Abstract
Dear Editor:
The Nova Scotia Cancer Care Program (NSCCP) has a strong history of engaging patients/families in quality improvement initiatives. Public Advisors serve on the NSCCP's patient education resource development working groups; a survey has been devised to obtain patient/family feedback and Public Advisors serve on the Nova Scotia Cancer Patient Education Committee.
The release of the Nova Scotia Palliative Care Strategy in 2014 and the formation of the Nova Scotia Health Authority (NSHA) presented an opportunity to standardize patient/family education resources. 1 In 2014, an environmental scan revealed that various palliative care patient/family education resources were in use. The NSCCP collaborated with the NSHA's Palliative Care Coordinator to create a new resource. 2
Palliative care teams and hospice associations reviewed the resource. The reviewers were generally positive and provided suggestions to strengthen it. Some expressed concern that it contained too much detail about near-death symptoms. A number of reviewers suggested creating two resources, one for patients and another for families.
When considering how patient/family feedback would be obtained, the NSCCP had to re-examine its typical survey methodology. In 2015, six family members participated in a focus group, another person provided written feedback. Participants read the resource in advance. Participants provided rich, insightful feedback. Unlike the providers, the participants wanted more information and they felt strongly that only one resource be created. A participant noted:
There were parts of this booklet that were very emotional, which means it was saying the right things.
In addition to the suggested changes, participant's quotes were incorporated to normalize the experience, for example:
I cannot express how important it is for patients/families to know absolutely everything that may happen …We were informed but, there were a lot of things that happened that we weren't prepared for.
The final version was circulated to the participants and providers. All reviewers were supportive of the changes; one family member commented:
Thank you, you really listened to us …I can see our contributions in the booklet.
Engaging family members in the development of the NSHA's palliative care resource proved to be invaluable, the final version bears very little resemblance to the first draft. The 57-page resource, available in English and French, may be reviewed at www.nshealth.ca/content/palliative-care. The resource is in use across Nova Scotia; refer to Figure 1.
Organizations using the resource. EHS, emergency health services; NS, Nova Scotia.
Several months after the updated resource was distributed, the NSCCP was interviewing a bereaved family for Public Advisors on another project. The resource was used as a patient/family engagement example, the family noted:
…that booklet saved us. We felt lost and like nothing was making sense, and then someone gave us the booklet… It was incredible and comforting and real. I cried … but was glad to know the truth…. I was finally being told what I needed to hear. It makes sense that families helped with this booklet, you can tell. This booklet made a huge impact on our family and our dying loved one, please tell the people involved that the booklet has made a real impact on our lives. Tell them thank you.