Description of the disease
The World Health Organization estimates that 1.4 million children – defined as individuals between 0 and 15 years old – are blind, with a prevalence of 0.3/1000 children in developed countries and 1.5/1000 in poor/very poor communities. These children face a lifetime of blindness, which equates to a combined estimated 75 million blind years (blind individuals x life expectancy.)[1]
Each year, five hundred thousand children (approximately one per minute) are born blind or become blind before their fifth birthday. Causes of blindness, which vary according to geographic region and socioeconomic status, include corneal scarring, cataracts, glaucoma, retinopathy of prematurity, refractive errors, and poor vision. In all cases, parental involvement and understanding are of paramount importance[1].
Being the parent of a child with any chronic disease can cause stress[2, 3], which is defined by Hans Selye as “a non-specific body response to any demand made upon it.” [4] Parental stress (PS) refers to a series of processes that lead to psychological and physiological reactions when attempting to adapt to parenting activities [3]. Early identification of increased stress in the parent-child system and implementation of interventions can help reduce stress and diminish the frequency and intensity of the child’s emotional and behavioral disorders [5]. The reduction of parental stress improves parental health[6] and positively impacts the quality of care provided to sick children [7].
Conversely, increased and chronic levels of parental stress may put parents, children, and other family members at risk of adverse physical and psychological effects, such as anxiety and depression [8]. Among children, prolonged stress can lead to social incompetence, maladaptive behavior, and cognitive impairment [2]. Stressful events often influence the pathogenesis of physical illness, causing negative affective states. In turn, these directly impact biological processes or care patterns, increasing the risk of becoming sick [9].
Changes in care may occur due to caregivers’ adaptations or coping responses to stress, such as increased smoking, decreased physical activity, insomnia, disinterest, and poor adherence to medical prescriptions and healthy habits. Stress is linked to major depression and poor adherence to treatments [9].
There are records of interference in the parent-child system due to parental stress around a child’s ophthalmological issues, but we did not find any systemic literature reviews on the subject. The current published studies on psychological/psychiatric diseases in the ophthalmological field [10-17] mainly focus on depression, anxiety, and parental burden and do not address the parental stress and child with visual disorders. A systematic literature review aimed at generating evidence and synthesis of what has been studied and published is needed to support the conception and planning of new studies. The evidence synthesis will guide new research and promote further studies to improve care for children with eye diseases and the physical and mental health of their parents.
Eye disorders in children and psychological implications for parents and family
During pregnancy, parents idealize the birth of a perfect child [18]. The birth of a blind child with strabismus, glaucoma, or congenital cataracts creates a discrepancy between the idealized and real child. One aspect of motherhood necessary to establish a healthy mother-child relationship is being able to deal with such discrepancies. Failure in overcoming expectation-reality discrepancies can lead mothers to become depressed, distance themselves from the child, and become unable to provide the warmth and love needed to promote the child’s healthy development [10].
The establishment of an official diagnosis of a disabled child (blindness, for example) marks the occurrence of a family crisis, where members start expressing feelings of sadness, anger, guilt, helplessness, and isolation. Stress can be linked to the disruption of what was idealized versus the reality and the breakdown of family routine, and parents with very high levels of stress need to be guided to enable them to effectively provide higher levels of care [19].
The possibility of parental stress becoming an agent of change in the relationship between a parent and child raises questions as to what levels of resilience and coping strategies must be adopted by children’s families to alleviate the possible psychological distress caused by children’s eye diseases. It is unclear whether stress associated with the basal parental role of daily life is sufficiently robust to lead to clinical disturbances or whether the parental stress experienced by the parents of children with eye diseases correlates with psychological conditions that are potentially harmful to the parents, child, or family health.
More research about parental stress related to ophthalmological disorders in children is necessary because (1) blindness affects over a million children worldwide, (2) stress is a known contributor to many serious health issues, and (3) quality of life and appropriate allocation of healthcare resources are high-priority issues. Systematic reviews will help translate knowledge into action and promote more relevant studies. The first step to progress research in this field is to create a protocol for the synthesized evidence on the methodology used by researchers to evaluate parental stress related to children’s eye diseases; the research instruments; the psychometric characteristics of these conditions; and study design advantages and disadvantages, limitations, and peculiarities.
Review questions
The review questions for this systematic review of literature are as follows:
- What approaches have been used to research parental stress resulting from pediatric eye disease?
- What methodologies are employed in studies of parental stress resulting from pediatric eye diseases?
- What parental stress assessment tools are used in pediatric eye disease research?
- What peculiarities and psychometric characteristics of parental stress assessment instruments are employed in pediatric eye disease research?
- What are the main results of research conducted on parental stress resulting from pediatric eye diseases?
Objectives
Primary objective
To synthesize evidence about approaches, methods, instruments, and results found in studies related to parental stress in ophthalmology.
Secondary objectives
To identify studies and their respective authors, as well as the bibliographical references related to parental stress in ophthalmology.
To characterize the sociodemographic aspects of participants in studies on parental stress in ophthalmology, as well as the clinical and ophthalmological conditions of their children.
To identify the methodological trajectory of selected studies on parental stress in ophthalmology.
To describe the methodology of the instrument used to measure parental stress, with emphasis on its psychometric characteristics (internal reliability, test and retest reliability, and validation criteria).
To highlight the main results and conclusions of authors of published research on parental stress around ophthalmology.
To detect the peculiarities of each study and instrument presented in the research on parental stress around ophthalmology.
Inclusion criteria
Population, exposure, comparator, outcome, and study design components (PECOS) to be analyzed in the studies:
- Population/participants: fathers or mothers only
- Exposure of interest: eye disease in the child
- Comparator: approaches, methods, and characteristics of instruments used to assess parental stress
- Outcome: parental stress
- Study design: primary epidemiological observational studies.
Original studies addressing parental stress in chronic eye diseases in children under 12 years of age will be eligible. Parental stress will be verified. There will be no language or date restrictions on the selected products. Primary epidemiological observational studies will be considered.
Studies including participants having children older than 12 years will not be eligible. Regarding the type of research, experimental studies, reviews, editorials, comments, mathematical models, methodological articles, expert opinions, and other methodological modalities will also not be eligible, due to the methodological differences that would hinder making comparisons. Studies on parental stress in caregivers or other family members will not be eligible.