An informal or primary caregiver is an individual in a cancer patient's life that provides unpaid assistance and cancer-related care.
[1] Caregiving is defined as the processing of assisting someone who can't care for themselves, which includes physical, mental, emotional, social, and spiritual needs.
[2] Due to the typically late onset of cancer, caregivers are often the spouses and/or children of patients, but may also be parents, other family members, or close friends.
[2] Informal caregivers are a major form of support for the cancer patient because they provide most care outside of the hospital environment.
[6] For years, research has been reporting the physical, psychological, financial, social, and spiritual repercussions of cancer on the patient.
Both patients and caregivers report significant unmet needs in the areas of managing daily life, emotions, and social identity.
[10] 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.
At this point in the trajectory, the most salient psychological outcomes revolve around fear,[1][13] uncertainty,[5][13] sadness[13] and feelings of powerlessness or helplessness.
[1][13] Additionally, in studies where cancer recurrence was not evaluated, caregivers report the highest levels of anxiety and post-traumatic stress symptoms during this phase.
[14] 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.
[4] 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.
[9] 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.
[19] The caregiver's relationship with the patient pre and post cancer diagnosis has been shown to impact bereavement adjustment.
[17] As patients and caregivers enter the survivorship period after the completion of primary treatment, they often feel uncertain and overwhelmed by what lies before them.
In contrast, some caregivers report lower levels of strain in recurrence than with the initial cancer, presumably because they had adapted to the stress of chronic illness.
These include: headaches, insomnia, backaches, lethargy, lingering colds, gastrointestinal upset, and cardiovascular problems.
[9] Other reported physical repercussions of caregiving include: impaired immunity,[1][9] high blood pressure,[1] and arthritis.
[4] For most ill patients and their spousal caregivers, scores of marital satisfaction tend to be very similar to the normal population.
[32] It's widely known that women play significant roles in health by being primary caregivers, for their families and working in healthcare, both formally and informally.
[2] Women who care for their spouses often feel overly responsible and may sacrifice their own needs more than men in similar roles.
[34] Among women, this may be explained by the finding that younger female caregivers tend to perceive demands on their time due to role strain more negatively.
[35] Role strain tends to be more severe for later middle age caregivers due to their many responsibilities with family and work.
[33] This is because the caregivers are at higher risk of experiencing social isolation, career interruption, and a lack of time for themselves, their families and their friends.
Individuals of lower socio-economic status may experience the increased burden of financial strain due to the expenses involved in cancer care.
[1][4][5][29] There are many types of interventions available for cancer caregivers including: educational,[4] problem-solving skills training[1][4] and grief therapy.
[1][4] Family-focused grief therapy has been shown to significantly improve overall distress levels and depression in those affected by cancer.
[19] Likewise, interventions that increased patients general knowledge about their specific disease have been reported to reduce anxiety, distress and help them take a more active part in the decision making process.
[29] Interventions by members of the healthcare system designed to teach caregivers proficiency in both the physical and psychological care of patients have been shown to benefit both partners.
Studies have found that within the cancer caregiver population, strong predictors of post-traumatic growth are: less education, being employed, or displaying high avoidance tendencies pre-surgery, and framing coping strategies in a positive style.
[42] Furthermore, individuals who engage in religious coping or have high perceived social support are more likely to report post-traumatic growth.