Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery

Harvey, Kayla; Kovalesky, Andrea; Woods, Ronald K.; Loan, Lori A.

doi:10.1016/j.hrtlng.2013.08.009

Cited by 63 publications

(103 citation statements)

References 30 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…This is consistent with reports that parent stress levels are particularly high just before their child undergoes cardiac surgery. (12,(14)(15)(16)(17) Levels of stress in this study were found to be comparable to those of mothers of children with HIV, (42) but higher than those of mothers of children with cerebral palsy in South Africa. (43) Similarly, it has been found in developed countries that parents of children with CHD experience higher levels of stress than parents of children suffering from other chronic health conditions, and parents of healthy children.…”

Section: Discussionsupporting

confidence: 46%

“…This is similar to reports by several authors who found that parents of children with CHD continued to experience high levels of stress over the continuum of their child's cardiac care. (2,4,12,14,23,26) Although most parents show resilience in the face of the challenges caused by their child's CHD; it has been suggested that as many as 40% of parents are considered to be at risk of experiencing ongoing stress and psychological problems. (26) Parenting stress levels decreased significantly from baseline to both three-month and six-month post-cardiac surgery.…”

Section: Discussionmentioning

confidence: 99%

“…These challenges, or stressors, can relate to the child's illness and the child's specific characteristics, as well as to personal and socioeconomic factors. For example, parents tend to find the diagnosis of their child with CHD, (15) as well as the hospitalisation, (14,15) cardiac surgery and intensive care unit stay (12,(14)(15)(16)(17) to be extremely stressful. Moreover, some children with CHD may also exhibit excessive irritability and behavioural difficulties that make them more difficult to parent.…”

Section: Introductionmentioning

confidence: 99%

“…(2,7,23,24) Caring for a child with CHD also places considerable financial strain on families. (2,14,15,18,24) For many parents the chronic health problems faced by their child place them at a high risk of experiencing ongoing stress. (1,17,27) The effects of these ongoing stressors accumulate over time, and affect parents' ability to adapt, undermining their own health and wellbeing, as well as their family's functioning.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

Smith¹,

Potterton

Ntsiea

et al. 2017

SAHJ

View full text Add to dashboard Cite

show abstract

Section: Discussionsupporting

confidence: 46%

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

Smith¹,

Potterton

Ntsiea

et al. 2017

SAHJ

View full text Add to dashboard Cite

show abstract

“…Moreover, heavy medical expenses [32] and frequent hospitalizations [33], bring CHD adolescent patients and their family members to other types of complications, from the burden of the disease on the whole family [34], to issues related to the unknown future, treatment program or prognosis. For these reasons, the understanding of CHD parents' needs is crucial to face the diversity and complexity of adolescents with CHD, guiding the whole care delivery.…”

Section: Discussionmentioning

confidence: 99%

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

ore¹

2017

Arch Nursing Pract Care

View full text Add to dashboard Cite

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.

show abstract

Families under pressure: A qualitative study of stressors in families of children with congenital heart disease

et al. 2023

View full text Add to dashboard Cite

The objective of this study was to better understand the stressors in families of children with congenital heart disease (CHD) to assist with formulating targeted stress management plans for such families. A descriptive qualitative study was undertaken at a tertiary referral hospital in China. Following purposeful sampling, interviews were conducted with 21 parents of children with CHD regarding the stressors in their families. Following content analysis, 11 themes were generated from the data and categorised into six main domains: the initial stressor and associated hardships, normative transitions, prior strains, the consequences of family efforts to cope, intrafamily and social ambiguity, and sociocultural values. The 11 themes include confusion regarding the disease, hardships encountered during treatment, the heavy financial burden, the unusual growth track of the child due to the disease, normal events becoming abnormal for the family, impaired family functioning, family vulnerability, family resilience, family boundary ambiguity induced by role alteration, a lack of knowledge about community support and family stigma. Various and complex stressors exist for families of children with CHD. Medical personnel should fully evaluate the stressors and take targeted measures before implementing family stress management practices. It is also necessary to focus on the posttraumatic growth of families of children with CHD and strengthen resilience. Moreover, family boundary ambiguity and a lack of knowledge about community support should not be ignored, and further research is needed to explore these variables. Most importantly, policymakers and healthcare providers should adopt a range of strategies to address the stigma of being in a family of a child with CHD.

show abstract

Experiences of mothers of infants with congenital heart disease before, during, and after complex cardiac surgery

Cited by 63 publications

References 30 publications

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

Effect of cardiac surgery in young children with congenital heart disease on parenting stress in central South Africa: Initial outcomes

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

Families under pressure: A qualitative study of stressors in families of children with congenital heart disease

Contact Info

Product

Resources

About