Experiences of carers of youth, adult children and spouses with ME/CFS.

OBJECTIVES: The debilitating nature of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) means that family members often take on a caring role. This study compared the experiences of people caring for three groups: youth, young adults, spouses. METHODS: An opportunistic sample of 36 carers completed an online survey of open-ended questions asking about their experiences. Thematic analysis was used to consider the three sets of responses separately and Thematic Comparison was used to identify points of connection and disconnection across the sets. RESULTS: The themes identified were very similar to those identified in past studies. Two super-ordinate themes were identified: "Lack of knowledge and understanding" and "Holistic Impact". Though most sub-ordinate themes were evident across all three groups, important differences were found. The sub-ordinate themes "Caring Blindly", "Emotional and physical health cost", and "Impact on the whole family" were more evident amongst carers of youth while the theme "Worry for the future" was more evident from carers of young adults and spouses. DISCUSSION: Differences seemed to be related to both the time since diagnosis and the life stage. A longitudinal study would help to understand how carer experiences change over the life course of caring for someone with ME/CFS.

Cancer care decision making in multidisciplinary meetings.

Little research has been undertaken on the actual decision-making processes in cancer care multidisciplinary meetings (MDMs). This article was based on a qualitative observational study of two regional cancer treatment centers in New Zealand. We audiorecorded 10 meetings in which 106 patient cases were discussed. Members of the meetings categorized cases in varying ways, drew on a range of sources of authority, expressed different value positions, and utilized a variety of strategies to justify their actions. An important dimension of authority was encountered authority-the authority a clinician has because of meeting the patient. The MDM chairperson can play an important role in making explicit the sources of authority being drawn on and the value positions of members to provide more clarity to the decision-making process. Attending to issues of process, authority, and values in MDMs has the potential to improve cancer care decision making and ultimately, health outcomes.

Clinicians' views on introducing epidermal growth factor receptor testing in New Zealand.

AIM: Inequities exist in the outcomes of patients diagnosed with lung cancer in New Zealand, with Maori (the indigenous population) having significantly higher diagnosis rates and poorer survival. We investigated the feasibility of introducing epidermal growth factor receptor (EGFR) testing into New Zealand as one step to address these inequities. METHODS: An anonymous electronic questionnaire was distributed to clinicians from specialties involved in lung cancer management. Questions were grouped around topics including challenges in lung cancer management, EGFR testing, targeted therapy, costs and interest in the development of a national lung tissue bank. RESULTS: In total, 61 clinicians responded and noted that few of their non-small-cell lung cancer patients were tested for EGFR mutations. Most clinicians (84%) would prefer a centralized testing service and 95% would use an overseas laboratory if publicly funded; however 62% did not know or had no preference for test procedures. Under half (46%) had used tyrosine kinase inhibitors with only a small number of patients and 79% supported the development of a lung tissue bank. CONCLUSION: While most respondents had little experience with EGFR testing, clinicians supported its introduction into New Zealand. However, a number of potential issues, including cost, laboratory expertise and the need for improved access to first-line targeted therapies that could be used if tests were mutation positive were also identified. Respondents identified potential cultural sensitivities related to sending tissue samples abroad for genetic tests that would necessitate clinicians discussing this option with individual patients.