Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting

Soltysiak, Beverley; Gardiner, Penny; Skirton, Heather

doi:10.1111/j.1365-2702.2007.02276.x

Cited by 30 publications

(24 citation statements)

References 23 publications

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“…Different levels of care are required as the disease progresses, from symptomatic therapy, psychological support to patients and caregivers, to genetic counseling to family members and, ultimately, to palliative care [6][7][8] . This study shows that centers responsible for managing patients with HD throughout SA are committed to providing, mostly in free-of-cost settings, the best level of care possible, as attested by the fact that most institutions have multidisciplinary teams capable of tailoring treatment strategies to individual patient needs.…”

Section: Discussionmentioning

confidence: 99%

Care of patients with Huntington's disease in South America: a survey

Maciel¹,

Cardoso²,

Chaná-Cuevas

et al. 2013

Arq. Neuro-Psiquiatr.

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Huntington's disease (HD) is a rare neurodegenerative disease with a multitude of symptoms, which requires access to specialized multidisciplinary care for adequate management. The aim of this study was to survey the characteristics of care in various HD centers in South America (SA). Methods A questionnaire was sent to 24 centers involved in the care for HD patients in SA. Results Of the total 24 centers, 19 (79.2%) are academic units. The majority of centers (62.5%) are general movement disorders clinics. Multidisciplinary care is available in 19 (79.2%) centers and in 20 (83.3%) care is provided free of charge. Genetic testing and counseling are available in 25 and 66.6% of centers, respectively. The majority of centers (83.3%) have no institutional support for end-stage care. Conclusions Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.

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Section: Discussionmentioning

confidence: 99%

Care of patients with Huntington's disease in South America: a survey

Maciel¹,

Cardoso²,

Chaná-Cuevas

et al. 2013

Arq. Neuro-Psiquiatr.

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“…The information inherent in a presymptomatic test result may have long-term implications for the mental health of the patient. Deleterious mutation test results may, for example, result in hypervigilance about symptoms (Soltysiak, Gardiner, & Skirton, 2008), and such testing is usually accompanied by supportive nursing care to facilitate decision making and to help patients and their families make adjustments after the result is known. Feelings of genetic vulnerability may relate to fear of discrimination that could have an impact on self-esteem, personal relationships, employment, health care, and financial stability, and nurses should be aware that these fears may influence decisions about accessing presymptomatic testing for a genetic condition.…”

Section: Genetic Testing: Expanded Use and Examples In Clinical Settingsmentioning

confidence: 99%

Implications for Educating the Next Generation of Nurses on Genetics and Genomics in the 21st Century

Lea¹,

Skirton

Read

et al. 2010

J of Nursing Scholarship

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“…Despite numerous recommendations for increased and tailored HD carer support (Skirton et al, 2010;Dawson et al, 2004;Soltysiak et al, 2008;Williams et al, 2012;Hartelius et al, 2010), there is a paucity of research describing specific interventions for HD carers and evaluation studies of such interventions. One paper identified that an HD day service was felt to be supportive to carers, promote their well-being and allow respite for them (Soltysiak et al, 2008).…”

Section: Introductionmentioning

confidence: 99%

“…One paper identified that an HD day service was felt to be supportive to carers, promote their well-being and allow respite for them (Soltysiak et al, 2008). Another study, involving intensive MDT input provided education sessions for family members, but no evaluation of the impact that this intervention had on carers was undertaken (Piira et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

Caring with confidence for Huntington's disease

Dale

Freire-Patino

Matthews

2014

Social Care and Neurodisability

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Purpose – The purpose of this paper is to describe the development of a psychoeducational support group for informal carers of people with Huntington's disease (HD). Design/methodology/approach – A clinical intervention was designed by a specialist HD service in consultation with HD carers, building on resources from a generic programme for carers, to meet the specific needs of HD families. A mixed methods, repeated measures design was used to examine any potential benefits this had on carer confidence and quality of life, and to ascertain the most beneficial aspects of the programme. Findings – At the end of the group, participants reported feeling more confident in caring for relatives with HD. Carers reported that gaining new information and being with other carers was helpful. Research limitations/implications – Although participant numbers were small, this pilot indicates that informal carers of HD patients appear to value psychoeducational support delivered in a group format. Evaluation of this type of intervention for carers warrants more rigorous investigation. Originality/value – There is a paucity of research that evaluates the impact of HD-specific carer interventions. This offers a description of a unique intervention that was aimed to increase knowledge and confidence among HD carers and to help provide the basis for more comprehensive services to be offered to carers of this devastating genetic illness.

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Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting

Abstract: It is helpful to allow patients control over timing and frequency of contact with professionals. Improving understanding of the condition in the public and health professionals may enable patients to access a greater range of social activities.

Cited by 30 publications

References 23 publications

Care of patients with Huntington's disease in South America: a survey

Care of patients with Huntington's disease in South America: a survey

Implications for Educating the Next Generation of Nurses on Genetics and Genomics in the 21st Century

Caring with confidence for Huntington's disease

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