Family members—not health professionals—are the primary providers of patient-focused care in the United States, according to Deborah Boyle, MSN, RN, AOCNS®, FAAN, from Advanced Oncology Nursing Resources in Phoenix, AZ. “There is an unrealistic expectation that families can enact their caregiving role with no training and ongoing support,” she said during her session presentation for the 46th Annual ONS Congress™ on April 20, 2021. Oncology nurses have a responsibility to identify at-risk families that may face multiple challenges in providing care so they can prepare those families with additional resources and support.
Find the Obstacles
Obvious challenges, such as inability to take off work or drive a patient to appointments, are straightforward to identify, but nurses may need to use tools to uncover hidden or underlying barriers to caregiving. Boyle uses a construct called ASCOT in her practice:
- A = At-risk factors (degree of emotional distress, nature and extent of caregiver expectations, the relationship with the ill person, and safety concerns)
- S = Support (who’s providing support and their availability and competency for the role)
- C = Communication style and family norms
- O = Options (any other available support)
- T = Team (people and programs to aid caregivers in their role)
Develop a Plan
Because of the wide variety of patients and family situations, each patient caregiver needs to have a tailored plan. This plan can only be developed with assessment, not by making broad assumptions. For example, although a primary support person may appear to be competent and available, other, less obvious, issues may be at play, such as the presence of conflicting responsibilities, disagreements about goals of care, or misunderstandings about what is helpful. Caregivers often are dealing with their own life, and the only way fully assess a situation may be through a home visit.
Probe for Particulars
Ask caregivers, “What would help you the most to reduce your worry about your family member during treatment?” Follow up with clarifying questions to delve deeper and uncover additional needs. Boyle shared a case study in which a nurse identified and addressed challenges for three caregivers:
- A daughter was worried about not having enough information about her father’s treatment because she lived in a different city. The nurse provided a summary of the treatment plan, potential toxicities, team members’ contact information, and recommendations for side-effect management.
- The same man’s college-aged grandchildren wanted to check in his well-being, so the nurse sent them pictures of the patient with his treatment team.
- The family also had concerns about his transportation for appointments and medication adherence. The nurse found friends in the neighborhood who were willing to help.
Children Are Caregivers, Too
Suzanne Berg, BS, CCLS, from Froedtert Hospital and Medical College of Wisconsin in Milwaukee, said that when children have information and understand what to expect, they can more openly express their feelings and develop healthy coping skills. She recommended encouraging children to participate in activities like doctors’ appointments and memory-making activities.
Children should be prepared to understand that “grandma looks different” or that “grandma may not be coming home.” Berg said that giving information and honest answers in an age-appropriate manner helps children to understand what they are seeing. Withholding information from children because of beliefs that children may be too young to know what is going on or “they are resilient” causes them make conclusions on their own and may lead to coping issues later in life.
Nurses can also consult with child-life services. Although primarily used in traditional pediatric settings, this resource can offer support for children and grandchildren of patients with cancer in adult settings.