The results of a qualitative interview study revealed that primary family caregivers of patients with multiple myeloma experienced an overarching feeling of “intense uncertainty.” The research was published in Palliative Medicine.
It has been estimated that approximately 10% of patients with hematologic cancers have a diagnosis of multiple myeloma. Although newer treatment have extended survival for these patients, the disease is characterized by remissions and relapses and remains incurable. While family caregivers play critically important roles in the care of patients with multiple myeloma, information on the impact of caring for a family member with this disease is very limited.
The study was conducted in Spain between January 2015 and June 2015 and included 12 family primary caregivers of patients with multiple myeloma older than 18.
In-depth, semistructured interviews were conducted with each study participant. Questions were open-ended and covered 6 areas including: the experience of caring, physical needs, social needs, emotional needs, spiritual needs, and perception regarding health care professionals. All interviews were recorded and transcribed.
Study findings showed the emergence of 4 main themes: a new life and adapting to the disease, which included initial shock and difficulties reaching a diagnosis; commitment, related to challenges associated with providing unconditional support; the emotional sphere, involving associated fear and anxiety, and difficulties finding meaning in the disease and expressing feelings; and experiences in relation to the care and support received, such as the importance of relationships with health care professionals and support from friends and family. Uncertainty was identified as “a core overarching theme.”
“By identifying the specific needs of these caregivers, it will be possible to develop practical initiatives, targeting both health-related and logistical aspects of care, so as to support them in their role,” the authors concluded.
Quiñoa-Salanova C, Porta-Sales J, Monforte-Royo C, Edo-Gual M. The experiences and needs of primary family caregivers of patients with multiple myeloma: A qualitative analysis [published online February 14, 2019]. Palliat Med. doi: 10.1177/0269216319830017