Flexibility to manage and enhance quality of life among people with motor neurone disease

Ando, Hikari; Young, Carolyn A

doi:10.1080/09638288.2020.1846797

Cited by 6 publications

(6 citation statements)

References 85 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Psychological appraisals, such as optimism, perceived autonomy, sense of purpose, resilience and perceived levels of social inclusion, have been shown to positively impact caregiver wellbeing 35. Psychological flexibility, mindfulness and meditation have also been shown to contribute to a more positive caregiver experience 14 15 36 37. As such, we believe it is important to identify positive factors derived from caregiving, which may protect against elevated levels of burden and distress in this cohort, and ultimately better inform caregiver supports and interventions.…”

Section: Introductionmentioning

confidence: 96%

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

et al. 2023

View full text Add to dashboard Cite

ObjectivesTo explore factors associated with care burden and the self-described positive aspects of caring for a person living with amyotrophic lateral sclerosis (ALS) over time.DesignExploratory longitudinal mixed-methods study.SettingA national multidisciplinary tertiary clinic in Dublin, Ireland.ParticipantsParticipants were informal caregivers of people living with ALS (plwALS) attending the national ALS/motor neuron disease Clinic Dublin. This study focuses on informal caregivers who completed five consecutive interviews (n= 17) as part of a larger multisite study, over the course of 2.5 years. Participants were over the age of 18. Formal paid caregivers were not included.Outcome measuresData were collected on demographic and well-being measures and an open-ended question asked about positive aspects of caregiving. Relevant statistical analysis was carried out on quantitative data and qualitative data were analysed thematically.ResultsThe caregivers in this study were predominantly female and spouse/partners of the plwALS. Hours of care provided and self-assessed burden increased substantially over time, psychological distress reached clinical significance and quality of life remained relatively stable. Positive aspects identified were thematised as meaning in life and personal satisfaction and varied in relative frequency across phases of the caregiving trajectory.ConclusionsThe co-occurrence of negative and positive factors influences the experiences of informal caregivers in ALS. It is important to explore and acknowledge positive aspects, how they develop and are sustained in order to inform supportive services. The cyclical adaptation identified in this study provides evidence for time sensitive targeted supports.

show abstract

Section: Introductionmentioning

confidence: 96%

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

et al. 2023

View full text Add to dashboard Cite

show abstract

“…As ALS is incurable and progressive, symptom management, coping, preserving quality of life, and promoting well-being practices are important treatment goals. 3 – 7 For that reason, people with ALS are interested in complementary and integrative medicine (CIM) as supportive therapy. 3 – 5 …”

Section: Introductionmentioning

confidence: 99%

“… 3 – 7 For that reason, people with ALS are interested in complementary and integrative medicine (CIM) as supportive therapy. 3 – 5 …”

Section: Introductionmentioning

confidence: 99%

“…As part of potentially suitable CIM interventions towards the above treatment goals, mind body medicine (MBM) interventions seem especially promising. 3 , 5 , 10 – 12 Related to salutogenesis as resource-oriented concept of human health and well-being, MBM is an integrative concept that connects body and mind, and teaches self-care. 13 , 14 Multimodal MBM therapy concepts aim at symptom management, stress reduction, enhancing quality of life, fostering well-being, and strengthening resilience, self-efficacy and disease coping.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Developing a digital mind body medicine supportive care intervention for people with amyotrophic lateral sclerosis using stakeholder engagement and design thinking

Canella,

Braun,

Witt

2024

DIGITAL HEALTH

View full text Add to dashboard Cite

Background Amyotrophic lateral sclerosis disease (ALS) is also called the disease of a thousand farewells. Consequently, it is important to offer supportive care interventions that can be applied continuously during the whole course of the disease. People with ALS are interested in complementary and integrative medicine. Due to ALS’ progressive nature, digital solutions might be most feasible and accessible for people with ALS in the long-term. Objectives In our study, we explored with stakeholders which digital complementary and integrative medicine interventions and formats are considered as supportive for people with ALS, and which settings are needed by the people with ALS to incorporate the interventions in everyday life. Methods We used a participatory research approach and conducted a stakeholder engagement process, applying a design thinking process with qualitative research methods (interviews, workshops). Results Due to the unpredictable course of the disease on their loss of abilities, people with ALS welcome online settings because they are accessible and easy to implement in their daily life. Stakeholders considered the following implementation factors for a complementary and integrative medicine intervention as essential: short-term realization of planned interventions, short duration of interventions, and user-friendliness in terms of accessibility and applicability. Concerning the complementary and integrative medicine interventions, the people with ALS preferred mind body medicine interventions, such as breathing, mindfulness and relaxation exercises. Conclusions Short-term treatment intervals and short online mind body medicine interventions align with the needs of people with ALS. The complementary and integrative medicine interventions as well as the digital infrastructure must meet the special accessibility and applicability needs of people with ALS.

show abstract

“…The Trajectories of Outcomes in Neurological Conditions study is multi-phase exploration of quality of life determinants in motor neuron disease; the Trajectories of Outcomes in Neurological Conditions study reported the prevalence of pain, depression and anxiety and the resulting negative impact on an individual’s quality of life. 21 Despite evidence from the Trajectories of Outcomes in Neurological Conditions group that people with motor neuron disease and their clinical team believe that several of these symptoms can affect the quality of life, 22 non-motor symptoms are often under-reported by patients in clinical consultations more generally, perhaps due to a lack of awareness that they are related to motor neuron disease progression. 23 …”

Section: Introductionmentioning

confidence: 99%

Non-motor symptoms in motor neuron disease: prevalence, assessment and impact

Beswick,

Forbes,

Johnson

et al. 2023

Brain Communications

View full text Add to dashboard Cite

People with motor neuron disease often experience non-motor symptoms that may occur secondary to, or distinct from, motor degeneration and that may significantly reduce quality of life, despite being under-recognized and evaluated in clinical practice. Non-motor symptoms explored in this population-based study include pain, fatigue, gastrointestinal issues, poor sleep, low mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction. People registered on the Clinical Audit Research and Evaluation of motor neuron disease platform, the Scottish Motor Neuron Disease Register, were invited to complete a questionnaire on non-motor symptoms and a self-reported Amyotrophic Lateral Sclerosis Functional Rating Scale. The questionnaire comprised a pre-defined list of 11 potential non-motor symptoms, with the opportunity to list additional symptoms. A total of 120 individuals participated in this cross-sectional study, a 39% response rate of those sent questionnaires (n = 311); 99% of participants recruited (n = 120) experienced at least one non-motor symptom, with 72% (n = 120) reporting five or more. The symptoms most often reported were pain and fatigue (reported by 76% of participants, respectively). The symptoms reported to be most impactful were gastrointestinal issues (reported as ‘severe’ by 54% of participants who experienced them), followed by pain and problematic saliva (51%, respectively). Lower Amyotrophic Lateral Sclerosis Functional Rating Scale scores, indicating more advanced disease and being a long survivor [diagnosed over 8 years ago; Black et al. (Genetic epidemiology of motor neuron disease-associated variants in the Scottish population. Neurobiol Aging. 2017;51:178.e11-178.e20.)], were significantly associated with reporting more symptoms; 73% of respondents were satisfied with the frequency that non-motor symptoms were discussed in clinical care; 80% of participants indicated they believe evaluation of non-motor symptom is important to include as outcomes in trials, independent of their personal experience of these symptoms. The preferred method of assessment was completing questionnaires, at home. The overwhelming majority of people with motor neuron disease report non-motor symptoms and these frequently co-occur. Pain, fatigue, gastrointestinal issues, sleep, mood, anxiety, problematic saliva, apathy, emotional lability, cognitive complaints and sexual dysfunction are prevalent. People with motor neuron disease who had worse physical function and those who were long survivors were more likely to report more symptoms. Where reported, these symptoms are frequent, impactful and a priority for people with motor neuron disease in clinical care and trial design.

show abstract

Flexibility to manage and enhance quality of life among people with motor neurone disease

Cited by 6 publications

References 85 publications

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

Care, burden and self-described positive aspects of caring in amyotrophic lateral sclerosis: an exploratory, longitudinal, mixed-methods study

Developing a digital mind body medicine supportive care intervention for people with amyotrophic lateral sclerosis using stakeholder engagement and design thinking

Non-motor symptoms in motor neuron disease: prevalence, assessment and impact

Contact Info

Product

Resources

About