Beyond Disease: Happiness, Goals, and Meanings among Persons with Multiple Sclerosis and Their Caregivers

Abstract

The experience of persons with multiple sclerosis (MS) and their caregivers is usually investigated in terms of emotional distress and health-related quality of life, while well-being indicators remain largely underexplored. In addition, findings are often interpreted from the clinical perspective, neglecting socio-cultural aspects that may crucially contribute to individuals' functioning. At the methodological level, most studies rely on scaled instruments, not allowing participants to freely express their needs and resources. Based on the bio-psycho-social perspective endorsed by the International Classification of Functioning, well-being indicators were investigated among 62 persons with MS (PwMS), their 62 caregivers and two control groups, matched by age and gender. Participants completed the Positive Affect Negative Affect Schedule (PANAS), the Satisfaction with Life Scale (SWLS), and the Eudaimonic and Hedonic Happiness Investigation instrument (EHHI). EHHI provides information on participants' happiness, goals and meanings through scaled and open-ended questions, contextualized within major life domains. No relevant differences emerged among PwMS and caregivers, compared with the respective control groups, as concerns life domains associated with happiness, goals and meaning. Participants across groups prominently mentioned family, highlighting its intrinsic value and its relevance as a sharing context; health did not represent a major theme for PwMS; community, society and religion/spirituality issues were substantially neglected by all participants. PwMS and caregivers reported lower levels of positive affect than their control groups, while no substantial differences emerged for negative affect, happiness and meaningfulness levels in life and across most domains. Results suggest that the experience of MS is associated with well-being in relevant life domains, such as family and close relationships. Although PwMS and caregivers identified a lower number of goals and meaning-related opportunities compared to control groups, they showed a positive adjustment to disease through the development of personal and family resources. These assets are often undervalued by health professionals and social institutions, while they could be fruitfully exploited through the active involvement of PwMS and their families as expert and exemplary informants in initiatives aimed at promoting the well-being of individuals and communities

The caring experience in multiple sclerosis: Caregiving tasks, coping strategies and psychological well‐being

“…In addition, results suggest that this relationship is not inexorably negative, especially when indicators of well-being related to optimal functioning are taken into account, as ill-and well-being can coexist within the context of MS (Bassi et al, 2014;Delle Fave et al, 2017).…”

“…The analytical model adopted in our study calls into play coping strategies as mediators in the relationship between these tasks and well‐being. In addition, results suggest that this relationship is not inexorably negative, especially when indicators of well‐being related to optimal functioning are taken into account, as ill‐ and well‐being can coexist within the context of MS (Bassi et al, ; Delle Fave et al, ). In keeping with research on benefit finding (Delle Fave et al, ; Pakenham, , ), psycho‐emotional and social‐practical tasks can positively contribute to well‐being through the use of adaptive coping strategies focused on supportive engagement and positive reframing.…”

“…Focus on well-being can provide a more complete view of the caregiving experience, including its positive aspects (Marino et al, 2017;Pakenham, 2007) that may coexist with negative ones (Bassi et al, 2014;Delle Fave et al, 2017).…”

“…Well‐being is instead a complex construct encompassing health‐related assessments such as HRQoL, but also general life evaluations like psychological well‐being (Ryff, ), a concept tapping into optimal functioning and comprising perceived autonomy and mastery, life purposes, self‐acceptance, positive relations and personal growth. Focus on well‐being can provide a more complete view of the caregiving experience, including its positive aspects (Marino et al, ; Pakenham, ) that may coexist with negative ones (Bassi et al, ; Delle Fave et al, ).…”

“…Taking care of a person with MS is per se associated with lower levels of health, health-related quality of life (HRQoL) and life satisfaction, as well as higher depression and anxiety; in addition, factors like care recipients' physical and cognitive disability levels and caregiving duration are related to higher burden and lower well-being (Aronson, 1997;Forbes et al, 2007;Giordano et al, 2012Giordano et al, , 2016McKeown, Porter-Armstrong, & Baxter, 2003;Patti et al, 2007;Petrikis, Baldouma, Katsanos, Konitsiotis, & Giannopoulos, 2019;Pozzilli et al, 2004;Rivera-Navarro et al, 2009;Sherman et al, 2007). Interestingly, recent research also showed that caregiving can be associated with positive outcomes such as personal growth, strengthened family and social relations (Delle Fave et al, 2017), and also benefit finding (Pakenham, 2005a(Pakenham, , 2005b.…”