Family Management of Pediatric Cancer: Links with Parenting Satisfaction and Psychological Distress

• Author: Luísa Barros,Carla Crespo,Ágata Salvador
• Published date: 01 September 2019
• DOI: http://doi.org/10.1111/famp.12379
• Date: 01 September 2019

Family Management of Pediatric Cancer: Links with

Parenting Satisfaction and Psychological Distress



AGATA SALVADOR*

CARLA CRESPO*

LU



ISA BARROS*

Research has long acknowledged the disruptions posed by pediatric cancer diagn osis

and treatment to family life. Nonetheless, the mechanisms through which the family

response influences parents’ mental health in this adverse context are not fully understood.

The main goal of the present study was to examine the direct and indirect links, via parent-

ing satisfaction, between family condition management and psychological distress of par-

ents of children with cancer. Participants were 201 parents (86.6% mothers) of children/

adolescents diagnosed with cancer who completed self-report questionnaires assessing fam-

ily condition management (family life difficulty and parental mutuality), parenting satis-

faction, and psychological distress (anxiety and depression). Structural equation modeling

was used to test the proposed mediation model. The results showed that pare nting satisfac-

tion mediated the association between both the family condition management dimensions

(family life difficulty and parental mutuality) and depression. Specifically, greater family

life difficulties and lower parental mutuality were associated with lower parenting satis-

faction, which, in turn, was associated with higher levels of depression. Additi onally,

greater family life difficulties and lower parental mutuality were directly linked to higher

levels of anxiety. Multigroup analyses suggested that the model was valid across patient

age groups (children vs. adolescents) and treatment status (on vs. off-treatment). These

findings reinforce the need for family- and parent-based interventions in the pediatric

oncology field. Interventions that target families’ difficulties and promote their resources

are likely to foster parenting satisfaction and psychological adjustment.

Keywords: Family Condition Management; Parenting Satisfaction; Parental

Psychological Distress; Pediatric Cancer

Fam Proc 58:761–777, 2019

INTRODUCTION

Pediatric cancer prevails as the leading cause of death by disease in children of devel-

oped countries (Kaatsch, 2010). Marked improvements in prognosis and surviva l rates

in recent years have occurred due to more intensive and prolonged therapies (Long &

*Research Center for Psychological Science, Faculty of Psychology, University of Lisbon, Lisbon, Portugal.

Correspondence concerning this article should be addressed to



Agata Salvador, Faculdade de Psi-

cologia, Universidade de Lisboa, Alameda da Universidade, 1649-013 Lisboa, Portugal. E-mail:

agata.m.salvador@gmail.com.

The authors are grateful to all the families who participated in the study and to the health professionals

and personnel of the Portuguese Institute of Oncology in Lisbon and Porto. This study was supported by a

Ph.D. Scholarship (SFRH/BD/103265/2014) from the Portuguese Foundation for Science and Technology

to



Agata Salvador, and by the Gulbenkian Human Development Programme (PGDH) from Calouste Gul-

benkian Foundation.

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Family Process, Vol. 58, No. 3, 2019 ©2018 Family Process Institute

doi: 10.1111/famp.12379

Marsland, 2011). These complex treatment regimens are now largely implemented at

home, placing extra demands on parents (Alderfer & Kazak, 2006; James et al., 2002).

The unexpected and challenging role as a caregiver of a child with a life-threatening condi-

tion may adversely impact the typical experience of parenthood (Long & Marsland, 2011),

as well as parents’ psychological functioning (Raina et al., 2004). Accordingly, a review

found that psychological distress symptoms, such as anxiety and depression, are com-

monly high in parents of children with cancer (Vrijmoet-Wiersma et al., 2008). Further-

more, empirical research has found differences in parents’ psychological functioning over

the course of the illness, with higher levels of distress being found among parents of chil-

dren undergoing antineoplastic treatment (on-treatment status) compared to parents of

children who have already completed therapy (off-treatment status; Sultan, Leclair, Ron-

deau, Burns, & Abate, 2016).

Given the current trend toward home-based healthcare, a key concept to understanding

the family’s response to disease-related challenges is family condition management, that

is, the way this system manages the child’s health condition and incorporates its demands

into family life (Deatrick et al., 2006). Despite the growing body of research on family con-

dition management in other pediatric conditions such as asthma or diabetes (e.g., Mendes,

Crespo, & Austin, 2016; Rearick, Sullivan-Bolyai, Bova, & Knafl, 2011), little attention

has been paid to the particular experience of families of children with cancer (Deatrick

et al., 2006). The life-threatening nature of cancer and its long-term effects , the difficulty

in putting the condition in the background of family life, and the potential changes in par-

enthood call for the identification of families’ weaknesses and resources in managing this

condition (Deatrick, Mullaney, & Mooney-Doyle, 2009; Deatrick et al., 2006). As a step to

address this research gap, the present research sought to explore the relationships

between family condition management, parenting satisfaction and psychological distress

among parents of children and adolescents diagnosed with cancer.

The Family Condition Management

The Family Management Style Framework (FMSF) has been considered a useful tool to

guide research and knowledge regarding a family’s efforts to manage the child’s condition

(Deatrick et al., 2006; Knafl, Deatrick, & Havill, 2012). This conceptual model emphasizes

the interaction between the way family members perceive (definition of the situation) and

manage (management behaviors) their child’s condition, as well as the implications for

family life (perceived consequences). This framework acknowledges the influence of the

sociocultural context on family management style, which, in turn, may influence individ-

ual and family functioning (Knafl et al., 2012). For a comprehensive and systematic

understanding of how family condition management occurs outside the hospita l setting, it

is important to examine aspects that may be problematic, reflecting areas of potential dif-

ficulty, and those that may support positive outcomes, reflecting potential family

strengths (Deatrick et al., 2009). Two dimens ions of family condition management, family

life difficulty and parental mutuality, may be considered key targets for both research and

clinical assessment and interventions, as described next.

Family life difficulty refers to the extent to which caring for a child with a complex

chronic condition, such as cancer, makes family life more challenging (Knafl et al., 2011).

Parents’ strain in accommodating the care requirements of pediatric cancer into everyday

life has been well documented. As soon as the diagnosis is known, the family system must

rapidly reorganize, as the child’s needs become the major priority (Alderfer & Kazak,

2006; James et al., 2002). Frequent hospitalizations and clinic visits (Mercer & Ritchie,

1997; Young, Dixon-Woods, Findlay, & Heney, 2002), administration of medication

(Clarke-Steffen, 1997), ensuring the child’s cooperation (Young et al., 2002), management

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