Authors:

• Winnie K.W. So, RN, PhD, FAAN; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China;
• Dorothy N.S. Chan, RN, PhD; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China;
• Bernard M.H. Law, PhD; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.
• Kai Chow Choi, PhD; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.
• Meinir Krishnasamy, RGN, PhD; Peter MacCallum Cancer Centre, Victoria, Australia;
• Carmen W.H. Chan, RN, PhD, FAAN; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China;

Submission topic:
A Family-based Multimedia Intervention: A Potential Strategy to Promoting Colorectal Cancer Screening Utilisation among South Asian Ethnic Minorities

Colorectal cancer (CRC) is one of the most common cancers in Hong Kong. In view of the benefit of cancer screening utilisation in reducing CRC prevalence, the local government had started implementing a CRC screening programme that enable the public to undergo screening tests (faecal immunohistochemical test – FIT) at a reduced cost. Nevertheless, South Asian (SA) ethnic minorities, one of the disadvantaged populations in Hong Kong, were known to exhibit a low CRC screening rates.1 They face multiple barriers in utilising the available CRC screening services, including the language barrier, and limited knowledge on CRC prevention and screening.2,3 SA older adults are particularly affected by these barriers, yet these individuals are those who require CRC screening most, due to the increased CRC risks among older individuals. These older adults are in need of effective educational interventions to increase their knowledge on CRC screening, its benefits and how screening services can be accessed.

To educate SA effectively, we developed and implemented a family-based multimedia educational intervention, and assessed its effectiveness in promoting FIT utilisation among SA older adults in a cluster-randomised controlled trial. The intervention not only provides education on FIT to the SA older adults, but also highlights the importance of support from younger family members in enhancing cancer screening utilisation among these adults. It involved a multimedia health talk by trained instructors and navigational assistance by site coordinators, where they accompanied the older adults to attend medical appointment with a family doctor for FIT. Dyad participants, comprising an older adult and one of their younger family members, were recruited among SA communities through our partnerships with non-governmental organisations (NGOs).

The intervention appeared effective in enhancing FIT utilisation among SA older adults, as the proportion of intervention participants having undergone FIT was 10 times higher than that among control participants. Among the younger family members, the intervention may have promoted their level of willingness and readiness to encourage and assist their older family members to undergo FIT, where such levels had remained high at post-intervention among the dyads in the intervention group only. Moreover, the participants were satisfied with the intervention, expressing that they would promote it to their peers. Over 80% of our partnering NGOs were impressed with the intervention and would continue implementing it at their centres provided they have the manpower and resources. Overall, our findings demonstrated the acceptability and effectiveness of our family-based multimedia intervention, and the potential feasibility of its implementation in local SA communities.

Given the demonstrated effectiveness of the intervention in promoting CRC screening utilisation among local SA, we suggest that the intervention should be implemented regularly within SA communities worldwide, via NGOs serving local SA. Governments worldwide may allocate more resources for training the staff at these NGOs, enhancing their competence in delivering the intervention to their community peers. With enhanced awareness of SA on the importance of CRC screening and prevention, it is of potential that the CRC prevalence among this disadvantaged population group in regions worldwide can be reduced.

Detailed report of this study can be found in the published article in the International Journal of Nursing Studies.4


References

1.    Choi KC, So WK, Chen JM, Lau GC, Lee PC, Chan CW. Comparison Study of Uptake of Colorectal Cancer Testing between Ethnic Minorities and the General Population in Hong Kong. Asian Pac J Cancer Prev. 2015; 16(17): 7713-7720. http://dx.doi.org/10.7314/apjcp.2015.16.17.7713.

2.    Campbell C, Douglas A, Williams L, Cezard G, Brewster DH, Buchanan D, Robb K, Stanners G, Weller D, Steele RJ, Steiner M, Bhopal R. Are there ethnic and religious variations in uptake of bowel cancer screening? A retrospective cohort study among 1.7 million people in Scotland. BMJ Open. 2020; 10(10): e037011. http://dx.doi.org/10.1136/bmjopen-2020-037011.

3.    Wyatt LC, Patel S, Kranick JA, Raveis VH, Ravenell JE, Yi SS, Kwon SC, Islam NS. Disparities in colorectal cancer screening among South Asians in New York City: a cross-sectional study. J Cancer Educ. 2021: http://dx.doi.org/10.1007/s13187-021-01991-7.

4.    So WKW, Chan DNS, Law BMH, Choi KC, Krishnasamy M, Chan CWH. Effect of a family-based multimedia intervention on the uptake of faecal immunohistochemical test among South Asian older adults: A cluster-randomised controlled trial. Int J Nurs Stud. 2022; 132: 104254. https://doi.org/10.1016/j.ijnurstu.2022.104254

The flow of the family-based multimedia intervention project. In this project, we first recruited a number of South Asian instructors who will take part in delivering the educational intervention to their community peers. They were trained on their presentation skills and educated on various aspects of colorectal cancer and its prevention. They were also given training on how stool sample is collected for faecal immunohistochemical test (FIT). They were given a competence assessment at the end of the training. Upon passing the assessment, they will be engaged in delivering the family-based multimedia intervention. The intervention involved a health talk on colorectal cancer, colorectal cancer screening and how it can be accessed. During the talk, a video clip was shown, with its content highlighting the importance of support from younger family members in modifying cancer screening behaviours of the older participants. A demonstration on how stool sample is collected for FIT was also given by the instructor during the talk. Finally, each participant received a health information booklets at the end of the talk, with the contents aiming to reinforce the knowledge gained by the participants during the educational intervention.

Author: LING Wai Man (MScN, RN, FHKAN), Department of Clinical Oncology, Pamela Youde Nethersole Eastern Hospital, Hong Kong

Metastatic spinal cord compression (MSCC) is an oncological emergency which can cause severe debilitation and adverse impacts on patient’s quality of life. A preliminary review conducted between January 2018 and June 2019 in our oncology wards on 6 MSCC patients revealed that there were delayed initiation of multidisciplinary supportive care and a paucity of routine psychosocial assessment. The lack of a systematic and timely multidisciplinary MSCC care plan was evident. Therefore, we decided to initiate a quality improvement project to enhance the MSCC care by establishing and implementing a systematic multidisciplinary care pathway.

Based on the gaps identified from the aforesaid review and current international guidelines like the Christie NHS Guideline and NICE Pathway, a departmental integrated care pathway (ICP) for MSCC was developed. Emphasis was placed on the multidisciplinary input for timely therapeutic interventions, pain management, psychosocial care and supportive measures so as to maximize rehabilitation, prevent complications and aid discharge planning. To facilitate the systematic care delivery, a clinical practice checklist was designed and used since September 2019. A clinical audit was then conducted in late 2020 to evaluate the effectiveness of the project, including the (i) compliance to the ICP, (ii) effectiveness in multidisciplinary communication and service coordination, and (iii) effectiveness of the enhancement in clinical care.

A retrospective approach with the pre and post historical comparison design was adopted. Twenty-one MSCC patients from September 2018 to August 2019 (pre cohort) and 40 from September 2019 to August 2020 (post cohort) were recruited. Their median age was 71 with the range of 41 to 100. Thirty-eight (62.3%) of them were male. The top 5 cancer diseases were lung, prostate, colorectal, breast and lymphoma. The most common site of MSCC was thoracic spine (86.7%), followed by cervical (18.3%) and lumbar (15%). Ratio of single to multiple levels of MSCC was half to half. Radiotherapy (85.2%) was the most common primary treatment for the MSCC, whereas surgery (4.9%) and supportive management (9.8%) were the minority. Their median survival time was 3.2 months only.

The overall compliance to ICP was good. All the post cohort patients were under its care with 85% initiated within 1 day. All had a clear documentation of the spinal stability. Use of anti-embolism stockings rose from 19% to 75% (p<0.001). There was a statistically significant increase in the referral to physiotherapist (81% vs 100%; p<0.5), occupational therapist (72.6% vs 95%; P<0.5) and social worker (42.9% vs 75%; P<0.5). Although it was not statistically significant yet, there was a trend of improvement in pain control, prevention of constipation and discharge planning. The median length of stay was shortened from 13 to 10 days with over three-fourths back to home or elderly home.

Our audit results support the use of ICP, which can promote systematic, timely and holistic MSCC care, and is worthwhile to adopt in routine practice. Improvement actions (like a stepwise remobilization protocol and a more convenient multidisciplinary referral system) have been identified afterwards to strive for a continuous quality enhancement in our MSCC care.

References
Christie Hospital NHS Foundation Trust. (2020a). Overview of the Management of Metastatic Spinal Cord Compression due to Cancer (Version: V6). Retrieved from https://www.christie.nhs.uk/media/9329/overview-of-the-management-of-mscc-due-to-cancer-sept-2020-final.pdf
Christie Hospital NHS Foundation Trust. (2020b). Protocol for Mobilisation and Rehabilitation (Version: V6). Retrieved from https://www.christie.nhs.uk/media/9321/guidelines-on-mobilisation-and-rehabilitation-sept-2020-final.pdf
Laufer, I., Bilsky, M., Schiff, D., & Brown, P. (2021). Treatment and prognosis of neoplastic epidural spinal cord compression (Topic 2820 Version 42.0). Retrieved from https://www.uptodate.com/contents/treatment-and-prognosis-of-neoplastic-epidural-spinal-cord-compression?search=malignant%20spinal%20cord%20compression&source=search_result&selectedTitle=1~150&usage_type=default&display_rank=1
National Institute for Health and Clinical Excellence. (2008). Metastatic spinal cord compression in adults: risk assessment, diagnosis and management (CG75). Retrieved from https://www.nice.org.uk/guidance/cg75
Vogel, W. (2020). Structural Emergencies. In J. M. Brant, D. G. Cope, & M. G. Saria. (Eds.), Core Curriculum for Oncology Nursing (6th ed.) (pp. 470-486). St. Louis, Missouri: Elsevier.

Oncology nurses are practicing the essential skills in MSCC care: the application of orthotics and log rolling.

Authors

• Dorothy N.S. Chan, RN, PhD; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
  
• Bernard M.H. Law, PhD; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.
• Winnie K.W. So, RN, PhD, FAAN; The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China
• Ning Fan, MBBS; Yan Chai Hospital, Hospital Authority, Hong Kong SAR, China

Cervical cancer screening utilisation is known to be of benefit to reduce the prevalence of cervical cancer,1 one of the most common cancers among women. However, individuals with physical disabilities, including those having impairments in mobility, vision and hearing, were reported to exhibit low cervical cancer screening utilisation rate.2,3 This renders them more likely to have missed the opportunities to detect any precancerous lesions early for a timely treatment that prevents these lesions to develop into cancer. Therefore, strategies need to be developed to increase the screening rates of individuals with physical disabilities. To do so, we need to have a better understanding on the factors that hamper and facilitate these individuals to undergo cervical cancer screening.

To this end, our team had previously conducted a systematic review exploring the barriers and facilitators of cervical cancer screening utilisation among individuals with mobility, visual and hearing impairments. Based on these identified barriers and facilitators, we aim to make recommendations on the potential strategies that help increase the screening rates of these disadvantaged individuals.

Overall, people with physical disabilities, especially those with mobility disabilities, are hampered to undergo cervical cancer screening by three major factors:
•    They possess limited knowledge, and even misconceptions, on the need for screening – they believe that screening is not needed if they feel healthy or are not sexually active.
•    They perceive that undergoing screening is an unpleasant experience, as they have been informed on the poor screening experience of their peers, potentially due to the lack of knowledge of healthcare professionals to work with people with disabilities.
•    They experience difficulties in accessing screening providers, especially owing to the hassle in making transportation arrangements and the lack of ramps for wheelchairs within the premises of screening providers.

On the other hand, individuals with physical disabilities would be more likely to undergo cervical cancer screening if an attendant is on hand to help these individuals throughout the screening procedures, and that the duration of screening appointments can be lengthened so that they can feel less rushed during the screening process.

The review findings enable the suggestion of several strategies for enhancing the cervical cancer screening utilisation rate of individuals with physical disabilities. First, public education on cervical cancer screening should be enhanced within communities, through the implementation of educational programmes that help clarify certain misconceptions on cervical cancer screening possessed by the public. Second, more resources may be allocated to train healthcare professionals to work with people with disabilities, enabling these healthcare professionals to be more patient with these disabled individuals. This may provide a more pleasant and relaxing experience for these individuals to undergo screening. Third, screening providers may also consider allocating resources to employ helpers assisting individuals with physical disabilities to get into position for the screening procedures, install disability-friendly facilities at their premises and provide transportation services for these individuals, offering them a greater level of convenience for them to attend screening appointments. All these may enhance the intention and capability of these individuals to undergo screening.

The article reporting the methodologies and findings of this review was recently published in Health Policy.4

References

1.    Landy R, Sasieni PD, Mathews C, Wiggins CL, Robertson M, McDonald YJ, Goldberg DW, Scarinci IC, Cuzick J, Wheeler CM; New Mexico HPV Pap Registry Steering Committee. Impact of screening on cervical cancer incidence: A population-based case-control study in the United States. Int J Cancer. 2020; 147(3): 887-896. http://dx.doi.org/10.1002/ijc.32826.

2.    Lofters A, Guilcher S, Glazier RH, Jaglal S, Voth J, Bayoumi AM. Screening for cervical cancer in women with disability and multimorbidity: a retrospective cohort study in Ontario, Canada. CMAJ Open. 2014; 2(4): E240-E247. http://dx.doi.org/10.9778/cmajo.20140003.

3.    Kellen E, Nuyens C, Molleman C, Hoeck S. Uptake of cancer screening among adults with disabilities in Flanders (Belgium). J Med Screen. 2020; 27(1): 48-51. http://dx.doi.org/10.1177/0969141319870221.

4.    Chan DNS, Law BMH, So WKW, Fan N. Factors associated with cervical cancer screening utilisation by people with physical disabilities: A systematic review. Health Policy. 2022: (in press). doi: 10.1016/j.healthpol.2022.08.003.

A schematic diagram depicting the identified barriers and facilitators of cervical cancer screening utilisation among people with physical disabilities.

October is Breast Cancer Awareness Month.  Breast cancer is the most prevalent cancer globally and the leading cause of cancer death among women. WHO Global Breast Cancer Initiative aims to reduce global breast cancer mortality by 2.5% per year, averting 2.5 million cancer deaths globally by 2040.

Early diagnosis is key to reducing mortality. The International Society for Nurses in Cancer Care (ISNCC) is the proud recipient of a UICC grant for the early detection of breast cancer. ISNCC is using the grant funding to facilitate train-the-trainer initiatives and working with nurse leaders across Africa to educate ground nurses in the region on early diagnosis of breast cancer including health awareness messages and clinical breast examination. The goal is to maximize contributions of nurses, the biggest healthcare provider, to reduce cancer burden and mortality.

Union For International Cancer Control Initiatives

The Union for International Cancer Control (UICC) is raising awareness of Breast Cancer through Pink October this month. Learn more about their initiatives including the launch of a Master Course on “Good practices for planning and implementing breast cancer projects” on the UICC Breast Cancer Awareness Campaign Page.

As a proud member of UICC, ISNCC would like to encourage our community to help raise awareness of breast health and the importance of screening for the early diagnosis of breast cancer. As the largest component of the health workforce, nurses across the world play an important role in breast cancer management, including in the critical area of early diagnosis.

The ISNCC Board of Directors is pleased to announce the release of the Society’s 2022-2025 Strategic Plan. The plan continues ISNCC’s long tradition as the global leader in cancer nursing and reconfirms our commitment to the identification, engagement, and development of nurses across the world as essential health care providers in cancer care and control.

The 2022-2025 Strategic Plan includes the following strategic directions:

• Build and strengthen the cancer nursing workforce across the world
• Influence global health policy
• Advance and apply knowledge
• Leverage partnerships with members and global citizens

Each direction is associated with a range of key activities that will enable ISNCC to achieve its mission to lead the global nursing community to reduce the burden of cancer.

Open ISNCC 2022-2025 Strategic Plan

Professor Winnie So, BN, MHA, Ph.D., FAAN, will commences her four-year term as President of ISNCC from July 1st, 2022. Winne is a Professor at the Nethersole School of Nursing, The Chinese University of Hong Kong, and a Visiting Professor at the School of Nursing, Shandong University of Traditional Chinese Medicine. Winnie’s research interest focuses on cancer and palliative care, especially in relation to cancer prevention and early detection of cancer, supportive care needs, symptom experience, and quality of life of cancer patients. She has published over 170 papers in peer-reviewed journals and delivered more than 110 invited presentations/lectures at national/international conferences, workshops, research institutes, and universities. She is also the Editor-in-Chief of the Asia-Pacific Journal of Oncology Nursing and an Associate Editor of Cancer Nursing.

The ISNCC Nominations and Awards Committee is pleased to announce outcomes for election to three vacant Board of Director Portfolio positions.

Corporate & Philanthropic Development Portfolio: Josephine Visser RN, BSN, OCN
Joanne is currently Oncology Clinical Territory Manager, Takeda Oncology, USA. She has extensive professional experience in a range of clinical and education roles. She has been an active member of the Oncology Nursing Society in the USA, contributing to a number of projects and committee roles. Joanne has been a member of the Corporate and Philanthropic Committee of ISNCC since 2019. She has been an active member with participation and bringing ideas/suggestions to assist with the goals of the strategic plan of the committee.

Knowledge Development & Dissemination Portfolio: Meinir Krishnasamy, B.A.(Hons), RGN, Master of Advanced Clinical Practice (Cancer Nursing), PhD
Meinir is currently Director, Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, Research and Education Lead - Nursing, Victorian Comprehensive Cancer Centre (VCCC) Alliance, and Professor of Cancer Nursing, University of Melbourne. She has made significant contributions to cancer nursing over the past 30 years including being a long standing and active member of ISNCC, contributing to and participating in the International Conference on Cancer. More recently, Meinir has been a member of ISNCC’s Policy and Advocacy Committee.

Member Development Portfolio: Lisa Kennedy Sheldon, PhD, ANP-BC, AOCNP®, CGNC®, FAAN
Lisa is currently Global Nurse Consultant and Oncology Nurse Practitioner, St. Joseph Hospital. She has more than four decades as a registered oncology nurse and certified nurse practitioner, and experience as a tenured faculty, consultant and author. Lisa is a longtime member of the Oncology Nursing Society (ONS) in the USA and has held positions on ONS research advisory panels. She was the first ONS Chief Clinical Officer. Lisa is also a longtime member of ISNCC and currently serves as an author mentor for Cancer Nursing.

The three successful candidates will take up their Board positions for a four-year term from July 1st, 2022. They join other continuing members of the Board, including:

• Winnie So, President (from 1st July 2022)
• Linda Watson, Secretary/Treasurer
• Patsy Yates, Past President (from 1st July 2022)
• Suzanne Bishaw, Conference Management Portfolio
• Julia Downing, Policy and Advocacy Portfolio
• Yongyi Chen, Communications Portfolio

I would also like to thank outgoing board members, Raymond Chan, Andrew Dimech, and Scarlott Mueller, for their outstanding contribution to the Board over the past four years.

AUTHORS: Margaret I Fitch RN PhD, Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
Christopher J Longo PhD, Health Policy and Management, DeGroote School of Business, MacMaster University, Hamilton, Canada

Cancer and its treatments have many impacts and leave individuals and families coping with a range of challenges. One of the challenges we are understanding more about is financial toxicity. The term reflects both hardship and distress arising from the financial burden experienced during and following cancer treatment.

Initially, exploration of financial impact following a cancer diagnosis only focused on calculating costs of treatments. Investigations then moved on to explore the amount of ‘out-of-pocket’ costs which patients incurred. These are defined as expenses not covered by the healthcare system or reimbursed through health insurance. They can include costs for hospital bills, medications, supplies, counselling, transportation, and parking. These objective measures failed to capture the extent and complexity of the financial impact. More recently, subjective measures concerning distress and impact on quality of living have been explored.

Almost all people diagnosed with cancer will report having added expenses. Cancer patients/survivors report there are often “out-of-pocket” expenses they must pay themselves related to having cancer and being treated. The actual amounts vary from country to country but exist regardless of the type of healthcare system coverage in a country (i.e., public, private. combination).

Many individuals also report a loss of income which they attribute to cancer. Many who are working at the time of diagnosis report not being able to work for a time. This can also apply to family members. Some individuals will be covered by work leave or sick coverage plans, but this will vary from person to person. Those who are self-employed often face significant challenges if they are unable to work, as do those in fixed incomes. Additionally, whether an individual has private insurance coverage will influence the amount of income lost.  

Patients use a variety of strategies to deal with the financial demands: using savings, reducing spending, forgoing leisure activities, or setting aside plans for items such as vacations, education, and home renovations. In some instances, they forgo medical care or medications.

The emotional distress engendered by financial burden varies from person to person. The extent of this strain is linked to such factors as financial status at the time of diagnosis, financial acumen, having insurance coverage, and ability to access financial support programs.

 It is important that a conversation occur soon after diagnosis about the potential for financial burden. Patients need to be prepared for the financial impact and not taken by surprise. They need to know what resources are available to them. Some will have sufficient resources of their own and be able to manage without additional intervention, but others will benefit from additional assistance. The role of financial navigators has been implemented successfully in some cancer programs. 

Screening for distress surrounding financial toxicity should be incorporated into routine practice. Often the financial impact emerges during treatment and may continue long after treatment has finished. It is important to identify those who would benefit from intervention as early as possible so that effects can be mitigated.  

Selected References

• Fitch MI, Sharp L, Hanly P, Longo CJ. Experiencing financial toxicity associated with cancer in publicly funded healthcare systems: A systematic review of qualitative studies [e-pub ahead of print]. J Cancer Surviv. doi: https://doi.org/10.1007/s11764-021-01025-7.
• Fitch MI, Longo CJ, Chan RJ. Cancer patients’ perspectives on financial burden in a universal healthcare system: analysis of qualitative data from participants from 20 provincial cancer centres in Canada. Patient Educ Counsel. 2021;104:903–910. https://doi.org/10.1016/j. pec.2020.08.013.
• Longo CJ.  Linking Intermediate to Final “Real-World” Outcomes: Is Financial Toxicity a Reliable Predictor of Poorer Outcomes in Cancer? Curr Oncol. 2022; 29: 2483–2489. https://doi.org/10.3390/curroncol29040202
• Longo CJ, Fitch MI, Banfield L, Hanly P, Yabroff KR, Sharp L. Financial toxicity associated with a cancer diagnosis in publicly funded healthcare countries: a systematic review. Support Care Cancer. 2020;28(10):4645–65. https://doi.org/10.1007/s00520-020-05620-9 Epub 2020 Jul 11 32653957.

This study was presented at ICCN2022 virtual conference.

Registration for ICCN2022 virtual library now open. For more information, please access https://www.iccn2022.com/registration/

Authors:
Marie Goretti Uwayezu RN MScN¹
Bellancille Nikuze RN MScN¹
Emile Munyembaraga RN MScN¹
Margaret I Fitch RN PhD^1,2,3

¹Scholl of Nursing and Midwifery, University of Rwanda, Kigali, Rwanda
²Bloomberg Faculty of Nursing, University of Toronto, Toronto Canada
³School of Nursing, New York University, New York, USA

The burden of cancer is increasing around the world with almost three-quarters of this burden expected to occur in middle- and low-income countries. The incidence is expected to double by 2050 in some Sub-Sahara African countries (Fidler et al., 2018). Rwanda lies at the heart of East Africa and has about 12.8 million inhabitants. Eighty-three percent live rurally in nuclear family compounds. The country can be held up as a model for how a resource-limited country can build a strong health care system.

The Rwandan health care system is a decentralized and multilayered system with specialized centres for some diseases. Cancer is one such specialty which is growing in terms of infrastructure and human resources. As of 2021 an estimated 10,704 new cancer cases were diagnosed annually and 7662 deaths occurred. The most frequent female cancer was cervical (12.2%) and for males was prostate (15.6%). Cancer surgery is available in district hospitals while chemotherapy and radiation treatment are available in selected specialty programs. Like other African countries, people face challenges in accessing diagnosis and treatment for cancer including lack of specialty centres close to home; transportation to screening, diagnosis and treatment facilities; financial concerns; and pain and symptom management. As a result many face a late diagnosis (Stage 3 or 4).

Rwanda has shown leadership for cancer control. A national five-year plan for cancer control exists as well as a comprehensive prevention program for HPV vaccination and clearly articulated palliative care policy, guidelines, and standards. The country launched its own morphine production and distribution program to meet the needs for pain management in palliative patients.

Advanced nursing and midwifery education was established in 1996 at the Kigali Health Institute with opportunities for advanced diploma, bachelor and master’s preparation. In 2007, five Schools of Nursing were established which, in 2013, were joined through a Ministry of Health initiative under the University of Rwanda. In 2015, a two-year Masters of Science Program was started with eight specialty tracks including Oncology Nursing. The other tracks were Critical Care and Trauma; Nephrology; Pediatrics; Neonatal; Perioperative; Medical-Surgical; and Education, Leadership and Management.

The Oncology Nursing Stream is a four-semester program and offers education for nurses across cancer screening, diagnosis, treatment and follow-up care of both adults and children. End-of-life care, psychosocial care and cancer rehabilitation topics are incorporated. A thesis is required, and clinical practice components occurs in several hospital, clinic, and home settings.

To date, three cohorts have graduated, and the 4^th and 5^th are enrolled. Graduates are assuming clinical and leadership roles in their respective health care facilities as well as faculty positions in Schools of Nursing. Additionally, they are beginning to publish their research and offer presentations at international conferences. The program is building capacity for oncology nursing in the country.

References

• Fidler MM, Bray F, Soerjomataram I. The global cancer burden and human development: A review. Scandinavian Journal of Public Health, 2018; 46: 27–36.
• Uwayezu, M.G., Nizure, B., & Fitch, M.I. (2020). Oncology Nursing Education: Looking Back, Looking Forwards and Rwanda’s Perspective. eCancer Journal, 14,1079.  https://doi.org/10.3332/ecancer.2020.1079
• Uwayezu, M.G., Nikuze, B., Fitch, M.I (2020). A Focus on Cancer Care and the Nursing Role in Rwanda. Canadian Oncology Nursing Journal, 30(3),  223-226.

This study was presented at ICCN2022 virtual conference.

Registration for ICCN2022 virtual library now open. For more information, please access https://www.iccn2022.com/registration/

Reflection
Author: LING Cheuk Chi Gigi (RN, PhD), The Nethersole School of Nursing, Faculty of Medicine, The Chinese University of Hong Kong

Throwback to a few years ago, a poll in UK revealed that persons over 50 are more terrified of developing dementia or getting cancer than other chronic illnesses (“Older people are more scared of”, 2014). Meanwhile, living and dying with comorbid cancer and dementia becomes increasingly prominent with the ageing population (McWilliams et al., 2018).

Family caregivers often devote a considerable time and effort in providing physical and psychosocial care to their loved ones during the end-of-life.  Providing end-of-life care for persons with either dementia or cancer is well-known to be a stressful and burdensome experience (Secinti et al., 2021). The comorbidity of cancer and dementia might further amplify the intricacies of the end-of-life caregiving experience when the person’s physical, cognitive, emotional, and behavioural aspects are affected altogether at the same time by both illnesses. Understanding the unique struggles encountered by this specific group of family caregivers is essential to provide information in the development of nursing interventions to effectively support both the persons with comorbidity and their family caregivers. Nonetheless, limited studies have acknowledged this unique family caregiving experience.

In view of this, an interpretative phenomenological analysis (IPA) was employed to examine the unique end-of-life caregiving experience among family caregivers of persons with comorbid dementia and cancer (PwDnC). Twenty-one family caregivers of deceased PwDnC with diverse backgrounds and characteristics were recruited purposefully from a palliative care unit in Hong Kong. A total of eighteen semi-structured interviews were done as some caregivers in the same family were interviewed together. The audio recordings were then transcribed and analyzed in accord with the principles of IPA. This study yielded a high volume of information. The findings shared below is only part of the data set that mainly focus on the unique internal struggles that encountered by the family caregivers of PwDnC.

A main theme of unconfirmable silent suffering is unveiled with two subthemes that capture family caregivers’ internal conflict and perception towards the pain of their loved ones: (1) uncertain silent of dementia and (2) undoubted suffering of cancer. Family caregivers in this study believed cancer was the origin of noxious and yet their loved ones could not express their cancer pain due to the unexpressive nature of dementia. These two fallacious beliefs collided when dementia met cancer and ascribed to a sense of silent suffering and worries in family caregivers of PwDnC. On one hand, family caregivers worried their loved ones were suffering silently. On the other hand, family caregivers were also suffering from their own uncontrollable worries, which resulted in their immobilization and helplessness in providing care and management symptoms.

These findings give voice to the family caregivers and acknowledge the intricacy of family caregiving in the context of comorbid cancer and dementia. From the findings, we could see that the cancer diagnosis, the grave prognosis, and the possible interactions of all the new and preexisting signs and symptoms might increase family caregivers’ sense of uncertainty and resulting in impertinent worries regarding cancer pain. Taking account of the diversity of family caregivers, careful considerations is needed to develop appropriate assessment and relevant education for this unique group of family caregivers to reduce the ambiguity and uncertainty of caregiving. Further research is suggested to better understand the impact of perceived silent suffering to enable healthcare professionals and family caregivers to provide better care and symptoms management for persons with comorbid cancer and dementia.

All in all, family caregivers suffered not because of the heavy burden of caregiving, but because they loved and cared about their loved ones.

Image: Captured through my lens: Suffered from your Pain. Chinese ink on rice paper

Inspired by the data, I created this Chinese Calligraphy during data analysis in 2020. It represents the interpretation and perception of reciprocal suffering through love and caregiving.

References

• Older people are more scared of dementia than cancer, poll finds. (2014, August 4). The Telegraph.      https://www.telegraph.co.uk/news/health/elder/11008905/Older-people-are-more-scared-of-dementia-than-cancer-poll-finds.html
• McWilliams, L., Farrell, C., Grande, G., Keady, J., Swarbrick, C., & Yorke, J. (2018). A systematic           review of the prevalence of comorbid cancer and dementia and its implications for cancer-related care. Aging & Mental Health, 22(10), 1254-1271. https://doi.org/10.1080/13607863.2017.1348476
• Secinti, E., Lewson, A. B., Wu, W., Kent, E. E., & Mosher, C. E. (2021). Health-Related Quality of Life: A comparative analysis of caregivers of people with Dementia, Cancer, COPD/Emphysema, and Diabetes and Noncaregivers, 2015–2018 BRFSS. Annals of Behavioral Medicine, 55(11), 1130-1143. https://doi.org/10.1093/abm/kaab007

This study was presented at ICCN2022 virtual conference.

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