Relationship Between Types of Social Support, Coping Strategies and Psychological Distress in Individuals Living with Congenital Heart Disease

Objective: This study was conducted to evaluate the relationship between hopelessness and perceived social support levels of parents with children with congenital heart disease (CHD). Material and Methods: This cross-sectional study was conducted with parents of children who underwent surgery for CHD, and data were collected from 100 parents who agreed to participate in the study. A descriptive information form for the sociodemographic characteristics of the parents, “Beck Hopelessness Scale (BHS)” and “Multidimensional Scale of Perceived Social Support (MSPSS)” were used to collect the data. Data were analysed using descriptive statistics and Spearman’s correlation tests. Results: The mean score of the hopelessness level of the parents participating in the study was 6.15±4.23, and the mean perceived general social support score was 69.55±15.47. There was a significant negative correlation between the hopelessness levels of mothers and social support (SS) received from the family, from significant others, and general SS scores. There was a significant positive correlation between the hopelessness levels of the mothers and the SS level received from the family (p<0.05). Conclusion: In this study, the parents of children with CHD have low levels of hopelessness and perceived SS levels are high. Moreover, the relationship between hopelessness and perceived SS levels varies according to the sex of the parents. In our study, the SS level of mothers had a higher effect on the hopelessness level. It is recommended that the SS levels of the parents of children with CHD should be increased to help them cope with hopelessness.

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Psychological Distress in Children with Surgically Corrected Congenital Heart Disease

Journal of Pediatrics Perinatology and Child Health ◽

10.26502/jppch.74050040 ◽

2020 ◽

Vol 04 (02) ◽

Author(s):

Amalia Fagarasan, ◽

Flavia-Cristina Al-Akel, ◽

Andreea Cerghit-Paler, ◽

Brad Laura, ◽

Liliana Gozar

Keyword(s):

Congenital Heart Disease ◽

Heart Disease ◽

Psychological Distress ◽

Congenital Heart

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Social Support among Parents of Children with Congenital Heart Disease, Parents of Children with Other Diseases and Parents of Healthy Children

Scandinavian Journal of Occupational Therapy ◽

10.1080/11038120310016779 ◽

2003 ◽

Vol 10 (4) ◽

pp. 177-187 ◽

Cited By ~ 11

Author(s):

S. Lawoko ◽

J.J.F. Soares

Keyword(s):

Social Support ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Healthy Children

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Quality of life of patients with congenital heart diseases

Cardiology in the Young ◽

10.1017/s1047951111000576 ◽

2011 ◽

Vol 21 (6) ◽

pp. 670-676 ◽

Cited By ~ 26

Author(s):

Ana M. Silva ◽

Cláudia Vaz ◽

Maria E. G. Areias ◽

Daniela Vieira ◽

Cidália Proença ◽

...

Keyword(s):

Quality Of Life ◽

Social Support ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Negative Impact ◽

Heart Diseases ◽

Emotional Adjustment ◽

Perception Of Quality

AbstractObjectivesTo assess the perception of the quality of life of adolescents and young adults with congenital heart disease and to examine the variables that have a negative impact on it and that add a resilience effect.MethodsA total of 22 male and 18 female patients, aged 12–26 years, of whom 27 were admitted to surgery and 13 were not, participated in this study. All patients had complete medical records and were interviewed once; demographic and clinical data were collected, and patients filled a questionnaire on quality of life, the WHOQOL-BREF, and underwent an interview on social support, educational style, self-image, functional limitations, and emotional adjustment.Results/ConclusionsOur patients showed a better perception of quality of life than did the general population, on the basis of psychological, social relationship and environment scales. Older patients hold a better perception of quality of life on the psychological scale. Cyanosis did not show any significant impact over perception of quality of life decay; however, the number of surgical procedures and the persistence of moderate-to-severe residual injuries had considerable detrimental effect. Social support had an impact on increasing resilience, promoting adjustment to illness. Several factors may play a role in adjustment to congenital heart disease, either improving the perception of quality of life or worsening it. We may conclude that some buffer variables on congenital heart disease may play roles in increasing the perception of quality of life of patients during their lifetime, social support probably explaining why the perception of quality of life is better than in the normal population. The number of surgeries and the moderate-to-severe residual injuries, however, reverted that effect.

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Mental sequelae of the Covid-19 pandemic: Well-being one year into the crisis in children with and without complex medical histories and their parents

10.1101/2021.12.05.21267236 ◽

2021 ◽

Author(s):

Melanie Ehrler ◽

Cornelia F. Hagmann ◽

Oliver Kretschmar ◽

Markus A. Landolt ◽

Beatrice Latal ◽

...

Keyword(s):

Social Support ◽

Congenital Heart Disease ◽

Heart Disease ◽

Congenital Heart ◽

Well Being ◽

Complex Congenital Heart Disease ◽

Typically Developing ◽

Very Preterm ◽

Medical Histories ◽

One Year

AbstractObjectivesTo understand the long-term mental sequelae for families over the course of the COVID-19 pandemic, the well-being of children with and without complex medical histories and their parents was investigated longitudinally.MethodsWell-being of 200 school-aged children (73 typically-developing, 46 born very preterm, 73 with complex congenital heart disease) and 175 of their parents was assessed prior to and during the first (April–May 2020), second (October–November 2020), and third waves (April–May 2021) of the pandemic with standardized questionnaires. Social and COVID-19-specific determinants were investigated as predictors of impaired well-being.ResultsChild proxy-reported well-being was lower than before the pandemic during the first (P<0.001) and third waves (P=0.01) but not the second (P=0.13). Child self-reported well-being was not lower during the pandemic (all P>0.10). Parent well-being dropped during the first wave (P<0.001) and remained low during the first year (P<0.01). One year into the pandemic, 18/25% of children (self-/proxy-report) and 27% of parents scored below the normal range compared to 11%/10%, and 16%, respectively, before the pandemic. Parents of typically-developing children reported lower well-being than parents of children born very preterm (P=0.006) or with a complex congenital heart disease (P=0.03). Child and parent well-being was lower in families with sparse social support (P<0.001) and poor family functioning (P<0.01).ConclusionThe pandemic continues to impact family well-being one year after its outbreak. Families with sparse social support and poor family functioning are particularly at risk for compromised well-being and support should be provided to them.

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