Enhancing Parental Coping with a Child’s Heart Condition: A Co-production Pilot Study

Becoming a Teenager after Early Surgical Ventricular Septal Defect (VSD) Repair: Longitudinal Biopsychological Data on Mental Health and Maternal Involvement

“…A CHD does not only affect the child. Besides the impacts of CHD on children’s physical development and later psychological adjustment, the diagnosis, medical treatments, and surgery have a major influence on parents as well [ 38 , 39 ]. Many parents experience tremendous emotional distress (e.g., shock, sadness, guilt); mothers, who are often the primary caregiver, describe immense suffering and anxiety, as well as the burden of caring for a child with CHD [ 40 , 41 , 42 ].…”

Systematic Review of Instruments Assessing Psychosocial Adaptation and Outcomes Among Families of Children With Congenital Heart Disease

“…Thirty-nine self-report instruments were used across 61 (57%) distinct samples ( Alkan et al, 2017 ; Awaad & Darahim, 2015 ; Berant et al, 2001 ; Bevilacqua et al, 2013 ; Bishop et al, 2019 ; Blue et al, 2015 ; Bratt et al, 2019 ; Brosig et al, 2007b ; Callahan et al, 2019 ; Campbell et al, 1995 ; 1992 ; Cantwell-Bartl & Tibballs, 2017 ; Chien et al, 2021 ; Cohn, 1996 ; Coşkuntürk and Gözen, 2018 ; Davis et al, 1998 ; Denniss et al, 2019 ; Diffin et al, 2016 ; Doherty et al, 2009 ; Dulfer et al, 2015 ; Fischer et al, 2012 ; Franich-Ray et al, 2013 ; Gaskin et al, 2021 ; Guan et al, 2014 ; Hancock et al, 2018 ; Helfricht et al, 2008 ; Hoehn et al, 2004 ; Hunt et al, 2020 ; Jackson et al, 2020 ; Jordan et al, 2014 ; Kiliçarskan-Törüner et al, 2012 ; Kumar et al, 2019 ; Landolt et al, 2011 ; Lawoko & Soares, 2006 ; Li et al, 2018 ; Lisanti et al, 2017 , 2021a , b ; López et al, 2016 ; McCusker et al, 2010 ; 2012 ; McKechnie et al, 2016 ; Medoff-Cooper et al, 2020 ; Menahem et al, 2008 ; Miller et al, 2021 ; Mussatto et al, 2021 ; Pinto et al, 2016 ; Radlo ff, 1977; Rahimianfar et al, 2015 ; …”

“…Ten instruments used to evaluate stress and strain experienced in the parenting role, including in the context of illness were identified across 30 (28%) distinct samples. Seven instruments of parenting stress ( Abidin, 2012 ; Barsella et al, 2021 ; Haverman et al, 2013 ; Östberg et al, 1997 ; Streisand et al, 2001 ; Jantien Vrijmoet-Wiersma et al, 2010 ) were identified across 27 distinct samples ( Barsella et al, 2021 ; Bishop et al, 2019 ; Brosig et al, 2007a ; Carey et al, 2002 ; Caris et al, 2016 ; Chaisom et al, 2010 ; Chang et al, 2020 ; Choi & Lee, 2021 ; De Stasio et al, 2019 ; Ezzat et al, 2016 ; Goldberg et al, 1991 ; Golfenshtein et al, 2017 ; Jackson et al 2020 ; Kaugars et al, 2018 ; Lee et al, 2007 ; Majnemer et al, 2006 ; Medoff-Cooper et al, 2020 ; Mörelius et al, 2002 ; Poh et al, 2020 ; Mussatto et al, 2021 ; Re et al, 2018 ; Sarajuuri et al, 2012 ; Torowicz et al, 2010 ; Uzark & Jones, 2003 ; van der Mheen et al, 2019 ; Visconti et al, 2002 ; Jantien Vrijmoet -Wiersma et al, 2009 ). Most frequently used were the Parenting Stress Index ( Abidin, 2012 ) and the Parenting Stress-Short Form ( Abidin, 2012 ) across 8 and 12 studies, respectively, including Dutch, Korean, Arabic, Chinese, and Thai translations of the Parenting Stress Index-Short Form.…”

“…COSMIN criteria were applied to three instruments, with positive ratings for content validity scored for all three, and internal consistency of the Parenting Stress Index and Parenting Stress Index-Short Form. Reliability data were reported for five instruments in nine CHD studies ( Bishop et al, 2019 ; Chang et al, 2020 ; Choi & Lee, 2021 ; Ezzat et al, 2016 ; Jackson et al, 2020 ; Lee et al, 2007 ; Svavarsdottir & McCubbin, 1996 ; Torowicz et al, 2010 ; Jantien Vrijmoet-Wiersma et al, 2009 ( α = .73–.96).…”

“…The full, modified version, and subscale-only usage of 12 instruments of coping ( Carver, 1997 ; Carver et al, 1989 ; Chesney et al, 2003 ; Endler & Parker, 1994 ; Folkman & Lazarus, 1985 ; Frydenberg & Lewis, 2014 ; Jackson et al, 2017 ; McCubbin et al, 1981 ; Murphy et al, 2017 ; Schreurs, 1993 ; Sira et al, 2014 ) were identified across 19 (17%) studies and 18 samples ( Ahn et al, 2014 ; Berant et al, 2001 , 2003 ; Choi & Lee, 2021 ; Davis 1998 ; Diffin et al, 2016 ; Doherty et al, 2009 ; Hancock et al, 2018 ; Jackson et al, 2020 ; Miller et al, 2021 ; McCusker et al, 2010 ; Mussatto et al, 2021 ; Poh et al 2020 ; Roberts et al, 2021 ; Rychik et al, 2013 ; Sira et al, 2014 ; Spijkerboer et al 2007 ; Svavarsdottir & McCubbin, 1996 ; Utens et al, 2000 ). The most frequently used instrument was the Coping Health Inventory for Parents ( McCubbin et al, 1981 ) in five studies across the USA and Singapore, with two studies ( Jackson et al, 2020 ; Sira et al, 2014 ) using multiple coping instruments. The CHD condition-specific Responses to Stress Questionnaire ( Jackson et al, 2017 ) was identified in one U.S.-based study ( Roberts et al, 2021 ).…”