CBT for Anxiety Related to Parenting a Child with a Life-Limiting Neuromuscular Condition: A Single Case Study
anxiety; CBT; Duchenne muscular dystrophy; neuromuscular condition; parent
Caring for a child with a neuromuscular condition such as Duchenne muscular dystrophy (DMD) presents many challenges, including managing the emotional impact of the diagnosis, managing extended periods of profound uncertainty, navigating the complexities of the healthcare system, managing the child's physical symptoms, and supporting their emotional needs. Although it is encouraging that there is a growing body of research seeking to better understand the medical and treatment needs of those with DMD, the psychosocial needs of individuals and their families have traditionally been considered as ancillary to the child's physical health needs. Consequently, there is limited research investigating the psychological wellbeing of those with DMD, and even less is known about the psychological wellbeing and needs of caregivers, who play a critical role in supporting their child. Caregivers experience multiple stressors and often encounter caring burden and high prevalence rates of anxiety and depression. This paper aims to explore the use of cognitive behavioral therapy (CBT) for comorbid anxiety and low mood in a parent of a child with DMD using a single case design. Results suggest that in the context of multiple stressors and significant life events, CBT was effective in improving mood and reducing symptoms of anxiety. This case highlights the value in offering support to parents of children with DMD and may have clinical implications for other neuromuscular and life-limiting conditions. Copyright © The Author(s) 2020.
Birdsey N
Clinical Case Studies.
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1534650120964869" target="_blank" rel="noreferrer noopener">10.1177/1534650120964869</a>
Clinical spectrum of children receiving palliative care in Malaysian Hospitals
Child Care;hospital;malaysia;palliative Therapy; Acute Lymphoblastic Leukemia; Adolescent; Adult; Bereavement; Caregiver; Cerebral Palsy; Child; Chromosome; Chromosome Aberration; Clinical Trial; Congenital Malformation; Controlled Clinical Trial; Controlled Study; Cross Sectional Study; Diagnosis; Duchenne Muscular Dystrophy; Education; Female; Follow Up; Hospital Admission; Human; Icd-10; Infant; Major Clinical Study; Malaysia; Male; Malignant Neoplasm; Multicenter Study; Needs Assessment; Newborn; Observational Study; Patient Referral; Pediatrician; Prognosis; Review; Spinal Muscular Atrophy
Introduction: Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. Methods: An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. Results: There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Conclusion: Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative. Copyright © 2017, Malaysian Medical Association. All rights reserved.
Chong LA; Khalid F; Khoo TB; Teh SH; Kuan GL; Abdul Manaf AM; Alias E; Chieng CH; Razali H; Ong GB; Hedra ZS; Abdul Shukor INC; Wang JJ
Medical Journal Of Malaysia
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://www.ncbi.nlm.nih.gov/pubmed/28255137" target="_blank" rel="noreferrer">28255137</a>