Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin.

AIM AND OBJECTIVES: This study aims to illuminate factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in patients and next of kin. Fourteen patients and 13 next of kin were interviewed. BACKGROUND: The whole family becomes affected when a person gets the disease. Therefore, it is important to identify strategies for managing the life situation among both patients and their next of kin. DESIGN: A qualitative descriptive study. METHOD: This study based on individual interviews was performed in spring 2007. The interviews were subjected to qualitative content analysis. RESULTS: The results indicate constant fluctuation between opportunities and limitations in individual ability - of patients and family members - to manage the life situation. Both patients and next of kin devised strategies to manage their situations through acceptance, living in the present and perceiving real presence and support from family, friends and authorities. Dysfunctional relationships with family members, friends, or authorities reduced the manageability of the situation. Furthermore, patients experienced difficulties managing their situations when forced into passivity and increased dependence. Next of kin experienced decreased ability to manage because of burden, lack of own time and feelings of being controlled. CONCLUSION: The fluctuations in manageability and the similarities and differences between the pairs, indicate the importance of support, both for the individual and the family. RELEVANCE TO CLINICAL PRACTICE: Fluctuations in manageability and similarities and differences between approaches to managing the situation suggest a need for input from caregivers, for the whole family. Family members need support and time for their own needs and also the opportunity to increase their awareness and understanding of the needs of other family members. This study may give health personnel insight into how to help families devise strategies to manage a complex life situation.

Quality of life, anxiety and depression in ALS patients and their next of kin.

AIM AND OBJECTIVES: The aims were to study health-related quality of life, anxiety and depression in patients with amyotrophic lateral sclerosis and their next of kin and to compare these results with a subset of the general Swedish population. Thirty-five pairs of patients with amyotrophic lateral sclerosis and their next of kin were studied. BACKGROUND: Life changes in many ways when a person is diagnosed with amyotrophic lateral sclerosis. Comparison between patients, next of kin and the general population are needed to get a wider understanding of their quality of life, anxiety and depression. DESIGN: A descriptive study. METHODS: All participants were studied with the SF-36 and the Hospital Anxiety and Depression Scale. Patients' physical function was assessed by the amyotrophic lateral sclerosis Functional Rating Scale-Revised and the Norris scale. RESULTS: A correlation was found in both the mental component summary in SF-36 and in anxiety between the pairs of patients and their next of kin, while no correlation was found in the physical component summary or depression. These results were not related to the patients' physical function. Both patients and their next of kin had some poorer ratings in SF-36 and in anxiety and depression than the general Swedish population. Gender or age did not affect the estimates in any of the scales. CONCLUSIONS: The results indicate that both the patient and the next of kin are affected by the disease independent of physical disability. In most pairs of patient and next of kin, the mental component summary and anxiety were affected to a similar extent. RELEVANCE TO CLINICAL PRACTICE: The results emphasise the need for medical and nursing support to both the patient and the next of kin soon after the diagnosis and during the course of the disease.