Factors to Consider in Caregiver Assessment
To be effective, caregiver assessment should take into account what the caregiver is able and willing to provide. Gender stereotyping may lead the oncology team to assume that women are more able to perform tasks such as wound dressing, feeding, bathing, and wheelchair manipulation, but this is not always the case. Caregiving may be influenced by gender and by the expected caregiver roles within a family unit. A meta-analysis of 84 studies of caregiver burden found that spousal caregivers were more distressed than other caregivers and that women were more distressed than men. The reasons for gender differences may include the following:
- Women tend to perform more personal care tasks.
- Women are more likely to assume the primary caregiver role.
- Women are less likely to obtain formal help.
- Women are more likely to experience cultural and social pressure to become caregivers.
Ideally, caregiver burden should be measured in the clinical and research arenas with a multidimensional, valid, reliable, and clinically relevant tool (see table below). However, most tools measure objective or subjective burden rather than both types simultaneously. Objective measures of caregiver burden comprise variables such as the number of hours spent providing care or the actual count of tasks the caregiver performs.[Level of evidence: II] Objective measures are usually short and easy to answer, often pointing to a clear direction for problem solving and direct intervention.
Instruments for Evaluating Caregiver Burden
|Reference Citation(s)||Instrument Name||Description|
|||Brief Assessment Scale for Caregivers (BASC) of the Medically Ill||14-item rating scale measuring burden and quality of life, plus 8-item subscale measuring negative personal impact|
|[8,9]||Caregiver Quality of Life Index—Cancer (CQOLC) Scale||35-item rating scale measuring physical, emotional, family, and social functioning burden|
|||Caregiver Reaction Assessment (CRA)||24-item rating scale measuring burden in self-esteem, lack of family support, finances, schedule, and health|
|||Caregiver Strain Index (CSI)||13-item rating scale measuring employment, financial, physical, social, and time constraint burden|
|||Zarit Burden Interview (ZBI)||22-item rating scale measuring burden in health, psychological well-being, finances, social life, and relationship with patient|
|||CareGiver Oncology Quality of Life questionnaire (CarGOQoL)||29-item rating scale measuring psychological well-being, burden, relationship with health care, administration and finances, coping, physical well-being, self-esteem, leisure time, social support, and private life|
|||Care of My Child with Cancer (CMCC)||28-item rating scale measuring caregiving tasks for a child completed by family members|
Caregiver strain, an evolving term, occurs when caregivers perceive difficulty in performing their roles or feel overwhelmed by their tasks. Also known as subjective burden, this term is used to describe the emotional reactions that may accompany caregiving. Anxiety, worry, frustration, and fatigue may contribute to caregiver burden and strain and may not be visible to members of the treatment team.