How Does Caring for a Child With Disabilities Impact Quality of Life?
May 2019 Issue
It's easy to direct our clinical attention directly to patients and focus on their immediate physical needs. However, understanding the psychosocial factors that impact their experiences and the care we provide allows us to treat them holistically, rather than only addressing the primary diagnosis and physical impairments. When asked to describe challenges to working with pediatric patients, it is common for practitioners to cite the interaction with their patients' parents as a complicating factor. Too often, we view parents as hindering us in achieving clinical objectives, particularly when failure to adhere to a treatment plan limits the effectiveness of our intervention. Our holistic understanding deepens when we begin to view parents, caretakers, siblings, and extended family not only as crucial contributors to the success of our patients' treatment, but as individuals with their own concerns and needs.
The responsibilities of caring for and nurturing any child can overwhelm parents. Parenting children with disabilities presents even greater challenges that are difficult to fully appreciate for those of us who have not personally faced them. Numerous studies have identified areas of parental well-being and quality of life (QOL) that are detrimentally affected by caring for a child with physical and developmental disabilities. In 2013, researchers in Spain published a systematic review of 46 studies that described or explained "the impact of care on the well-being and quality of life of the parents of children with CP [cerebral palsy]."1 The authors describe the need for their review by pointing to the inconsistency between existing studies in their focus on aspects of parental health, evaluation of factors that impact well-being, and methods of inquiry. Because of this "we lack an overall vision that would enable us to understand more precisely the extent to which parents are affected, and also to ascertain the factors that influence better or worse coping with this situation."1
The majority of the 46 studies reviewed (37) were quantitative and involved a cross-sectional design. Twenty of the studies compared data from parents who had a child with CP to a control group of parents whose children did not have health problems. The authors presented their results to describe the impact of care in terms of outcomes that were reported on in the studies and "how those outcomes are affected by the task of caring."1 They also evaluated child-related factors, family-related factors, and contextual factors that were related to the impact of caregiving.1 The research shows that parents of children with CP have "high levels of stress, anxiety, and depression."1 One study reported that levels of caregiver anxiety among mothers with and without a child with CP were similar, but levels of depression were higher in the former group. Anxiety may be a more common response to acute events (such as when a diagnosis of disability is originally made), and depression may be more observable in chronic situations.1 In relation to QOL, research shows that "the care situation can negatively impact on parents' physical health, social relationships, freedom and independence, family relationships, and financial responsibility."1 Physical problems are more common among parents of children with CP, and include "chronic disease, sight and hearing problems, and physical pain," as well as "more musculoskeletal and lower back pain."1 In all quantitative studies incorporating a QOL measure, caregiving had a negative impact on it.
Parents' attitudes and habits also impact their QOL. How caregivers "managed their own physical, emotional and social well-being" influenced their adjustment to their child's situation.1 Higher levels of self-esteem, self-mastery, self-perception, self-efficacy, and stress management all positively impacted the mental health of the parents.1
Most studies reviewed in the Spanish study evaluated the impact that providing care had on mothers. This is consistent with the norm that mothers typically are more involved in childcare. Research has identified ways in which the coping strategies of mothers and fathers differ: "…mothers adopted coping strategies that were more focused on emotional disclosure and seeking social and informational support, and consulted more often with health professionals."1 It is likely that any clinician who has provided care to pediatric patients has no difficulty picturing specific highly involved mothers who advocate fiercely for their children. The researchers describe one study that reported "mothers felt guilty about their child's disease and tended to over-protect and immerse themselves in a very intense relationship with the disabled child."1 This intense advocating can be costly in terms of well-being and QOL, since "overprotectiveness by caregivers was related to anxiety and depression and a lower perception of happiness, both in children as well as their caregivers."1 According to the research, fathers adopt more "cognitive-based and action-oriented coping strategies, and often demonstrated avoidance and denial to distance themselves emotionally from the situation."1 Fathers also took a "more macro view of the situation and cared for the family as a whole, paying attention to other children in the family and seeking to establish a more normal mode of functioning for their own family."1 Factors that reduced parenting satisfaction and contributed to more stress and depression differed for mothers and fathers. For mothers, reduced social support and self-efficacy were important factors, while for fathers the more important factors were the child's behavior problems and low parenting satisfaction.1Future Expectations
The differences between maternal and paternal caregiving was investigated in a study of 49 Israeli families that included a school-aged child with CP.2 According to the authors, "the literature indicates that fathers and mothers interact with their children differently…these different interactions may also affect the way mothers and fathers perceive their child's abilities…and the way they generate different expectations."2 The researchers measured marital satisfaction and caregiver burden, and developed a questionnaire designed to assess "parental future expectations of their children as young adults."2 This instrument addressed parental expectations regarding "future independence in mobility, daily life, rearing a family, and obtaining a profession and livelihood" as well as "their perceptions of and beliefs about their child's current ability in solving daily life problems, academic success, enjoyment of social relations, cognitive ability, and ability to understand emotions…."2 The data showed no significant differences between mothers' and fathers' expectations, both of which were generally high and "dependent on their perceptions of their child's ability."2 These expectations "are not in line with the discouraging picture of the state of affairs for adults with disabilities in the population" and "might imply a possible tendency toward over-optimism…."2 However, this optimism can be beneficial because "parents with high expectations give their children more support, opportunities, and encouragement than do parents with low expectations…and are therefore more likely to have a meaningful impact on their child's long-term outcome."2 High expectations not only benefit the child, but can also have positive effects on the parents: "…high expectations have been reported to enhance parental well-being and facilitate their effective functioning …."2 The authors' describe the differences between the expectations of mothers and fathers by saying "…it seems that mothers' expectations were explained by their current perceptions of their child's holistic status, which is a more general representation of the child…. On the other hand, fathers' expectations could be explained by the child's assistance needs—a more restricted concept of the child…. In addition, only in the mothers' model was the child's level of motor impairment [Gross Motor Function Measure] a significant correlate of their future expectations. Thus, mothers take into account their child's actual level of motor impairment when forming prospects for the child's future."2
The authors summarize that "fathers' expectations related more to the child's activity and participation levels, whereas mothers' expectations were affected more by the child's level of gross motor impairment."2
In 2016, researchers at the University of London published the results of an in-depth analysis of the experience of five middle-aged fathers of young adults with developmental disability (ages 21-32), four of whom also had at least one adult child who was not disabled.3 The young adults were diagnosed with autism, abnormal Rhett's syndrome, and Down syndrome. During 60-90-minute semi-structured interviews with each father, the interviewers asked questions related to topics raised by the fathers. Researchers then coded the transcribed interviews and developed themes as a way of interpreting the data. One topic was how the fathers defined their parenting role, either primarily as providing financial support to the family or sharing responsibilities, as well how the fathers perceived the challenges of navigating the healthcare system. One father described his frustrations with a healthcare system that exacerbated challenges rather than easing them, and his need to "adopt an adversarial approach…."3 Another described the healthcare system as "uncaring" and having "no interest in [his daughter] as a unique human being…."3 The authors note that "ultimately, the notion that support services cannot be trusted means that participants maintain a state of vigilance and are prepared to fight in order to ensure that their children's best interests and well-being remain the issue of central concern."3
The fathers also described their experience that "recognition of the limitations conferred by disability represents a source of ongoing grief…. The temporal unfolding of family life serves to reiterate what is lost in terms of opportunities to reach typical milestones: leaving home, starting a career, achieving independence."3 In their synthesis, the authors describe the experience of one father this way: "It is the mundane, everyday activities which throw his loss into sharp relief so that helping his [non-disabled] daughter load the car as she prepares to leave home highlights his son's limitations. [His son's] life will always be compromised, and…this represents a source of ongoing sadness…. As life unfolds, they are confronted anew with the opportunities which are not available to their sons and daughters. Although many issues are resolved, acceptance, particularly in relation to societal attitudes and behaviors, continues to be something participants grapple with."3 As difficult as these experiences are, according to the researchers the fathers were "at their most animated when talking about the happiness their children bring into their lives…it is apparent that their children bring immense happiness. When asked about the best aspects of parenting, all were effusive in expressing the pleasure they experience."3 When discussing the ways in which the fathers handled the expectations placed on them and their disabled children and the emotional experience of the fathers, the researchers summarize that "this study has shown that avoidance and eschewing painful emotions are not indicative of a dearth of concern. Rather, it is a response which in many ways conforms to societal expectations."3 They also reference a concern mentioned in other research that service providers should be aware of how "their approach typically marginalizes fathers."3
Understanding how caregiving impacts the well-being and QOL of parents of our pediatric and young adult patients can help us develop an approach to our treatment that takes these factors into consideration. For example, parental non-compliance may be a consequence of the caretaking burden, rather than an indication of lack of caring or a skepticism about the effectiveness of our treatment. Understanding that over-protection and an adversarial approach by parents may be conditioned responses to a healthcare system they perceive as limiting rather than supporting their child's development can help us develop more effective responses. Our supportive, rather than defensive, response may lighten the burden for those parents, and have the effect of improving the child's care. Taking the parents' well-being into consideration can help us design interventions that meet the biomechanical needs of our patients and match the parents' needs and the support available within the family system. Appreciating that emotional responses to how a child's disability limits his or her function may vary through different stages of life can increase our sensitivity to detecting and alleviating some of this burden. Interactions with parents may continue to be one of the greatest challenges in providing care to pediatric patients. However, a deeper understanding of the challenges parents face can go a long way to improving those relationships, the care of our patients, and the well-being of those who bear the ultimate responsibility for caregiving.
John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center. He has more than 20 years of experience treating a wide variety of patients.
1. Pousada, M., N. Guillamón, E. Hernández-Encuentra, E. Muñoz, D. Redolar, M. Boixadós, and B. Gómez-Zúñiga. 2013. Impact of caring for a child with cerebral palsy on the quality of life of parents: A systematic review of the literature. Journal of Developmental and Physical Disabilities 25(5):545-77.
2. Barak, S., D. Elad, T. Silberg, and A. Brezner. 2017. Mothers and fathers of children with cerebral palsy: Differences in future expectations. Journal of Developmental and Physical Disabilities 29(2):223-40.
3. Thackeray, L. A., and V. Eatough. 2018. ‘Shutting the world out': An interpretative phenomenological analysis exploring the paternal experience of parenting a young adult with a developmental disability. Journal of Applied Research in Intellectual Disabilities 31:179-90.