Empowerment Through Information: Supporting Rural Families of Oncology Patients in Palliative Care

Abstract

A research project examining the support needs of families caring for a relative in palliative care was conducted in New South Wales in 1997. Data were collected from 19 families and 10 specialist palliative care nurses from eight centres throughout New South Wales using audio-taped interviews. The findings show that information was one of the most important support needs for families to enable them to effectively care for their sick relative. The information provided needed to meet the individual and varying needs of families at different stages of their palliative care journey. Often the families described not knowing what their information needs were until a crisis occurred. Lack of information on a range of areas, from practical resources to providing physical care and managing medications, was problematic. Health professionals need to take responsibility in determining if families are aware of the information available, identify the most appropriate medium for this material and provide it at the pace and time wanted by the individual family.

Patients’ and relatives’ complaints about encounters and communication in health care: Evidence for quality improvement

“…Studies have demonstrated the importance for relatives of dying patients to be given sufficient information about the patient's situation, to be involved in the patient's care and to be offered support for their own difficult situation [34][35] Eriksson & Lauri [36] pointed out that relatives' need for information was greater than their need for emotional support, which also emphasizes the importance of communication goals [6,7]. Insufficient acknowledgement was described by patients in terms of insufficient respect and not being seen as a unique person.…”

“…(patient, report 34) A patient visited an out-patient clinic to perform a test before he was going to receive a certificate, describes the experience in this quotation. Furthermore, relatives experienced lack of emotional support when they were in a crisis situation because their next-of-kin was seriously ill or in a palliative phase.…”

Review of the literature on the effects of caring for a patient with cancer

“…FCs report that they feel inadequate when they fail to meet the high standards they set for themselves. Those Information was one of the most important support needs for FCs of cancer patients [60][61][62][63][64][65]. FCs felt they were responsible for gathering information about the disease [61], and described becoming researchers, emphasizing the benefits of and necessity for being informed caregivers [66].…”

“…Often the FCs described not knowing what their information needs were until a crisis occurred. When information was not provided by the clinicians, FCs felt frustrated and helpless [65].…”

“…FCs want detailed and specific information tailored to their unique situations as FCs, and to their social and emotional needs at different stages of their cancer care journey, as well as to the physical care needs of their patients [62,65,69,70]. Information was needed in order to be prepared for caring [65].…”