This episode features Dr Dominika Lisiecka (Department of Nursing and Healthcare Sciences, School of Health and Social Sciences, Institute of Technology Tralee, Tralee, Ireland).
Amyotrophic lateral sclerosis causes multiple neurodegenerative symptoms including dysphagia, which impacts on person’s ability to eat and drink in a safe way and can contribute to chest infections, pneumonia and death. Family caregivers play an important role in managing a person with amyotrophic lateral sclerosis, but little is known about how dysphagia impacts on their own lives.
Managing progressive dysphagia can be a huge challenge for caregivers of people with amyotrophic lateral sclerosis and can lead to multiple psycho-social consequences. Caregivers may be extremely concerned about the safety of a person with amyotrophic lateral sclerosis during meals and fearful of choking. Dysphagia transforms caregivers’ perception of food. The caregivers’ approach to dysphagia may depend on the duration of caregiving and the caregiver’s relationship with the person with amyotrophic lateral sclerosis.
Caregivers of people with amyotrophic lateral sclerosis need support from professionals to manage dysphagia at home. In particular, advice should be provided in relation to managing adverse episodes, such as choking at home. Professionals delivering services for dysphagia should find ways to recognise and address the needs of the caregivers of people with amyotrophic lateral sclerosis rather than focusing on the person with amyotrophic lateral sclerosis alone.
This episode features Kerry Micklewright and Dr Morag Farquhar (School of Health Sciences, University of East Anglia, Norwich, UK).
Informal carers play a vital role in supporting patients with chronic obstructive pulmonary disease (COPD). COPD carers may have unidentified support needs that could be a target for intervention by clinicians. The Carer Support Needs Assessment Tool (CSNAT) is an evidence-based tool to enable identification of carer support needs. Initially developed mainly with carers of patients with end-stage cancer, it is unclear if it encompasses all the potential support needs of COPD carers.
Knowledge relating to COPD carer support needs from published literature was synthesised, including needs carers felt were met, needs carers felt were unmet and supportive inputs carers considered helpful. The identified support needs were then mapped to the CSNAT, and this exercise suggested that the addition of a question encompassing relationship management issues may be required to make CSNAT more comprehensive for COPD carers.
Many of the support needs of COPD carers are unmet: particular areas of concern relate to prolonged social isolation, accessing services, emotional support and information needs. COPD carers would benefit from a comprehensive, person-centred assessment of their needs and appropriate response to these needs by clinicians. The CSNAT is a promising approach to identifying COPD carer support needs, though it may require an additional question on relationship management to ensure it fully encompasses the potential needs of this group.