Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis

Abstract

ObjectivesAmyotrophic lateral sclerosis (ALS), also known as motor neuron disease (MND), is a debilitating terminal condition. Informal caregivers are key figures in ALS care provision. The physical, psychological and emotional impact of providing care in the home requires appropriate assistance and support. The objective of this analysis is to explore the needs of informal ALS caregivers across the caregiving course.DesignIn an open-ended question as part of a semistructured interview, caregivers were asked what would help them in their role. Interviews took place on three occasions at 4-month to 6-month intervals. Demographic, burden and quality of life data were collected, in addition to the open-ended responses. We carried out descriptive statistical analysis and thematic analysis of qualitative data.Setting and participantsHome interviews at baseline (n=81) and on two further occasions (n=56, n=41) with informal caregivers of people with ALS attending the National ALS/MND Clinic at Beaumont Hospital, Dublin, Ireland.ResultsThe majority of caregivers were family members. Hours of care provided and caregiver burden increased across the interview series. Thematic analysis identified what would help them in their role, and needs related to external support and services, psychological-emotional factors, patient-related behaviours, a cure and ‘nothing’. Themes were interconnected and their prevalence varied across the interview time points.ConclusionThis study has shown the consistency and adaptation in what caregivers identified as helpful in their role, across 12–18 months of a caregiving journey. Support needs are clearly defined, and change with time and the course of caregiving. Caregivers need support from family, friends and healthcare professionals in managing their tasks and the emotional demands of caregiving. Identifying the specific needs of informal caregivers should enable health professionals to provide tailored supportive interventions.

Caregiver experience, health‐related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: A cross‐sectional study

“…The found high negative impact in the CRA schedule domain is consistent with previous reports of high time‐dependent burden (Gauthier et al., ; Tramonti, Bongioanni, Leotta, Puppi, & Rossi, ) and feelings of time restrictions (Galvin et al., ; Olsson Ozanne, Graneheim, Persson, & Strang, ). That almost half of our informal caregivers perceived a high negative impact on their health is in contradiction to the studies of (Galvin et al., , ) where 85% describe their health as good to excellent health. On the other hand, others report that caregivers worry for their own health (Pagnini et al., ) and that their health problems can be a barrier for the manageability of their situation (Olsson Ozanne et al., ).…”

“…The result, that substantial time was spent on informal caregiving, corroborates previous findings in caregivers to patients with ALS (Bruletti et al., ; Galvin et al., , ; Peters, Fitzpatrick, Doll, Playford, & Jenkinson, ) and other neurological diseases (Forsberg et al., ; Gottberg et al., ; Miyashita et al., ). The informal caregivers needed to be on hand more or less every day for several hours, despite local government social services such as home care, salaried personal assistance, home adaptations and technical aids.…”

“…Box-plots of HRQL measures are presented in Figure 2. The result, that substantial time was spent on informal caregiving, corroborates previous findings in caregivers to patients with ALS (Bruletti et al, 2015;Galvin et al, 2016Galvin et al, , 2018Peters, Fitzpatrick, Doll, Playford, & Jenkinson, 2012) and other neurological diseases (Forsberg et al, 2006;Gottberg et al, 2014;Miyashita et al, 2009).…”

“…The found high negative impact in the CRA schedule domain is consistent with previous reports of high time-dependent burden (Gauthier et al, 2007;Tramonti, Bongioanni, Leotta, Puppi, & Rossi, 2015) and feelings of time restrictions (Galvin et al, 2016;Olsson Ozanne, Graneheim, Persson, & Strang, 2012). That almost half of our informal caregivers perceived a high negative impact on their health is in contradiction to the studies of (Galvin et al, 2016(Galvin et al, , 2018 where 85% describe their health as good to excellent health.…”

“…These factors might be related to informal caregivers, for example anxiety and depression (Burke et al., ; Vignola et al., ), problem‐solving skills (Murphy, Felgoise, Walsh, & Simmons, ) and lack of social support (Peters et al., ); or to patients with ALS, for example cognitive and behavioural impairments (Chio et al., ). Further, the quality of the relationship between caregivers and patients might be another important aspect (Cipolletta et al., ; Galvin et al., ). These factors were, however, not assessed in the present study.…”