Well-Being and Agency in Parents of Children With Congenital Heart Disease

López, Rodríguez; Frangini, Patricia; Ramírez, Muriel; Valenzuela, Patricio; Terrazas, Claudia; Pérez, Carolina Alejandra; Borchert, Evelyn; Trachsel, Manuel

doi:10.1177/2150135115623284

Cited by 11 publications

(15 citation statements)

References 29 publications

(43 reference statements)

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“…On the other hand, they had a similar level of agency (a concept from developmental studies defined as “the ability to act on behalf of what you value and have a reason to value”) (23). Their children’s surgery significantly decreased parental feelings of hopelessness, but had no influence on their well-being or agency.…”

Section: Parental Mental Health Problems After Child’s Cardiac Surgerymentioning

confidence: 99%

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Mental Health Problems in Parents of Children with Congenital Heart Disease

2017

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This review will provide a concise description of mental health problems in parents of children with a (non-syndromic) congenital heart disease (CHD) during different stressful periods. Predictors of these problems and also implications for clinical practice will be mentioned. Having a child with CHD can be very stressful for parents, who have to face overwhelming emotions and also extra physical, financial, and other practical challenges. Parental distress has been reported in 30–80% of parents and appears not to be related to severity of CHD. Parental mental health, parenting, the parent–child relationship, and parental quality of life can all be affected. Parents, and especially mothers, are at risk of psychological distress, anxiety, depression, somatization, hopelessness, and posttraumatic stress symptoms, which in turn may influence mother’s responsiveness. In the long term, the majority of parents adapt successfully to living with a child with CHD, but approximately 40% report a need for psychosocial care. These families may be helped by early psychosocial interventions to alleviate stress and reduce children’s emotional and behavioral problems. A holistic approach to early psychosocial interventions should aim at improving coping and enhance parenting. During routine medical checkups, medical professionals should ask about parental stress, family functioning, and psychosocial functioning of the child and, when needed, adequate psychosocial care should be provided.

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Section: Parental Mental Health Problems After Child’s Cardiac Surgerymentioning

confidence: 99%

“…Limitations of reviewed studies include, e.g., small sample size or use of non-standardized instruments (23), underestimation of ASD (21), assessment of mental health symptoms “only,” and not of specific psychiatric diagnoses (13–15, 17, 20, 21, 23). …”

Section: Parental Mental Health Problems After Child’s Cardiac Surgerymentioning

confidence: 99%

Mental Health Problems in Parents of Children with Congenital Heart Disease

2017

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“…These socioeconomic data were analyzed independently and also transformed into a dichotomous variable (poverty) following the multidimensional poverty approach proposed by Aplablaza for the Chilean population [32]. This account has been used in a similar study [33].…”

Section: Plos Onementioning

confidence: 99%

Poverty, quality of life and psychological wellbeing in adults with congenital heart disease in Chile

et al. 2020

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The objective of this study was to assess the quality of life and psychological wellbeing of adults with congenital heart disease (CHD) in Chile, and to identify other associated factors. The study enrolled 68 patients aged between 18 and 72 (median 29), 35 being females. They completed a questionnaire, which included a quality of life assessment tool (the Medical Outcome Study 36-Item Short Form Health Survey), a number of psychological scales (the General Health Questionnaire, the Basic Psychological Needs Scales and the Beck Hopelessness Scale), a socioeconomic survey, and some clinical data. CHD patients reported worse scores in those scales assessing physical dimensions of quality of life (physical function (70.5), physical role functioning (64), vitality (65.3)), and general quality of life (58.6), than in emotional or social dimensions. Female gender was associated with lower scores in physical function (59.12 versus 82.66; p<0.01) and physical role functioning (53.68 versus 75; p<0.05); poverty was associated with worse results in physical function (61.92 versus 82.96; p<0.01), role physical (53.21 versus 79.63; p<0.01), vitality (60.89 versus 71.67; p<0.05), social role functioning (70.19 versus 82.87; p<0.05) and bodily pain (65.77 versus 81.2; p<0.05). Furthermore, we found that psychological scales had an association with quality of life, but clinical variables did not show significant correlations to any dimension. Poverty has an impact on the quality of life of CHD patients. This population only has a decrease in the quality of life physical dimensions, suggesting that quality of life depends on many different factors.

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“…Lower scores on mental well-being, as measured by the General Health Questionnaire, were found to be significantly correlated with poverty in parents with a child undergoing cardiac surgery. 39 Another study examined parental stress levels in a paediatric cardiac ICU and step-down unit and found that parental stress scores were negatively correlated with poverty level and that foreign-born mothers had significantly higher stress during their child's hospitalisation. 16 They concluded that poverty, place of birth, and citizenship may all play a role in predicting parental stress levels.…”

Section: Socio-economic Status and Social Statusmentioning

confidence: 99%

Parental stress and resilience in CHD: a new frontier for health disparities research

Lisanti

2018

Cardiol Young

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Parental stress is a universal experience for parents who have children diagnosed with CHD and has been studied within the context of the child's illness, but not through a broader health disparity lens. This paper provides a thorough synthesis of the current literature on parental stress addressing disparities in parents of children with CHD. Several theories and models from within this literature are described and a new comprehensive framework, the Parental Stress and Resilience in CHD Model, is presented. Future research and clinical implications are discussed.

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Well-Being and Agency in Parents of Children With Congenital Heart Disease

Cited by 11 publications

References 29 publications

Mental Health Problems in Parents of Children with Congenital Heart Disease

Mental Health Problems in Parents of Children with Congenital Heart Disease

Poverty, quality of life and psychological wellbeing in adults with congenital heart disease in Chile

Parental stress and resilience in CHD: a new frontier for health disparities research

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