Social work in a stem cell transplant unit

Avril de Beer tells us more about stem cell transplants and the role of the social worker in a stem cell transplant unit.

What does a stem cell transplant involve?

Stem cell transplantation is a complex procedure that involves the transfer of stem cells harvested either from the patient (autologous) or a matched donor (allogeneic). The process can last several weeks and involves a prolonged period of isolation in hospital. 

Stem cell transplants are indicated for patients with acute leukaemia (with high-risk cytogenetic markers); multiple myeloma; certain malignant blood disorders, such as myelodysplastic syndrome; and bone marrow failure syndromes.

The role of the social worker

As a member of the multi-disciplinary team, which consists of clinical haematologists, senior medical officers, dietitians, physiotherapists, and a psychologist, the social worker counsels stem cell transplant patients and their families from diagnosis to survivorship, or end of life. 

An important part of their work involves assisting patients with the psychosocial issues that they face after diagnosis, during treatment, and during recovery. These issues may include financial difficulties, assistance with temporary disability applications, and helping patients to get a will and advance directive in place.

People with haematological malignancies have significantly higher rates of hospitalisations and intensive care unit admissions than people who are diagnosed with solid tumours. It’s therefore important to prepare patients properly for high-dose chemotherapy, their stem cell transplants, and the lengthy stays in hospital. 

At family meetings, the social worker gives patients and their families detailed information about their hospitalisation in an isolation ward, the stem cell transplant process, post-transplant care, and post-transplant follow-up appointments. When a patient receives stem cells from a family member (related donor), the social worker counsels the donor to prepare them for a process that can be stressful.

A diagnosis of acute leukaemia and the concomitant intensive treatment and long-term hospitalisation affect patients in many ways. Patients experience a loss of control, as most decisions are made by the medical team in the patients’ best interest. 

As the patient advocate, the social worker ensures that the patient’s voice is heard and they are included in the decision-making process.

The link between families and medical team

Patients experience intense feelings of isolation whilst being hospitalised for treatment, especially since the outbreak of the COVID-19 pandemic when visiting hours were stopped. At present, visiting hours are restricted to one visitor for an hour per day. Patients long to receive emotional support from their family. Although patients and their families can keep in touch by means of telephone or video calls, they miss physical contact with their loved ones. The most important social support for stem cell transplant patients comes from their families. Family members may experience distress similar to the distress experienced by patients. It’s therefore important to support families and to provide them with the necessary information. The social worker serves as the link between families and the medical team, giving information and feedback when necessary.

Post-transplant care

Undergoing a stem cell transplant is a life-changing event. Full recovery requires more than a year for most survivors. Grief is a normal emotion after going through a life-altering experience, such as a stem cell transplant. Patients may experience temporary or permanent loss of their jobs; an interruption or discontinuation of their studies; loss of identity; and relationship problems due to a change in roles. Patients fear relapse of their disease. The social worker provides post-transplant patients with the necessary information to deal with this fear.

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