Predictors of caregiver depression and family functioning after perinatal stroke

The perinatal period carries a high risk for stroke, occurring in 1:2500 live births
1] and affecting up to 29,500 American children. The consequences are often severe and
last a lifetime, including motor impairments (cerebral palsy), epilepsy, behavioural
and mental health problems, and cognitive deficits 2]. Studies on perinatal stroke outcomes are increasing, but examination of its broader
impact on parents and families has been limited. A recent study of mothers of children
with perinatal stroke revealed that many demonstrate resilience with generally favourable
psychological outcomes. However, mothers of children with moderate and severe outcomes
carry higher rates of depression symptoms, increased stress levels, decreased quality
of life, impaired family functioning, and greater marital distress 3]. Comparison of couple dyads within this study demonstrated that fathers may also
incur psychological morbidity.

In addition, an objective and validated tool has recently been developed to measure
the psychosocial impact of raising a child with perinatal stroke. The APSP Parental
Outcome Measure (POM) assesses a wide variety of outcomes including parental guilt
and blame regarding the cause of the child’s condition 4]. Parents of children with perinatal stroke often experience misplaced feelings of
guilt and blame that may relate to the inability of medical specialists to offer a
specific cause of stroke in most cases 5]. Parents may then erroneously assign causation to occurrences around the time of
the stroke. For example, mothers may assume that they did something wrong during pregnancy
or assign blame to routine events surrounding labour and delivery. This parental guilt
and blame may adversely affect parents’ psychological well-being, potentially for
decades, and has been observed in other populations 6]. Importantly, such misplaced feelings may be amenable to change through simple psychoeducation
regarding the currently unpreventable nature of perinatal stroke 5].

Despite these recent studies, the specific variables that differentiate parents who
adapt well from those who do not are yet to be determined. Potential determinants
of the psychological well-being of caregivers have been explored in other pediatric
conditions, however, and they include child, parent, and psychosocial variables 7], 8]. The most common child variables that predict caregiver well-being are condition
severity, behavioural problems, cognitive deficits, and adaptive functioning 7], 9]. Parent variables appear to be more variable as potential determinants of caregiver
depression and mental health. Examples include proxies of socioeconomic status (e.g.,
income level, education level, and occupational status), ethnicity, age, and gender
8], 10]–12]. A vast selection of psychosocial variables has been shown to independently predict
caregiver depression, including caregiver stress 13], social support 14], 15], and marital quality 11], 16]. Other psychosocial variables that have been associated with caregiver well-being
are anxiety 17], guilt 18], self-esteem 15], self-efficacy 7], and coping strategies 7].

Fewer studies have examined predictors of family functioning, despite its relevance
to family-centered care and the child’s health and psychosocial functioning 19]. Research to date has demonstrated that family functioning is associated with child,
parent, and psychosocial variables. Family distress and functioning can be affected
by the child’s condition severity, cognitive deficits, behavioural problems, and motor
abilities 20]–22]. Less consistent findings exist regarding the impact of demographic variables on
family functioning, such as parent age, gender, income, education, and ethnicity 20], 22]. Other studies focus on psychosocial variables like self-esteem 23], positivity 24], and marital status 25] and highlight their contributions to family adjustment.

These studies largely align with the Double ABCX Model 26], an established caregiver stress model that helps explain why some families adapt
better than others. This model suggests that caregiver adaptation (“X”) may depend
on the combination of the caregivers’ stressors (“A” e.g., child’s condition severity,
behavioural problems, and cognitive deficits), available resources (“B” e.g., social
support, good marital quality, and stress management), the meaning attributed to the
situation (“C” e.g., guilt and blame regarding the cause of the stroke), and their
accumulation over time. Based on this model, available resources and attributed meaning
may mediate the effects of the child’s disability on parent and family outcomes.

Additional caregiver models and frameworks may inform potential mechanisms of caregiver
and family adaptation to raising a child with perinatal stroke 7], 8], 27]. Although variations exist within these models, psychosocial variables (e.g., social
support and stress) have been consistently identified as potential mediators of caregiver
well-being 7], 27]. For instance, studies have confirmed the role of stress as a mediating variable
between pediatric disabilities and parents’ psychological well-being (i.e., pediatric
disabilities affect caregivers’ stress levels, which in return affects caregivers’
well-being) 13], 28]. However, studies on the process and mechanisms of caregiver and family adaptation
remain scarce, especially with respect to family functioning. They also have never
specifically addressed perinatal stroke families.

In addition to caregiver stress models supporting a role for psychosocial variables
as mediators, other research sheds light on potential moderators of caregiver well-being
(i.e., variables that influence the magnitude of the relationship between pediatric
disabilities and caregiver well-being). For instance, Gallagher and Whiteley 29] found that child behavior problems moderated the relationship between stress and
physical health among parents of children with intellectual disabilities. The aforementioned
findings on mediators and moderators are consistent with Wu and Zumbo’s 30] distinction between the two types of variables; mediators are typically cognitive,
affective, physiological, motivational, or social states, while moderators are typically
innate characteristics, background variables, or traits.

The primary aim of this study was to examine predictors of well-being among parents
and families affected by perinatal stroke. It was hypothesized that child variables
(i.e., demographic variables, condition severity, and presence of impairments), parent
variables (i.e., demographic variables), and psychosocial variables (i.e., stress
levels, anxiety symptoms, social support, marital quality, guilt, and blame) would
significantly predict caregiver well-being (depression) and family functioning. A
secondary aim was to examine potential mechanisms of caregiver well-being and family
functioning by investigating mediators and moderators. It was hypothesized that psychosocial
variables would act as mediators and child and parent factors would act as moderators
between condition severity and parent and family outcomes.