural barriers to physical activity from the perspective of 17 youth with CHD. The main theme, “what I wish you knew,” was related to all other themes-youths’ efforts to resolve “disclosure dilemmas,” the barriers they encounter during physical education, and their struggle to understand themselves as normal. The participants’ narratives illuminate the centrality of their sociocultural world to physical activity. The findings call on researchers and educators to attend to the social and cultural environments where these youth live and play.

scholarly journals What was the impact of the first wave of COVID-19 on the delivery of care to children and adults with congenital heart disease? A qualitative study using online forums

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e049006
Author(s):  
Jo Wray ◽  
Christina Pagel ◽  
Adrian H Chester ◽  
Fiona Kennedy ◽  
Sonya Crowe
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Service Delivery ◽  
Congenital Heart ◽  
Healthcare Providers ◽  
Discussion Forums ◽  
Related Factors ◽  
Delivery Of Care ◽  
The Impact

ObjectivesGlobally, healthcare systems have been stretched to the limit by the COVID-19 pandemic. Significant changes have had to be made to the way in which non-COVID-19-related care has been delivered. Our objective was to understand, from the perspective of patients with a chronic, life-long condition (congenital heart disease, CHD) and their parents/carers, the impact of COVID-19 on the delivery of care, how changes were communicated and whether healthcare providers should do anything differently in a subsequent wave of COVID-19 infections.Design and settingQualitative study involving a series of asynchronous discussion forums set up and moderated by three patient charities via their Facebook pages.ParticipantsPatients with CHD and parents/carers of patients with CHD.Main outcome measuresQualitative responses to questions posted on the discussion forums.ResultsThe forums ran over a 6-week period and involved 109 participants. Following thematic analysis, we identified three themes and 10 subthemes related to individual condition-related factors, patient-related factors and health professional/centre factors that may have influenced how patients and parents/carers experienced changes to service delivery as a result of COVID-19. Specifically, respondents reported high levels of disruption to the delivery of care, inconsistent advice and messaging and variable communication from health professionals, with examples of both excellent and very poor experiences of care reported. Uncertainty about follow-up and factors related to the complexity and stability of their condition contributed to anxiety and stress.ConclusionsThe importance of clear, consistent communication cannot be over-estimated. Our findings, while collected in relation to patients with CHD, are not necessarily specific to this population and we believe that they reflect the experiences of many thousands of people with life-long conditions in the UK. Recommendations related to communication, service delivery and support during the pandemic may improve patients’ experience of care and, potentially, their outcomes.

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