A study recently published in the Journal of Clinical Nursing explored the experiences of daily living and identified rehabilitation needs in patients and caregivers living with myeloproliferative neoplasms (MPNs), finding that both patients and caregivers have difficulty adjusting to life with the disease.
Previous studies have reported a high symptom burden among patients with MPNs, “but little is known about supportive care and rehabilitation for this patient group,” the authors wrote, explaining the rationale for this study.
The researchers conducted focus group interviews with 48 patients and seven caregivers who were attending a five-day rehabilitation course. Participants were interviewed in 12 focus groups and asked about their lived experiences.
The authors identified two main themes from these conversations. First, patients grieved the loss of choice and identity due to the need to prioritize energy. This reprioritization meant that patients lost freedom to choose activities. Second, they had difficulty managing the schism of being a person but also a patient.
“This changed their identity and impaired their quality of life,” the researchers observed, adding that “patients of working age seemed to struggle the most in balancing the disease, family, social relationships and work.”
Among the caregivers, participants expressed a common concern with the influence of the disease. For example, caregivers noted how the disease limited their own social lives and brought additional psychological strain and extra work. Spouses expressed that communication between their partner living with MPNs was impaired. After participating in the rehabilitation courses, patients and caregivers reported better understanding between couples and more open conversations. Other needs identified through the courses were mainly related to psychosocial support and patient education, although needs varied across patients and caregivers.
“Our findings indicate that myeloproliferative neoplasms patients and their caregivers would benefit from a combined model of psychosocial support, patient education, peer support, and rehabilitation interventions based on an individual needs assessment,” the authors concluded.