ArticleIndian journal of palliative care
The Challenges, Coping Mechanisms, and the Needs of the Inhospital Parents Caring for Children with Life-limiting Neurological Disorders: A Qualitative Study.
Article in Indian journal of palliative care. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers, 1 of them a synthesis that pooled it.
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Who cites it
7 citing papers in PubMed, 1 synthesis or guideline pooled it, 9 citations in OpenAlex.
- The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review.Palliative medicine · 2023Pooled it
- Supporting Children With a Chronic Disease and Their Parents When Admitted to Hospital: A Scoping Review of Psychosocial Supports.Acta paediatrica (Oslo, Norway : 1992) · 2026Article
- The Forgotten Caregivers: A Qualitative Study Exploring the Experiences of Fathers of Children With Medical Complexity.Journal of clinical nursing · 2026Article
- The health and well-being of children with medical complexity and their parents' when admitted to inpatient care units: A scoping review.Journal of child health care : for professionals working with children in the hospital and community · 2026Article
- Experiences of Inpatient Healthcare Services Among Children With Medical Complexity and Their Families: A Scoping Review.Health expectations : an international journal of public participation in health care and health policy · 2024Article
- It's about living a normal life: parents' quality of life when their child has a life-threatening or life-limiting condition - a qualitative study.BMC palliative care · 2024Article
- Single session therapy in pediatric healthcare: the value of adopting a strengths-based approach for families living with neurological disorders.Child and adolescent psychiatry and mental health · 2022Article
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesParents who have children with complex lifelong and life-limiting neurological conditions experienced many stresses and anxieties throughout their lives as caregivers. However, this information is still very limited. The study aimed to explore the challenges faced by parents with children who have complex neurological conditions, their coping strategies, needs, and expectations. MATERIALS AND
methodsA semi-structured, in-depth interviews were conducted in the either Malay or English language among the parents of children with complex lifelong neurological conditions and have been on long-term in-patient hospital care. The interviews were audio-recorded and transcribed for thematic analysis. The qualitative study was conducted from October to November 2016 at the Paediatric Institute of Hospital Kuala Lumpur. Grounded theory was used to examine the qualitative data with inductive and deductive types of coding. The transcripts were read repeatedly to allow familiarity to the themes presented by the participants. Further discussions were conducted among the researchers to triangulate the information.
resultsA total of 11 parents were interviewed for this study. The thematic analysis resulted in 8 challenges: Physical wellbeing, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual. Coping strategies comprised problem focused issues related to the key challenges in the caregivers' context. Similar to the needs and expectations, the key themes were derived from the key understandings of the challenges and looking at the palliative care impacts for these children.
conclusionThere are various challenges faced by parents of children with life-limiting neurological disorders. Physical, Environment, Relationship, Financial, Occupational, Rational, Mental, and Spiritual Wellbeing can be a platform for the assessment of the caregivers' needs and the planning for palliative care support.
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