An exploration of caregiver burden for children with nodding syndrome (lucluc) in Northern Uganda
Nodding syndrome has been described in areas that have experienced adversities such as the prolonged wars in northern Uganda and southern Sudan [1]. These are resource poor settings with limited access to primary health care services. The syndrome, initially reported in Tanzania [2, 3], has subsequently been reported in Liberia [3, 4], the republic of south Sudan [5, 6], and western and northern Uganda [1, 6]. More than 3000 children have been affected by nodding syndrome in post-war northern Uganda that faced chronic adversity, internal displacement and disrupted social networks following more than 20 years of armed conflict [1].
Nodding syndrome is described as a chronic non-communicable, epileptic disorder of unknown origin that afflicts children and adolescents ranging in age from 3 to 18 years [1]. The key symptom is a repetitive dropping forward of the head due to a loss of neck muscle tone at a frequency ranging from 5–20 head-nodding episodes per minute; this is sometimes associated with loss of muscle tone in the trunk and upper extremities [2]. Early symptoms of nodding syndrome are characterized by head nodding with or without other seizure types, hence the name.
Head nodding usually occurs at feeding times and during cold weather. In the later stages of the illness, children may present with cognitive deficits, malnutrition, behavioral problems [7], delayed sexual and physical growth, wasting or stunting and psychiatric difficulties [1]. For a child to be diagnosed with nodding syndrome, he or she must have been previously healthy without any physical or psychological symptoms. As symptoms progress, they become debilitating, eventually causing cognitive, motor, behavioral and social impairments [8]. Studies have shown that often times rather than one child in a family being afflicted, more children in a household may sequentially become afflicted by the disorder at different times compounding the family distress and burden of care.
Because of the associated mental and neurological deficits, caregivers may face stigma and discrimination [9]. Dealing with stigma and other negative care giving experiences overwhelm the family’s available resources. Community surveys and experiences from the nodding syndrome response within the health system in Uganda suggest that the majority of children with nodding syndrome are treated in primary care, without admission to a health facility. When admitted, because of limited resources, acutely ill children are often discharged before they are fully recovered, with further management left to family and close relatives who provide a more supportive role [10].
Given the circumstances, the family caregiver experience has been one that is emotionally and physically draining. Despite these major stresses experienced by caregivers, few studies have explored these challenges in this particular population afflicted by this particular chronic disorder.
Caregiver experience has been described differently by various researchers [11]. To illustrate this, the bio psychosocial consequences of caregiving have been described as caregiver strain [12], caregiver stress [13–15], caregiver appraisal [15, 16], caregiver burden [17] and several other illustrations. Our focus of discussion regarding caregiver experiences is centered on caregiver burden. Caregiver burden has received considerable emphasis in the literature on the social experience of caregiving children with disabling illnesses, such as nodding syndrome. Little attention has been paid, however, to the nature of the burdens perceived.
Caregiver burden has been described as the distress a caregiver experiences that is as a result of the care recipient’s physical dependence and mental incapacity [18]. This concept of burden has been broadened to include two types of distress experienced by the caregiver: that due to his or her provision of care and distress due to the impact that care giving is having on one’s life. To further understand caregiver burden, it is important to critically examine how various researchers have described this concept. In Global Health [19], caregiver burden is described as the negative effects to the family as a result of looking after a care recipient. These negative effects are perceived to be a mediating factor of the patient’s disability along with the negative consequences of the care giving. Other researchers [20] have dichotomized caregiver burden splitting it into objective and subjective dimensions. The objective dimension of burden is one that includes events and activities related to the negative care giving experiences while the subjective burden of care giving relates to feelings aroused in caregivers as they are carrying out their caregiver roles. There are researchers who describe objective burden as the extent of changes in a caregiver’s life in order to incorporate the patient’s needs and subjective burden as the caregiver’s attitude or emotional reactions to the care giving experiences [21]. Another study by Platt, further reports that objective burden is measurable and observable while subjective burden is about the caregiver’s personal feelings [22].
Later studies on caregiver burden have not only looked at objective and subjective dimensions, but have also isolated the variables that contribute to caregiver burden. Caregiver burden is additionally described as the “extent to which caregivers perceive their emotional, physical health, social life and financial status that is resultant of taking on the role of care giving” [16]. Similarly, Kosberg identified variables in burden of care to be physical, psychological or emotional, social and financial problems that caregivers for an impaired or disabled member of the family experience [23].
More recent studies have focused on the recurring attributes of burden of care identified in previous research [24]. Walker and Avant have theorized the burden of care as including perception, as well as a multidimensional phenomenon characterized by dynamic change and overload [25]. More specifically, a caregiver’s perceived burden of care is dependent on the interpretation he or she makes of the demands of the patient and the available resources. In quantitative studies of the multidimensional nature of burden of care, factor analyses have revealed high factor loadings based on the physical, financial, psychological and social attributes [26]. Explorations of the dynamic change in burden of care, have pointed out that burden changes with demands over time which may be due to the increasing disability or impairment of the patient. The demands that are resultant of the increasing disability and or impairment of the patient lead to the overload attribute which essentially is a result from an imbalance between the perceived demands of the patient, and the caregiver perceived resources. As a result, many caregivers suffer from psychological distress like depression [27].
Against this background of caregiver burden attributes, is a wealth of predisposing factors that are influential long before the caregiver begins to perceive the burden of care giving [28]. These factors increase the risk and vulnerability for caregiver burden and they include gender, socioeconomic status, race and culture, health and psychological factors. Regarding gender, it has been shown that the burden of care giving is experienced differently by males in comparison to females, with females taking on the multiple roles of mother, primary emotional supporters and household managers. Females are more likely than males to be caregivers and because women have been socialized into the role of care giving, they perceive their burden to be greater than that of male caregivers, who focus on task accomplishment in their role as caregivers [21, 27–29].
Socioeconomic status and caregiver health have also been found to increase vulnerability to caregiver burden. The amount of income available determines whether services that a caregiver needs for the patient can be purchased to alleviate the burden of care giving [27]. Apart from family finances, the physical and mental state of the caregiver is important. Specifically, a caregiver who is physically or mentally unwell is likely to perceive a higher level of burden of care than one who is in overall good health [30].
Although psychological factors related to burden of care have not been intensely investigated, some research has found a caregiver’s sense of obligation and responsibility to be correlated to burden [29]. The nature of the relationship, including affection that the caregiver has for the care recipient has also been found to be correlated to burden of care [29].
There is evidence that caregivers of persons with chronic illnesses suffer from significant stresses and high levels of burden [20, 30, 31]. The caregiver is usually a relative and the care given is most often continuous. The caregiver often has additional responsibilities in the family and the care is given because of emotional bonding, duty, guilt and/or the lack of other available services in the community [32]. The few studies that relate to caregiver burden in northern Uganda do not distinguish between the individual stressors that families may experience and the resulting strain that these difficulties produce [33].
In sum, there is no consensus on what constitutes burden and its measurement is limited. Different variables in subjective and objective burden might have different levels of impact on different caregivers, and the outcome of that distress may not be the same for all individuals. The key dimensions of burden that have been measured in the literature [34], include: (a) symptom-specific burden; impact of the disability associated with the illness itself, both in terms of demands for assistance and supervision, and regarding the potential stigma associated with the illness, (b) social burden; impact on family and other social relationships, (c) emotional burden; impact on mental and emotional well-being and (4) financial burden; impact on work and the general financial costs of care-giving [35]. In northern Uganda, studies exploring the nature and effect of caregiver burden are limited in scope. We sought to explore challenges in the care giving experiences of caregivers of children with nodding syndrome, with a focus on all four dimensions of caregiver burden.
Study setting: Northern Uganda
This study investigated caregiver burden in Uganda, a low income sub-Saharan country with an income per capita of US $ 547. The income per capita in the study region is even lower than that of the general Ugandan population due to an insurgence that lasted twenty-one years. The literacy rate in the country stands at 81 % for males and 61 % for females [36] but is thought to be much lower in the particular region where the study was conducted as a result of the insurgence. During the conflict, people were institutionalized in internally displaced people (IDP) camps, and on returning to their communities, many realized that everything had changed including the land tenure system on which their livelihood depended. Some of them were thus rendered landless: considering that the main source of livelihood was cattle keeping and crop farming, this created major difficulties for some families with respect to reconstructing their lives. The widespread killings which characterized the conflict resulted in the destruction of the social support fabric, leading to a higher than usual prevalence rate of trauma, grief, and depression with manifestations including suicide, learned helplessness and substance abuse to mention but a few of the effects [37]. Thus, the aim of this study was to explore the challenges that caregivers of children with nodding syndrome are faced with in their daily care of affected children.