Curable or treatable? The implications of different definitions of illness when treating patients suffering from amyotrophic lateral sclerosis

Cappellato, Valeria; Bosco, Nicoletta; Chiò, Adriano; Calvo, Andrea

doi:10.3109/21678421.2015.1074702

Cited by 5 publications

(12 citation statements)

References 16 publications

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“…In line with previous research, we found that nursing assistants struggled with lack of community in the home-based setting (Ahlstr€ om & Wadensten 2010, Christensen 2012. Limited knowledge among primary healthcare professionals may be a key reason why families are wary of MND care provision (Brown et al 2005, Hughes et al 2005, Cappellato et al 2015. One of the most advanced tasks in primary healthcare is providing respiratory support, often occurring in late-stage MND (Dybwik et al 2011(Dybwik et al , 2012.…”

Section: Mnd and Service Provisionsupporting

confidence: 83%

“…, Cappellato et al . ). One of the most advanced tasks in primary healthcare is providing respiratory support, often occurring in late‐stage MND (Dybwik et al .…”

Section: Discussionmentioning

confidence: 97%

“…Previous research on clinical management of MND has centred on specialist healthcare, multidisciplinary clinics, and the work of case managers and neurologists (Bromberg et al 2011, Hogden et al 2012, Siewers et al 2013, Bakker et al 2015. An Italian study of specialised and primary healthcare services found that service fragmentation and lack of co-ordination were major problems in the management of MND (Cappellato et al 2015). Four studies that included professionals working in primary healthcare identified challenges such as lack of knowledge about MND among primary healthcare staff and resource and economic constraints (Brown 2003, Brown et al 2005, Hughes et al 2005, Cappellato et al 2015.…”

Section: Introductionmentioning

confidence: 99%

“…An Italian study of specialised and primary healthcare services found that service fragmentation and lack of co-ordination were major problems in the management of MND (Cappellato et al 2015). Four studies that included professionals working in primary healthcare identified challenges such as lack of knowledge about MND among primary healthcare staff and resource and economic constraints (Brown 2003, Brown et al 2005, Hughes et al 2005, Cappellato et al 2015.…”

Section: Introductionmentioning

confidence: 99%

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Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Lerum

Solbrække

Frich

2017

Health Soc Care Community

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Motor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis and respiratory failure, with a life expectancy of 2-4 years. In order to better understand how MND is managed in the community, we conducted a qualitative study to explore the challenges healthcare professionals encounter when managing MND in primary healthcare. Based on data from 15 semi-structured interviews with primary healthcare professionals in Norway, we found that MND is viewed as a condition that requires exceptional effort and detailed planning. Healthcare professionals reported five main challenges in managing MND in primary healthcare: (i) building relationships with those giving and receiving care in the home; (ii) preventing caregiver burnout and breakdown; (iii) providing tailored care; (iv) ensuring good working conditions in patients' homes; and (v) recruiting and retaining qualified nursing assistants. Healthcare professionals reported needing working conditions that allow them to tailor their approach to the personal, emotional and existential nature of care preferences of those living with MND. However, people with MND and their families were sometimes perceived by healthcare professionals to prefer a strictly task-focused relationship with care providers. Such relationships limited the healthcare professionals' control over the MND trajectory and their capacity to prevent family caregiver burnout and breakdown. Adequate resources, along with training and support of nursing assistants, may increase the continuity of nursing assistants. Responsiveness to patient and family needs may enhance collaboration and promote tailored primary care and support for patients with MND and their families.

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Section: Mnd and Service Provisionsupporting

confidence: 83%

“…, Cappellato et al . ). One of the most advanced tasks in primary healthcare is providing respiratory support, often occurring in late‐stage MND (Dybwik et al .…”

Section: Discussionmentioning

confidence: 97%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Lerum

Solbrække

Frich

2017

Health Soc Care Community

View full text Add to dashboard Cite

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“…The absence of precise guidelines regarding essential levels of care and the autonomy granted to the Regional authorities and other institutional actors at local level have led to a fragmentation of the services and a lack of co‐ordination in the management of ALS in Italy (Cappellato, Bosco, Chio, & Calvo, ). With conditions as complex as ALS, one of the primary issues concerns the difficulty of identifying a figure capable of co‐ordinating and combining the interventions to ensure continuity of care at all stages of the disease.…”

Section: Introductionmentioning

confidence: 99%

Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study

Cipolletta

Gammino

Francescon

et al. 2018

Health Soc Care Community

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Family caregivers of people with amyotrophic lateral sclerosis (ALS) live stressful lives in which they spend most of their time caring for their loved ones and managing difficult situations, thereby reducing the time spent in taking care of themselves. This situation may last several years. 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 is a lack of studies that focus on psychological interventions for these situations. This qualitative study examined a pilot experience of two mutual support groups for family caregivers of people with ALS. The aim was to identify caregivers' needs, the prominent aspects of their experience, and to understand whether and how this intervention strategy might help them. Six partners (four men and two women) and six adult children (five women and one man) participated in the groups, which were conducted in northern Italy. After the support groups finished, participants underwent semi-structured interviews. The authors conducted a content analysis of the transcripts of the interviews and the 20 group sessions. The thematic areas identified were "caregiving," "being the son/daughter of a person with ALS," "being the partner of a person with ALS," "group experience" and "group evaluation." The caregiving experience was profoundly different depending on whether the caregiver was a son/daughter or a partner of a patient with ALS. Moreover, comparison with peers and mutual support helped participants to better cope with ALS and its consequences, to improve their care for their relatives and to overcome typical caregiver isolation. These results suggest the usefulness of involving communities in caregiver support in order to create new networks and activate personal and social resources for well-being.

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Needs of persons living withALSat home and their family caregivers: A scoping review

et al. 2023

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Introduction/AimsMost persons with amyotrophic lateral sclerosis (ALS) live at home with support of family caregivers, with escalating complexity of care over the trajectory of the disease requiring resources and support to mitigate negative physical, social, and emotional outcomes.MethodsThis scoping review identifies the home health/home care needs of persons with ALS and their caregivers as a basis for creating a home health medical standard. We used the PRISMA Extension for Scoping Reviews (PRISMA‐ScR) to examine studies describing home care needs published between 2011 and 2021.ResultsOur search yielded 481 articles, of which 44 were included with a total of 3592 (9–273) participants. Most studies used a cross‐sectional design and 20 (45%) were rated as high quality. We grouped the needs identified as emotional/psychological, assistive devices and technology, information and education, and human resources and professional services. Most studies demonstrated persistent unmet needs and that available interventions were helpful while needs generally were not met proactively, despite the predictable trajectory.DiscussionThis review describes biopsychosocial and equipment interventions over the trajectory of ALS with implications for anticipatory planning by clinicians, as well as policy for coverage of necessary services and supports. Interdisciplinary expert teams could develop consensus around needs across the trajectory and recommended services and supports. To make knowledge more accessible, encourage availability of services, and clarify the need for coverage of services, we aim to develop an expert consensus‐based ALS home health medical standard guidance document in collaboration with the American Association of Neuromuscular and Electrodiagnostic Medicine.

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Curable or treatable? The implications of different definitions of illness when treating patients suffering from amyotrophic lateral sclerosis

Cited by 5 publications

References 16 publications

Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Healthcare professionals’ accounts of challenges in managing motor neurone disease in primary healthcare: a qualitative study

Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: A pilot study

Needs of persons living withALSat home and their family caregivers: A scoping review

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