Comparing Parents of Children With Down Syndrome at Different Life Span Stages
| Author | J. Kale Monk,Nicole P. Springer,Natira Staats,Allison Tanner,Juliana Malone,Briana S. Nelson Goff |
| Date | 01 August 2016 |
| DOI | http://doi.org/10.1111/jomf.12312 |
| Published date | 01 August 2016 |
B S. N G Kansas State University
J. K M University of Illinois at Urbana–Champaign∗
J M, N S, A T Kansas State University∗∗
N P. S Texas Tech University∗∗∗
Comparing Parents of Children With Down
Syndrome at Different Life Span Stages
The present study explored the experiences
of parents of children with Down syndrome
at different phases of the life span. Using
a mixed-method design, the current study
included 445 participants who were divided
into 4 groups based on the age of the child: (a)
parents of children under 5 years of age (early
childhood), (b) parents of children between 5
and 11 years of age (middle childhood), (c)
parents of children between 12 and 18 years
of age (adolescence), and (d) parents of chil-
dren over the age of 18 (chronological adults).
Parents reported higher coping strategy scores
during the middle childhood and adolescent
School of Family Studies and Human Services, Kansas
State University,343 K Justin Hall, 1324 Lovers Ln.,
Manhattan, KS 66506-1403 (bnelson@k-state.edu).
∗Department of Human and Community Development, 206
Child Development Laboratory, 1105 W. Nevada St.,
University of Illinois, Urbana, IL 61801.
∗∗School of Family Studies and Human Services, Kansas
State University,303 Justin Hall, 1324 Lovers Ln.,
Manhattan, KS 66506-1403.
∗∗∗Department of Community, Family, and Addiction
Sciences, Texas TechUniversity, P.O.Box 41250, Lubbock,
TX 79409-1250.
This article was edited by Linda Waite.
Key Words: coping, disabilities, human development, life
span, parenting, parents.
years than early childhood or later years (adult
children). Qualitative data identied key areas
that parents across the 4 groups reported,
including acceptance of the diagnosis, having
a positive attitude, their child’s developmental
level, and other internal and external factors
that contribute to their attitudes and coping.
Understanding changes in coping and satis-
faction (life and relationship satisfaction) is
important given the uctuations in well-being
for parents of children across the life span. In
general, a U-shaped curve has been found for
psychological well-being across life, as the
stressors associated with midlife may lead to
dips in well-being (Blanchower & Oswald,
2008). For parents, a U-shaped trajectory of
relationship satisfaction has also been found
in the general population, as the early years of
parenthood are associated with difculty due
to the adjustment to the transition of having a
child, but this relationship satisfaction has been
found to improve as the child grows older (e.g.,
Anderson, Russell, & Schumm, 1983; Keizer &
Schenk, 2012; Steinberg & Silverberg, 1987).
This improvement may be indicative of adaptive
coping as well as the increasing independence
of an aging child. In fact, although relation-
ship satisfaction, as well as other indicators of
overall well-being, may uctuate across time
Journal of Marriage and Family 78 (August 2016): 1131–1148 1131
DOI:10.1111/jomf.12312
1132 Journal of Marriage and Family
(e.g., Whitton, Rhoades, & Whisman, 2014),
it has generally been found to improve with
“emptying the nest” (see Hansen, 2012), as chil-
dren become more independent and launch into
adulthood.
The research on psychological well-being
and life satisfaction for parents in the gen-
eral population over time has been mixed and
likely depends on numerous factors, such as
age, period of development being compared,
as well as other strains (see Nelson, Kushlev,
& Lyubomirsky, 2014). Furthermore, life sat-
isfaction has been found to uctuate over the
transition to parenthood alone, with an initial
boost at the birth of a child and a subsequent
decline to pre-pregnancy levels over the rst
few years (Dyrdal & Lucas, 2013; see also
Luhmann, Hofmann, Eid, & Lucas, 2012).
Thus, phases of well-being at different life span
stages, particularly for parents of children with
disabilities, warrants further attention.
W- D L S S
P C W
D D
Down syndrome (DS) is one of the most com-
mon causes of intellectual disability (Caneld
et al., 2006), affecting an estimated 5,400
infants every year (Sherman, Allen, Bean, &
Freeman, 2007), with an estimated 98,000
children in the United States diagnosed with
DS (McGrath, Stransky, Cooley, & Moeschler,
2011). A recent study of 10 large regions in the
United States found that prevalence of DS at
birth had increased from 9.0 to 11.8 per 10,000
live births from 1979 to 2003 (Shin et al., 2009).
Until recently, the quality of life of parents
of children with disabilities has been overlooked
in research. Parenting a child with a disability
can force a reexamination of belief systems for
parents (King et al., 2006). Kausar, Jevne, and
Sobsey (2003) found that hope enables a positive
transformation that helps parents reframe their
lives by undergoing positive personal growth
from parenting a child with a disability.
Although the overall impact of parenting a
child with a disability can be stressful, the impact
may be less severe than what is often assumed
(Risdal & Singer, 2004). In reality, problems
and stress have been shown to be lower in
families of children with DS than families of
children with other disabilities (e.g., Fidler,
Hodapp, & Dykens, 2000; Smith, Romski,
Sevcik, Adamson, & Barker, 2014). Although
some literature indicates a negative impact on
the couple relationship for parents of a child
with a disability (Hartley et al., 2010; Risdal
& Singer, 2004), the marital relationship has
been identied as important to parental coping
and well-being (Kersh, Hedvat, Hauser-Cram,
& Wareld, 2006). Thus, whereas some parents
of children with developmental disabilities,
including DS, may show differences in stress
and coping (Roach, Orsmond, & Barratt, 1999;
Woodman, 2014), others have shown no signif-
icant differences in individual and relationship
functioning when compared to families of
children without a disability (Freedman, Kalb,
Zablotsky, & Stuart, 2012; van Riper, Ryff, &
Pridham, 1992), indicating these families may
be more similar in their well-being. However,
it is also necessary to understand how these
families’ experiences and well-being may vary
at different points of the life span.
The literature suggests that families go
through stages when processing the diagnosis
of a child with a disability (Fortier & Wanlass,
1984). Fortier and Wanlass (1984) developed a
ve-stage model, consisting of impact, denial,
grief, focusing outward, and closure. This model
focuses more on the early phase of discovery
of the diagnosis and does not encompass the
changes across the full life span. Similarly,
research on changes in parental stress also tend
to focus on the early stages as parents adjust
to the transition to parenthood. For example,
stress was found to increase for parents of chil-
dren with disabilities specically in the early
phases of development, but decrease around
adolescence, with assessment stopping at age
15 (Woodman, 2014). Conversely, Nachshen,
Woodford, and Minnes (2003) addressed the
adjustment of families with an individual with
a developmental disability. Their results indi-
cated that parents of children under 21 years
of age reported more stress than parents of
adult children with developmental disabilities.
This study, however, divided participants into
three age groups: (a) parents of children under
21 years of age, (b) parents of children 22–39
years of age, and (c) parents of children over
40 years of age; thus, no distinction was made
between different early life span groups in
this study (i.e., early childhood, middle child-
hood, adolescence), which are shown to have
variability during these formative years for
families.
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