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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. 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.
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Towards a Patient-Family Care Model: The Evaluation of a Cancer Family Support Pilot Project • Ms. Candy FONG1 • with Dr. Andy H. Y. HO1, Ms. Michelle, Y. J. Tam1, Mrs. Patricia Y. P. Y. CHU2 and Ms. Tammy C. N. LEE2 • 1The University of Hong Kong • 2The Hong Kong Anti-Cancer Society
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)
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
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
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
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
Significant Improvements among Patients • Patients • Improvements • Psychological Well Being • Physical Condition • 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 • 91.1% reported less distress by emotional disturbance • 69% reported improve psychological well being • Social/ Environment • Quality of Life • 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 • Over 90% reported less overall distress • 86.2% reported improved general condition • 86.2%reported improved QoL
Significant Improvements among Caregivers • Caregivers • Improvements • Psychological Well Being • Physical Condition • 54.6% reported improved health • 67.7% reported improved • physical condition • 71% reported improve psychological well being • Social/ Environment • Quality of Life • 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 • 89% reported less overall distress • 89.8% reported improved general condition • 41.1%reported improved QoL
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
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
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
Reference Hong Kong Cancer Registry. (2014). Top ten cancers in 2011. Retrieved from 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.
Thank You! Ms. Candy FONG Email: hiocheng@hku.hk
