The health of mothers of children with a life-limiting condition: A qualitative interview study

Abstract

Background: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is rarely explored from mothers’ perspectives. Aim: To explore mothers’ accounts of their physical and mental health, experiences of accessing healthcare and who they think should support their health. Design: Qualitative semi-structured interviews were conducted and analysed using thematic analysis. Setting/participants: Thirty mothers of children with a life-limiting condition were recruited via three UK children’s hospices and social media. Results: Mothers felt that their health concerns could be misunderstood by professionals, describing untimely and inappropriate support that failed to recognise the nature of caring for a child with a life-limiting condition. This led to mothers’ reluctance in addressing these concerns. Mothers felt unable to prioritise their own needs, relative to those of their child and worried about who would look after their child if they did become unwell. They described stress as a result of battles with services rather than as a result of caregiving. Mothers valued feeling recognised as caregivers, which made it easier to look after their health alongside their child’s. Hospice support was particularly valuable in this respect. Conclusions: A more unified system that recognises not only the unique set of challenges presented to mothers caring for a child with a life-limiting condition, but the value of palliative care services in supporting these mothers, is required.

Assessing the suitability of the Carer Support Needs Assessment Tool (CSNAT-Paediatric) for use with parents of children with a life-limiting condition: A qualitative secondary analysis

“…This is appropriate given that the secondary analysis relates to, as the primary analyses did, the health experiences and support needs of parents and that the same authors conducted the data collection and analysis. 12…”

“…did, the health experiences and support needs of parents and that the same authors conducted the data collection and analysis. 12 Data were mapped onto the existing domains of the CSNAT (Paediatric) according to latent and semantic meaning. Data that did not relate directly to the domains within the CSNAT (Paediatric) were categorised separately.…”

“…Support depends largely on individual relationships with professionals. 12 Research highlights the need for a process that is able to identify the needs of parents and for interventions to improve their wellbeing. 6…”

Palliation, end of life care and ventilation withdrawal in neuromuscular disorders

“…63 Similarly there is an increasing body of evidence on the physical, emotional and financial impacts on parents caring for a young person with a life-limiting condition, both during their life and in bereavement. [64][65][66] It is essential to consider the psychological and practical needs of the family and carers. For younger patients, support for siblings is also important, acknowledging their oftenunrecognised role as carers as well as their need for psychological support.…”

Fathers' experiences of living with a child with a progressive life‐limiting condition without curative treatment options: A qualitative systematic review

“…In addition, parents report increased financial costs (Brandt et al, 2022), strain on relationships (Krantz et al, 2022; Postavaru et al, 2020) and various emotions, such as uncertainty, chaos, sadness, loneliness and grief (Bally et al, 2018). It has also been found that parents express grieving throughout the trajectory of their child's disease, especially at the time of diagnosis and when the child progressively loses functions (Fisher et al, 2022; Price et al, 2022). The grief is commonly referred to as ‘anticipatory grief reactions.’ This term describes persons going through grief reactions prematurely and detaching themselves under the threat of death (Lindemann, 1994).…”