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Towards a Patient-Family Care Model: The Evaluation of a Cancer Family Support Pilot Project Ms. Candy FONG 1 with Dr. Andy H. Y. HO 1, Ms. Michelle, Y.

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Presentation on theme: "Towards a Patient-Family Care Model: The Evaluation of a Cancer Family Support Pilot Project Ms. Candy FONG 1 with Dr. Andy H. Y. HO 1, Ms. Michelle, Y."— Presentation transcript:

1 Towards a Patient-Family Care Model: The Evaluation of a Cancer Family Support Pilot Project Ms. Candy FONG 1 with Dr. Andy H. Y. HO 1, Ms. Michelle, Y. J. Tam 1, Mrs. Patricia Y. P. Y. CHU 2 and Ms. Tammy C. N. LEE 2 1 The University of Hong Kong 2 The Hong Kong Anti-Cancer Society

2 Background ○ In 2011, there were 26,998 new cases of cancer, representing an increase in cancer incident rate by 9.6% compare with 2008 (Hong Kong Cancer Registry, 2014) ○ The mortality rates for both male and female had illustrated an improving trend when compared with 1991 (Hong Kong Cancer Registry, 2014) ○ Cancer care usually takes place in an out-patient setting, and mainly by family caregivers in Hong Kong ○ Reciprocal suffering: Patients and families are “inextricably interrelated as the suffering of one amplifies the distress of the other” (Sherman,1998)

3 The Walking Hand-in-Hand Project ○ A 2-year pilot project of The Hong Kong Anti-Cancer Society (HKACS), sponsored by the Jessie & Thomas Tam Charitable Foundation ○ The Project was developed to fill a gap in meeting the need of cancer patients and their families in facing the many crises brought on by the onset and/or the recurrence of cancer ○ Objectives  Distress reduction and quality of life  Taking control in transition from normal living to being a cancer patient  Getting organized as active partners with the multi-disciplinary team

4 Service of Cancer Family Support Project

5 Management Structure of the Project

6 The Evaluation ○ Objectives  To assess whether the Project has been implemented successfully in achieving all of its objectives  To identify good practices and factors that facilitate or hinder services delivery, and to make recommendations for future development

7 The Evaluation ○ Quantitative Analysis  Secondary data analysis on 673 cancer patients (N=473) and family caregivers (N=200) at pre, post and 2-4 months follow up  Data includes demographic information, assessments on physical and psycho-social-spiritual distress, quality of life and service evaluation  Data analysis: descriptive analysis, repeated-measures ANOVA and T-test were used for data analysis ○ Qualitative Analysis  Focus Group Interviews with 24 staff members and volunteers (N=9); Patients (N=9); and family caregivers (N=6)  Discussion on overall value of the project and its effectiveness, the most and least effective components, and suggestions and recommendations for improvements  Data analysis: content analysis and thematic coding

8 Project Participation ○ 62% of patients and 65% of caregivers completed assessments on all three time points ○ Average length of services for patients is 243 days and for caregivers is 239 days

9 Characteristics of Patients (N=473) AgeNumber%GenderNumber% 18-2961.3Female27858.8 30-39204.3Male19541.2 40-499821.0 50-5913428.7 60-6911825.3 70-796413.7 80 and above275.8 Marital StatusDistrict Married33771.9New Territories21943.7 Not Married5712.2Kowloon15432.8 Divorced/ Separated408.5Hong Kong Island9620.5 Widow357.5Mainland China122.6 Others20.4 Living ConditionNo. of Children Living with Family31767.7No Children9621.1 Living with Spouse Only9119.4One Child10623.3 Living Alone5511.8Two Children14632.1 Living with Friends30.6Three Children6414.1 Living with Unrelated People20.4Four Children Five or Above 26 17 5.7 3.7

10 Characteristics of Patients (N=473) Cancer TypeNumber%Cancer StageNumber% Lung11424.4Stage 030.7 Breast10121.6Stage 1327.1 Colorectal7716.5Stage 25812.8 NPC296.2Stage 36714.8 Cervix214.5Stage 412728.0 Prostate204.3Don’t Know16636.6 Stomach173.6 Liver163.4 Ovary143.0 Bladder92.8 Others4610.4 Years since Diagnosis Treatment Progress Less than 1 year19744.4 Treatment in Progress27658.6 1-2 years173.038.9 Treatment Completed9820.8 3-5 years48.010.8 Waiting for Treatment8918.9 6-9 years15.03.4 Don’t Know81.7 10 years and above11.02.5

11 Physical Well Being (N=473)

12 Psychological Well Being (N=473)

13 Social Well Being (N=473)

14 Overall Quality of Life (N=473)

15 Characteristics of Caregivers (N=200) AgeNumber%GenderNumber% 20-2973.7Female14673 30-393317.3Male5427 40-495227.2 50-595126.7Marital Status 60-693618.8Married14875.5 70-79115.8Not Married4422.4 80 and above10.5Divorced42.0 Kinship with PatientLiving Condition Spouse/ Partner10552.5Living with Patient10955.1 Children6130.5Living with Family4924.7 Siblings178.5Living with Patient and Family3316.7 Parents105.0Living Alone52.5 Relatives73.5Living with Spouse Only21.0 No. of ChildrenDistrict No Children6032.3New Territories9045.5 One Child4624.7Kowloon7035.4 Two Children5429.0Hong Kong Island3517.7 Three Children168.6Mainland10.5 Four Children73.8Others21.0 Five and Above31.6

16 Physical Well Being (N=200)

17 Psychological Well Being (N=200)

18 Social Well Being (N=200)

19 Overall Quality of Life (N=200)

20 Significant Improvements among Patients Physical ConditionPsychological Well Being Social/ Environment Quality of Life Patients Improvements 91.1% reported less distress by emotional disturbance 69% reported improve psychological well being Over 90% reported less overall distress 86.2% reported improved general condition 86.2% reported improved QoL 61.9% reported less distress by body pain 82.5% reported less distress by sleep problems 58.5% reported improved health 60.3% reported improved physical condition 78.7% reported less distress by pragmatic issues 75.9% reported less distress by family issues 47.6% reported improved social well being 66.9% reported improved environmental well being 90.3% reported improved cancer understandings 80.9% reported reduced death taboos

21 Significant Improvements among Caregivers Physical Condition Psychological Well Being Social/ EnvironmentQuality of Life Caregivers Improvements 71% reported improve psychological well being 89% reported less overall distress 89.8% reported improved general condition 41.1% reported improved QoL 54.6% reported improved health 67.7% reported improved physical condition 45.6% reported improved social well being 66.4% reported improved environmental well being 94.5% reported improved cancer understandings 88.2% reported reduced death taboos

22 Summary from Qualitative Evaluation ThemesSubthemes Uniqueness Values of the project  Casework Approach  Timely Support through Active Community Outreach  Whole Person Care  Complementary Role to Conventional Care and Support: Individualized, Tailor-made Services, Continuous Informational and Emotional Support Factors Contributing to the Success of the Project  Whole Hearted Devotion to Project  Mutual Influencing Process  Sense of Companionship  Sense of Understanding  Flexibility and Openness Major Challenges  Complexity in Psycho-Spiritual Support  Sense of Helplessness  Emotional Triggers  Challenges in Talking about Life and Death  Difficulties in Promoting the Project Suggestions for Improvement  Support and Training for Staff and Volunteers  More Collaboration and Communication with Hospitals  Community Outreach Services  Need for More Gatherings  Geographical Location and Facilities  Resources and Man Power

23 Conclusion ○ The pilot project effectively attained its objective to reduce cancer families’ distress in face of cancer, enhanced their quality of life, and facilitate control in transition of cancer phrases ○ The project is invaluable complementary to conventional care  Individualized, tailor-made services  Continuous timely support through active community outreach ○ Serving a special, vulnerable group of cancer families:  Tended to be at late middle age or old age, married couples, and were living with family  More deprived: Lower education level and living in public housing

24 The Way Forward… ○ Increase in cancer survival rate and an aging trend in cancer population imply an increase in cancer care burden ○ Limited healthcare resources are far from sufficient to provide holistic care to patients, let alone family caregivers ○ Most patients will be cared within the community, by family caregivers ○ There is an imperative needs to strengthen collaborations with community organizations, by investing resources to further develop and support multidisciplinary, community-outreach, person-centered cancer family support projects

25 Acknowledgement ○ All cancer patients and their family caregivers participated in this study ○ The Hong Kong Anti-Cancer Society ○ Professor Cecilia Chan for her continuous advice and support throughout the study

26 Reference Hong Kong Cancer Registry. (2014). Top ten cancers in 2011. Retrieved from http://www3.ha.org.hk/cancereg/statistics.html http://www3.ha.org.hk/cancereg/statistics.html Sherman, D. W. (1998). Reciprocal suffering: the need to improve family caregivers' quality of life through palliative care. Journal of palliative medicine, 1(4), 357-366.

27 Thank You! Ms. Candy FONG Email: hiocheng@hku.hkhiocheng@hku.hk


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