An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care. Caregiving is defined as the processing of assisting someone who cannot care for themselves, which includes physical, mental, emotional, social, and spiritual needs. Due to the typically late onset of cancer, caregivers are often the spouses or children of patients, but may also be parents, other family members, or close friends.

Taking care of family members at home is a complicated experience. The relationships involved constantly shift and change, in expected and unexpected ways. The expected or expected changes can negatively affect physical health, emotions, social life, and spiritual well-being of the caregiver. Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment. This support includes: Physical support: management of side effects and late effects of treatment and assistance with personal tasks such as bathing. Emotional support Financial assistance: helping cover the expenses associated with cancer treatment Practical assistance: treatment monitoring, assistance with decision making and assistance with non-personal tasks such as grocery shopping Spiritual support

History With medical advances in cancer screening and treatment, cancer has become a chronic rather than an acute disease with the result that patients survive longer with cancer. As a result, there has been a push towards outpatient care in recent years. Consequently, informal caregivers are now taking on the responsibility of caring for a loved one with cancer. Informal caregivers have become so essential that they are estimated to provide an average of 55% of the care needed. For years, research has been reporting the physical, psychological, financial, social, and spiritual repercussions of cancer on the patient. With the discovery of the distress, particularly psychological, that cancer could cause in patients, researchers also began to investigate whether caring for someone with cancer could have similar effects on informal caregivers. Over the years, many stressors have been identified and the effects of caring for a loved one with cancer are becoming well documented. Research in this area is continuing not only to better understand the caregiver's experience, but also to learn how their adjustment to the caregiver role impacts their ability to provide care to the cancer patient.

Psychological repercussions

Patient-caregiver differences Cancer patients and caregivers are psychologically affected by cancer, however the way it affects them differs in many respects. Both patients and caregivers report significant unmet needs in the areas of managing daily life, emotions, and social identity. Studies Indicate that patients are less concerned with these daily life issues than their caregivers. Caregivers may be more concerned with these daily life issues because they are neglecting their own needs in order to improve the care of the patient. Men and women may have different perceptions of the cancer and its effects depending on their role as either the patient or the caregiver.

Phases of the cancer trajectory Many researchers and clinicians have divided the cancer trajectory in order to explain the changes that occur to the patient and caregiver at various points throughout the cancer trajectory.

Initial or acute phase The initial or acute phase encompasses the time of diagnosis. A number of stressors can lead to caregiver psychological distress with the diagnosis of treatment. At this point in the trajectory, the most salient psychological outcomes revolve around fear, uncertainty, sadness and feelings of powerlessness or helplessness. Additionally, in studies where cancer recurrence was not evaluated, caregivers report the highest levels of anxiety and post-traumatic stress symptoms during this phase. Caregivers are often frightened and upset by the diagnosis of their loved one, but they have an additional responsibility of trying to support the patient as they go through this difficult time. In the process of providing support, caregivers are often overlooked and have no one to turn to with their own concerns. This period is full of uncertainty, with both the patient and the caregiver not knowing what to expect in terms of treatment, recovery, and overall outcome. This can lead to significant psychological distress for some caregivers.

Chronic phase The chronic phase encompasses the treatment for cancer. Along with the psychological repercussions typical of the initial phase, many other psychological outcomes become relevant as the patient undergoes cancer treatment due to a number of additional stressors that the caregiver must deal with. These additional stressors may cause "intrapsychic strain, such as guilt or changes in the caregiver's self-concept" (Haley, 2003, p. 153). For a minority of caregivers, they may meet the criteria for a psychiatric diagnosis, typically of depression or an anxiety disorder. But for the majority, any distress they experience does not reach clinically diagnosable levels, although they may exhibit depressive symptoms. Currently, it remains uncertain how levels of psychological distress change with time. Some studies report that psychological distress decreases over time, but others report that it increases. This increase may be a result of caregivers neglecting their own needs while caring for the patient. For some, this emotional repression may lead to feelings of resentment towards the patient. At this point of the trajectory (and ongoing), caregivers may also begin to exhibit symptoms of burnout due to the increased work-burden of caring for someone with cancer. There are many physical and emotional components to burnout. Caregivers may also experience compassion fatigue. In family caregivers, compassion fatigue has been linked to heavier caregiving demands (more than 25 hours per week), limited support systems, and higher caregiver burden. Compassion fatigue is also common in nurses, especially in specific medical environments such as intensive care and oncology. Interventions such as increasing peer and family support as well as improving coping skills have been shown to reduce compassion fatigue. Amongst the emotional components, caregivers may experience frustration, anger, depression, resentment and insecurity.

Resolution phase The resolution phase encompasses the completion of treatment, but there are a number of directions that the cancer trajectory can go from this point. For some families, resolution may consist of the movement into palliative care and bereavement. For others, this may involve a transition into survivorship, where the patient may go into remission or may experience cancer recurrence. Caregivers may experience the same fears, uncertainties, burnout and feelings of guilt or sadness as caregivers in the previous stages. However, depending on the path that the family experiences after treatment, there are additional psychological repercussions for caregivers.

Palliative care and bereavement Palliative care is an especially demanding task for cancer caregivers than less progressive cancer because the care required for those with terminal cancer tends to be more demanding. Caregivers in this situation often report high caregiver burden lasting the entire period. Caregiver distress also tends to increase as patients progress through this phase, causing a lower caregiver quality of life. In some instances, caregivers even report higher levels of distress than the patient during this phase. Having a difficult time with caregiving increases distress caregivers face as they enter the bereavement period after the death of their loved one, whereas finding meaning in caring for their loved one may relate to better long term adjustment for caregivers. Before bereavement, loved ones often face anticipatory grief, where they mourn and prepare for the loss of their loved one. Families often react with fears of abandonment, anxiety, hopelessness and helplessness, and an intensified attachment to their loved one. Upon the death of their loved one, caregivers typically experience grief, which in a minority of cases may be complicated by a diagnosis of Major Depressive Disorder later in the grief process. Some caregivers experience unresolved grief, which can lead to Prolonged Grief Disorder (PGD), which is included in the eleventh edition of the International Classification of Diseases and the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. In a 2022 meta-analysis, the prevalence rate of Prolonged Grief Disorder in families experiencing bereavement due to a member with cancer was estimated at 14.2%. Differences in the prevalence of grief disorders among bereaved familial cancer caregivers shows evidence for higher rates of PGD in females, those with a religious affiliation, spousal caregiving, and coping with death from neurological cancer. Females and spouses commonly experience higher burdens from caregiving, as evidence has pointed to them providing more direct care in cancer caregiving. Psychological predictors of poor adjustment to grief include anxiety, depression, psychological distress, demoralization and anticipatory grief symptoms. Pre-loss grief in cancer caregivers, which refers to feeling grief prior to the death of the patient, has been linked to higher prolonged grief rates. Feeling prepared for the death of the patient has also been linked to grief disorders, as unpreparedness has been shown to be associated with prolonged grief and major depressive disorder. A 2024 systematic review, which analyzed bereaved Taiwanese family members involved in cancer care, found that preparedness for death could be related to higher rates of complicated grief. Conversations between the caregiver and healthcare staff on how to better prepare for the impending loss have been shown to be predictors of better adjustment in grief disorders. The caregiver's relationship with the patient pre and post cancer diagnosis has been shown to impact bereavement adjustment. Factors such as, communication problems with the patient and family, ambivalent or dependent relationships with the deceased loved one, family tensions, and difficult decision making, have been shown to impact grief adjustment. Depression and PTSD can be a greater concern for caregivers with unresolved tensions with their loved one, whereas stronger bonds during the palliative phase seems to be related to a healthier transition into bereavement for the caregiver.

Survivorship