Managing Family Expectations as a Cancer Caregiver

When your loved one is diagnosed with cancer, everyone’s world is turned upside down. Understandably, the cancer patient becomes the priority – their needs, their treatment, their worries, and their journey. As the caregiver or loved one of the patients, when it is quiet and you can begin to process the diagnosis, the questions begin. “How do I help them? What do I say? What can I do?” It can seem overwhelming; however, there are some basic tips that may be helpful to manage communication gaps and navigating expectations among the family.

Managing communication among the patient’s circle

Bladder cancer is more than a disease, and learning to live with it is not easy to understand or navigate for anyone involved. For the patient, it is challenging to inform other family members of important information about treatment plans, side effects, and prognosis. Different individual patient circumstances can impact treatment choices and explaining that information to everyone in the patient’s family circle can be very hard. Also, if the circle of those impacted by the patient’s diagnosis widens, sometimes the communication issues get larger. Designating a key person to be the “informant” may help to reduce these communication issues. The informant will be responsible for communicating necessary information and updates to the family as needed. This informant role can also help alleviate the strain on the patient and likely will be more effective in managing the flow of information.

The broad impact of a metastatic diagnosis

When patients are speaking to their care team and are told of the diagnosis of bladder cancer, the entire family unit is faced with a diagnosis that likely will impact daily routines and roles for everyone involved. Often times, worries about the future, changing abilities, treatment-related side effects, and how these side effects may change the daily routine are not discussed until a crisis erupts. This means the family needs to make decisions and navigate difficult situations while under additional stress. What can be done to improve this? Let’s look at some of the styles of communication and determine how we can use these styles to improve how patients, families and the patient’s care team can work and build new helpful communication skills.

Family caregiver communication tool

Family Caregiver Communication Tool (FCCT) is a new measure for tailoring communication with cancer caregivers that was created by Wittenberg et al 2017. The goal of the FCCT is to determine a specific caregiver type so that clinicians can tailor their communication with caregivers and measures communication patterns dependent on 2 dimensions, conversation, and conformity. In evaluating this tool, they concluded there are four types of caregivers with associated communication characteristics and patterns. Based on the data they also came up with suggestions as to interventions a provider could use to engage with the caregiver to improve patient care. The 4 types of caregiver roles are:

• Manager
• Carrier
• Partner
• Loner

Manager

The manager is highly involved in conversations and demonstrates credibility by using medical terminology. The Manager is typically focused on treatment. They often act as the family decision-maker and makes decisions swiftly and independently.

The approach with this type of caregiver should be to utilize medical terminology to complement their use of medical terms. Also, one-on-one meetings with other family members should be conducted to ensure engagement of all family members. In addition, it is important as part of the care team’s communication to ask the Manager what they are worried about.

Carrier

The Carrier relies on the patient to make treatment and care decisions and often avoids talking about death or anything other than a cure. The Carrier also tends to overdo caregiving tasks and while they avoid discussing caregiving tasks with other family members, they are comfortable to discuss discussing tasks with others outside of the family.

The communication approach with the Carrier should be to explain and advocate for support resources to help relieve caregiver stress. Also, to address the caregiver burden, the care team should ask, “what have you done for yourself today?” Other family members can also ask this question of the Carrier.

Partner

The Partner accepts caregiving assistance from other family members, engages in discussions of quality of life, spirituality, etc. and includes others in important decisions. The communication approach for Partners should focus on education, use medical words, and the “teach-back” approach. As part of a care team’s regular communication with a Partner, they should be asking, “what do you need from the team?”

Loner

The Loner performs most tasks themselves specifically focusing on physical tasks. They often try to avoid quality-of-life discussions. The communication approach with this personality should be to use plain language and pictures to address health literacy. The care team should be sure to ask the Loner “what gives you hope?”

Understanding caregiver styles

It is also important to note that caregivers in your family could be in different stages at different times during illness and different family members could exhibit different styles. Working to match the communication approach to the style the patient and/or family may help to reduce barriers and improve care. The very nature of bladder cancer implies that there will be emotional, uncertain and variable situations that often can impact not only the provider/patient communication but the patient and family’s communications.

Cultural and other communication considerations for oncology care teams

It can also help to improve communication when providers are sensitive to cultural considerations and their understanding of different views and opinions due to ethnic or cultural background, sexual identity or orientation, and literacy levels to better meet the needs of the patients and families. By meeting the patients and their families where they are and looking at things from their perspective, it is typically easier for providers and care teams to communicate more effectively and efficiently when discussing difficult subjects and during times of high emotions and stress. Furthermore, it can be helpful when critical health information is discussed, and important decisions need to be made quickly. Providers should ensure they are doing what is necessary to improve communication, including the “teach-back” method to clarify messaging and understanding when necessary. Sharing what type of communication is most helpful to your family (speaking, drawing a picture, etc.) and informing your loved one's healthcare team of any cultural consideration can help make your interactions smoother.

In addition, here are some other potential tools that providers and caregivers can use. Modifications can be made as needed based on individual situations.

• Ask for definitions or clarity of what information is being presented. Questions like, “What I hear you saying is...is this correct?” “Can you repeat that again in a different way to ensure I understand what you are saying?” These types of questions may help to minimize misunderstandings.
• Employing interpreters when necessary can increase patient and family understanding regardless of the language of origin. Many hospitals and health care centers have interpreters readily available.
• Find ways to re-frame your own or your family’s thinking and worries about “bad stuff.” Consider the “bad stuff” as “getting clearer about potential challenges to have a better plan.”

Employing these strategies can help patients, their families, and providers get a better handle on communication, which can help everyone cope and manage better when living with bladder cancer.