WeCare PhD candidate Carmen Quiñoa presents her thesis
A PhD student from our research group, Carmen Quiñoa, presented her thesis Experiences of primary carers of patients with multiple myeloma about the needs that arise during the process of illness: a qualitative study.
This thesis was supervised by Dr. Josep Porta Sales, Dra. Mª Dolores Bardallo Porras and Dra. Montserrat Edo Gual.
The thesis committee was made up of Dra. Cristina Monforte Royo (Universitat Internacional de Catalunya), Dr. David Gallardo Giralt (ICO Girona) and Dr. Christian Villavicencio Chávez (Caredoctors).
Multiple myeloma remains an incurable disease, though patient survival has been improved thanks to the introduction of new treatment schemes. In any case, the symptoms experienced as a consequence of the disease or of the administered treatments have an important impact upon patient quality of life. The disease process continues to generate multifactorial and varying problems that result in an often unpredictable clinical course characterized by continuous exacerbations, the need for intensive treatments, physical deterioration and a poor prognosis – these being situations that affect both the patients and their caregivers. The caregivers of multiple myeloma patients may have physical, psychological, social and spiritual needs that when left unattended can affect patient wellbeing.
Few studies have examined the specific needs of the main caregivers of multiple myeloma patients. Given the special conditions of these patients, we consider that a more in-depth evaluation of the caregiver needs is required, with a view to establishing interventional measures and support for both caregivers and patients throughout the disease process.
The present study describes the experiences and needs of the main caregivers of multiple myeloma patients.
In order to ensure in-depth evaluation of the subject, we adopted a qualitative design, conducting an interpretive, hermeneutic phenomenological study with data collected from in-depth interviews with the main caregivers of multiple myeloma patients that reported for follow-up visits during the disease process. The final sample consisted of 12 participants. The data were collected between January – May 2015, and were analyzed following the 7-step strategy proposed by Colaizzi. The Atlas-Ti version 7 application was used as support for data collection and classification.
The main findings reveal an initial impact upon the main caregivers due to the difficulties and lack of knowledge of the disease, as well as the need to adapt to complex care logistics. The participants described a need to provide unconditional care, where the caregiver acts as fundamental support for the patient – this being accompanied by an important emotional impact and spiritual suffering. These topics and sub-topics in turn are conditioned by a continuous sensation of uncertainty for the caregiver that increases or decreases depending on the circumstances. Thus, appreciation of the attention received from the professionals helps lessen uncertainty and increase coping capacity, while failure to release emotions increases uncertainty and affects the coping capacity of the main caregiver.
In conclusion, the main caregivers of multiple myeloma patients have many and important needs, and health professionals must be aware of them in order to afford adequate, holistic and quality support for both the patient and caregiver. In this regard, multidisciplinary efforts have a positive impact upon the main caregivers, who appreciate the attention received by the professionals. However, further studies are needed to improve our knowledge of the uncertainty experienced by the main caregivers of multiple myeloma patients, since uncertainty seems to be one of the elements causing the strongest impact and emotional deterioration among caregivers, affecting both their capacity to cope with the situation and the quality of the care provided.