Applying a healthcare model to Huntington's disease: the key worker approach

Wilson, Eleanor; Aubeeluck, Aimée; Pollock, Kristian

doi:10.12968/bjnn.2014.10.5.214

Cited by 5 publications

(2 citation statements)

References 20 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The authors also note that other neurodegenerative diseases such as Parkinson's disease have had clinical specialist nurses (who acted as care coordinators) in place for many years [24]. Indeed, some HD services in the UK do have this role.…”

Section: Capacity At Hd Specialist Centersmentioning

confidence: 98%

“…In addition, an evaluation of an HD service in the UK found that the role of a specialist nurse as a care coordinator was an essential element for the functioning of the team and delivery of quality care [23]. Wilson and colleagues [24] also highlight the importance of a key worker in HD who can improve access for PwHD attempting to navigate different supportive services and HCPs appointments. In any case, this research supports the idea that an individual who manages multiple services for PwHD is important for providing the best care and avoiding the referrals loop highlighted by HD specialist services in this study.…”

Section: Capacity At Hd Specialist Centersmentioning

confidence: 99%

See 1 more Smart Citation

An Overview of Specialist Services for Huntington’s Disease in the United Kingdom

Willock,

Rickards,

Rosser

et al. 2023

JHD

View full text Add to dashboard Cite

Background: Huntington’s disease (HD) is a rare inherited neurodegenerative disorder characterized by complex evolving needs that change as the condition progresses. There is limited understanding about the organization of HD clinical services and their resourcing in the United Kingdom (UK). Objective: To understand the organization and resourcing of specialist HD services for people with HD (PwHD) in the UK Methods: This cross-sectional study collected quantitative data via on online survey, and qualitative data via telephone semi-structured interviews. Descriptive statistics were used to describe quantitative outcomes, and qualitative results were analyzed using content analysis. Results: A total of 31 specialist services for HD were identified. Of the 27 services that completed the online survey, 23 had an active multidisciplinary team of healthcare professionals (HCPs) and were led primarily by a mental health trust (26%) or tertiary referral hospital (26%). Specialist services offered outpatient clinics (96%), outreach in the community (74%), telemedicine (70%), inpatient beds (26%) and satellite clinics (26%). Many services indicated that their capacity (ability to see patients as often as needed with current resources) was difficult, with some services reporting more difficulty at the early or later stages of HD. Key resourcing gaps were identified with access to facilities, HCPs and referral networks. Conclusions: This research highlights the variation in organization and capacity within individual HD services as well as current resourcing and gaps in access that influence this capacity. Further research should be done to understand the impact of service organization and current resourcing gaps in access on the quality of care provided for PwHD in the UK.

show abstract

Section: Capacity At Hd Specialist Centersmentioning

confidence: 98%

Section: Capacity At Hd Specialist Centersmentioning

confidence: 99%

An Overview of Specialist Services for Huntington’s Disease in the United Kingdom

Willock,

Rickards,

Rosser

et al. 2023

JHD

View full text Add to dashboard Cite

show abstract

The Integrated Care Team: A Practice Model in Child and Family Services

Kelly

Knowles

2015

Journal of Family Social Work

View full text Add to dashboard Cite

Knowledge in practice: the specialist nurse role in Huntington's disease

Wilson

Aubeeluck

2016

British Journal of Neuroscience Nursing

View full text Add to dashboard Cite

Background: There are challenges in providing care for individuals living with Huntington's disease and specialist nurses need a broad range of knowledge and skills. Method: Interviews and observations with 33 individuals living with Huntington's disease, their family members and key healthcare staff were conducted over 3 years. Data were collected to explore the lived experience of patients and how their lives had been affected by Huntington's disease. For the study, 68 interviews were undertaken face to face in the patient's own home; 47 observation sessions were also conducted to complement and inform interviews. Findings: Patients and carers described the importance of specialist nurses, in particular their knowledge of the disease. They recognised that HD was a rare, complex condition about which generalists often knew little. In addition, the specialist nurses also had person-and service-specific knowledge and advice that was highly prized and considered to be an essential aspect of care by participants. Conclusion: Specialist nurses appear to be a vital resource for people with HD. Their disease-specific, person-centred and service-specific knowledge can be used to enhance the provision of care in Huntington's disease.

show abstract

Applying a healthcare model to Huntington's disease: the key worker approach

Cited by 5 publications

References 20 publications

An Overview of Specialist Services for Huntington’s Disease in the United Kingdom

An Overview of Specialist Services for Huntington’s Disease in the United Kingdom

The Integrated Care Team: A Practice Model in Child and Family Services

Knowledge in practice: the specialist nurse role in Huntington's disease

Contact Info

Product

Resources

About