The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

Soofi, Ammarah Y.; Bello-Haas, Vanina Dal; Kho, Michelle E.; Letts, Lori

doi:10.1007/s11136-017-1754-7

Cited by 20 publications

(10 citation statements)

References 21 publications

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“…To promote well-being and QoL of individuals with MND, previous qualitative studies suggest the importance of continuous assessment of person-environment relationships to understand how people maintain some semblance of normality, while experiencing ongoing deterioration [28,30]. It is here that the significance of regulatory flexibility is evident, because "the use and functional benefits of any specific type of self-regulatory strategy will tend to vary across people and situations and by extension that the most efficacious use of self-regulatory strategies is likely to be one that is most flexible" [31, p.593].…”

Section: Flexibility and Optimising Qol In Mndmentioning

confidence: 99%

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

Ando

Young

2020

Disability and Rehabilitation

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Objectives: To identify influential factors for quality of life (QoL) among individuals with motor neurone disease (MND) and explore how regulatory flexibility and psychological flexibility may contribute towards maintaining and improving QoL. Methods: Semi-structured interviews were conducted with 26 individuals with MND. Thematic analysis, using both inductive and deductive analyses, was employed to examine subjective QoL in view of previous understanding of QoL. Results: Four factors were important for the QoL of participants: perceived illness prognosis, sense of self, concerns for significant others, and life to enjoy. These factors reflected psychological stress caused by MND, the participant's value system, and their beliefs about life. In optimising QoL, both regulatory flexibility and psychological flexibility were essential to maintain and enhance QoL. Often, regulatory flexibility was perceived among those employing a mindful approach, and psychological flexibility was found to involve savouring positive experiences. Conclusions: People with MND reported that seeking ways to both maintain and enhance their QoL is crucial, and that this may be accomplished by increasing flexibility through mindfulness and savouring. (171/200 words) ä IMPLICATIONS FOR REHABILITATION People with motor neurone disease (MND) seek to maintain quality of life (QoL) following changes caused by the condition, whilst attempting to enhance QoL by maximising their positive experiences. Regulatory flexibility is essential to maintain QoL and it was closely associated with mindful approach so that MND is not perceived as an inevitable threat to QoL. Psychological flexibility was found to enhance QoL and it involves savouring positive experiences, while abandoning fault-finding of the current situation. Positive inter-personal interactions can encourage people with MND to engage with mindfulness and savouring for favourable outcomes in terms of QoL; current support services should orient towards both mindfulness and savouring.

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Section: Flexibility and Optimising Qol In Mndmentioning

confidence: 99%

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

Ando

Young

2020

Disability and Rehabilitation

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“…Soofi et al [24] attributed the problem of AACD implementation in patients with ALS to the lack among therapists of proper training in necessary skills and technology provision. For this reason, the authors spent substantial time explaining the character input methods to the participants.…”

Section: Application To Initial Trainingmentioning

confidence: 99%

Initial Practice for the Introduction of a Gaze-Based Augmentative and Alternative Communication Device

Moriwaki

2022

Asian J OT

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Communication disorders is one of the most difficult challenges for people with neurodegenerative disease [1]. Although the initial symptoms do not interfere with speech intelligibility or language functioning, as neurodegenerative disease progresses, many people are unable to utilize spontaneous speech and written communication to meet their daily communication needs, which has led to the increased use of gaze-based augmentative and alternative communication devices (AACDs) in recent years [2]. In particular, the progression of amyotrophic lateral sclerosis (ALS) can lead

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“…Importantly, no adverse effects of physical therapy have been identified. Furthermore, a synthesis of qualitative data revealed that ALS patients feel rehabilitation interventions result in an improvement in quality of life [99]. As there do not appear to be any negative sequalae, and there are perceived patient-orientated benefits, the MDT should aspire to be able to offer physical therapy to NMD patients.…”

Section: Physical and Occupational Therapy And Rehabilitationmentioning

confidence: 99%

The adult multidisciplinary respiratory neuromuscular clinic

Shah

Murphy

Kaltsakas

2020

Breathe

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Many neuromuscular disorders (NMD) are complicated by respiratory failure. These patients are best managed in a multidisciplinary outpatient clinic to provide timely access to the various disciplines they require. The key mainstay of treatment of respiratory failure in patients with NMD is noninvasive ventilation, supported by secretion clearance, speech and language therapy, optimisation of nutrition and the maintenance of mobility. Patients with specific conditions may also require cardiology, neurology, orthopaedics, urology and psychological services. The respiratory NMD multidisciplinary team should also provide access to palliative care, and caregiver health and wellbeing should also be reviewed at clinical reviews. The future of care for the respiratory NMD patient will increasingly involve home services and telehealth and the clinic should be equipped and resourced to deliver these. Although not all health systems will be able to provide all elements of the multidisciplinary team discussed here, this review provides the “ideal” recipe for the adult multidisciplinary team and the evidence base underpinning this from which a clinic can be developed.Educational aimsTo provide an overview of the care of an adult neuromuscular disorder patient presenting to the multidisciplinary respiratory clinic.To provide the evidence base for establishing the different elements of the multidisciplinary respiratory clinic.

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The impact of rehabilitative interventions on quality of life: a qualitative evidence synthesis of personal experiences of individuals with amyotrophic lateral sclerosis

Abstract: Rehabilitation interventions were perceived to have potential to support QoL by people with ALS. Advantages and limitations of rehabilitation services within this population were identified.

Cited by 20 publications

References 21 publications

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

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

Initial Practice for the Introduction of a Gaze-Based Augmentative and Alternative Communication Device

The adult multidisciplinary respiratory neuromuscular clinic

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