Samar Aoun

Palliative care for families: remembering the hidden patients.

Families of patients receiving palliative care are profoundly affected by the challenges of the illness. They observe care that the patient receives, provide care for the patient, and receive support from health professionals in the form of information, counselling, or practical assistance. As they witness and participate in the patients care, they judge the quality of care that the patient receives. They often see themselves as the patients care advocates and may harbour regret and guilt if they believe that the patient did not have the best possible care. The illness experience profoundly affects family members psychological and physical health; recognition of this has coined the term “hidden patients.” This article briefly synthesizes empirical work that suggests how to best support families in a palliative care context. We discuss how to define the family, emphasizing a systems approach to family care. We describe the impact of the illness on the family in terms of family members health, family communication issues, psychological issues, needs for information, physical care demands, and family costs of caring.

Bereavement support for families following the death of a child from cancer: experience of bereaved parents.

Abstract This study explored the experiences and needs of nine parents who had received hospital—based bereavement support following the death of their child from cancer, in Western Australia. Six prominent themes emerged from thematic data analysis: personal grief, personal coping, concern for siblings of the deceased child, hospital bereavement support, community supports and unmet needs. Parents identified the need for more supportive contact from hospital staff during the palliative phase and following the childs death, early provision of information on how to practically and emotionally prepare for the death of their child, contact with other bereaved parents, and formal grief support for siblings. Areas for future research include exploration of parents wish to become involved in activities to help others, bereavement support for siblings, the level of contact with the hospital unit that may be therapeutically beneficial, and parental behaviors associated with accessing both hospital and community—based bereavement supports.

Factors influencing the speed of cancer diagnosis in rural Western Australia: a General Practice perspective.

IntroductionThe speed of diagnosis impacts on prognosis and survival in all types of cancer. In most cases survival and prognosis are significantly worse in rural and remote Australian populations who have less access to diagnostic and therapeutic services than metropolitan communities in this country. Research suggests that in general delays in diagnosis were a factor of misdiagnosis, the confounding effect of existing conditions and delayed or misleading investigation of symptoms. The aim of this study is to further explore the factors that impact on the speed of diagnosis in rural Western Australia with direct reference to General Practitioners (GPs) working in this setting.MethodsThe methodology consisted of a structured discussion of specific cases. GPs based in two rural locations in Western Australia were asked to identify up to eight clinical cases for discussion. A diversity of cases was requested encompassing those with timely and delayed diagnosis of cancer. Focus groups were held with the practitioners to identify which factors under six headings delayed or facilitated the diagnosis in each case. A structured summary of the discussion was relayed to a wider group of GPs to seek additional views or comments on specific factors that impact on the speed of cancer diagnosis in rural and remote locations in Australia.ResultsA number of factors affecting the speed of diagnosis were identified: the demographic shift towards a frailer and older population, presenting with multiple and complex diseases, increases the challenge to identify early cancer symptoms; seasonal and demanding work patterns leading to procrastination in presenting for medical care; unhelpful scheduling of specialist appointments; and the varying impact of informal networks and social relationships.ConclusionWithin the limitations of this study we have generated a number of hypotheses that require formal evaluation: (1) GPs working within informal professional and social networks are better informed about their patients health needs and have an advantage in making early diagnosis; (2) Despite the other differences in the population characteristics decentralising services would improve the prospect for timely diagnosis; and (3) Careful coordination of specialist appointments would improve the speed of diagnosis for rural patients.