The Experience of Amyotrophic Lateral Sclerosis in Ireland

Hardiman, Orla; Lefter, Stela; Galvin, Miriam

doi:10.1007/978-981-15-5840-5_9

Cited by 1 publication

(3 citation statements)

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“…The aim of this mixed methods, exploratory analysis was to explore both caregiver burden and self‐described positive experiences of informal caregivers of people with ALS attending two multidisciplinary clinical centres in Dublin and Utrecht. Each year there are 150 new cases of ALS and 380 people living with the condition in Ireland 13 . At least 80% of all ALS patients within Ireland and the Netherlands, attend the National ALS/MND Clinic in Beaumont Hospital, Dublin 19 and University Medical Centre Utrecht respectively 20 …”

Section: Introductionmentioning

confidence: 99%

“…Caregiver burden is frequently mentioned in the research and health care arenas, and results from the multiple physical, psychological, social, and financial stressors associated with caregiving 12 . ALS is a progressive neurodegenerative disorder with death occurring approximately 3–5 years after symptom onset, 13 and it is particularly important to explore the positive as well as the negative aspects associated with caregiving to support caregiver wellbeing. Psychosocial interventions should focus on enhancement of the positive aspects of caring which could reinforce caregivers' well‐being, resilience and reduce the impact of stress and burden 14‐17 .…”

Section: Introductionmentioning

confidence: 99%

“…Each year there are 150 new cases of ALS and 380 people living with the condition in Ireland. 13 At least 80% of all ALS patients within Ireland and the Netherlands, attend the National ALS/MND Clinic in Beaumont Hospital, Dublin 19 and University Medical Centre Utrecht respectively. 20…”

Section: Introductionmentioning

confidence: 99%

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Burden and benefit—A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands

Kennedy

Conroy

Heverin

et al. 2022

Int J Geriat Psychiatry

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Objectives Amyotrophic Lateral Sclerosis (ALS) is a systemic and terminal disorder of the central nervous system which causes paralysis of limbs, respiratory and bulbar muscles, impacting on physical, communication, cognitive and behavioural functioning. Informal caregivers play a key role in the care of people with ALS. This study aimed to explore experiences of burden along with any beneficial aspects of caregiving in ALS. An understanding of both burden and benefit is important to support the informal caregiver and the person with ALS. Methods/Design This exploratory mixed methods study characterizes two groups of informal caregivers in Ireland (n = 76) and the Netherlands (n = 58). In a semi‐structured interview, quantitative data were collected in the form of standardized measures assessing psychological distress, quality of life and burden. Qualitative data were collected from an open ended question, in which caregivers identified positive aspects in their caregiving experience. These data types were purposefully mixed in the analysis and interpretation stages, to provide a greater depth of evidence through diverse research lenses. Results The caregiver cohorts were predominantly female (69%) and spouse/partners (84%) of the person with ALS. Greater levels of self‐assessed burden were found among the caregivers in the Netherlands (p < 0.05), and higher levels of quality of life among the cohort from Ireland (p < 0.05). Themes generated through qualitative analysis identified caregiver satisfaction, ability to meet the patient's needs and the (re) evaluation of meaning and existential aspects of life as positive aspects of caregiving. Existential factors were identified frequently by the caregivers in Ireland, and personal satisfaction and meeting their care recipient's needs by caregivers in the Netherlands. Three percent of all respondents reported there was nothing positive about caregiving. Conclusions Based on our findings, we suggest that both burden and the presence of positive factors should be evaluated and monitored. The possibility of concurrent positive and challenging experiences should be considered in the design and delivery of supportive interventions for informal caregivers.

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Section: Introductionmentioning

confidence: 99%