Informal Caregivers of Hematopoietic Cell Transplant Patients

A Review and Recommendations for Interventions and Research

Robin Gemmill, MSN, RN, CNS, CWOCN; Liz Cooke, MN, RN, AOCN, ANP; Anna Cathy Williams, BS, RN; Marcia Grant, DNSc, RN, FAAN


Cancer Nurs. 2011;34(6):E13-E21. 

In This Article

Methodology of the Literature Search

Understanding the HCT caregiver role experience across the continuum of the HCT experience is essential both to increase caregiver sense of role preparedness and to improve caregiver quality of life (QOL) and health. An extensive literature search of several databases was performed using CINAHL, PubMed, and Scopus from 1980 to 2010. Keywords used for the search included caregiver, spouse, family member, HCT, bonemarrow transplant, quality of life, and burden. Research articles using qualitative, quantitative methods, or mixed methods were selected. Studies were included that addressed caregivers of adult HCT recipients of either autologous or allogeneic transplants. Pediatric HCT patient caregivers were excluded because of differences in treatment and symptom management. The search uncovered a body of literature identifying the multidimensional needs of HCT ICs, the importance of the assessment of HCT caregivers, and the need to implement evidence-based interventions throughout the continuum of the transplantation experience[6,9–19] The literature available on HCT caregiver role is limited; however, it provides information valuable in planning nursing interventions directed to HCT caregiver QOL and health.

Findings across studies were organized into 3 areas. The first area focused on the impact of the experience on the caregiver, namely, the caregiver QOL. The second area focused on caregiver responsibilities in caring for the patient, in other words, the caregiver role. The third area included the resources within or available to the caregiver. Each of these areas had subcomponents.

Concept 1: Caregiver QOL (Evidence Describing HCT Caregiver Interventions)

Informal caregivers of patients undergoing HCT experience high stress levels as a result of the intense physical and emotional care needs of the recipient after transplantation.[20] Quality of life is a broad multidimensional construct composed of the physical, psychological, social, and spiritual domains of life experience. It is an important outcome measure in cancer care research and has been used with family caregivers to describe QOL outcomes.[21]

Physical Domain Hematopoietic cell transplantation ICs report difficulty with physical symptoms when caring for care recipients before, during, and after transplantation. These include fatigue, cognitive dysfunction, sexual issues, and sleep disturbance.[10,12–14,22,23] Managing fatigue or the energy drain associated with caregiving is very challenging for caregivers. Among HCT caregivers, fatigue is generally thought to be caused by constant vigilance associated with attending to the recipient's care needs that become more pronounced as time passes or as complexity of care increases.[10,13,14] In a descriptive study, investigators surveyed 102 HCT caregivers prior to transplantation regarding subjective symptoms of fatigue. Results revealed that caregivers reported high levels of fatigue and associated lower QOL scores before transplantation.[13] These findings highlight the importance of paying attention to caregivers who complain of feeling exhausted.

Bishop and colleagues[23] discussed long-term effects on spouses after transplantation. Like the transplant survivors, the caregiver partners experienced physical symptoms of fatigue, cognitive dysfunction, and sexual issues. These issues were more significant in the caregivers than in matched peer-nominated controls even years after the transplantation (sample mean, 6.7 [SD, 10] years).[23] Interestingly, they found that fatigue, cognitive dysfunction, sleep issues, and depression were interrelated.

Even prior to transplant, in a study of 39 HCT patients and caregivers, researchers collected quantitative data to identify differences in adaptation.[10] Of the 39 caregivers who participated in the study, most were spousal caregivers, with an average age of 44 years, and 54% of the caregivers were working full time. Caregivers reported having troubled dreams prior to the transplantation experience. They also had recurring concerns about the upcoming HCT experience during daytime hours.[10]

Psychological Domain Caregivers, in general, often suffer high psychological morbidity related to the caregiving experience.[1] This is especially true for caregivers of patients undergoing HCT. Distress is associated with the care recipient's physical and psychological wellbeing.[20,24,25] In a study, 28 HCT patient-caregiver dyads were assessed for psychological distress 1 week prior to transplantation and at 3, 6, and 12 months after transplantation. Results showed that 88% had substantial distress before transplantation that gradually decreased to 18% at 12 months.[25] This distress was measured by the 12-item self-completed General Health Questionnaire, which measured the present emotional condition when compared with their normal state. Most caregivers reported having to manage the patient's emotional distress for up to 12 months after transplantation. Other psychological symptoms reported by caregivers include fear of cancer recurrence and general fear about the future.[13,15,26] Such fears highlight the uncertainty felt by many caregivers as their loved ones recover from this life-threatening experience. Supporting the patient after transplantation can be especially difficult for caregivers if recipients themselves are struggling emotionally.

Social Domain Socially, many HCT caregivers report tension with other family members, resentment and frustration, social isolation, financial concerns, and feeling as though their everyday lives have been turned upside down. Many caregivers struggle with adapting to their new roles and responsibilities. In a mixed-method prospective longitudinal study of psychosocial adaptation of 28 HCT patients and their caregivers over a 12-month period, findings reveal half of the caregivers reported taking over tasks and roles of the HCT recipient.[25] In a few studies, caregivers describe the struggle to meet competing demands such as continuing to work outside the home while supporting the HCT recipient.[16,20,27] Inability to meet conflicting work demands and caregiving might require the caregiver to stop working. In 1 study, 67% of caregivers did suspend working to care for the HCT recipient.[20] In another study, investigators explored the time commitment and financial requirements of HCT caregivers during HCT recipient hospitalization. Forty caregivers participated and reported significant time and financial requirements in support of the HCT patient. Many of the caregivers commented that they used vacation time or altered their schedule to accommodate for the hospitalization.[27] Worry about financial concerns resulting from suspension of employment has a significant social impact on the patient and family or caregiver. Lack of employment affects the patient's and family's ability to meet their daily living expenses and their ability to continue to carry health insurance benefits.

Frequently, social networks and family relationships are affected by the caregiving experience. Hematopoietic cell transplantation recipients and their caregivers who need to relocate close to the transplant center, leaving their social support network behind, might find adjustment to the social isolation daunting.[6] Successful management of this isolation requires the care recipient and caregiver to form new relationships with other patients, caregivers, and healthcare professionals. Inability to form these new social relationships can lead to greater isolation, potentially increasing caregiver distress. For many caregivers, social support is an important determinant of whether they would continue to provide support to the HCT recipient. Keogh et al[25] interviewed 28 HCT caregivers' before transplantation and 3 months after transplantation. All of the caregivers stated they had some support, with 68% of HCT caregivers reporting that the support that came from friends, family, and neighbors kept them going. In another study, investigators examined the QOL of 36 HCT patient-caregiver dyads after transplantation. Interview themes revealed that negative family support affected caregivers' social well-being.[16] Caregivers had challenges with social reclimitization, stress reduction, relationship building, and conflict resolution.[16]

Spiritual Domain Spirituality is defined as an inherent quality of all humans that drives the search for meaning and purpose in life and involves relationships with oneself, others, and the transcendent dimension.[28,29] Hematopoietic cell transplantation caregivers often voice feelings of fear and uncertainty regarding their loved one's future and the possibility of disease recurrence and death. The ability to find meaning and a sense of purpose as an HCT caregiver can enhance the ability to cope with the challenges they face. Cancer caregiver research indicates that spiritual beliefs of the caregiver can influence his/her ability to cope, views on the meaning of life, and the ability to support the patient who also may be experiencing spiritual distress.[30] Boyle et al[16] explored HCT caregiver and survivor QOL perceptions after discharge. Using a mixed-method design, these investigators were able to survey and interview 36 dyads. Results revealed that those caregivers who were able to reorder their lives according to their personal priorities gained new insights and found they appreciated life more.[16] Their coping strategies included acceptance, staying positive, looking at life differently, setting goals, and praying. In a prospective study, examining emotional adaptation of 192 HCT caregivers' quantitative data before transplantation and 1 month after transplantation revealed that those caregivers with more spiritual connectedness experienced less emotional distress.[24]

In summary, a number of studies have provided valuable evidence on the impact of HCT on ICs. Studies reviewed identified a broad array of challenges ICs experience in all 4 areas of QOL. Physical problems included fatigue and sleep as well as cognitive changes. Psychological problems illustrated ICs struggling with depression themselves in addition to helping a depressed patient who is fearful of recurrence. Social problems were the most common and included social isolation, family tension, financial problems, and the need to develop new approaches to distributing responsibilities within the family. Spiritual distress was described as having to come to grips with the meaning of changed lives. Studies illustrated the broad impact of caregiving in transplant patients on ICs' QOL and provide direction for creating caregiver interventions that need testing and dissemination.

Concept 2: Informal HCT Caregiver Role

Relevant literature on informal caregiving of HCT patient also focuses on the role of the caregiver. This perspective was developed through studies of caregivers from a variety of chronically ill patient populations and includes 3 aspects of the caregiving role that affect the caregiver as well as the patient: the demands of care, preparedness for the role, and mutuality or the relationship between the patient and the caregiver.[31]

Demands of Care The demand of care is defined as the time spent in the tasks and behaviors that comprise the caregiver role.[32] This can vary widely across the cancer care trajectory and includes physical, social, and psychological demands. As the perceived amount of care demand increases, the potential for negative caregiver emotions associated with the experience increases. For the HCT caregiver, potential sources of stress include the life-threatening nature of the illness, uncertainty, and prolonged hospitalization/recovery, causing disruption to family and work, infection risk, complex medication regimens, monitoring for symptoms, social isolation, and HCT recipient dependency. Twenty-four HCT caregivers interviewed prior to the patient's hospitalization and 5 and 20 days after bone marrow transplantation in 1 study reported disruptions to daily routine, fear of the future, and changes in interpersonal relationships across all time periods.[14] In another study, 36 HCT caregiver-recipient dyads over a period of 1 to 6 years described continuing need to adjust because of lingering care demands after transplantation.[16]

Role Preparedness Role preparedness refers to how competent the caregiver feels carrying out this new role. Hematopoietic cell transplantation caregivers are often asked to take on this new role without fully appreciating the complexity of the new responsibilities and how this role will affect their lives. The need to support and prepare HCT caregivers for the potential stressors associated with this new role has been documented.[17] Role preparedness has been studied in terms of how acquisition of knowledge and skills might protect the caregiver from role distress when complexity of care or care demands is high. In 1 study, researchers examined patterns of HCT caregiving, relationship quality, preparedness, and caregiver role strain and rewards.[20] Fifty-two caregivers completed a quantitative survey at hospital discharge at 2, 6, and 12 weeks after discharge. Results revealed that the rewards of caregiving, defined as the extent to which the caregiver is emotionally or interpersonally satisfying, were associated with role preparedness.

Mutuality Development of cancer caregiver distress is sometimes related to mutuality, defined as the quality of the interpersonal relationship between the caregiver and care recipient.[32] Mutuality is an understudied area and a rich area for future research. Poor relationship quality between the HCT recipient and caregiver can potentially lead to a difficult caregiving situation increasing distress for both the patient and the caregiver. Poor relationship quality is also associated with caregiver tension, depression, and anger.[32] Tension within the transplantation dyad relationship has been found to be a predictor of caregiver strain.[20] In looking at how caregiving after transplantation can affect spousal relationships, Langer et al[12] studied marital dyads over a 12-month period after transplantation. Findings revealed that matched perceptions of the relationship before transplantation grew mismatched by 6 and 12 months after transplantation, with female caregivers reporting lower levels of marital satisfaction compared with patients. In another study, 28 caregivers of HCT patients who did not return to "independence" by 6 months experienced irritability and dissatisfaction, creating a source of tension and conflict within the caregiver dyad relationship.[25]

In summary, the concept of the caregiver role includes what the role entails, how prepared the caregiver is for this role, and the nature of the relationship between the caregiver and the patient. This concept provides valuable information on how aspects of the caregiver role can influence the development of nursing interventions for caregivers of HCT patients.

Concept 3: HCT IC Resources

The third concept related to the literature on caregiving of HCT patient focuses attention on the resources available to the caregiver. Resource use by the IC can potentially influence how he/she perceives the caregiver experience. Resources may be internal such as sex, age, comorbidities, caregiver personality, and caregiver self-care activities, or external such as social support, relationships, or financial security. Each of these resources can potentially influence how the caregiver perceives the experience.

Traditionally, the caregiver role is thought of as a female role (wives, sisters, and daughters); however, this prevailing trend is changing; currently, approximately 34% of caregiver of patients with chronic illness are men.[1] Among HCT caregivers, men report having more energy in comparison to women, whereas the women experience more symptoms of anxiety and depression related to caregiving.[10,12,13]

Age differences among cancer caregivers suggest that younger female caregivers are more likely to experience depression, fatigue, and mood disturbances as caregiving difficulty increases.[32] Gaston-Johansson et al[13] studied caregivers of patients with breast cancer undergoing an HCT. Correlation revealed that the lower the age, the higher the subjection burden. Age was significantly negatively correlated with subjective burden, defined as subjective response to the caregiver experience.[13] Within this study, mean age was 47.59 (SD, 10.76) years, and the range was from 25 to 72 years, where 75% of the participants were men working full time. Many older caregivers with their own healthcare issues often struggle to meet their own personal needs as well as the needs of those they care for. Currently, no literature was found on how the older HCT caregivers manage their own healthcare concerns while providing care to the HCT recipient.

Caregiver personality, the way one thinks and acts, can also influence the caregiving situation. In a study of 192 HCT caregivers, researchers examined caregiver adaptation during the acute phase of transplantation. Self-report questionnaires reveal that HCT caregivers with greater sense of personal control had a more positive adaptation and a lower level of distress.[24] Having a sense of personal control or a feeling of confidence in one's ability to manage the caregiving role can serve as a buffer, especially when taking on new tasks or dealing with very challenging situations. In another study of 11 HCT caregivers, researchers interviewed spouses regarding their caregiving experience.[33] Hematopoietic cell transplantation caregivers who were spouses of the patients (3 husbands, 8 wives) were interviewed up to 6 times from hospital admission through outpatient visits. Results reveal that spouses dealt with "living the uncertainty of transplant" through 3 strategies: rituals such as routine and structure, forming a positive perspective such as trying to keep positive in the face of adverse effects, and envisioning a future such as preparing for the future. These strategies helped manage the caregiver's internal perspective and allowed the caregiver to create a space for hope and meaning.

Caregivers often struggle with inner conflict related to attending to the needs of the care recipient while still attending to their own health needs. Although no studies were found related to HCT caregiver attending to his/her own health needs, studies of other populations are relevant. In a recent survey by the National Alliance of Caregivers, nearly 50% of caregivers who report a high burden associated with their caregiving role also rated their health as poor and reported getting less exercise than before caregiving.[34] Acton[35] examined the role of self-care behaviors on caregiver stress and well-being as compared with noncaregivers. Forty-six family caregivers of cognitively impaired Alzheimer's disease patients reveal that those caregivers who practiced self-care behaviors had less stress and improved well-being than demographically matched noncaregivers.

The ability to care for one's self is particularly important for caregivers of patients undergoing HCT because the illness trajectory is long and uncertain. In a multisite descriptive study, researchers collected data from 58 HCT caregivers regarding their psychological and social needs after hospital discharge. Caregivers reported having less leisure time to pursue social activities.[15] Williams[9] interviewed 40 HCT caregivers during HCT patient hospitalization to learn more about the concepts of commitment, expectations, and role negotiation. Findings revealed caregivers who are able to take time for self-care activities and are able to find time to reflect on their experience gain new insights into the meaning of the experience.[9] In the area of IC resources, studies have illustrated characteristics of ICs that must be taken into account in designing and testing IC interventions. These include both characteristics of the individual IC and also what family and community resources can be mobilized to help.

In summary, studies describing ICs for HCT patients illustrate multiple QOL concerns and caregiver challenges, including a lack of preparedness and the influence of the IC-patient relationship on the ability to give care. In addition, specific IC characteristics, such as age, sex, and personality and personal health ratios may influence the ability to provide patient care without jeopardizing their own status. Availability of external resources such as family and financial resources is an important influencing factor. All the areas-aregiver QOL, caregiver role, and the resources available-rovide evidence for potential differences across individual caregivers, individual patients, and unique environments. These differences point to the complexity of this caregiver experience and the resulting need for tailoring interventions to match the concerns and problems that are most important to the individual caregiver. One approach to organizing the content for such an intervention is presented in the next section.

Creating HCT Caregiver Interventions

The first step in providing interventions for HCT caregivers is to identify a caregiver's QOL, the view of the caregiver role, and the availability of resources. These aspects can be viewed as stressors or buffers. Stressors are a source of strain, for example, comorbidity, sleep disturbance, and fatigue (Figure). Buffers are a source of support or aspects of an intervention that caregivers can use to mitigate the effects of the stressor and enhance health nd well-being (Figure). Caregiver physical symptoms such as fatigue, a lack of confidence, poor challenging relationships with the patient, sociodemographic characteristics, role preparedness, financial concern, and uncertainty all have the potential to be stressors or buffers within the caregiving situation. Balancing the stressors and buffers involves timely tailored interventions that can lead to improved caregiver outcomes. For example, if an older adult has multiple comorbidities, struggles with low perceived preparedness, and has no social support network, then these are stressors in need of tailored intervention and support. In contrast, if the IC is an older adult who is healthy with a positive attitude and social support, then these attributes function as buffers to potential stressors.


Hematopoietic cell transplantation informal caregivers' quality of life stressors and buffers.

Interventions described below are designed to assist theHCT caregiver to rebalance or shift from "what use to be" to "what is" by supporting his/her ability to access and use both internal and external resources. A cornerstone of the approaches suggested within this article is an underlying assumption that success of a targeted intervention will be determined by the caregivers' ability to participate in choosing what intervention might help and determining how it will be integrated into their lives. This approach builds on the work done by Cimprich et al,[36] using a self-management program called Taking CHARGE to equip breast cancer survivors with skills and information to deal with their ongoing concerns. Results reveal that when the participants have an opportunity to identify an issue of concern, assess current patterns of behavior, and develop a plan to address the area of concern, the study participant finds the intervention to be relevant and useful to them in dealing with psychosocial and physical concerns. The work of Cimprich et al[36] highlights the importance of providing the participant choices in what the educational content will be and how it will be incorporated into their current situation.

Interventions to promote caregiver well-being can be grouped into 3 categories or modules: (1) an educational module to address caregiver mastery and preparedness; (2) a psychosocial module focusing on coping, relationship issues, and problemsolving strategies; and (3) a self-care module to promote caregiver health and well-being. Each of these modules can be used alone or in combination to support caregiver health status and QOL. A recent meta-analysis exploring the effectiveness of caregiver interventions recommends the use of multicomponent interventions to increase caregiver well-being.[37]

Implementing any or all of the modules involves creative education approaches. Increasingly, researchers and policy makers are looking for innovative ways to provide assistance to patients and caregivers using technology. Numerous caregiver studies have explored how best to implement an intervention using telephone-based, online Internet, individual, or group support. Each of these modalities offers a variety of advantages and disadvantages (Table). Each modality is designed to be caregiver focused, allowing the caregiver to access services and support on his/her own schedule. Ploeg et al[38] found that most caregivers would use telephone support offered by a professional or a fellow caregiver if available. The value of telephone interventions was echoed by Mkanta et al,[39] who identified improvements among elderly patients undergoing chemotherapy in symptom management and health-related QOL after daily telehealth interactions between patients and nursing coordinators. Planning for caregivers includes not only the proposed content, but also the modality best suited to the caregiving situation and caregiver lifestyle.

Educational Module Tailored educational interventions are designed to provide the caregiver with training for skill development or increased knowledge to prepare and become competent in providing safe care for the HCT recipient. Group education or support may assist caregivers to see that others share the same challenges they face. Individual sessions, on the other hand, might be more helpful for caregivers who cannot leave the HCT recipient or when care needs are very complex encompassing both physical and psychosocial domains of care. Educational strategies include skill development, access to and use of resources, home care/symptom management, and decision making.[11,17,40] For many HCT caregivers, the caregiving experience may be their first encounter with a healthcare system. Interventions designed to educate and train the caregiver about the ways to communicate with healthcare professionals to get answers to questions and to obtain needed resources and services can be very effective in minimizing stress.[9,18]

It is especially important that all educational materials and sessions be tailored to match the caregiver's learning style and readiness to learn.[17] Informal caregivers prefer face-to-face communication with a healthcare professional when obtaining information about diagnosis or home-care instructions in preparation for discharge.[15] Bucher et al[41] explored the benefits of a 90-minute individualized problem-solving education session with advanced cancer patients and caregivers. This teaching session occurred while patients and families were in the outpatient setting at a tertiary-care facility. Most participants felt more informed about community resources and had higher postsession problem-solving ability scores.[41]

Psychosocial Module Psychosocial interventions that are individualized and flexible and provide long-term support appear to be most effective.[42] Psychosocial interventions include teaching caregivers problemsolving and coping skills.[18] Caregivers frequently cite the need for more education and support in coping. In a study, a coping skill intervention using the family COPE model significantly improved caregiver QOL, burden of patient symptoms, and caregiving task burden compared with supportive visits alone.[43] The COPE model focuses on creativity viewing a problem from different perspectives to find solutions, optimism or the ability to have a positive attitude, planning or setting reasonable attainable goals, and expert information needed to make a decision about when to access professional help.[43] This approach to problem solving builds upon existing life experience. Session evaluations showed that participants felt informed about community resources and had improved problem-solving skills.

The psychosocial module also addresses mutuality or the interpersonal relationship between the caregiver and HCT patient, which can influence the development of caregiver stress. In a study, authors proposed interventions based on relationship strength or mutuality and preparedness targeted toward an identified deficit.[32] When caregiver-HCT recipient dyad preparedness is low and mutuality is high, offering opportunities for the caregiver to learn and build skills will increase their preparedness and support the existing high-functioning relationship. On the other hand, when preparedness is high and mutuality is low, a referral for psychological counseling offers caregivers an opportunity to recognize their own feelings and engage in self-care activities and positive experiences to reduce caregiver strain.

Another strategy that might be helpful for those caregivers who are able to express their feelings is journal writing. For some caregivers, the simple act of writing or journaling their experience offers great benefit.[44] Dellasega and Zerbe[44] offered caregivers the opportunity to participate in a pilot project using narrative writing within a support group format as a oping strategy. Participants demonstrated significant improvements in physical and mental health.

Self-care Module Hematopoietic cell transplantation caregivers in the study of Wilson et al[33] reveal that it is important to balance the "me and my world" with the "us and our world". Balancing the 2 worlds through integration of self-care strategies is a particular challenge for caregivers in light of all of the new caregiving responsibilities. Health-promotion techniques such as regular exercise, yoga, massage, eating well, and sleep hygiene offer caregivers an opportunity to focus on their own health and physical well-being.[45–47] Simply teaching caregivers to plan healthy meals is a method of self-care and provides a measure of attainable control and assists with health promotion. Regular exercise provides caregivers with a physical outlet for the stresses associated with caregiving. It also improves the body's cardiovascular, immune system, and mental well-being. Yoga, a combination of breathing exercise, physical postures, and meditation to reduce the health effects of daily stress, is the fifth most common complementary and alternative medicine technique used among Americans ( Yoga with patients and caregivers in a palliative day-care environment suggested that caregivers benefited from a restorative form of yoga.[47] Massage therapy is another complementary therapy designed to reduce stress. Improvement of caregiver physical and psychological wellbeing through relaxing with a massage has been demonstrated.[45]

Sleep deprivation or disturbance can significantly affect one's physical and emotional well-being.[22] Assessment and treatment of sleep problems associated with HCT caregiver role are critical to the caregiver's physical and emotional well-being. Offering caregivers a plan for better sleep by teaching behavioral techniques (eg, reducing external stimuli, promotion of relaxation, and adoption of healthy sleep routines) is a very effective strategy.[46] A renewed and refreshed caregiver is better able to provide care and problem solve as needed.

Assisting caregivers in learning healthy behaviors is a very effective strategy for managing stress. Jacobsen et al[48] explored whether providing chemotherapy patients a self-administered stress management program utilizing relaxation and imagery techniques would improve QOL. Findings suggested that the program reduced stress, was cost-effective, and improved QOL scores, especially mental well-being.[48] An intervention such as this might also be applied to caregivers prior to undertaking the caregiver role.

Oncology nurses can encourage caregivers to take some time during the day to go for a walk or just be outdoors. Sometimes, simply being in nature or truly present with full awareness of one's surroundings can be restorative and counteract feelings of fatigue.[49] All of these various interventions are designed to buffer the caregiver from the stresses of caregiving. They allow the caregiver to not only feel better physically and psychologically, but also appreciate and recognize the experience as meaningful.

In summary, as increasingHCT recipients survive their acute care experience, the long-term issues they and their caregivers need to face are coming to the forefront of research and healthcare initiatives. Fully understanding this experience from the caregiver perspective will enhance nurses' abilities to identify caregivers with compromised QOL and health. In 177 dyads, partners described greater fatigue and cognitive dysfunction and more depressive symptoms, sleep, and sexual problems than controls. Partners also reported 3.5 times more depression in comparison to controls and were less likely to seek mental healthcare. In addition, partners reported less social support and spiritual well-being, with more dyad relationship dissatisfaction and loneliness as well as low levels of posttraumatic growth. Modification of caregiver distress throughout the caregiving experience through the implementation of tailored interventions that provide education on caregiving activities and psychosocial support and the promotion of healthy self-care behaviors is essential in supporting long-term caregiving.


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