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.
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http://dx.doi.org/10.1017/S1047951117001378 | DOI Listing |
Palliat Care Soc Pract
December 2024
Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing Midwifery & Palliative Care, King's College London, London, UK.
Background: Development of a paediatric palliative care child and family centred outcome measure is a priority for health care professionals, researchers and advocates. It is methodologically challenging to develop a measure relevant for such a heterogenous population with complex needs. Involving children in measuring development is vital.
View Article and Find Full Text PDFCardiol Young
December 2024
Department of Pediatrics, Michigan Medicine, Ann Arbor, Michigan, USA.
Purpose: Paediatric patients with heart failure requiring ventricular assist devices are at heightened risk of neurologic injury and psychosocial adjustment challenges, resulting in a need for neurodevelopmental and psychosocial support following device placement. Through a descriptive survey developed in collaboration by the Advanced Cardiac Therapies Improving Outcomes Network and the Cardiac Neurodevelopmental Outcome Collaborative, the present study aimed to characterise current neurodevelopmental and psychosocial care practices for paediatric patients with ventricular assist devices.
Method: Members of both learning networks developed a 25-item electronic survey assessing neurodevelopmental and psychosocial care practices specific to paediatric ventricular assist device patients.
BMJ Open
August 2024
Division of Pediatric Global Health, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
Introduction: Substance use disorder (SUD) and problematic substance use are global public health concerns with significant multifaceted implications for physical health and psychosocial well-being. The impact of SUD extends beyond the individual to their family while imposing financial and social burdens on the community. Though family-centred interventions have shown promise in addressing SUD, their implementation and impact in low-income and middle-income countries (LMICs) remain underexplored.
View Article and Find Full Text PDFJ Pediatr Nurs
September 2024
Alice Lee Centre for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore; Centre for Holistic Initiatives for Learning and Development (CHILD), Yong Loo Lin School of Medicine, National University of Singapore, Singapore. Electronic address:
Problem: The terminal phase of childhood cancer poses profound physical and mental challenges for children, simultaneously influencing parents and rendering them particularly susceptible to psychosocial issues.
Eligibility Criteria: This review included studies exploring the experiences of either: (1) paediatric terminal oncology patients aged under 18 years, (2) parents with a child facing terminal cancer undergoing palliative care, or (3) parents with a child who had undergone palliative care and died. English language, qualitative journal studies or grey literature of any care settings, geographical locations and publication years were included.
S Afr Fam Pract (2004)
June 2024
Department of Dermatology, Faculty of Health Sciences, Greys Hospital, Pietermaritzburg Department of Dermatology, Faculty of Health Sciences, University of KwaZulu-Natal, Durban.
Background: Epidermolysis bullosa (EB) is a rare, incurable genodermatosis that presents with blistering and skin fragility. Complications can be localised or generalised, limited to the skin or have systemic effects resulting in death. Caring for a child with this painful condition can have a profound effect on the quality of life of parents and the family.
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