The complexity of care in amyotrophic lateral sclerosis

Foley, Geraldine

doi:10.3109/17482968.2011.554556

Cited by 9 publications

(6 citation statements)

References 11 publications

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“…The findings of this study highlight a disparity between health professionals’ experience of patient decision-making, and clinicians’ understanding of the clinical evidence and their subsequent approach to practice 68. This point corresponds with studies that demonstrate the influence of patients’ individual perceptions and experiences on their participation in care 56,69,70.…”

Section: Discussionsupporting

confidence: 71%

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

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BackgroundThe aim of this study was to explore clinician perspectives on patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis (ALS), in an attempt to identify factors influencing decision-making.MethodsThirty-two health professionals from two specialized multidisciplinary ALS clinics participated in individual and group interviews. Participants came from allied health, medical, and nursing backgrounds. Interviews were audio recorded, and the transcripts were analyzed thematically.ResultsRespondents identified barriers and facilitators to optimal timing and quality of decision-making. Barriers related to the patient and the health system. Patient barriers included difficulties accepting the diagnosis, information sources, and the patient-carer relationship. System barriers were timing of diagnosis and symptom management services, access to ALS-specific resources, and interprofessional communication. Facilitators were teamwork approaches, supported by effective communication and evidence-based information.ConclusionPatient-centered and collaborative decision-making is influenced by a range of factors that inhibit the delivery of optimal care. Decision-making relies on a fine balance between timing of information and service provision, and the readiness of patients to receive them. Health system restrictions impacted on optimal timing, and patients coming to terms with their condition. Clinicians valued proactive decision-making to prepare patients and families for inevitable change. The findings indicate disparity between patient choices and clinician perceptions of evidence, knowledge, and experience. To improve multidisciplinary ALS practice, and ultimately patient care, further work is required to bridge this gap in perspectives.

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Section: Discussionsupporting

confidence: 71%

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

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“…The health care and psychosocial complexities of living with a fatal condition create a dynamic and challenging environment for decision-making 18,19. Patient-centered decision-making relies on patients receiving sufficient information about their condition and the treatment options available to them, having the opportunity to discuss these options with their health practitioner, and retaining control over the implementation of the decision 20.…”

Section: Introductionmentioning

confidence: 99%

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Hogden

Greenfield²,

Nugus³

et al. 2012

PPA

111

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BackgroundPatients with amyotrophic lateral sclerosis (ALS) are required to make decisions concerning quality of life and symptom management over the course of their disease. Clinicians perceive that patients’ ability to engage in timely decision-making is extremely challenging. However, we lack patient perspectives on this issue. This study aimed to explore patient experiences of ALS, and to identify factors influencing their decision-making in the specialized multidisciplinary care of ALS.MethodsAn exploratory study was conducted. Fourteen patients from two specialized ALS multidisciplinary clinics participated in semistructured interviews that were audio recorded and transcribed. Data were analyzed for emergent themes.ResultsDecision-making was influenced by three levels of factors, ie, structural, interactional, and personal. The structural factor was the decision-making environment of specialized multidisciplinary ALS clinics, which supported decision-making by providing patients with disease-specific information and specialized care planning. Interactional factors were the patient experiences of ALS, including patients’ reaction to the diagnosis, response to deterioration, and engagement with the multidisciplinary ALS team. Personal factors were patients’ personal philosophies, including their outlook on life, perceptions of control, and planning for the future. Patient approaches to decision-making reflected a focus on the present, rather than anticipating future progression of the disease and potential care needs.ConclusionDecision-making for symptom management and quality of life in ALS care is enhanced when the patient’s personal philosophy is supported by collaborative relationships between the patient and the multidisciplinary ALS team. Patients valued the support provided by the multidisciplinary team; however, their focus on living in the present diverged from the efforts of health professionals to prepare patients and their carers for the future. The challenge facing health professionals is how best to engage each patient in decision-making for their future needs, to bridge this gap.

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“…MND care should be provided through a multidisciplinary team (MDT) approach that is person-centered, focusing on the physical, emotional, social, and spiritual needs of the person (Foley, 2011). Those MDT professionals who are more adept at addressing the existential concerns of people with MND are psychologists or palliative care professionals (Hogden et al, 2017).…”

mentioning

confidence: 99%

Interpreting end-of-life experiences of the person with motor neurone disease

Harris

2021

Pall Supp Care

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The complexity of care in amyotrophic lateral sclerosis

Cited by 9 publications

References 11 publications

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

Engaging in patient decision-making in multidisciplinary care for amyotrophic lateral sclerosis: the views of health professionals

What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives

Interpreting end-of-life experiences of the person with motor neurone disease

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