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Memorandum
Office of …………………………………………………………………………………… Tel ………………………………………….
Ref. ……………………………………………/…………………….....................................Date …………………………………………………….
Subject KKUEC’s submission form for Social/Anthropological Studies
To Chairman of The Khon Kaen University Ethics Committee in human research
I, Muhamad Zulfatul Ala, Doctor of Philosophy (PhD) student of Faculty of Nursing would like to
submit a research proposal entitled Community Volunteering System for People with Cancer Undergoing
Chemotherapy (ระบบอาสาสมัครชุมชนสําหรับผู้ป่วยมะเร็งที่ได้รับเคมีบําบัด) for approval of ethics in human research.
I have attached the following documents for your considerations:
1. Submission fee receipt
2. KKUEC’s submission Form for Ethics in Human Research for Social/Anthropological studies
(Version 2.0 Dated 1 July 2021).
3. Research proposals (Version 2.0 Dated 1 July 2021).
4. Information Sheet for research subjects (Version 2.0 Dated 1 July 2021).
5. A simplified and shortened version of the Information Sheet with version number and date
(in case where the original version is longer than 6 pages) if applicable.
6. Informed Consent Form for research subjects (Version 2.0 Dated 1 July 2021).
7. Research tools (Version 1.0 Dated 28 April 2021).
8. Submit form for Thesis/Independent Study Proposal
graduate study, Khon Kaen University (GS23) (In case of graduate students)

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Thank you very much for your kind considerations.

Signature………………………………….………….… Signature ………………………………….………….

(Associate Professor Dr. Khanitta Nuntaboot) (Muhamad Zulfatul Ala)


Project Advisor Principal investigator

Signature ………………………………….…’

(......................……………………………….............................)
Head of Department/Office or Dean of faculty

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KKUEC’s submission Form for Ethics in Human Research for
Social/Anthropological studies

The applicant must submit details for all of the items below.
1. Research title: Community Volunteering System for People with Cancer Undergoing Chemotherapy
(ระบบอาสาสมัครชุมชนสําหรับผู้ป่วยมะเร็งที่ได้รับเคมีบําบัด)
2. Principal investigator and affiliation: Muhamad Zulfatul Ala, Doctor of Philosophy (PhD) student of Faculty
of Nursing
Phone number: 0943828797
E-mail: mz.ala@kkumail.com
3. Co- investigator(s) and affiliation(s): (in both Thai and English)
4. Significance of problems to be studied
Cancer has still become a serious health problem in the world. One of the efforts to reduce the death
rate from cancer is cytotoxic chemotherapy. However, chemotherapy also has many side effects that can
affect the quality of life in cancer patients. Also, chemotherapy can affect the social, economic, and
cultural aspects of cancer patients. Improving the health system's quality is needed to increase the
quality of people with cancer undergoing chemotherapy. Volunteering system is one of the strategies in
improving the quality of health care systems in the community context. Volunteering can be a mediator
between patient and health care provider, accompanying the patient and as a social support for patients.
Volunteering refers to an activity given free of charge, which benefits from prolonged processes through
formal organizations. Study of community volunteering systems in Indonesia is scarce. So, this requires
comprehensive research on the community volunteering system in Indonesia. Research on volunteering
needs an analysis in exploring the real situation and conditions with a subjective view to get
comprehensive and applicable result. Therefore, a critical ethnography using qualitative approach is
utilized in this study. Moreover, a multiperspective view is also essential to be applied in this study.
Therefore, the perceptions and experiences explored in this study are not only from health volunteers as
key informant but also from people with cancer, family, and health care providers. The study result is
hoped to give policy recommendations related to applying the volunteering system for people with
cancer undergoing chemotherapy in the community context for the government, especially the local
government in Jember.

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5. Objectives
This research has main objective and specific objectives. The main objective of this research is to explore
the implementation of community volunteering system which is carried out by either non-governmental
or governmental organizations for people with cancer undergoing chemotherapy. Specific objectives are:
(1). To explore demands of care and support for people with cancer undergoing chemotherapy in
community context
(2). To explore the roles and functions of volunteers in caring and supporting people with cancer
undergoing chemotherapy in community context
(3). To explore cultural conditions and influencing factors of community volunteering system for cancer
undergoing chemotherapy
(4). To identify and criticize the strategy to strengthen volunteering system for people with cancer
undergoing chemotherapy in community context

6. Concrete benefits of the project once completed.


After completing this research, the results of this study can:
(1). For government, this research result can give the recommendation for a modified community
volunteering system for people with cancer undergoing chemotherapy
(2). For health volunteer, this research result can explore their role and function. Therefore, The
existence of volunteer can be appreciated.
(3). For community, this research result can give information to the community regarding the existence
of a community volunteering system for people with cancer undergoing chemotherapy
(4). For people with cancer under going chemotherapy, this research result can increase people with
cancers' quality of life through the community volunteering system
(5). For health care provider, this research result can help health care provider to get the information
related the needs and demand of people with cancer and increase the health care service trough
strengthening community volunteering system

7. Research methodology (Make a check mark (√) in the boxes where applicable. In case mixed methods
are used, check both qualitative and quantitative methods used).
0 a. Qualitative
0 Phenomenology
0 Ethnography/Anthropology

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0 Grounded Theory
0 Case Study
0 Narrative Approach
0 Others (Please specify)...................
0 b. Quantitative
0 Non-experimental Research
0 Descriptive Research
0 Observational Research
0 Survey Research
0 Correlational Research
0 Predictive Research
0 Causal-Comparative Research
0 Experimental Research
0 Pre-experimental Research
0 Quasi-experimental Research
0 True Experimental Research
0 c. Action Research/ Participatory Action Research
0 d. Research and Development
0 Others (please specify).........................................................

8. Methods of data collection and research tools (Please specify both data collection method and research
tools as well as attaching documents relating to data collection).
0 1. Data collected by
0 Self-response questionnaires (Responses made by the subjects)
0 Interviews (Data recorded by the researcher/co-researcher)
0 2. In-depth interviews
0 Interview questions
0 3. Focus Group Discussion
0 Guidelines or issues for the discussions
0 4. Observation
0 Participatory observation guidelines
0 Non-Participatory observation guidelines
0 5. Others (Please specify both data collection methods and research tools)........................

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9. Background and review literature
- Rationale/research questions
Cancer is still a serious health problem in the world. One in six people died because of cancer. In
2018, 18.1 million new cases with mortality were up to 9.6 million. World Health Organization (WHO) predicts
that in 2040 cancer cases will reach 29.4 million new cases (WHO, 2020). The main problem that correlated
with SDG’s goal in cancer is premature death (30-69 years), which is predicted to decrease insignificantly. By
2030. WHO already has a priority strategy in handling cancer problems, especially to achieve the SDG's target.
One of the priorities set by WHO is providing palliative care for all (WHO, 2020). Palliative care is an approach
to improving the quality of life of patients and families suffering from life-threatening illnesses (WHO, 2013).
Cancer is a life-threatening disease that has complex management and involves many factors.
One of the cancer treatments is cytotoxic chemotherapy. Although chemotherapy could increase
life expectancy for cancer patient (Parkes et al., 2019), chemotherapy can impact cancer patients’ life and
emerge a complex problem. In general, chemotherapy will affect the patient's physical condition due to the
side effects of chemotherapy, will cause trauma to the activities of daily life and they need adequate social
support (Suwankhong & Liamputtong, 2018; Wampaalu et al., 2016). An inadequate health system can also
add to the patient's burden, especially in managing side effects and psychological counseling when the
patient is at home and interacting with people in the community (Gorman, 2018). Therefore, integrating
between hospital-based and community-based in cancer management needs a special attention.
Volunteering is a strategy to improve the quality of health care systems, especially in the community
context. Volunteering can be a solution to fulfill health care demands in rural areas (Yansaneh et al., 2014).
In the cancer context, volunteers play a vital role in improving cancer patients' quality of life. Volunteering
has a role as social support and mediator between health care providers and patients. The qualitative
synthesis result revealed that the volunteer became a mediator, accompanying the patient and as a listener
(Burbeck et al., 2014).. Several high-income countries have been strengthening the volunteering system and
are involved in the health care system, especially cancer management (Burbeck et al., 2014). However,
volunteers' existence in caring for people with cancer has many challenges in the middle- and low-income
countries, and it needs to perform a comprehensive study (A’la et al., 2020; Kamaludin et al., 2013).
As one of the middle-income countries, Indonesia strives to improve the quality of cancer
management services by optimizing community-based care through volunteering system enhancement
(Rochmawati et al., 2016). The government has issued a policy on community empowerment in the Ministry
of health act Number 8/2019. However, implementation is still not focused on cancer patients. The number
of volunteers and the weak recruitment system creates obstacles in implementing the volunteering system in

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the community. (Non-government organization (NGOs) are one of the government partners to improve the
quality of health services (Mahendradhata et al., 2017). NGOs play an active role in providing health
volunteers in various cases, including cancer management. Also, NGOs' volunteers play a role in assisting
people with cancer in preventive, rehabilitative, curative, and palliative phase (Nirwana et al., 2015;
Rochmawati et al., 2016; Sari & Sari, 2019). In Indonesia, volunteers are still in a dichotomy between NGO's
volunteers and volunteer governance (village health volunteer). The synergy between NGOs and the
government in implementing volunteers could be an essential strategy in improving the health care system.
Thus, research on volunteer implementation from both the government and NGOs needs to be performed.
Although cancer's death rate is high and the volunteers' need is urgent, study about volunteering for
people with cancer is scarce. In contrast, volunteering study in other contexts such as strengthening maternal
and child health, mental health rehabilitation, Tuberculosis (TB) prevention, and prevention of infectious
diseases was performed and implemented. Two studies on volunteering systems in cancer conditions in
Indonesia were found. There are exploring the cadres (community health volunteers) in cancer prevention
Nirwana et al. (2015) and studying related decision making of volunteer for cancer patient stated that cadres
(community health volunteers) play a role in cancer prevention Sari & Sari (2019). However, The wholeness
volunteering system needs did not studied yet. Therefore, subjective view in seeing real situation needs to be
utilized in this study to understand volunteering system comprehensively.
Indonesia has 34 provinces with different geographical conditions, cultures, and policies related to
health that affects health conditions and management of health care service, especially in cancer
management. The highest incidence of people with cancers is in Yogyakarta province (4.86 per 1000
population) and continuing with West Sumatra, Gorontalo, Jakarta, Bali, and East Java (Ministry of Health,
2018). From those provinces with the highest case of cancer, East Java is the province with the highest
population with 39 million people and the biggest area with 47,800 km2. East Java has 38 districts with
different characteristics in each district. However, East Java only has four districts with chemotherapy centers,
one of which is Jember.
Jember is the third-largest city of East Java with a multi-ethnic culture either in rural or urban areas.
Jember have 733.087 populations in 3293 km2. Previous research found that 346 people with cancer visited
hospital to conduct chemotherapy within 2018 (Utami et al., 2019). Even though it already has a
chemotherapy center, Jember does not have a volunteering system from local government, unlike Surabaya
or Jakarta. However, a local NGO, Garwita Institute, has helped assist cancer patients with chemotherapy.
(Garwita Institute, 2011). Moreover, some village health volunteers doing the volunteering system for cancer
patient without organized by local government.

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Observation in the community volunteering system in Jember during 2016-2018 was conducted. The
volunteering system implemented by local NGOs has some benefits for cancer patients undergoing
chemotherapy. The patient expressed that the NGO's existence helped them. Village health volunteer
sometimes help the NGO's volunteers advocate and support cancer patients in the community. However, the
synergy between NGOs and the government has not yet been formed in this volunteering system.
Volunteering systems also need a comprehensive study with a multiperspective paradigm and a subjective
approach using postmodern philosophy. The specific issues in these phenomena that need to be analyzed
are the care demands and needs of cancer patients with chemotherapy, role and function of volunteers,
cultural aspects, factor influencing, and a strategy in strengthening the community volunteering system.

10. Population/Target Groups


a. Please indicate population (quantitative study), target groups (qualitative study), number of subjects,
and rationale for the sample size (quantitative study) and/or informants (qualitative study)
This research will involve four target groups, namely health volunteer groups (Non-
Government Organization (NGO) 's health volunteers, village health volunteers and head of NGOs),
people with cancer undergoing chemotherapy group, the family of people with cancer undergoing
chemotherapy group, health care provider (doctors and nurses) in the Jember district region,
Indonesia.
b. For quantitative studies: please demonstrate how the sample size is calculated, indicate sampling
techniques, how subjects are divided into experimental and control groups (if applicable), and
inclusion and exclusion criteria. N/A
c. For qualitative studies: please indicate how informants are selected and their characteristics. If more
than one data collection methods are used, e.g. in-depth interviews and focus group discussions
please indicate how informants for both methods are selected as well as their characteristics.
Key informants will be taken and selected from the target group using a purposive sampling
technique based on the researcher's criteria. The total informants were 64 consisting of 10 informants
for observation, 34 informants for in-depth interviews, and 20 informants for Focus group Discussion
(FGD).
Key informants for observation
Key informants for observation in this study are 10 health volunteers that consist of 5 participants
from NGO’s health volunteers and 5 participants from village health volunteer (Governmental
volunteers). Criteria for health volunteer and village health volunteer is health volunteers or village
health volunteer with 18-75 years old who have responsibility in that fieldwork and have affiliation

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with Garwita Institute (Health volunteer) or government (village health volunteer) and have
experience in caring cancer patients in community.
Key informants for in-depth interview
Total key informants for in-depth interview are 34 who consist of volunteers, people with cancer
undergoing chemotherapy, head of NGO, community health nurses, oncology nurse, and oncology
doctor. In details, table 1 will describe each amount of key informants and criteria for selecting key
informants
Table 1 Amount and criteria of key informants for in-depth interview
Key informants N Criteria for selecting key informants
Health volunteers (5 10 Health volunteers or village health volunteer
participants from NGO’s with 18-75 years old who have the responsibility
health volunteers and 5 in that fieldwork and have affiliation with Garwita
participants from village Institute (Health volunteer) or government
health volunteer (village health volunteer), have experience in
(Governmental volunteers)) caring cancer patients in the community, being
able to communicate, no memory impairment
and normal hearing ability
People with cancer 10 People with cancer undergoing chemotherapy
undergoing chemotherapy with 18-75 years old, being able to communicate,
no memory impairment, normal hearing ability,
diagnosed by a doctor, during chemotherapy
treatment in Baladhika Husada Hospital, Jember
(after two weeks chemotherapy treatment in a
hospital), and there were no side effects of
chemotherapy that occur (nausea, vomiting, and
fatigue).
Family of people with cancer 8 Family of people with cancer undergoing
undergoing chemotherapy chemotherapy with at least 18 years old, no
memory impairment, normal hearing ability, being
able to communicate and living together with
patients and caring patient’s daily lives more than
one year during the chemotherapy process.
Head of NGO 1 Person who responsible in NGO management and

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volunteer coordinator.
Nurses (2 nurses who works in 4 Nurses with 20-60 years old who have
hospital and 2 nurses who responsible in caring for cancer patient
work in community) undergoing chemotherapy either in hospital or in
community
Doctor 1 Doctor with 20-60 years old who have experience
in chemotherapy treatment
Total 34

Key Informants for focus group discussion


The key informants in this FGD will be divided into 4 groups, every groups will consist 5 people. In
details, it will be provided in table 2 .
Table 2. Name, member, and criteria groups in FGD
FGD groups Group members Criteria for selecting key
(N=5) informants
Health Consist of 3 NGO’s health Health volunteers or village health
volunteers group volunteers and 2 village health volunteer with 18-75 years old who
volunteers from government have the responsibility in that
and composition between men fieldwork and have affiliation with
and women are 2 and 3 Garwita Institute (Health volunteer)
informants or government (village health
volunteer), have experience in caring
cancer patients in the community,
being able to communicate, no
memory impairment and normal
hearing ability and have a compatible
device for google/zoom meetings,
either mobile phones or personal
computers
The people with Consist of 2 men and 3 women People with cancer undergoing
cancer with cancer undergoing chemotherapy with 18-75 years old,
undergoing chemotherapy. being able to communicate, no

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chemotherapy memory impairment, normal hearing
group ability, diagnosed by a doctor, during
chemotherapy treatment in
Baladhika Husada Hospital, Jember
(after two weeks chemotherapy
treatment in a hospital), there were
no side effects of chemotherapy that
occur (nausea, vomiting, and fatigue)
and have a compatible device for
google/zoom meetings, either mobile
phones or personal computers
The family group Consist of 2 men and 3 women Family of people with cancer
living with cancer family member. undergoing chemotherapy with at
patient least 18 years old, no memory
undergoing impairment, normal hearing ability,
chemotherapy being able to communicate and living
together with patients, caring patient’s
daily lives more than one year during
the chemotherapy process. and have
a compatible device for google/zoom
meetings, either mobile phones or
personal computers
Health care Consist of 1 oncology Doctor, 2 Nurses with 20-60 years old who
provider group nurses who works in hospital have responsible in caring for cancer
and 2 nurses who work in patient undergoing chemotherapy
community and composition either in hospital or in community
between men and women are and have a compatible device for
2 and 3 informants google/zoom meetings, either mobile
phones or personal computers.

Doctor with 20-60 years old who


have experience in chemotherapy
treatment and have a compatible

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device for google/zoom meetings,
either mobile phones or personal
computers.

d. Are the following vulnerable volunteers (who cannot make decisions in critical situations) used in the
study?
No
Yes (Please make a check mark (√) where appropriate)
o Infants, children
o Pregnant women
o The elderly
o Patients with chronic diseases
o Those who cannot give consents on their own behalf
o The disabled
o Prisoners, alien labors, the socially disadvantaged
o School pupils/students, subordinates
o Others (please specify) .........................................
If there are vulnerable subjects,
1) Please state reasons why this group of subjects must be included in the study.
The community volunteering system is a complex phenomenon. In this study,
the researcher wants to know the implementation of the community volunteering system
for the vulnerable group, namely people with cancer undergoing chemotherapy. Therefore,
people with cancer undergoing chemotherapy's perspective need to be explored
comprehensively to understand this phenomenon. Moreover, researchers believe that a
multiperspective view is the paradigm of this research. So, not only the perception and
information from health volunteers and health care providers, but also the perception and
information from people with cancer undergoing chemotherapy are essential to know in
seeing this phenomenon. One outcome of this study was to provide the recommendation to
the government in modifying its policy related volunteering system for people with cancer
undergoing chemotherapy. Therefore, this study requires the participation of people with
cancer undergoing chemotherapy.

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2) Please also suggest how you plan to protect these vulnerable subjects.
To protect vulnerable subject, researcher will conduct some strategy. There are:
• Researchers will take data (in-depth interview and FGD) 14 days (2 weeks) after
chemotherapy to reduce the risk of chemotherapy
• Researchers will provide vulnerable participant a free physical assessment (blood
pressure, body temperature, heart rate measurement, and head-to-toe physical
examination) from the healthcare professional before the interview and FGD to see the
patient's condition related to cancer and the effects of chemotherapy. If there is results
of a basic physical assessment that need to be consulted with healthcare provider,
researcher will accompany you to get specific treatment
• The researcher will give the participant the freedom to take place where she/he feels
comfortable for the in-depth interview
e. How are the volunteers approached?
Researcher will utilize specific approach to the informant candidate. The implementations of
participants approach are:

• The researcher will request the permission letter from Faculty of Nursing, Khon Kaen University
to chemotherapy center in Baladhika Husada Hospital, department of health and local NGO
(Garwita Institute)
• Researchers will enter the fieldwork through the gatekeeper (the head of the chemotherapy
center in Baladhika Husada Hospital, Jember, head of the department of health in Jember, and
head of NGO in cancer volunteers).
• The researcher will bring a letter to Baladhika Husada hospital. In this hospital, researchers will
find 4 participants group, namely people with cancer undergoing chemotherapy, cancer patients
undergoing chemotherapy's family, nurse, and doctor. The researcher will present the related
research aim and expected outcomes in this hospital. Before contacting respondent, The
researcher will send a letter to the hospital director to get permission to access the medical
records of all cancer patients, including name, address, date of chemotherapy, and telephone
number. After obtaining permission from the director, the researcher will contact the person
responsible for the patient's medical record at the Baladhika Husada hospital. In searching for
medical records, researchers will follow all the rules given by the hospital regarding access to
patients' medical records. Then, the researcher will directly contact the respondent from the data
obtained from the medical record.. For people with cancer undergoing chemotherapy and

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family, researchers will contact participants through telephone and make a appointment to go to
the patient house after 14 days (2 weeks) chemotherapy treatment to minimize the effect of
chemotherapy. Researchers will select participants purposively according to the inclusion criteria.
Other participants, namely oncology nurses and oncology doctors, also are gotten from the
Baladhika Husada Hospital. Researchers will request the data of doctors and nurses who work in
the oncology ward to be participants. Before conducting the in-depth interview, the researcher
will build trust and explain why they are chosen as key informants in the study. Also, the
researcher explaining that all information from them will be confidential, and participating in the
study is voluntary, and they have the right to accept or refuse to participate in the study. The
researcher will give the participant the freedom to take time and place for the in-depth
interview. Researchers also will search the other participants based on hospital data for FGDs on
cancer patients undergoing chemotherapy, family, and health care groups. The FGD will be
conducted after in-depth interview finish.
• Researchers also will send permission letters to local NGOs in Jember (Garwita Institute) to
conduct observations and in-depth interviews with health volunteers and head of NGO and
request permission to access the health volunteers’ telephone number. Researchers will present
the related research aim and expected outcomes in this NGO. Researchers will contact
participants through telephone/direct meeting and make a appointment. Researchers will be
assisted by the NGO's head to observe volunteer activities in helping people with cancer
undergoing chemotherapy. Researchers will follow the daily activities of community volunteers
when helping people with cancer undergoing chemotherapy. During the observations, the
researcher will take field notes contain descriptions of events and behavior frequency in the
fieldwork. To get data accuracy, the researcher will conduct observations everyday based on
community volunteering activity, for two or three months of study. Researchers will also conduct
in-depth interviews with health volunteers and head of NGO. Before conducting observation and
in-depth interviews, the researcher will build trust and explain why they are chosen as key
informants in the study. The researcher also explains that all information from them will be
confidential, and participating in the study is voluntary and has the right to accept or refuse to
participate in the study. The researcher will give the participant the freedom to take time and
place for the in-depth interview. In-depth interview will take 1-3 session with 60-90 minutes per
session. Researchers also search the other participants based on data from volunteers at NGOs to
conduct FGDs.

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• For other participants, namely village health volunteers and nurses who work in community,
researchers will send permission letters to the head of the department of health in Jember.
Researchers will ask for data from public health centers that have cancer patients. Researchers
will search village health volunteers and community nurses who work in those public health
centers and match the inclusion criteria. Researchers will contact participants through
telephone/direct meet and make a appointment. Researchers will conduct observation with
village health volunteers and in-depth interview with village health volunteers and community
nurses. Before conducting the observation and in-depth interview, the researcher will Build trust
and explain why they are chosen as key informants in the study. The researcher also explains
that all information from them will be confidential, and participating in the study is voluntary
and has the right to accept or refuse to participate in the study. The researcher will give the
participant the freedom to take time and place for the in-depth interview. In-depth interview will
take 1-3 session with 30-60 minutes per session. Researchers also will search the other
participants (village health volunteers and community nurses) to become FGD participants with
same approach with in-depth interview and observation.
• Due to COVID-19 pandemic, FGD will conduct through online approach. The researcher will
contact the participant candidate and discuss the FGD. Discussions can be performed via
telephone or group chat on social media. If all participants have agreed on the time to conduct
an online FGD, the researcher will contact the participant candidates to meet and explain FGD
online procedure and research objective and ensure the Internet connection one day before the
FGD online activity

f. If there are compensations for the volunteers’ time or their travel expenses, please specify the
amount and other details. If there are souvenirs, please indicate the details of the souvenirs and their
prices. (The information given here must be the same as that in the Information Sheet).
In observation Volunteer/participants (Health volunteer or VHV) will receive compensation
IDR 75,000 (5.2 USD) that will be given once in the first day observation as a token of gratitude for the
informant who agreed to the interview involvement.
In in-depth interview Volunteer/participants will receive compensation IDR 75,000 (5.2 USD)
that will be given once in the first interview meeting as a token of gratitude for the informant who
agreed to the interview involvement.
In Focus group discussion, because researcher will use online focus group,
volunteer/participants receive compensation IDR 25,000 (1.7 USD) that will be given before FGD

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started and additional souvenir in the form of a credit phone/internet quota that costs around IDR
50,000 (3.42 USD) as a token of gratitude for the informant who agreed to the interview involvement.
Souvenirs will be given via bank account number (if any) or sent by courier before the FGD begins.

11. What method is used in obtaining the volunteers’ consent? (Please specify clearly)
¨ a. Signed written consent (as in the attached subject’s Information Sheet and Informed Consent Form)
¨ b. Verbal consent (as in the attached subject’s Information Sheet)
1) The research study contains risk no greater than that the research subjects receive in carrying out
their daily life because informants will only be requested to involve in in-depth interviews and FGDs at the
participants' homes. Also, it will take only 60-90 minutes for the interview and FGD and does not involve treatment
on the subjects that necessitates written consent from the subject (e.g. diagnostic examination and medical
treatment)
Note: Verbal consent will be only given to the vulnerable subject, namely people with cancer undergoing
chemotherapy. Verbal consent is provided because a participant with a cancer condition may have difficulty
doing activities. Therefore, the participant only performs verbal consent and no need to sign a written
consent. Signed written consent was given to the other participant groups: health volunteer, head of NGO,
the family of people with cancer undergoing chemotherapy, and health care provider.
¨ c. By action, that is, anomymously completing a self-response questionnaire and returning the
questionnaire to the researcher either or paper or online (Returning a questionnaire or responding to a
questionnaire online is considered as giving consent by action).
¨ d. Waiver of Informed Consent: please specify all of the following 4 reasons.
1) The research study contains risks no greater than those the research subjects receive in their daily
life because..........................................................................................................................................
2) Waiving the informed consent does not affect the subjects’ rights and well being
because........................................................................................................................................
3) The research study cannot be carried out if the informed consent is not waived
because...................................................................................................................................................
4) Wil the research subjects be notified further about the research study and how will they receive the
information?
.............................................................................................................................................................
(If Item 11 e. has been chosen, please skip Item 12)

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12. Explain the process of obtaining subject’s consent :
12.1) Who is the person who asks for consent?
Researcher will ask consent to all participants personally because researcher has no
condition to coerce the volunteers to join the study under undue influence
12.2) When are the volunteers asked for consent?
For people with cancer and family, after making an appointment through telephone, the
researcher will come to the patient's house at least after 14 days (2 weeks) of chemotherapy
treatment to reduce the risk of chemotherapy side effects and wait for the patient's condition to
be stable. Especially for people with cancer, because of vulnerable condition, they no need to sign
the consent, and use verbal consent. For health care groups (nurses and doctor), health volunteers
group (NGO’s health volunteer and village health volunteer), and head of NGO, consent form
fulfillment will be performed after carrying out their duties in the hospital, patients’ home, public
health centers, office, or community or when free time based on appointment before.
Before signing the consent, All Participants/volunteers have the right to ask questions
before participating or not participating in this research. The researcher also will give time for
participants to decide whether to participate in this study or not. Participants will not get coercion
in participating in the research.
12.3) Where does the process of consent take place?
For people with cancer and family, participant candidates can choose to fulfill the consent
form at home or at their workplace. However, researchers will offer participants candidates to
decide where to fill out the consent form.
For health care groups (nurses and doctor), health volunteers group (NGO’s health
volunteer and village health volunteer), and head of NGO, participant candidates can choose to fill
out the consent form at home, office, public health center, or hospital. If health care groups and
health volunteers choose in the hospital or public health center, the researcher will prepare a
private place to make the participant more comfortable and private.

13. What are the direct benefits to the volunteers and/or benefits to the community involved in the study
including community empowerment?
All participants (people with cancer undergoing chemotherapy, family of people with cancer,
health care groups (nurses and doctors), health volunteers groups (NGO's health volunteers and village
health volunteers), and head of NGOs) may not get benefit directly from your participation in this research.
Also, the community gets no direct benefits. No direct benefit in this study is policy recommendations to

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the government regarding implementing a volunteering system in the community. With this policy
recommendation, it is hoped that the health service system for people with cancer can increase. The
proposing volunteering system can improve the quality of life for cancer patients and their families. The
community will also get an impact in improving the quality of health services. From health volunteers and
health care providers, their roles and functions will be more organized through this volunteering system
policy.

14. What are (if any) the negative/undesirable effects that may happen to the people or community involved
in the study? For example,
a. Are there any risks (physical, mental, social, and economic) or inconveniences. What measures has
the researcher planned to prevent any harmful effects or to remedy such harmful effect ? (Causing
volunteers to waste time or feel uneasy with interview questions, issues in focus group discussions,
or being observed in both participatory or non-participatory observations, or attending other
research activities e.g. an elderly being interviewed for a long time, is considered as one kind of
risks).
Although this study only utilized interviews and focus group discussion and no
medical/social/behavior intervention, participants might get an undesirable effect, namely feeling
uncomfortable, tired, or depressed. Moreover, people with cancer undergoing chemotherapy may
emerge health condition change during the interview process due to cancer and chemotherapy.
Researchers will also minimize risk by giving participants the freedom to choose the time and place
to interview. Also, for vulnerable subjects, namely people with cancer, researchers will come 14
days (2 weeks) after the last chemotherapy treatment, assuming that the symptoms of
chemotherapy side effects have decreased. If the risk comes, the interview can be stopped, and the
researcher summarizes the results, then interview can continue again according to our agreement
once participants feel comfortable.
b. In the case of effects on the community, how does the researcher plan to approach or consult with
the community?
If undesirable effects emerge in the community, the researcher will consult the community
leader, head of the health department, and health care provider in the community. Researchers will
conduct a meeting to discuss problems that arise and explain the purpose of this research to all
elements in the community again.

15. What method is used in protecting the volunteers’/community’s privacy and confidentiality?

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(Please indicate the following details in the Information Sheet)
a. Privacy protection
In the data collection process, the respondent may decide to stop in the data
collection process without any further discrimination. Researcher will keep anonymity of all
respondents. Participants’ name and any other identity will be written in code number and
will not be referred in any other document outside this study. Any information that
participant give will be shown by number and coding. The researcher will not photograph or
videotape the participants/volunteers, but will document the community's environment or
background.
b. . Confidentiality protection
Researcher will utilize audio recording and notes to record your answer. The
researcher will save the audio recording of the interview on the device that uses password
made by the researcher. Moreover, the notes that the participants work on will be carefully
stored in a lockable cabinet. Only the researcher can access this data, and after the analysis
is complete, the researcher will destroy the data obtained from the participants

16. Is the researcher involved with the research tool e.g. designed program, study syllabus, or product or
service to be tasted?
0 Yes. Please specify the involvement ………………………………………………………………………………………
And Measure (s) that the researcher has planned to guard against the unreliability of data and undue
risks to the volunteers is (are) ...................................................................................................................................
( For example, if the researcher is the owner of the product or service, the assessor of the outcome
should be a person who Does not have a stake in the product or service ; if the researcher is course
teacher, data from the volunteers must not have any influence on their academic performance ; or if
the researcher is head of the office, data from the volunteers must not have any influence on their work
performance.
0 No.

17. What are the budget details for this research study? What is the source of the budget for the research? (If
the researcher’s private fund is used, there is no need to answer these two questions).
Items Budget (Baht)
Writing research and English editing 20,000
Documents 15,000

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Compensation for participant 8,300
Internet quota/credit phone for participants 2,200
Transportation for data collection 20,000
Other needs (telephone cost, internet cost, data collection equipment) 15,000
Total 80.500

This study will support by KKU scholarship

18. What is the length of time for this research study?


This research will be started from July 2021 and finished March 2022
Expected length of time for the research study is 9 months.

19. Examination of the research methodology from the affiliated faculty


0 The research proposal was approved by the research proposal committee for the Faculty of
Nursing on 19 March 2021
0 The research proposal was approved by the thesis advisor on 14 April 2021
0 Others…………………………..…………………………………………………………………

20. What is the researcher and research team’s experience in research ethics?
o The researcher and research team have attended the following training courses for ethics in research
studies. Give individual details and proofs of attendance.
1) Researcher name: Muhamad Zulfatul Ala
Course/training topics: The Collaborative Institutional Training Initiative (CITI) Good clinical
practice course and CITI Social and behavioral research course for Basic/refresher (online
course)
Year taken: 2019
2) Researcher name:..........................Course/training topics:...............................Year taken ...............
3) Researcher name:..........................Course/training topics:...............................Year taken ...............
o The researcher has not taken the training course, but has planned to develop the potential of the
research team according to international standards as follows:
..................................................................................................................................................................................

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21. The following documents are attached in requesting the approval from the KKUEC to conduct the proposed
research study.
* Submission fee receipt
* KKUEC’s submission Form for Ethics in Human Research for Social/Anthropological studies (Version 2.0
Dated 1 July 2021).
* Research proposals (Version 2.0 Dated 1 July 2021).
* Information Sheet for research subjects (Version 2.0 Dated 1 July 2021).
* A simplified and shortened version of the Information Sheet with version number and date (in case
where the original version is longer than 6 pages) if applicable.
* Informed Consent Form for research subjects (Version 2.0 Dated 1 July 2021).
* Principal investigator’s and/or co-investigator’s curriculum vita in Thai or English, and certificate of
participation in a workshop for ethics in human research
* Research tools (Version 1.0 Dated 28 April 2021).
* Submit form for Thesis/Independent Study Proposal graduate study, Khon Kaen University (GS23) (In
case of graduate students)

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I hereby certify that the above information is truthful, and I fully and clearly understand every piece of the
information given.

Signature………………………………….…………............... Signature ………………………………….……

(Associate Professor Dr. Khanitta Nuntaboot) (Muhamad Zulfatul Ala)


Project Advisor principal investigator

This protocol has been approved by the affiliated organization.

Signature …………………………………….........
(......................……………………………….............................)

Head of Department/Office or Dean of faculty

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