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

Abstract

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.

Factors related to caregiver strain in ALS: a longitudinal study

“…Reduced caregiver distress contributes to managing the caregiver's situation and thus decreasing strain 33. In line with these caregiver experiences, our study showed that higher levels of caregiver anxiety were associated with higher levels of caregiver strain.…”

“…Bakker et al 32 in their qualitative study reported that some patients and caregivers perceived the QOC of their ALS team to be suboptimal. Other studies showed that family members of patients with ALS search for practical and emotional support from their healthcare professionals 13 14 33. Caregivers who experienced the specialist ALS clinic as being supportive, mentioned that this helped them to cope with the situation 34.…”

Struggling to find meaning in life among spouses of people with ALS

“…It would probably help them in coping with the situation and find meaning in life if they could talk about those kinds of feelings and obtain answers about possible misunderstandings both during the disease process and after the partner had passed away. As shown in this and other studies (see Olsson Ozanne et al, 2012;Ozanne et al, 2013), spouses and partners could find it difficult to talk with each other about their feelings and thoughts. Hence, although it might be preferable to provide individual support for spouses, it is also necessary to give spouses and patients joint support and help each to see the other's situation so that they can be there for each other.…”

“…Previous studies have examined manageability among the spouse-patient pairs and finding meaning among patients (Olsson Ozanne et al, 2012;Ozanne et al, 2013). Our study was performed to reveal experiences of finding meaning among spouses of people living with ALS.…”

Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients

“…) and living in the present can facilitate the devising of coping strategies (Gysels & Higginson , Olsson Ozanne et al . ). It might be easier to find acceptance by focusing on what one can achieve instead of what is impossible.…”