CANCER CONNECT NZ A peer support service for people living with cancer

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Transcription:

CANCER CONNECT NZ A peer support service for people living with cancer Dr Rae Noble-Adams (RGON, BSc Hons, PhD) Liz Horn (Support Services Manager) and Meg Biggs (Information Nurse) Canterbury/West Coast Division of the Cancer Society of NZ

Background Audit of Cancer Connect NZ 1 years data: June 2008 - July 2009. This presentation is Part One of the Two-part project, aiming to: Understand our CC NZ population Look for any gaps in service identify satisfaction of the CCNZ from the client, volunteer and referrers perspectives

In this presentation I will describe The development of Cancer Connect in NZ The number of clients requesting a Cancer Connect match during June 2008 July 2009 ( n= 155) The CCNZ process Client demographics

Introduction Due to growing prevalence rates and improved 5 yr survival rate, an increasing number of survivors are: Living with, through and beyond a diagnosis of cancer

Peer Support Programmes Peer support programmes provide support based on shared personal experience One of the most effective models of peer support is one-to-one matched programmes in which peer support volunteers are trained and supervised

Literature Review of Peer Support Programmes Appraisal of peer programmes suggest they: Have a high consumer acceptance Provide valuable information about coping Help to reduce feelings of social isolation Reduce anxiety Bring about a more optimistic and positive view of the future

Cancer Connect NZ CCNZ commenced in 2005 (600+ clients) CCNZ is run by trained Cancer Connect Coordinators (CCC) from Canterbury/West Coast Division CSNZ It is based on the Cancer Connect Programme from Australia, (originally from Canada) Continue to work with Australia CC NZ is for non-metastatic disease only

Cancer Connect NZ Process 1.Client makes contact with Cancer Society 2.Clients information is sent to the CC Coordinator match made if possible 3.CC Coordinator contacts CC Volunteer - who rings the client at a prearranged time 4.Log sheets are submitted to the CCC Data collected for matching purposes only

Cancer Connect NZ Volunteers NZ Volunteers (n=54) Cancer Connect NZ Volunteer Criteria Adults (18 YRS +) Out of treatment for no less than 2 years Non-metastatic disease Willing to attend regular training sessions Letters of reference from Doctor Collaboration with Cancer Specific groups

CC NZ Volunteer Training 2 Day Course with Australian CC Trainers Day 1 Self awareness, communication listening and telephone skills Day 2 Self care, knowledge of Cancer Society Services Procedures for providing safe service, incl. reporting and de-briefing

Cancer Connect NZ Requests 2008-2009 95% success rate (match made) 155 clients requested 180 Cancer Connect matches 25 clients (16 %) had more than two CC NZ requests Clients had 23 different types of cancer 8 carer requests

Types of Cancer Breast Prostate Colorectal Gynae H&N Melanoma NHL Kidney Brain Myeloma Bladder Leukaemia Lung Oesophagus Other Sarcoma Stomach Pancreatic

Sources of Matches 117 from New Zealand 29 from Australia NSW 13 Victoria 6 Queensland 3 South Australia 6 Tasmania - 1

Geographical Area of CCNZ Request 8 requests from Australia 147 requests came from NZ North Island (incl. Marlborough/Nelson) 78 (50 %) South Island 69 (44.5 %)

Unsuccessful Cancer Connect Requests 9 unable to be matched in NZ or Australia, due to rare diagnosis or unusual request for support Colorectal x 2; Carer of Hodgkin's Lymphoma; NSC Lung; Metastatic Melanoma; CML; Phylloides Breast Cancer; Idiopathic Myelofibrosis; Soft tissue Sarcoma

Demographics Females 105 clients (67.7 %) Including all carers Males 50 clients (32.3 %)

Age range of clients Average age - 53.4 years Most common age - 50 years Youngest 25 years Oldest 84 years

Marital Status 19% were not recorded However of those that were, 75 % of patients were married or in a partner relationship 13% were single/never married 11 % were separated/divorced 1.5 % were widowed

Time from Diagnosis to Referral to CCNZ Minimum time from diagnosis to referral was 1 week Maximum time from diagnosis to referral was 7 years 50 % called within the first month of diagnosis 40 % called within the first year Of the 10% that called after the first year 90% of these were for support related to delayed breast reconstruction

Reasons for CC NZ Request Similar Cancer Similar Treatment Decision between treatments Emotional Support Side Effects Age Work & Social Issues

Similar Treatment and issues 27 % wanted to talk to someone about the issues relating to having had the same treatment

Similar Cancer Diagnosis 23% wanted to talk to a peer about issues related to having the same cancer diagnosis

To Assist Decision Making 15.5 % wanted to talk to different people - to assist making a decision between different treatments Prostate (67 %) Breast (25%)

Emotional Issues and Side Effects Requests for emotional support (11 %) Body image issues Survivorship Coping strategies Coping with possibility of recurrence Information & support with the side effects of treatments (8 %)

Age, Work & Social Issues Issues related to age (6.5 %) Young women with children Fertility issues usually young people Single people Work and social issues (4 %) When and how to get back to work, how to deal with colleagues and friends

Carer Requests All 8, were women who wanted to talk to another woman who had cared for: Their Husbands (75 %) A Daughter (12.5%) A Father (12.5 %)

Recommendations Continue with Part 2 of the project Further audit of all unsuccessful CCNZ requests over the last 5 years Re-look at the issue of metastatic disease Share results with other Cancer Society Divisions throughout NZ, and Cancer Type Specific Groups