primary caregivers


Primary caregivers: What does this term entail?

Primary caregivers go about the business of offering day-to-day health care to patients, from first contact to continuing care. In other words primary caregivers are the go-to person for everything the patient needs. This specialist is a link between the patient and the healthcare system. Patients generally benefit from primary care through the services of the general practitioner or family physician, the nurse that works alongside them. In some parts of the world and cultures the primary caregiver can practice traditional medicine.

But primary caregivers aren’t always medical professionals. They are also family members of the patients, sometimes even friends. They take on special attributions that come along with the role. Besides their role as parent, child, husband, wife or child they also take on the role of caregiver for a family member. This double role is very important but can also be quite challenging from a psychological standpoint. Clinical and social observations developed certain methods and tools specially designed to help these primary caregivers in the family.

Because cancer is a condition that requires a lot of outpatient care and affects the family as a whole, informal caregiving is a very common event. One family member or sometimes a close friend of the patient takes on the role of primary caregiver. This is often a difficult task than can spread over the course of several years and can be considered equivalent to a full-time job. This role comes with significant consequences on the person’s health, psychosocial and financial well being. And, of course, there is an intimate connection between physical and psychological health.

Psychological risks of primary caregivers

In order to understand the needs and problems faced by the primary caregiver as a friend or family member we need to understand the role. Clinical observations and empirical research have shown that this role can be very stressful and may end up in burn-out. The caregiver is subjected to intense pressure over extended periods of time. Their life is filled with unpredictable and events which are impossible to control. This can take its toll on  social, professional and family life. In order to understand the nature of the mental health issues facing caregivers we need to look at the factors that are associated with depression in caregivers. One important factor that leads to depression is the patient or recipient’s behavior. The patient is often in a difficult and unpleasant position. Being in constant suffering, not knowing the prognosis of the condition, being in pain and dependent on someone else can be extremely hard to deal with. The easiest way for the person to manifest frustration is by “taking it out on” the primary care giver. The recipient will try to resist, assert their independence or “lash out” on the person closest to them. So this can be one difficulty for the caregiver, adding to the sadness, grief, fear, unpredictability, lack of time and chronic fatigue already there. These are key ingredients for depression.

Another important factor that favors depression in the primary caregiver is the recipient’s cognitive impairment. This can occur because of the illness, age, psychological inability to cope with the situation or due to medication side-effects. The care recipient’s functional disabilities are also troublesome. The loss of ability to care for one’s self is difficult to handle for the primary caregiver both on a physical and an emotional level. The duration and amount of care provided can lead to depression. Having a very demanding and stressful role for a long period of time can lead to feelings of chronic fatigue, despair and guilt. Other factors to consider are the caregiver’s age, the relationship between the caregiver and care recipient and the caregiver’s sex.

How therapy can help the primary caregiver

Psychotherapy can assist both the patient and the primary care giver with their individual needs. However the most important way to address their needs is through family therapy that aims to create a stable and cohesive environment that supports healing and healthy behavior.

Caregivers confront lots of intense negative emotions and mixed feelings like shock, anger, fear and disbelief. They also experience positive emotions associated with caring for the cancer patient. When the symptoms of the patient are lighter and tolerable the time spent together is often perceived by the caregiver as emotional and valuable. This mindset allows the care giver to experience deep love for the patient and powerful insights. The role offers the primary care giver an opportunity to feel they are doing something important, meaningful and thus experience increased self-worth.

Primary care givers are the main support for the patient and they receive little or no preparation for their role. The studies that aim to uncover methods of improving quality of life in cancer patients are extensive. For primary caregivers, however, the studies are limited despite their significant role. Existent research found that there are three types of interventions offered to caregivers. These are divided in: psycho-educational, skills training and counselling. These interventions are very helpful in reducing the burden of the caregiver while enhancing coping mechanisms. These very useful services are delivered by trained mental health professionals. But access to these resources can be limited due to the cost or the long distances between home and the centre offering these services. The idea of self-directed intervention is being taken into account and predicts interesting benefits like the opportunity to choose the content of educational material, the timing and the pace of the process or self-help. Another possibility is cybertherapy, an increasingly popular method for offering therapy.

In aiding primary caregivers of cancer patients the general practice that has proven helpful is the involvement of the whole family in the therapeutic process. In psychotherapy for families of cancer patients the general recommendation is focused and time-limited. Usually there are six to ten sessions of 90 minutes each. They have fixed dates that spread across a period of nine to eighteen months. The interventions aim to optimize cohesion, communication of thoughts and feelings, handling conflict and sharing grief under the paradigm of mutual support. The story of the disease is told in association with talking about the loss and change that are both anticipated and shared in the therapeutic process.

The therapeutic process for cancer patients and their caregivers

 Psychotherapy for families of cancer patients comprise of three main phases: assessment, intervention and final phase.

 Assessment consists of one to two weekly sessions focused on identifying issues and concerns important to each family member and on developing a plan that helps deal with the identified issues. A tool used to assess the situation in the family of the cancer patient and the coping skills is The Family Relationship Index (FRI). This tool is used by the mental health specialist in order to decide within what category the family falls. The categories are: well functioning, intermediate and dysfunctional typologies. This theoretical division is useful in planning appropriate future interventions. The assessment aims to identify the family members’ perceptions and ability to manifest cohesiveness, expressiveness and capacity to deal with conflict. Family types that are well functioning can be described as supportive. They are families that manifest very high levels of cohesion, conflict resolution skills and that show tolerance for differences of opinion. Well functioning families deal with conflict constructively through communication. Families who fall under this category show resilience and have an easier time dealing with the situation without having recourse necessarily tof family therapy. Families that show dysfunctional relationships show hostile tendencies that are manifested through high conflict, low cohesion and poor expressiveness. They tend to reject and have poor communication skills that harbor anger. These are the families that can benefit from family therapy the most due to a greater risk of clinical depression.

Intervention is typically focused on the established concerns of the primary caregiver and of each member of the family. This is done through different methods established by the psychotherapist. Sessions usually start with welcome and orientation that aims to connect with each person present. The therapist might present a summary of goals established together in past sessions. After this introduction the therapist offers a revision part that aims to uncover how the primary caregiver and the family is coping with the illness and potential grief. There is also a part focused on addressing emergent strengths and mutual support through relevant aspects of communication and conflict resolution. This is also accomplished by focusing on identifying progress made since the last session. Another important aspect is identification of challenges faced by the primary caregivers since the last session.

During the therapeutic process the therapist usually remains available by telephone with the primary caregiver and the family. If the situation requires it (situations of death or medical emergencies) the therapist will visit at the hospital or attend the funeral in order to strengthen therapeutic alliance. In the case of patient death, therapy can continue in order to accompany the grieving process.

The final phase consists of one or two sessions that are scheduled one to three months apart in which therapeutic gains are consolidated. Also there is a main concern for preventing relapse in the future. The number and regularity of the sessions are adapted to each family.

Some final thoughts on primary caregivers

The role of the primary caregiver should be understood as both a huge responsibility and the source of deep satisfaction. Caregivers are an essential and important resource in the care of cancer patients. Their role has not been given the research attention it should but more and more measures are being taken in order to provide better services for this key population. Education, counselling, psychotherapy are essential in aiding primary caregivers. The most important aspect though, is aiding them through compassion and appreciation for their very important mission.

Get more information here

Article on supportive psychotherapy for breast cancer patients

Further reading

publication 1

publication 2

publication 3


primary caregivers