Social workers’ views on the impact which a terminal illness diagnosis has on the family

Abstract

This study aimed to experience the impact of a terminal illness on the family members of the patient. It investigated the negative effects that a life-limiting disease put on the carers of a terminally ill patient. Interviews with six social workers, working with terminally ill patients and their families, were conducted. The interviews were then transcribed and analysed using the thematic analysis approach. The participants were asked questions regarding the time it usually takes for patients and families to acknowledge the diagnosis, the long-term needs after the diagnosis, the services offered, and other professionals involved in the care of the patient and the family even after the patient’s loss. Hence, it addressed a terminal illness journey from the point of receiving the news, until post-death. It was found that within Maltese society, it is common for patients to be accompanied by their family members when given the diagnosis. Terminal illness has a strong impact from the point of diagnosis which often provokes feelings of shock but which may also confirm their suspicion. The findings show that on a longer-term basis, various aspects of a patient’s and family life are impacted by a terminal illness. These include emotional stability. Relatives often experience fear, anxiety, helplessness, sadness, overburden, anticipating grief, and have higher chances of developing a mental illness, like depression, PTSD, and anxiety disorder. Their life centres around the patient, and social activities are relatively decreased. They tend to feel guilty going out and prefer to spend their time with the ill relative. Many families also experience, a decrease in income, and this is due to the possibility of the patient having to leave work, and social benefits being very limited. In cases where there are children involved, they feel the responsibility to help their parents, and this can be a detriment to their own educational attainments. The social workers’ role is crucial at this point, as they offer emotional and practical support. With regards to emotional support, they make sure that they validate their clients’ feelings, and show that they are actively listening. On the other hand, practical support refers to the aid that social work professionals give to their service-users, when it comes to specialised equipment, filling in benefit applications, and referrals. The findings outlined the different services that cater for terminally ill patients and their families. These were found to be managed by different agencies, some of them which where state funded like services offered at Sir Anthony Mamo Oncology Centre (SAMOC) and the social security department, and others that were non-governmental organisations (NGOs). The most renowned amongst these are the Malta Community Chest Fund Foundation, Puttinu Cares, and Hospice Malta. My results highlight the importance of focusing on the burden of care of the family members. This needs to be done by having all the professionals utilize the holistic approach. Though services are being provided, one needs to be aware of the lacunas that are generated by these services, like not meeting the eligibility criteria, long waiting lists, amongst others. It was concluded that there needs to be more awareness on how these services can be improved to meet the needs of the patients and their relatives.