Affiliations: [a]
Huntington Center Topaz Overduin, Katwijk, The Netherlands
| [b]
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
| [c]
Department of Psychiatry, Leiden University Medical Center, Leiden, The Netherlands
Correspondence:
[*]
Correspondence to: Josine Engels, MD, Leiden University Medical Center, Department of Public Health and Primary Care, Leiden, The Netherlands. E-mail: josineengels@hotmail.com.
Abstract: Background:Long-term Huntington’s disease (HD) care is offered in specialized inpatient nursing home units with a focus on individually perceived quality of life (QoL). This is shaped in daily care and interaction, which is often abstract and intangible. Furthermore, different perspectives are involved and may vary. Objective:To explore and describe perceived QoL of HD patients from three perspectives: manifest HD patients, family members, and nursing staff. Methods:36 patients, 11 family members, and 30 nurses participated in this qualitative study by means of individual interviews and systematic qualitative observations on three units. Results:Preservation of identity and autonomy is important for patients. Patients struggle with increasing dependence, and try to cope with the impact, uncertainty, and progressive nature of the disease. All participants emphasize the focus on “being human, not just a patient”. Both patients and family members mention the difficulty of dealing with altered behavior and loss of control. Patients are reliant on a relational approach, and an attitude of unconditional acceptance, trust, and understanding support by the nurses. Nursing staff help patients to focus on preserved abilities, and to continue to engage in personalized preferred social activities. Specific qualifications of the nurses were of major influence on QoL for HD patients. Conclusion:This study shows, from the patient as well as family member and nursing staff perspectives, that caring for HD patients requires specific knowledge and skills. Particular nursing approaches and attitude and qualifications of the nursing staff in residential HD care improves the perceived QoL of patients.
