The future between difficulties and resources: Exploring parents' perspective on young adults with multiple sclerosis

• Published date: 01 April 2022
• Author: Emanuela Calandri,Federica Graziano,Martina Borghi,Silvia Bonino
• Date: 01 April 2022
• DOI: http://doi.org/10.1111/fare.12630

RESEARCH

The future between difficulties and resources:

Exploring parents’perspective on young adults

with multiple sclerosis

Emanuela Calandri

1

|Federica Graziano

1,2

|Martina Borghi

2,3

|

Silvia Bonino

1

1

Department of Psychology, University of

Torino, Torino, Italy

2

Cosso Foundation, Pinerolo, Torino, Italy

3

CRESM (Regional Referral Multiple

Sclerosis Centre), “San Luigi Gonzaga”

Hospital, Orbassano, Torino, Italy

Correspondence

Emanuela Calandri, Department of

Psychology, University of Torino, Via Verdi

10, 10124 Torino, Italy.

Email: emanuela.calandri@unito.it

Funding information

Cosso Foudation - Pinerolo (Torino) - Italy

Abstract

Objective: To qualitatively explore parents’representations

of the future of their young adult children diagnosed with

multiple sclerosis (MS) and of their own future as parents.

Background: MS in young adulthood represents a non-

normative transition during the life cycle with a significant

impact on the whole family. Previous research examined

the perspective of parents having children and adolescents

with MS, but there is a lack of knowledge about parenting

young adults with MS.

Method: Thirteen semistructured interviews were con-

ducted with parents of young adults (aged between 18 and

35 years) with MS, and an inductive content analysis was

performed.

Results: The future of young people with MS in various

domains (study, work, and affective relationships) is

deeply influenced by both illness and therapies. Parents’

future is conditioned by the illness of their children. Fam-

ily support and focusing on the present are recognized by

parents as resources in coping with MS difficulties.

Conclusion: The uncertainty and unpredictability of MS

influence parental representations of the future and repre-

sent an additional challenge in the difficult transition to

adulthood.

Implications: The study gives indications for psychological

interventions helping parents to cope with their children’s

illness and to stick to a personal future plan.

KEYWORDS

chronic illness, multiple sclerosis, parenting, representation of the future,

young adult

Received: 1 July 2020Revised: 25 June 2021Accepted: 14 August 2021

DOI: 10.1111/fare.12630

© 2021 National Council on Family Relations.

686 Family Relations. 2022;71:686–706.wileyonlinelibrary.com/journal/fare

Multiple sclerosis (MS) is a chronic neurological disease usually diagnosed during young adult-

hood (between the ages of 20 and 30 years). In relation to the location and extent of neurologi-

cal damages, MS is characterized by a variety of symptoms (fatigue; pain; motor and sensory

disorders; bladder, bowel, and sexual disturbances; cognitive impairment). In most cases the

course of the disease is characterized by relapses and periods of symptom remission (relapsing–

remitting MS [RR-MS]). Pharmacological therapies are not resolutive but aimed at treating

attacks and slowing down the progression of the disease (Lublin et al., 2014). The diagnosis of

MS has become more precocious over the years, and at present MS is the most commoncause

of nontraumatic disability in young adults (Vanbellingen & Kamm, 2016). The specific charac-

teristics of MS (the chronicity, the presence of multiple and fluctuating symptoms, and espe-

cially the unpredictable course) have relevant psychological consequences for patients. Young

adult MS patients usually have moderate physical disability (Solari et al., 2008), but they report

clinically significant anxiety and depressive symptoms (Buchanan et al., 2010) and reduced

quality of life (Rainone et al., 2016).

The present study is theoretically grounded in a lifespan developmental psychology frame-

work, according to which individual development takes place across the entire lifespan, and

people at different ages have to face typical and normative developmental tasks (Elder &

Shanahan, 2006). In particular, young adults’developmental tasks are related to gaining inde-

pendence from family and making choices about study and future job or career paths, as well as

about committed relationships and parenthood (Arnett, 2000). Lifespan developmental psy-

chology literature has also stressed that the individual development is promoted by challenges

or crisis. When they are successfully addressed and overcome, they can lead to development

(Hendry & Kloep, 2002). A chronic illness during young adulthood represents a particular

developmental challenge associated with an unpredictable and nonnormative transition during

the lifespan. MS affects the body functioning and the individual self-image, as well as future life

projects in different domains (e.g., study and work, family, and intimate relationships;

Buchanan et al., 2010). In particular, MS represents an unexpected break in the process of iden-

tity redefinition (Calandri et al., 2020; Charmaz, 1983). Young people with MS therefore face a

double challenge, linked to the developmental tasks of this period of life combined with the life-

long event represented by illness (Bonino, 2021). This double challenge can be met successfully

through an ongoing process of psychological adjustment through which individuals reorganize

their future life plans and redefine their identity including the illness (Calandri et al., 2018,

2019, 2020).

MS in young adulthood is a challenge for the development not only of the individual, but

also for the family as a whole. The normative developmental task of the family with young

adult children is to promote their need for increasing independence and autonomy and to rede-

fine family relationships (Scabini et al., 2006). The illness occurs unexpectedly anddeeply

affects family relationships. To successfully cope with this challenge and turn it into an opportu-

nity for development, families also have to face a process of identity redefinition, searching for

a new balance in parent–child relationships (de Ceuninck van Capelle et al., 2016; Kouzoupis

et al., 2010; Rintell & Melito, 2013).

Most studies on family and MS have investigated the impact of MS on partners (Bogosian

et al., 2009; Janssens et al., 2003; Starks et al., 2010) and on children having a parent with MS

(Bogosian et al., 2010; Boström & Nilsagård, 2016; Moberg et al., 2017), little is known about

the experiences of parents who have a child with MS. In particular, the few existing studies have

focused on the impact of pediatric MS (diagnosed before 18 years of age) on parents. A qualita-

tive study (Carroll et al., 2016) investigated parents’perception of fatigue in adolescents with

MS, pointing to the difficulties of dealing with this uncontrollable and invisible symptom. A

second qualitative study (Hinton & Kirk, 2017) described the parental experience of living with

a child diagnosed with MS, highlighting the feeling of uncertainty in diverse domains, such as

diagnosis, daily living, parent–child interactions, and future perspectives. To our knowledge,

PARENTS’PERSPECTIVE ON YOUNG ADULTS WITH MS687