Improving the lives and long-term outcomes of people affected by bleeding disorders since 1958

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Te Roopu Rangatira: Our holders of knowledge

This year HNZ undertook a research project, Te Roopu Rangatira: Our holders of knowledge, to determine how well HNZ is meeting the needs of members aged 55 and over. Sarah Elliott, social worker and former HNZ outreach worker, led the survey, overseen by the HNZ CEO and supported by the Communications Manager.

The findings of Te Roopu Rangatira: Our holders of knowledge were informed by a written survey, a focus group, and four individual interviews. Forty-one people completed the written survey, and their responses guided the subsequent four-person focus group and four individual interviews. In total, 208 surveys were distributed to members in the 55 plus age group. Of the 41 responses, 21 were women and 20 men, 34 were Pākēha, four Māori, and three of other ethnicities.

The survey found that 48% of respondents think that HNZ is effective in meeting their needs, while 29% believe that HNZ is ineffective. Furthermore, 88% think that HNZ could change or improve their services. Of the services HNZ provide, 36% said that outreach support was the most valuable; 18% selected Bloodline, Pānui, and other information; 14% selected conferences and workshops; 14% selected socialising and social events; and 9% highlighted footwear vouchers.

Regarding information specific to their needs, respondents were most interested in new treatments, pain management, remaining active, exercise, and weight management.

The most common theme for specific services was more contact with their outreach workers. Concerns were expressed about staff turnover and the need for rapport building. Forty-five percent of respondents thought their outreach worker was supportive, while 20% felt they were unsupportive. The most common response (35%) was that they felt moderately supported.

Participants noted a lack of connection and most had not seen an outreach worker for many years, or may have a quick catch-up once a year that did not focus on getting into the details of their specific needs and issues. There was a lot of discussion about the recruitment of outreach workers and the types of people participants thought best suited to an outreach role, including those outreach workers from outside the bleeding disorder community who need to spend time upskilling especially related to the impact of bleeding disorders on older people. They suggested outreach workers need regular training/hui where they meet with a group of active parents and an older member to share their experiences and gain insight.

The focus group broadly focused on access to services and supports, outreach support, social supports, and HNZ support. The key them that ran through this group was concern about their own physical health. This is particularly interesting given the sessions and questions were developed to focus on services and supports.

Most people found that the medical system could be tricky to navigate, including knowing which specialists to follow up with. There was a clear concern about medical professionals' lack of bleeding disorder knowledge. Participants felt they were sometimes lost in the hospital system, and found the medical system slow in meeting their needs. They found it hard to access the equipment they need and were often waiting very long periods. They discussed the possibility of HNZ funding some of this equipment, which is essential for mobility and quality of life. There was significant feedback about whether outreach workers were able to help advocate and support them to get the equipment they need, and at hospital appointments, as well as having knowledge of what resources are available to members.

The importance of social connection with others with bleeding disorders was another key theme for everyone. The participants were very clear that face-to-face time together was essential and should be a main role for HNZ and outreach workers. Camps, workshops, meetings, and social events should provide a space for discussions, support, and sharing. This was more important than the education sessions for many.

When talking about HNZ specifically, participants felt that HNZ was no longer visible, that they have “wound down” and they were not sure what HNZ actually does, as they do not see a lot anymore. There were not many suggestions about what changes HNZ may need to undergo to better support their older members, although did suggest HNZ need fresh people on the Board with new ideas, passion, and enthusiasm.

Click here to read the full report