The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study

Abstract

There is need for a range of support services to be made available from which carers can select those most appropriate for them. Some support services are not always available for carers of this client group. There is a need for carers to access greater manual handling and training for physical care. Without sufficient support, carer burden can be overwhelming which may impact on the place of care of the patient and ultimately has implications for health and social care services.

The preferences and perspectives of family caregivers towards place of care for their relatives at the end-of-life. A systematic review and thematic synthesis of the qualitative evidence

“…22 24–31 33–38 Facilitating home care was recognised as an achievement by family caregivers 2527 30 33 However, family caregivers in 11 studies recognised and discussed the emotional cost of caregiving,22 24 26 27 29 31–33 35 37 38 with accounts of deteriorating relationships and family conflict:25 27 32 34–36‘‘When he sees me crying, he just gets mad at me [and says], ‘what the hell's the matter with you? It's not you that's got this problem, it's me’.’ ’ 35…”

“…38 While some family caregivers preferred not to leave their relatives, others described respite care as valuable;32 38 they enabled care at home to be facilitated for longer:32

“They did take him into (hospice) when I was exhausted. That was wonderful and that took a load off my mind.”32

(Bereaved female former caregiver, caring for an individual with motor-neurone disease)…”

“…32 38 This related to accessing support services,32 the existence of palliative home support38 and hospice involvement in palliative care 22. One study reported perceptions surrounding hospice improved if family caregivers used their services; participants went from viewing hospices as a place of suffering to a compassionate place of care 36…”

Service delivery for people with hereditary spastic paraparesis living in the South West of England

“…This ''constant awareness'' and living with disease affected both the person with HSP and the carer, and there were requests for, amongst others, physical support services and emotional support. Finding support services appropriate to the needs of specific disease groups has been shown to be an extra stress on people already having to manage a range of problems [20]. The professionals agreed that appropriate emotional support should be available, suggesting it should be more akin to a listening service than one that measured levels of depression in individuals.…”

Dignity Therapy for People with Motor Neuron Disease and Their Family Caregivers: A Feasibility Study

“…3 People with MND and their families often describe their care experiences as unrelenting and worse than cancer because of the progressive nature of the disease and the hopelessness of recovery. 4,10,11 To date, there are few nonpharmacologic interventions specifically designed to lessen the suffering or existential distress that patients experience toward the end of life.…”