Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model

Bogosian, Angeliki; Morgan, Myfanwy; Bishop, Felicity L.; Day, Fern; Moss‐Morris, Rona

doi:10.1080/08870446.2016.1268691

Cited by 15 publications

(15 citation statements)

References 35 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Not only have these people adjusted to disease; they pursue value-driven goals, cultivate inner harmony and balance, invest their energies in meaningful activities and relationships. Persons with MS do not seem to be primarily focused on their own health and related needs; they are rather actively engaged in sharing experiences and collaborating to the promotion of family well-being (Bogosian et al, 2017 ). As for caregivers, their life trajectory—although forcefully disengaged from extra-family socialization and leisure—is grounded in personal and relational values, despite the costs emerging at the hedonic well-being level.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, besides physical impairments, MS poses a number of psychological, behavioral and social challenges to both affected persons and their caregivers (Dennison et al, 2009 ; Ackroyd et al, 2011 ). The progressive course of the disease requires a constant re-adjustment over time (Bogosian et al, 2017 ), leading the person to gradually scale back or adapt daily activities to the new condition, find new occupations and interests, but also disengage from the adjustment process and withdraw from active life.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

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

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

View full text Add to dashboard Cite

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

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Fave

Bassi

Allegri³

et al. 2017

Front. Psychol.

View full text Add to dashboard Cite

show abstract

“…CBT facilitates the adjustment process as do stress management interventions [15]. Even though the intervention programs can be demanding and difficult to integrate in their everyday schedule, PwMS express appreciation of the contact with therapists and co-participants in the therapeutic contexts [16,17].…”

Section: Original Articlementioning

confidence: 99%

Patients with Multiple Sclerosis in Psychotherapy: Processes of Meaning Making and Self Transformation

Evangelia¹,

Anagnostopoulos²,

Triliva³

et al. 2020

Int J Psychol Psychoanal

View full text Add to dashboard Cite

Background: Recent empirical literature on autoimmune diseases has focused extensively on the implementation and evaluation of psychosocial interventions. Psychotherapy and counselling processes for multiple sclerosis (MS) have gained special attention given the cognitive and behavioral dimensions of the symptoms as well as their unpredictable course. The current study aims to gain a deeper understanding of the meaning making processes for persons with MS (PwMS) who are in psychotherapy treatment. Method: The sample of this study consisted of ten PwMS who described their experience of the illness and of psychotherapy of choice through semi-structured interviews. Data collection and analysis adhered to Interpretative Phenomenological Analysis guidelines. Results: The results revealed that PwMS struggled with understanding the initial symptoms, contemplated taking medication, and related symptom development to psychological factors such as depression. Participants were preoccupied with disability representations and questioned the trustworthiness of their bodies. They worked towards integrating the illness into their identity and described how psychotherapy encouraged psychological agency whilst feeling supported and "accepted". Conclusions: Psychotherapy contributes to the processes of shaping participants' life worlds, offering a space to self-organize and reflect within genuine therapeutic relationships.

show abstract

“…emotional reactions, concealing/revealing the condition and perceptions of environment). However, overall the factors that are modifiable are likely to be even more important as the illness progresses and could be incorporated into future interventions (Bogosian, Morgan, Bishop, Day, & Moss-Morris, 2017).…”

Section: Introductionmentioning

confidence: 99%

‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis

Butler

Thomas

Carolan

et al. 2018

Psychology & Health

View full text Add to dashboard Cite

show abstract

Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model

Abstract: This is the accepted version of the paper.This version of the publication may differ from the final published version. Permanent repository link:

Cited by 15 publications

References 35 publications

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

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

Patients with Multiple Sclerosis in Psychotherapy: Processes of Meaning Making and Self Transformation

‘It’s the unknown’ – understanding anxiety: from the perspective of people with multiple sclerosis

Contact Info

Product

Resources

About