A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study

Ugalde, Anna; Mathers, Susan; Anderson, Nicole Hennessy; Hudson, Peter; Orellana, Liliana; Gluyas, Cathy

doi:10.1177/0269216317743434

Cited by 11 publications

(16 citation statements)

References 17 publications

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“…Interestingly, recent studies show that mindfulness/meditation training for patients with ALS and their caregivers are beneficial and promote psychological well‐being in both parties (Marconi et al., ; Pagnini et al., ). Other psychological interventions that seem promising are cognitive behavioural therapy (van Groenestijn et al., ) and therapeutic group interventions (Cipolletta, Gammino, Francescon, & Palmieri, ; Ugalde et al., ).…”

Section: Discussionmentioning

confidence: 99%

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

Sandstedt

Littorin

Widsell

et al. 2018

Journal of Clinical Nursing

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Section: Discussionmentioning

confidence: 99%

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

Sandstedt

Littorin

Widsell

et al. 2018

Journal of Clinical Nursing

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“…Supportive interventions, aimed at reducing psychological distress and focused on reducing utilization of maladaptive coping strategies, have been developed in the last decade for improving wellbeing of caregivers of ALS patients [ 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 ], which in turn may even result in a better disease management.…”

Section: Introductionmentioning

confidence: 99%

Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic

et al. 2021

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Family caregivers of people with amyotrophic lateral sclerosis (ALS), a severely disabling neurodegenerative disease due to the degeneration of both upper and lower motor neurons, have a very demanding role in managing their relatives, thereby often experiencing heavy care burden. Previous literature has widely highlighted that this situation reduces caregivers’ quality of life and increases their psychological distress and risk of health problems, but there are relatively few studies that focus on psychological interventions for these situations. Family support is more—not less—important during crisis. However, during the COVID-19 pandemic, maintaining public safety has required restricting the physical presence of families for hospitalized patients. Caregivers of ALS patients felt increased sense of loneliness and experienced greater difficulties in the access to both hospital and home assistance. In response, health systems rapidly adapted family-centric procedures and tools to circumvent restrictions on physical presence. In this regard, internet-based and telehealth solutions have been adopted to facilitate the routine, predictable, and structured communication, crucial to family-centered care. This narrative review aims at addressing more current matters on support needs and interventions for improving wellbeing of caregivers of ALS patients. In particular, we aimed at highlighting several gaps related to the complex needs of caregivers of ALS patients, to the interventions carried out in order to respond to these needs, and to the changes that COVID-19 pandemic caused from 2020 to nowadays in clinical managing of ALS patients. Finally, we report ongoing experiences of psychological support for family caregivers of ALS patients through telehealth solutions, which have been reinforced in case of needing of physical distancing during the COVID-19 pandemic.

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“…All spouses were in mid-to late-stage HD, with total functioning capacity scores ranging from one to five (Shoulson and Fahn 1979). The group program was based on a caregivers' support group for those with motor neurone disease (Ugalde et al 2017), with adaptations made for HD and to reflect male support preferences. Two 2-h sessions, a month apart, were conducted by an HD nurse consultant and a clinical psychologist (Supplementary Table 1).…”

Section: Methodsmentioning

confidence: 99%

“…Research examining caregivers of those with other PNDs has pointed to the benefits of caregiver support groups for emotional and social functioning (Chien et al 2011;Coe and Neufield 1999;Dickinson et al 2017;Piersol et al 2017;Ugalde et al 2017;Walter and Pinquart 2019). For example, research on caregivers with dementia has shown that psychoeducation and support group interventions have small to moderate effects on caregiver burden, depression, subjective well-being and knowledge (Chien et al 2011;Dickinson et al 2017;Piersol et al 2017;Walter and Pinquart 2019).…”

Section: Introductionmentioning

confidence: 99%

Pilot investigation into the need and feasibility of a psychoeducation and support group for male caregivers of those with Huntington’s disease

2021

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The psychosocial sequelae of caregiving in Huntington's disease (HD) have been shown to be extensive, even in comparison with other progressive neurological disorders. Based on observed clinical need, this investigation aimed to identify psychoeducational and emotional support needs of male HD caregivers and to explore the feasibility and utility of a carer support group. Six male caregivers completed quantitative measures assessing depression, anxiety, carer burden, and carer support needs. The men participated in two education and support group sessions, four weeks apart, which were developed with consideration of male support preferences. Qualitative themes arising in these sessions were documented. Questionnaire results showed overall low levels of psychological distress and carer burden. Despite this, the group sessions facilitated disclosure of significant emotional, practical, and relationship challenges arising from HD. Further, a range of psychoeducational and emotional support needs were identified on quantitative and qualitative assessments. Participants strongly endorsed the format of the group and the benefits of participation, highlighting in particular the importance of meeting other men who understood the experience of living with a spouse with HD.

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A self-care, problem-solving and mindfulness intervention for informal caregivers of people with motor neurone disease: A pilot study

Abstract: This pilot serves as an initial step for examining interventions for MND caregivers, with the hope of identifying effective, efficient and sustainable strategies to best support this group.

Cited by 11 publications

References 17 publications

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

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

Support Needs and Interventions for Family Caregivers of Patients with Amyotrophic Lateral Sclerosis (ALS): A Narrative Review with Report of Telemedicine Experiences at the Time of COVID-19 Pandemic

Pilot investigation into the need and feasibility of a psychoeducation and support group for male caregivers of those with Huntington’s disease

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