Literature DB >> 28889827

Multidisciplinary family-centred psychosocial care for patients with CHD: consensus recommendations from the AEPC Psychosocial Working Group.

Elisabeth M W J Utens1, Edward Callus2, Eveline M Levert1, Katya De Groote3, Frank Casey4.   

Abstract

Because of the enormous advances in the medical treatment of CHD, the long-term survival of patients suffering from this disease has increased significantly. Currently, about 90% of patients reach adulthood, which entails many new challenges both for patients and their families and for healthcare professionals. The main objective of family-centred psychosocial care is to strengthen the emotional resilience of chronically ill patients and their families by adopting a holistic approach. During the biannual meeting of the psychosocial working group in 2012, participants expressed the need for general European guidelines. The present recommendations were written to support medical staff and psychosocial healthcare professionals to provide the best care for children and adolescents with CHD as well as for their families. This article describes in detail how the integrated family-centred psychological care modules work, involving different healthcare specialists, including a paediatric/congenital cardiologist or a general paediatrician. The different clinical implications and specific needs have been taken into account and recommendations have been provided on the following: structured follow-up screening; identification of stressful periods related to cardiac surgery or invasive medical procedures; evidence-based, disease-specific, and family-oriented psychosocial interventions; and interactive media links to medical and psychosocial information.

Entities:  

Keywords:  CHD; children; parents; psychosocial; recommendations

Mesh:

Year:  2017        PMID: 28889827     DOI: 10.1017/S1047951117001378

Source DB:  PubMed          Journal:  Cardiol Young        ISSN: 1047-9511            Impact factor:   1.093


  10 in total

1.  "There's no acknowledgement of what this does to people": A qualitative exploration of mental health among parents of children with critical congenital heart defects.

Authors:  Sarah E Woolf-King; Emily Arnold; Sandra Weiss; David Teitel
Journal:  J Clin Nurs       Date:  2018-03-13       Impact factor: 3.036

2.  Parent mental health and family functioning following diagnosis of CHD: a research agenda and recommendations from the Cardiac Neurodevelopmental Outcome Collaborative.

Authors:  Erica Sood; Amy Jo Lisanti; Sarah E Woolf-King; Jo Wray; Nadine Kasparian; Emily Jackson; Mary R Gregory; Keila N Lopez; Bradley S Marino; Trent Neely; Amy Randall; Sinai C Zyblewski; Cheryl L Brosig
Journal:  Cardiol Young       Date:  2021-06-04       Impact factor: 1.093

3.  Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease.

Authors:  Melanie K Franklin; Allison Karpyn; Jennifer Christofferson; Linda G McWhorter; Abigail C Demianczyk; Cheryl L Brosig; Emily A Jackson; Stacey Lihn; Sinai C Zyblewski; Anne E Kazak; Erica Sood
Journal:  J Child Health Care       Date:  2021-12-08       Impact factor: 1.896

4.  Home care experience and nursing needs of caregivers of children undergoing congenital heart disease operations: A qualitative descriptive study.

Authors:  Zhi Hong Ni; Hai Tao Lv; Sheng Ding; Wen Ying Yao
Journal:  PLoS One       Date:  2019-03-14       Impact factor: 3.240

5.  Health-related quality of life in children with congenital heart disease aged 5 to 7 years: a multicentre controlled cross-sectional study.

Authors:  Hamouda Abassi; Helena Huguet; Marie-Christine Picot; Marie Vincenti; Sophie Guillaumont; Annie Auer; Oscar Werner; Gregoire De La Villeon; Kathleen Lavastre; Arthur Gavotto; Pascal Auquier; Pascal Amedro
Journal:  Health Qual Life Outcomes       Date:  2020-11-12       Impact factor: 3.186

6.  Living with the Memories-Parents' Experiences of Their Newborn Child Undergoing Heart Surgery Abroad: A Qualitative Study.

Authors:  Ólöf Kristjánsdóttir; Annica Sjöström-Strand; Gudrún Kristjánsdóttir
Journal:  Int J Environ Res Public Health       Date:  2020-11-28       Impact factor: 3.390

7.  Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease.

Authors:  Erica Sood; Colette Gramszlo; Alejandra Perez Ramirez; Katherine Braley; Samantha C Butler; Jo Ann Davis; Allison A Divanovic; Lindsay A Edwards; Nadine Kasparian; Sarah L Kelly; Trent Neely; Cynthia M Ortinau; Erin Riegel; Amanda J Shillingford; Anne E Kazak
Journal:  J Patient Exp       Date:  2022-04-20

8.  The Role of Clinical Psychology and Peer to Peer Support in the Management of Chronic Medical Conditions - A Practical Example With Adults With Congenital Heart Disease.

Authors:  Edward Callus; Gabriella Pravettoni
Journal:  Front Psychol       Date:  2018-05-30

9.  Neuropsychological and Psychological Functioning Aspects in Myotonic Dystrophy Type 1 Patients in Italy.

Authors:  Edward Callus; Enrico G Bertoldo; Maria Beretta; Sara Boveri; Rosanna Cardani; Barbara Fossati; Elisa Brigonzi; Giovanni Meola
Journal:  Front Neurol       Date:  2018-09-19       Impact factor: 4.003

10.  The CHIP-Family study to improve the psychosocial wellbeing of young children with congenital heart disease and their families: design of a randomized controlled trial.

Authors:  Malindi van der Mheen; Ingrid M van Beynum; Karolijn Dulfer; Jan van der Ende; Eugène van Galen; Jorieke Duvekot; Lisette E Rots; Tabitha P L van den Adel; Ad J J C Bogers; Christopher G McCusker; Frank A Casey; Willem A Helbing; Elisabeth M W J Utens
Journal:  BMC Pediatr       Date:  2018-07-12       Impact factor: 2.125

  10 in total

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