The Impact of Pituitary Disease on The Family Caregiver and Overall Family Functioning
Michael A. Weitzner1
1H. Lee Moffitt Cancer Center and
2Pituitary Tumor Network Association,
Tampa, Fla., USA
Chronic medical illness not only affects the patient but the entire family. The family system undergoes a tremendous change in focus during the acute illness, with members marshaling their resources to help the ill member. This inward focus is costly, producing profound stress. Often, family communication styles change to protect the family system and prior functioning. When the stress of caring for an ill member becomes chronic, as is seen in pituitary disease; the initially adaptive changes in family functioning may become problematic even in those families with previously healthy coping. Those families with previously less healthy functioning become even more dysfunctional. Each family identifies a caregiver for their ill member. This caregiver also experiences significant stress related to caregiving demands. Caregiver adaptation to the stress depends on how the stress is perceived, as well as the caregiver's coping patterns and availability of and satisfaction with social support. These elements comprise a stress process model of caregiving, which has been well-validated in dementia caregiving research. Although the majority of research has focused on dementia and cancer caregiving, identified issues have applicability to caregiving and family issues related to pituitary disease. This report will review:
(1) The field of care giving research, focusing on a stress process model;
(2) Those issues identified in prior caregiving research which have applicability in caregiving for patients with pituitary disease;
(3) Stresses on the family system;
(4) Assessment of family functioning, and
(5) Interventions for caregivers and areas for future research.
Any attempt to describe the impact of pituitary disease on the patient's family and family caregiver is simultaneously extremely difficult and painful. It is difficult in that each family and each patient is affected differently due to a multiplicity of variables, some of which include the following: (1) religion; (2) personal and family belief systems; (3) level of education; (4) socioeconomic status; (5) employment history and status; (6) current age; (7) gender; (8) the quality of medical care received; (9) age at diagnosis and initial treatment; (10) tumor type and stage, and (11) marital status and sexuality. Each of these variables exacts its own emotional toll during the course of seeking diagnosis, undergoing treatment, and the long period of follow-up and occasional adjustments in treatment. The toll is even greater in those situations when the patient does not respond to surgery, radiation therapy, or medication management to the degree expected by the patient and family. The pain felt by the family is overwhelming as their loved one sinks into a deep well of despair, self-doubt, and hopelessness, followed by anger, emotional lability and, too often, accompanied by physical violence, verbal abuse, and intimidation of family members and loved ones. The patient is often peripherally aware of the hurt he or she inflicts but is generally power less in halting the downward emotional slide and its many inevitable outcomes [R. Knutzen, personal commun.]. The impact of chronic illness on the family caregiver and family is receiving increased attention as an issue central to research, clinical care, and policy . The focus on caregiving research derives from the realization that our population is growing older and the forces in health care are requiring families to take on more of the responsibility for their loved ones' health care . As a result, caregiving research initially focused on the experiences of caregivers of the frail elderly, those with dementia and serious mental illness, and more recently, those with cancer and other chronic medical illness [2- 8]. However, issues identified by caregivers of these groups have some generalities to other caregiving populations, such as those caring for patients with pituitary disease. We know that, regardless of disability, most caregivers are middle aged women . The major relationship groups are parents caring for children with major medical illnesses, adult children caring for aging parents, and spouses caring for a partner with chronic medical illness [I 0]. This review will provide an overview of the field of caregiving research, organized around a stress process model which has been validated as a conceptual framework for examining caregiver and family issues. General findings from the field of caregiving research will be presented. Since most research has been conducted with caregivers of dementia and cancer patients, available information on their specific issues will be discussed which have applicability to caregivers and families of patients with pituitary disease. A number of issues that have received considerable attention in the literature on caregiving, such as the stresses of caregiving, possible mediators within the stress process model, and interventions for caregivers will also be presented, to provide direction for future work on caregiving of patients with pituitary disease.
The Stress Process Model of Caregiving
Much research has been conducted in the broader field of stress and coping [II]. Caregiving for chronically ill family members is considered to be a major life stressor and individuals adjust to their stress by using a variety of coping mechanisms. One method of conceptualizing this stress is through a stress process model of caregiving, which has been most widely applied to dementia caregiving, but has also been applied to cancer caregiving. This model focuses on the following elements: (1) the specific stressors the caregiver experiences that are caused by the patient's illness; (2) how the caregiver appraises these stressors; (3) the manner in which the caregiver copes with the stressors; (4) the extent of and perceived quality of the caregiver's social support system, and (5) how the caregiver is affected by these stressors [2, 4, 5, 12]. Similar stress process models have been proposed for cancer caregiving [13, 14], but have focused on the patient's response to stress rather than that of the caregiver. Inherent to all of these stress process models is the understanding that there are marked individual differences in reactions to caregiving. Depression, poor health, or feelings of substantial burden are just some of the more common reactions to caregiving . Some families show little or no negative impact and may even report benefits from caregiving. The five elements of the stress process model are reviewed below.
Stressors: Primary stressors of caregiving include those stressors that relate directly to caregiving tasks, such as assisting the patient with activities of daily living, managing the patient's symptoms including any treatment-related side effects, and handling any behavioral problems including the patient's emotional distress. Researchers studying cancer caregiving have used a variety of indices to estimate the severity of caregiving stressors, including stage of illness, prognosis, caregiving demands, duration of illness, site of cancer, and patient distress [ 16]. Greater caregiver distress has been associated with more advanced disease, higher caregiving demands, and elevated patient distress, which all lead to an increased sense of being overwhelmed, more impaired family relations and greater emotional distress . A major primary stressor that has emerged in caregiving for dementia and cancer patients is the patients' disruptive behavioral problems [17, I8]. This particular stressor has general applications to caregiving for patients with pituitary disease. Although behavioral problems were less common in one cancer caregiving project, these problems were described as the most difficult, upsetting, tiring, and hardest to manage among caregivers of terminally ill elderly patients 19]. In general, this research suggests that caregiver wellbeing and sense of burden are not as directly associated with the level of help the patient requires with self-care needs as the patient's behavioral problems are . Another study reported that emotional distress in the cancer patient was more predictive of caregiver depression than the level of physical symptoms. This suggests that the provision of physical care is less important in predicting caregivers' distress than the potential 'emotional contagion' of assisting a distressed relative . Caregiving can also lead to secondary stressors such as role strain, financial strain, employment strain, changes in family structure, and other areas due to providing care to the patient, as well as changes in the caregiver's self-concept [2, 20, 21]. These are 'spillover' effects which may occur, but are not universal. It may be stated that the difficulties faced by caregivers do not occur in a vacuum . Little variance in caregiver well-being has been shown through objective measurement of the severity of the caregiver's stressors. Thus, factors that may impact the stressors (i.e., mediating variables) deserve attention [3- 5].
Stress Appraisal: Appraisals, another component of the stress process model, reflect not only the caregiver's subjective perceptions of the identified stressors, but also how acceptable the changes are in the caregiver's life due to caregiving demands [3- 5, 23, 24]. Appraisals of care giving stress have been measured by asking caregivers to report their subjective perceptions of specific caregiving tasks . These ratings have been used in conjunction with measures of primary caregiving stressors. Studies have shown that families rate self-care problems as mildly to moderately stressful. However, families rate disruptive behavioral problems as highly stressful. Behavioral problems include agitation, wandering, personality changes, and dangerous behaviors; all are common in patients with cognitive impairments and can also be seen in patients with pituitary disease . Patient depression is another factor rated as highly stressful for families . It has also been shown that subjective appraisals of caregiving stressors are more predictive of caregiver burden and depression than objective severity of patient illness . Little is known about how severe family caregivers of patients with pituitary disease perceive their stress to be. While some primary stressors, including self-care activities, patient depression, are common to caregiving across different medical illnesses, the different problems specific to pituitary disease deserve greater attention.
Coping: The coping style of the patient is another important element of the stress process model of care giving and may include approach coping (i.e., efforts to directly face the stress through means such as problem solving and seeking information) and avoidance coping (i.e., efforts to ignore problems, emotional discharge, or wishful thinking) . While avoidance coping may be effective in reducing distress in the short run, research has shown that caregivers who use approach coping have better psychological adjustment . Coping responses of family caregivers of patients with cancer have been characterized in a number of studies , but these studies have been more focused on description of typical coping responses than on identifying which coping responses are more adaptive. One study described several coping mechanisms used by caregivers, which included:
(2) Cognitive reformulation
(5) Social comparisons
(6) Breaks in caregiving duties .
Recently, several studies have reported the benefits derived from the caregiver's level of optimism. More optimistic caregivers appear less depressed and perceive their caregiving situation as having less of an impact upon their health and schedule than caregivers who have decreased optimism . Another study reported that the caregiver's disposition of optimism predicted the caregiver's mental health status and their reactions to caregiving . In other words, optimism appears to play an important role in helping caregivers adapt to the stressors of caregiving and may play a valuable role in designing interventions .
Social Support and Activity: Extensive literature has suggested that social supports are valuable in coping with a variety of life stresses and are important mediators of caregiving stress . Research on dementia caregiving has shown that caregivers do not experience a decrease in the size of their social support network, but they have reduced satisfaction with their level of social support [33, 34]. There is a clear reduction in social activities for these caregivers, including visiting others outside of the home, lowered church attendance, and decreased formal social activities [33, 34]. These fewer social activities, along with smaller numbers of social supports and lower satisfaction with that support, are all predictive of greater caregiver depression [4, 26]. Since caregiving continues over a long period of time, these changes in social support may become more permanent and are less likely to return to premorbid levels when caregiving ends . Research on cancer caregiving and social support has been surprisingly sparse, most of the research having focused on the impact of cancer on the patient's supportive network . The few studies available suggest that family caregivers of cancer patients experience a lack of perceived social support from family members and the medical staff [36-38]. One study showed that spouses with lower levels of social support had more difficulty adjusting than those with a higher level of social support . A longitudinal study found that low levels of perceived social support predicted poorer caregiver functioning . Furthermore, disruption of daily routines and reduced socializing by cancer caregivers has recently been examined, suggesting that over half of cancer caregivers report disruption of their daily routines . Older caregivers reported significantly fewer disruptions, but over half of the caregivers also reported reduced socializing with neighbors, friends, and others due to caregiving demands. There is an important need for future caregiving researching pituitary disease to better specify the consequences of caregiving on the various dimensions of social activity and social support. For example, size of and subjective satisfaction with the social network, the number of social activities, and opportunities for more structured social activities may all be reduced by caregiving. Comparison with non-caregiving groups would also be advantageous in allowing for estimates of the impact of caregiving beyond changes due to other factors.
Stresses on the Family as a Whole
Certainly the family caregiver experiences a tremendous amount of physical and emotional distress, but the stress the family experiences as a whole, related to chronic medical illness in one of its members, cannot be ignored . It has been shown that many families of seriously ill patients experience severe financial burdens that contribute to the overall stress observed in response to illness . The family does not merely react to stress, but also actively adapts to it [43-45]. It is accepted that families progress through developmental stages and a family will react to serious medical illness in one member based on its particular stage of development [46-49]. The task of the newly married couple is to merge two different family systems in order to create a strong, durable new system. Serious medical illness is extremely disruptive to this tenuous new system and may, ultimately, shatter the union. The medically ill spouse is thrown back into a state of dependency and intimacy with parents and siblings. Often, the healthy spouse is left out of this reestablished family dynamic. Tension grows between the family and the healthy spouse since this is usually an unacceptable development for both spouses [47, 48]. The Parents of young children, on the other hand, are focused on childrearing duties. These duties must be balanced. The marriage and the individual needs of each partner. In addition, this balance in obligations occurs while they attempt to maintain a workable mutual relationship with families of origin, friends, and the larger community. Serious medical illness in any member decreases the available energy for all these tasks and disrupts the balance of relationships usually in the direction of least resistance, which is often not the most constructive one [47, 48].The main task for the family with adolescents and young adults is for parents to promote gradual yet definite separation of the children. This is often difficult given the powerful emotional issues adolescents arouse in the family. Adolescents focus on the development of intimacy with peers, as well as a clear sense of identity and goals. Serious medical illness in any family member may disrupt these processes easily. Serious medical illness in a child may arrest normal development abruptly, force regression, and create severe dependence-autonomy conflicts. Serious medical illness in a parent places demands on adolescents that may slow down their separation process, whether they meet the challenge and provide assistance or withdraw and act out. Parental tasks are equally disrupted [47, 48]. Lastly, parents in the aging family must refocus their personal and interpersonal concerns and goals in the direction of old age. They must let children establish their own adult role and face a probable role reversal in relation to their parents. Since it is not uncommon for adult children to live a distance from their parents, there may not be any caretaking adult in the household, creating a vacuum that is very stressful [47, 48]. Thus, the diagnosis of a serious medical illness in one member of the family places the entire family into crisis and each member will react to that stress in characteristic ways [50-54]. During the acute period of an illness, family members are very willing to give active help and support including that from extended family and friends . Families under stress, however, tend to adapt in a manner that integrates the stress of medical illness into their overall functioning as a unit. This is accomplished, in part, by the family's incorporation of the results of past experiences of stress, those experienced by the current nuclear family as well as the experiences from both families of origin [56-59]. Consequently, it is not uncommon for families to thwart the communication process in an effort to protect themselves and the patient. This creates a 'conspiracy of silence', which has tremendously negative effects on family relationships and individual well-being . If this breakdown in communication is not addressed early, the negative effects that result may become permanent in more dysfunctional families . When the illness moves into a more chronic phase, the family must juggle the needs of the patient with the needs of other family members. Although the focus must return to resumption of normal familial developmental tasks tills is difficult to achieve. Different family members may disagree on goals and as more time passes, an increasing number of family members may experience anger, jealousy, and neediness, leading to a paradoxical increase in psychological symptoms. This is worsened by the decreased support of extended family, friends, and coworkers, which parallels the emotional process observed in the family. Thus the family finds itself more isolated at a time when it most needs help. The family may further isolate itself for reasons related to shame, fear, anger, and depression in its members. It has been shown that only a third of families actually made use of available community supports about which they knew, even at a time when they felt a great need for them [37, 48]. Thus, the family remains stuck. The focus remains illness-oriented; families delay major decisions and cope on a day-to-day basis, often at the expense of long-term developmental tasks . Oftentimes, this is a direct reaction to ongoing stress. However, this may become habitual, the family having diverged from its prior state of equilibrium, and now remaining at the new setting [44, 62-65]. However, it is important to note that familial dysfunction in response to chronic stress or illness is not a universal outcome. Some families respond adaptively with new roles and new goals that maximize opportunities for all members .
Assessment of Family Functioning
The emotional and behavioral problems that occur in patients with pituitary disease have a significant negative impact on family functioning. Continued family dysfunction can jeopardize any therapeutic gains the patient makes, thereby causing added emotional distress to the patient and family. A complete assessment of family functioning is therefore essential to ensure an optimal outcome in treatment. The McMaster model of problem centered systems of family therapy has been found to have utility in this area . This model provides a useful assessment and treatment tool for the families of patients with chronic medical illness, such as pituitary disease.The McMaster model defines six primary areas of family functioning:
(2) Behavioral control
(4) Affective responsiveness
(5) Affective involvement
(6) Problem solving.
Thorough education of family members is an important aspect of successful family treatment. The first step is to clarify their expectations for the family member with pituitary disease because these are often unrealistically high and based on a lack of understanding of the neurobiology of mood and behavioral disturbances [67, 68].
Roles: Many patients with pituitary disease have difficulty maintaining their employment due to the emotional and behavioral consequences of their medical illness. This leads to disability from work with loss of ability to bring in income for the family. Active participation in chores such as cooking, cleaning, shopping, yard work, and laundry may be reduced. This change in role functioning may precipitate a need to reallocate roles in the family. This can be an unpleasant experience for families that lack flexibility or resources. It is not uncommon for one of the family members to assume the role of caregiver for the patient when physical functioning may be limited [67, 68].
Behavior Control: Family members often mistakenly interpret the patient's lack of interest or inability to participate in activities as a deliberate and insensitive lack of concern and respond to the patient in a punitive manner. When the patient with pituitary disease had previously been the one responsible for disciplining the children's problem behaviors, these problem behaviors tend to increase when he or she is unable to continue with this role. It is not uncommon, therefore, for the child to be presented as the identified patient [67, 68].
Communication: Many patients with pituitary disease have cognitive impairments consistent with apathy and typically speak only when spoken to, and even then tend to provide only minimal responses. Further, their speech is often bland and monotone creating the impression that they are bored or uninterested. This communication style is usually experienced as unsatisfying and leads over time to a withdrawal from the patient, resulting in a profound sense of isolation. The family should therefore be educated about the apathetic patient's communication deficits and to not 'take it personally' [67, 68].
Affective Responsiveness: Affective responsiveness refers to the spectrum of emotions generated by the family members. Optimal responsiveness enables family members to share and benefit from positive emotions and for optimal conveyance of negative emotions. In this way, problems can be worked through smoothly. Family members learn to read each other's feelings and act accordingly. The patient with pituitary disease may have decreased affective responsiveness. This decline often leads to estrangement from family members who may feel that the patient does not care about them [67, 68].
Affective Involvement: Affective involvement is a measure of each member's emotional investment in another. It is related to affective responsiveness in that the ability to recognize and read one another's emotions provides the impetus and measure of this investment. Family members will inevitably interpret the pituitary disease patient's emotional blunting as a lack of caring and withdraw from them [67, 68].
Problem Solving: For many families, solving problems is a positive experience. Families are brought together in a setting where each member feels safe to express an opinion. For some patients with pituitary disease who have apathy, for example, the problem-solving process is likely to become frustrating and result in escalating emotional outbursts and blaming. Family members must therefore be apprised of what they can expect from the affected family member and adjust their problem-solving strategies appropriately. Families with good problem solving skills are able to benefit from the knowledge obtained from the treatment team and come to accept and compensate for the change in the family system. It is important for the family to actively engage the patient in the problem-solving process so she or he may share in the benefits of problem solving with a greater sense of esteem and connectedness [67, 68].
Interventions for Caregivers
Because of the widely documented impact of dementia on family members' depression, a variety of psychosocial interventions has been developed to enhance caregiver adjustment . These interventions have included support groups, individual and family interventions, and respite care. Several studies have provided systematic evaluation of the efficacy of these interventions for dementia caregivers on such variables as caregiver well-being, and delaying institutionalization of the patient . Support groups are widely available and commonly very well-received by participants. However, they have been found to lead to relatively little objective improvement in caregiver mental health . Caregivers often report such benefits as gaining information, or satisfaction from knowing that others share their problems, but the typical formats of support groups are not focused or intensive enough to successfully combat caregiver depression. Recent research has shown that group interventions which are more focused on teaching caregivers specific skills, such as anger management or increasing life satisfaction, have a greater impact on caregiver well- being [71 ). Other studies have shown that intensive individualized caregiver interventions not only decrease caregiver depression, but can delay nursing home placement . Evaluations of respite care programs have generally found that caregivers are highly satisfied with these programs, but they do not appear to significantly delay institutionalization or decrease caregiver depression . A variety of psychosocial interventions have been developed which are relevant for cancer caregivers. Most of these intervention programs primarily target and evaluate the impact on the patient with cancer , whereas the caregiver benefits have often been thought of as secondary. In particular, support groups, which usually include both the patient and the family caregiver, are increasing in popularity. However, there are few studies available evaluating the impact of these support groups on the cancer caregiver. A number of other caregiver educational intervention programs have been widely disseminated, but they have not been systematically evaluated in terms of their impact on objective caregiver adjustment measures. One randomized study of counseling for spouse caregivers of patients with lung cancer found no evidence that counseling led to greater change than a control group, although most of the patients and significant others were adapting well, leaving little room for improvement on the measures used in the study . Another individualized intervention that introduced problem solving skills to aid cancer caregivers did not find greater improvement in the treatment group and the control group on a broad range of psychosocial measures. However, many of the caregivers in this project were found to have relatively low levels of caregiving activities, and the authors suggest that greater benefits of the intervention were found among a highly distressed subsample of caregivers .
Family caregivers provide largely hidden care that is essential to the well-being of patients with various medical illnesses, including cancer patients, dementia patients, and patients with pituitary disease. More research focusing on the problems of caregivers of patients with pituitary disease is clearly needed, in order to better understand the needs and concerns of these family caregivers. This is a relatively recent area of investigation, so one high priority for future research in this area should be identification of caregivers who are at risk for depression, so that these families can be targeted for services. There are several factors likely to place caregivers at risk: (1) high levels of caregiving stressors; (2) maladaptive appraisals of those stressors; (3) poor coping responses to the stressors, and (4) poor social support. In terms of intervention, systematic evaluation of the efficacy of caregiver interventions will be important in improving these services, and justifying their existence in a cost-driven system of care. Intervention studies should target caregivers who show evidence of significant depression, or risk factors for depression. Previous research has shown that many caregivers cope well without special intervention programs. Little, however, has been done to address the concerns of caregivers of patients with pituitary disease. Support groups and other psych educational interventions are extremely important to help provide caregivers of patients with pituitary disease the information and reassurance that they need so that they may be more effective caregivers. Attention to family caregivers is important not only because of the potential human costs that caregivers experience, but also because unpaid family caregivers are an essential part of the health care system that is being strained by efforts to cut costs, often increasing demands on family members. Better information of the costs of caregiving, the impact on family functioning, and the factors that may help caregivers adjust better to the potentially overwhelming task of caring for a loved one is essential.
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