ALS: The needs of the family caregiver
Tederous Williams, Mary
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The goals of this study were to develop a model of the needs of the ALS family caregivers, to assess the quality of life of family caregivers, and to examine the relationship of identified needs and QoL to patient and family characteristics. This study included interviews with 19 ALS primary family caregivers obtained from a multidisciplinary ALS clinic. Caregivers were asked to identify their needs since the time of the ALS diagnosis of their family member. 109 needs were identified from these qualitative interviews. The 109 needs were then sorted and rated on a dimension of importance by 12 of the family caregivers. In addition, the caregivers completed a brief standardized measure of health-related quality of life (SF 8). The individual sorts were analyzed using nonmetric multidimensional scaling (MDS). This analysis produced a point map of the 109 needs. Cluster analysis of the MDS distances was then conducted. The cluster analysis produced a four cluster map of ALS Caregivers Needs, including: Stage 1: Early Coping & Adjustment; Stage 2: Maintenance; Stage 3: Transition to End Stage; and Stage 4: Coping with Change & Loss. Results further indicated that the symptom presentation of ALS in the caregiver's family member was associated with lower levels of mental and physical health relative to national means, particularly for patients with initial bulbar symptoms. Additionally, caregivers who resided with their family member with ALS and were responsible for 24-hour care have poorer mental and physical health than ALS family caregivers that did not have primary residence with the ALS family member.