Received: 21 June 2019 | Revised: 18 August 2019 | Accepted: 24 August 2019

DOI: 10.1111/aswp.12185

ORIGINAL ARTICLE

What determines the sustainability of community‐based

palliative care operations? Perspectives of the social work
professionals

E.P. Abdul Azeez | G. Anbu Selvi

Sree Saraswathi Thyagaraja College,

Pollachi, India Abstract
The palliative care services are least operational in India with exception to the State
Correspondence
E.P. Abdul Azeez, Sree Saraswathi of Kerala where the movement is widespread. Kerala's model of palliative care is
Thyagaraja College, Pollachi, Tamil Nadu, known for its community‐based approach and efforts in universalizing the access.
India.
Email: instinct000@gmail.com This model is unique in the domains of sustainability and mode of interventions.
Cognate to the palliative care interventions worldwide, social workers play a cru‐
cial role in the service delivery of palliative care interventions in Kerala too. In this
context, the present study attempted to explore the determinants of sustainable
community‐based palliative care operations from the perspectives of professional
social workers. The study adopted a descriptive qualitative research design using an
in‐depth interview method. Interviews were conducted with 12 professional social
workers engaged in community‐based palliative care delivery in the northern and
central region of Kerala, India. The interviews were audio‐taped, transcribed, and
further analyzed applying thematic analysis method. Five major themes, holistic care,
community participation, volunteerism, resource mobilization, and socio‐political
environment, were emerged from the data manifesting as the determinants of suc‐
cessful palliative care interventions. The result of the study has implications for the
policymakers, public health professionals, and social workers who are involved in the
development of similar models.

KEYWORDS
community‐based palliative care, Kerala model of palliative care, social work

1 | I NTRO D U C TI O N

Palliative care interventions are essential in the changing health scenario. The increased incidence of life‐threatening diseases, chronic condi‐
tions, and terminal illnesses necessitates the interventions of palliative care. Though palliative care plays a crucial role in enhancing the quality
of life of patients, WHO (2018) reports that globally only 14 percent of people who currently requires the services of palliative care get it.
The scenario is more critical in India where palliative care access is reportedly available to just two percent who need such services (Shelar,
2018). The currently available evidence underlines the importance of palliative care services for the non‐communicable diseases (NCD) that
are of serious nature and other chronic and life‐limiting conditions that require a long‐term symptom management (Heins et al., 2018; Jatoi,
2011; Ringdal & Andre, 2014; Rome, Luminais, Bourgeois, & Blais, 2011). The cost‐effectiveness of the palliative cares in comparison with
other modes of treatment is also evident (Bickel & Ozanne, 2017; Brumley et al., 2007; Hatziandreu, Archontakis, & Daly, 2008; Smith, Brick,
O’Hara, & Normand, 2014).

334 | © 2019 John Wiley & Sons Australia, Ltd wileyonlinelibrary.com/journal/aswp Asian Soc Work Pol Rev. 2019;13:334–342.
ABDUL AZEEZ and ANBU SELVI | 335

The palliative care has an integrated approach that touches the different domains of patients and families including physical care, psycho‐
logical, social, and spiritual support. The services of palliative care are the beckon of hope for many who have left with no treatment or those
who require managing the symptoms. Pain management and psychosocial care are important components of palliative care. Access to pallia‐
tive care acts as a significant factor in improving the quality of life of the patients and their families. However, access remains a crucial issue. As
indicated, the access to palliative care in India is merely available to a minuscule proportion of the population, except the case of Kerala state
where the universalization of palliative care access to all is on the verge. Kerala's model is known as community‐based palliative care, which
is best suitable for resource‐poor settings like India. The palliative care model of Kerala is driven by the innovative social approach, which is
community‐led and sustainable (Philip, Philip, Tripathy, Manima, & Venables, 2018). The core dimension of the model is providing palliative
care, mainly home‐based care, free of cost by a multidisciplinary team with the active support of the community and the trained volunteers.
The psychosocial and economic supports to the patient and families are also integral to the model.

2 | R E V I E W O F LITE R AT U R E

The palliative care operation in the state of Kerala has emerged as a unique “model” in the recent past. The major contributory factor for ac‐
claiming it as a unique model is the community‐based approach (Azeez, 2015a). The palliative care movement in Kerala is largely managed by
community‐based organizations with active support from the general public. Another factor makes Kerala's palliative care model different is
the home care units. The services are delivered at the doorstep of the patients and their families. The activities of the palliative care, except
the clinical aspects, are largely managed by the trained volunteers. The higher involvement of the community and the general public makes
the model economically and socially sustainable. The community participation evident in the palliative care movement of Kerala is momentous
(Gupta, 2005; Shukkor, 2014; Stjernsward, 2005). The palliative care units mobilize fund from different sources including micro‐donations, the
business community, and funds received from various socio‐religious groups (Sallnow & Chenganakkattil, 2005; Sallnow, Kumar, & Numpeli,
2010). Many of the community‐owned palliative care units adopt social entrepreneurship as an important source of income generation to
support the families in need (Azeez, 2014).
Santosh (2015) argues that the palliative care movement in Kerala becomes successful due to the active participation of people, through
contributions and voluntarism. Boughey (2011) in her analysis on the implementation of palliative care in Kerala and Victoria, Australia,
attributed the uniqueness of Kerala model to the active involvement of volunteers. Further, in Victoria, volunteers are involved but the di‐
versity of volunteers and roles played by them are varied and limited. Volunteers in Kerala involved in multiple roles, which include clinical
management, psychosocial support, and fundraising. Khosla, Patel, and Sharma (2012) emphasize that palliative care model of Kerala is a typ‐
ical example of health service, which has a focus beyond the biomedical aspects. This model has evolved as a unique one in its operation by
addressing various physical and psychosocial needs of the patients (Koshy, 2009). The current body of evidence underlines the efficacy of the
community‐based palliative model in improving the quality of life and symptom management and in providing psychosocial services (Banerjee,
2009; Dongre, Rajendran, Kumar, & Deshmukh, 2012; Thayyil & Cherumanalil, 2012; Santha, 2011).

2.1 | Evidence on sustainability of kerala model of palliative care

The available literature emphasizes the Kerala model of palliative care as a sustainable model. Since its inception in the mid‐1990s, palliative
care interventions could survive its operations in the community‐led model. The care is provided to the patients at their home free of cost
including medicine and other necessary items (Unni & Edasseri, 2012). Unlike the typical hospice care, Kerala's model operates through home
care units in which a group of multidisciplinary team members provides the service at the home of patients. Azeez (2015a,2015b) reports that
the community‐based palliative care model is highly sustainable in the economic and social domains as the resources were mobilized from the
community as micro‐donations and manpower is hailed from the local community in the form of volunteers. The major backbone of this model
is the volunteers (Kumar, 2007), and they contribute significantly to make the model sustainable.
World Palliative Care Alliance and WHO (2014) consider Kerala's model of palliative care as highly sustainable due to the ownership and
involvement of the community. Stjernsward (2005) also reports Kerala's model of palliative care as financially sustainable as the funds were
raised by the people (volunteers). The patient and families avail the necessary treatment free of cost, which helps them to reduce the treatment
costs significantly. The Quality of Death Report (2010) place Kerala at par with the European and developed countries, while India was ranked
at the least, and the report highlights the sustainable means adopted by the Kerala model. The model is sustainable in many domains. Firstly,
the resources required for the functioning of palliative cares are mobilized from the community itself. Hence, most of the community‐based
palliative care is economically sustainable and independent. Secondly, the care provisions are delivered by a multidisciplinary team managed
by local volunteers. The volunteers actively involved in identifying the needs of the patients and addressing those by innovative means. Kumar
(2013) reports that the involvement of volunteers potentially contributes to the sustainability of home care‐based palliative care of Kerala.
336 | ABDUL AZEEZ and ANBU SELVI

Finally, the policy mechanisms adopted by the state of Kerala are rewarding for the palliative care movement. Azeez (2015b) argues that the
palliative care policy implemented by the Kerala state has given great momentum for the sustenance of palliative care interventions. Though
the palliative care model of Kerala has been widely acclaimed as a sustainable model, attempts to explore its determinants were not evident in
the current literature. The literature available on the model at present largely addresses the issue of patient satisfaction, clinical aspects, and
description of the model. In this context, understanding the perspectives of professionals involved in the service delivery is ideal to explore
the determinants of sustainable community‐based palliative care operation.

3 | S O C I A L WO R K PR AC TI C E I N PA LLI ATI V E C A R E A N D CO NTE X T O F TH E S T U DY

The practice of social work in palliative care and end of life care is integral (Reith & Payne, 2009; Small, 2001; Watts, 2013). In an ideal pallia‐
tive care team, social workers constitute an important position, and along with other professionals, they have a long‐lasting relationship with
the patients (Spruyt, 2011). Social workers in palliative care settings involved in multiple roles, both clinical and non‐clinical. The palliative
care social work in India is developing (Ragesh, Zacharias, & Thomas, 2017). However, the case of Kerala is different. The social workers play
a crucial role in the management and service delivery of palliative cares in Kerala. Azeez (2013) reports that social workers involved in the
community‐based palliative care are engaged in multiple tasks including psychosocial care, advocacy, research, and administration. The social
workers are closely working with the organization as well as patient‐related services. Being a professional group who are engaged in clinical as
well as managerial tasks, the perspectives of social workers are important in understanding the operational aspects of palliative care. Hence,
the present study attempts to investigate the professional social worker's perspectives on the sustainability of community‐based palliative
care model of Kerala. The exploration of the determinants of sustainability and successful palliative intervention would be helpful in further
replication of the model in other parts of the country and the world.

4 | M E TH O DS

4.1 | Design
The present study adopted a descriptive qualitative research design using an in‐depth interview method. As the present study attempts to
explore the perspectives of the social work professionals, the employment of qualitative descriptive method is apposite. Sandelowski (2000)
argues that qualitative descriptive method is an ideal method for acquiring a straightforward description of the phenomena. Unlike other
qualitative research designs, qualitative descriptive research is least theoretical and more concerned with the description of the phenomena
(Lambert & Lambert, 2012).

4.2 | Study setting and participants

The setting for the present study was the northern and central region of the State of Kerala, India. The community‐based palliative care
movement in Kerala is widespread in the northern followed by the central region. Most of these palliative care units have a multidisciplinary
team including social workers. They play a very crucial role in the managerial and clinical aspects of palliative care. This sets the context of the
present study in exploring the perspectives of social workers. The participants of the study were professionally qualified social workers. The
participants of the study were purposively chosen. To ensure the participation of most suitable respondents, a set of inclusion criteria was
applied. The inclusion criteria were a) only professionally qualified social worker was considered; b) those with at least two years of full‐time
experience in the field of palliative care only were considered, and c) social workers engaged in palliative care units operating for a period less
than 5 years were only were selected as the participants.
An initial list of social workers who fit into the inclusion criteria (5) was prepared and contacted for participation in the study. The initial
participants further suggested other social workers who fit into the inclusion criteria. On this process, data saturation was occurred by com‐
pleting the 10th interview. However, to ensure the saturation, two more interviews were conducted. Hence, the total numbers of participants
were 12.

4.3 | Data collection and analysis

The interview was the method used for data collection. In‐depth interviews were conducted with the participants with the help of a semi‐
structured interview schedule. All the interviews were audio‐taped with the consent from the participants. The interview took 40–70 min to
complete. The audiotapes were transcribed in verbatim and subjected for analysis. Close examinations of the data were done, and the data
analysis was carried out applying thematic analysis method proposed by Braun & Clarke (2006).
ABDUL AZEEZ and ANBU SELVI | 337

4.4 | Ethical considerations

The ethical principles for researching with the human subject were strictly followed. Written informed consent was taken from all the partici‐
pants of the study. The objectives of the study were detailed to the participants before the study. Information sought from the participation
was kept confidential, and any personal indications of the people involved in the study are not made public.

5 | R E S U LT S

The transcribed data were subjected to a thorough examination and searched for meaningful themes. Five themes that manifest the perspec‐
tives of the social workers as the determinants of the sustainable and successful operation of palliative care have emerged.

5.1 | Characteristics of palliative care and social workers

The social workers were recruited for the present study was from the palliative care that has substantial years of experience in the field. The
majority of palliative care has 6–10 years of experience. All the palliative care from where the social workers were recruited has functioned
under community‐based or non‐governmental organizations. All of them were completely depended upon the community‐based funding,
micro‐donations, social entrepreneurship, and other sources. Most of the social workers have experienced between 5 and 6 years in the field
of community‐based palliative care interventions (Table 1).

5.2 | Holistic care

The community‐based palliative care approach of Kerala attempts to deliver quality services to the patients and families. The services pro‐
vided are grounded in the palliative care standards in addition to the locally relevant strategies. The palliative care operations in Kerala are
unique in many ways. The holistic approach to care is the foremost one. The community‐owned palliative care centers attempt to deliver ho‐
listic care. WHO (2002) proposes physical, psychological, social, and spiritual aspects of care in the palliative interventions. Apart from these,
the Kerala model involves addressing the economic and familial needs as well.
A senior social work professional responded to the question, what makes the palliative model sustainable and successful, that “Well,
the care we provide is comprehensive. It is not just dressing the wounds and providing medicine, it's more than those. What if a patient
requires something else than medicine and physical care? We address the psychological, social and economic needs of the patients to a
great extent.”
The chronic and terminal illnesses and life‐limiting conditions significantly impact the socio‐economic and psychological state of patients
and families. They have to spend a huge amount of money without expecting any treatment outcomes. In this crucial stage, the services of
palliative care are vital for them, especially the psychological and financial needs. The palliative care in the studied locality provides economic
support in the form of medicines, food, medical equipment, and other consumable and non‐consumable items necessary. The physical care
rendered to the patients and family helps to reduce their treatment costs. The multidisciplinary team members’ palliative care, especially the
social workers, nurses, and physiotherapists, has helped them to find almost all aspects of the treatment.
Another social worker responded to the question on sustainability by emphasizing the holistic approach that “Apart from the basic physical
care, the home care team sits with the patients and their families. We console them, counsel them and educate. This is what most of them
needed than mere physical care. You can see that this is the reason, patients, families, and community is happy when they see the home care
unit and render all the support. Community‐based intervention doesn't survive without the satisfaction of community.”
The care provisions rendered touches on different aspects of patients and families. The palliative care services could address the needs of
the patients and families to a great extent in which most of them require to avail no or minimal treatment from other sources. Apart from the
treatment domains, many palliative cares provide financial, educational, and livelihood support to the needy. Social workers believed that the

TA B L E 1 Characteristics of palliative care and social workers

Palliative care Social workers

Years of operation N Years of experience in PC N

5 years 03 2–4 years 04

6–10 years 05 5–6 years 06
11–15 years 04 7 and Above 02
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treatment provided to the patients in a holistic manner attracts the attention of the community and they render active support to sustain the
same. The patients’ and families’ satisfaction is an important factor that determines the social acceptance of community‐based intervention
and its sustainability.

5.3 | Community participation

Community participation is the indispensable requirement of community‐based palliative care interventions and other community‐based pro‐
jects. The voluntary participation of the communities to address their problems would yield better results. The Kerala model of palliative care
is often praised for the momentous community participation it receives from the communities it works for.
The social work professionals studied opine that the palliative care model prevails in Kerala is largely sustained due to the overwhelming
support from the community. A social worker explained that “…there is no doubt that the major momentum for the sustenance of palliative
care activities in the region is community participation. People from different walks of life support us in different means. People in the neigh‐
borhood identify patients and families require the services, find the resources to address those and implement with the active participation
of professionals.”
The essence of the narratives of social workers emphasizes the importance of community participation in the service delivery and sustain‐
ability of palliative care operations in Kerala. The effective management and implementation of community‐based services are not possible
with the active participation of the community.
A social worker who has 7 years of experience in the community‐based palliative care narrated that “The peculiarity is most of the people
in the region, including children, aware what palliative care is. All of them are ready to render service for palliative care. Many people who are
not volunteers also come forward and extend their assistance whenever they see the palliative team. I don’t think palliative care in the current
home‐based care model could have survived without community support.”
Participants of the study underlined that community support is essential for the sustainability of palliative care interventions. This is even
very important as the Kerala model is largely based on the home care approach where the patients have cared in their home itself rather than
an institutionalized setup. The community participation is evident in the form of care, fundraising, and timely intervention for the socio‐eco‐
nomic and psychological needs of the family.

5.4 | Volunteers
Volunteers are the backbone of palliative care intervention in Kerala. They are actively involved in the care, planning, administration, fund‐
raising, and psychosocial care of the patients and families. The contributions of the volunteers in making the Kerala model a unique one were
highlighted in the available literature as well. The indispensable role of volunteers in the palliative care interventions was perceived as an
important determinant of sustainability by the social workers studied.
A social worker with five years of experience in different palliative care units within Kerala emphasizes the role of volunteers in making
the service sustainable that “I can strongly say that volunteers are the single most important factor that makes us reach the patient's home
every day. It is true that we have a group of professionals, but the acquaintance volunteers have with the community is really meaningful in
the service delivery. Most of them are trained volunteers. Their insight and experience in working with the community has innumerable value
in the service delivery.”
In general, an individual palliative care operation covers a large geographical area and serves 100–500 patients. It is impossible for the
community‐led palliative care to ensure continuous service to a huge number of patients without the support of active volunteers. In the
current model of service delivery, every specific locality has volunteer/s who identify the patients and their requirements, mobilize resources,
and provide services by coordinating with the palliative care. As most of the volunteers hail from the local community, patients and families
feel comfortable to talk about their problems and find an appropriate solution through palliative care interventions.
A social worker with 3 years of experience explained the role of volunteers in the sustenance of palliative care operations that “Running a
palliative care unit is a strenuous task which requires a continued effort of planning, resource mobilization, quality service delivery, coordina‐
tion, and sensible implementation. All these can't happen only with paid human resource. Most of the tasks in the palliative care interventions
are exclusively done by the volunteers and without them, it can't survive.”
The excerpts of the above narrative also emphasize the multiple roles of volunteers in the management of palliative cares. The services
of the volunteers are rewarding to palliative care and its service delivery. However, it does not incur any cost to the palliative cares. Social
workers perceive that the current form of service delivery through the home care approach is almost impossible without the volunteers as
they play a crucial role in the planning and management of services. The volunteers in the palliative cares are a diverse group, which includes
students, youngsters, officials, retired officials, and senior citizens. The rich experience and expertise in their respective field are meaningful
for resource mobilization and service delivery.
ABDUL AZEEZ and ANBU SELVI | 339

5.5 | Resource mobilization

The sustainability of any project, especially the community‐based one, largely depends on the economic self‐sufficiency. Most of the palliative
care operations in Kerala are economically self‐sufficient with active community support. The strategies adopted by the community palliative
cares are innovative and self‐sustaining. Palliative cares, due to its unique operation mode addressing a wide variety of patients and family
needs, require a huge budget every month, and they could find the means to meet those expenses without many hurdles.
A social worker responded to the question of sustainability as “The major reason, the community‐based palliative care movement survived
in the region throughout the years is the strategies of resource mobilization. The palliative care in the region including mine is self‐dependent
in the economic aspects.”
The self‐sufficiency of palliative cares was ensured through the strategies in resource mobilization. Important means of resource mobiliza‐
tion include micro‐donations collected through donation boxes fixed at the shops and other public places. Apart from these, some individuals
donate a monthly fixed amount to the palliative cares. The donations as means including medical equipment and medicines are also availed
from different sources based on requirements. In the above narrative, the social worker interviewed underline emphasizes that the organiza‐
tion she works for is sustainable economically and the same is attributed to the resource mobilization strategies.
Another social worker who is actively involved in the managerial responsibilities of palliative care narrated that “Unlike other NGOs, in the
palliative care, we depend on the micro‐donations to a great extent. Whatever required for a month can be found from different sources of
donations. Some people donate the expense of home care, medicines, and other equipment. Whenever there is an additional requirement, we
could find the resource from the community itself. The uninterrupted care we provide is because of these resources.”
The above narrative also emphasized on the importance of resource mobilization in the sustainability of palliative care interventions. A
sustainable source of funding is necessary to carry out quality palliative care services. The simple but strategic funding modalities adopted
made many of the palliative care economically sustainable.

5.6 | Socio‐political environment

The socio‐political environment of the locality is perceived as an important determinant of the successful and sustainable operation of pal‐
liative care by the social workers. The local specific socio‐cultural and political contexts are potentially influential in predicting the success of
community‐led initiatives. The mere participation of people does not predict the success, yet a common social consensus is required to have
a wider social acceptance for the initiatives such as palliative care. The socio‐religious and political environment of Kerala is highly conducive
for the same, and social workers highlighted it as an important factor.
A social worker explained, about the sustainability of palliative care from the perspectives of socio‐political environment of the studied
region, that “The region has a long history of communal harmony, mutual help and standing for the common needs beyond religious, caste,
and political affiliations. The consensus of the people for the social cause is vibrant and the same has influenced in the case of palliative
cares as well. The very empathetic attitude of people is evident in the form of participation, volunteering and the effort to sustain the
movement.”
The palliative care services are provided to a diverse population who belongs to a different class, caste, and religion. The communal
harmony and cohesiveness prevalent in the social milieu of Kerala is rewarding and enriching for a movement such as palliative care, which
requires momentous support from different corners of society.
Another social worker by attributing the credit of sustainability of the palliative care to the socio‐political environment narrated that “The
socio‐religious and political elements are highly involved in the palliative care operations. People are sensitive and educated and they support
such initiatives without any predispositions.”
The religious groups and civil society organizations have significantly contributed to the origin and development of the palliative care
movement in Kerala. The sensitive civil society and religious organizations perennially engage in addressing the social cause through possible
means. The case of political parties and politically affiliated organizations are also not different. A sensitive general public and civil society is a
vital indication for positive development.
A social worker who involved with various palliative care for more than 7 years responded to the question, what makes palliative care sus‐
tainable, that “The political parties and their leaders, religious leaders, government officials and moreover the political system especially the
local self‐government render all the support whenever necessary. The active support from these agencies, which constitute the major part of
the social system, makes the concept of palliative care acceptable to all.”
The support and acceptance from the wider social system is an important element of the sustainability of community‐based participatory
programs such as palliative care. In the case of the Kerala model, the socio‐political contexts are conducive for the voluntary efforts with the
active support from the general public. The increased access to mass media, high rate of literacy, and political awareness also impacts the
general public's sensitivity toward the cause of palliative care and to support it.
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6 | D I S CU S S I O N A N D CO N C LU S I O N

The present study attempted to explore the determinants of the sustainable community‐based palliative care interventions of Kerala from
the perspectives of social work professionals. The study could locate five major themes as the determinants of sustainability. The first
theme identified was the holistic care. The community‐based palliative care to a great extent was successful in providing comprehensive
care to the patients and families. This includes the conventional palliative care components consisting of physical care and psychological,
social, and spiritual support. Kumar and Numpeli (2005) also reported the holistic care provided by the palliative care in Kerala on these
domains. The economic support is also provided to the families who are suffering due to the illness apart from the conventional services
of palliative care. Empowering and educating family members is also an important component of holistic care. Bollini, Venkateswaran, and
Sureshkumar (2004) also report that the continuity of treatment in a sustainable manner can be achieved through the active engagement
of the families. The patient and family satisfaction of the services would benefit in the wider acceptance of palliative care and subsequently
its sustainability.
Community participation has emerged as another important determinant of the sustainability of palliative care operations in Kerala.
The social workers participated in the study emphasized that without the community participation, the palliative care could not survive its
operations. Libby and Kumar (2008) also emphasized the indispensable significance of community participation in the sustained operation
of palliative care. Another related factor social workers highlighted as the determinant of sustainability was the socio‐economic environ‐
ment of the locality where the palliative care operations are active. The location‐specific socio‐political contexts are highly conducive and
supportive for a movement such as palliative care. Stjernsward (2005) and Santhosh (2015) highlighted the importance of the socio‐political
environment that shaped the sustenance of palliative movement in Kerala. Koshy (2009) also argued that Kerala's socio‐political and cul‐
tural environment is conducive for the movement such as palliative care. Hence, the replication of the Kerala model of palliative care has
limitations due to the dissimilar socio‐political environment in the other region of India and the world. Though there is literature to support
the contribution of the socio‐political environment in the sustenance of palliative care in Kerala, no empirical exercise was yet found in the
literature to prove it.
The involvements of volunteers are one of the most cited uniqueness of Kerala model of palliative care. The social workers studied were
also agreed upon the role of volunteers as a determinant of sustainability. A large‐scale operation addressing a different variety of needs of the
patients and families cannot be achieved through the recruited staff members. Since it is a community‐based project, the role of volunteers
is innumerable. The social workers narrated that volunteers engage in a wide variety of activities that are essential for the sustenance of pal‐
liative care. The volunteers are people who have proven expertise in different walks of life, and their experience is meaningful in the service
delivery of palliative care. Terry, Harder, and Pracht (2011) highlight that volunteers’ involvement in non‐profit organizations is beneficial in
reducing the cost and managing the services in a better manner. The case is not different in palliative care operations of Kerala as the volun‐
teers’ involvement is integral in sustainability.
The resource mobilization strategies and economic self‐sufficiency were highlighted as another imperative determinant of the sustain‐
ability of palliative care by social workers. The palliative cares in the region could able to find the resources in the form of cash and kind for
the operational costs. The major source of the revenue is in the form of micro‐donations and case of additional expenses, palliative cares
are able to mobilize those with innovative approaches. Sustainability of any community‐based intervention largely depends on economic
resources. The palliative care operating in Kerala is able to find those. Quality of Death Report (2010) highlights the fundraising strategies
of the Kerala model and its role in providing continuous interventions. As of now, no attempts were evident in the literature to prove the
contribution of resource mobilization strategies on the sustainability of the palliative care model of Kerala. In this context, the perspectives
of the social workers on sustainability are crucial as they directly involve in the day‐to‐day functioning, including the financial management
of palliative care.
The results of the present study are insightful in consolidating the essence of sustainable community‐based palliative care operations from
the first‐hand perspectives of the social workers. The themes generated as the determinants of sustainability are interlinked and mutually ex‐
clusive. These determinants of sustainable and successful implementation of palliative cares are crucial for the clinicians, community leaders,
public health professionals, and social work professionals who are involved in the development of similar community‐based models in India and
abroad. The mere replication of the Kerala model of palliative care with improper understanding would lead to failure. And contextual factors
would indeed be different in every geographical area. In the absence of similar socio‐political and cultural contexts, the professionals can
appropriate the model into their specific social milieu. The professional social workers can have insight from the study to ensure sustainability
while engaging in community‐based interventions of similar natures.

ORCID

E.P. Abdul Azeez https://orcid.org/0000-0002-4627-6550

ABDUL AZEEZ and ANBU SELVI | 341

REFERENCES

Azeez, A. (2013). Integrated practice of social work methods: Prospects of social work intervention through community‐based palliative care. Social
Work Chronicle, 2(1), 1–13.
Azeez, A. E. P. (2014). Revisiting the prospects of social entrepreneurship on social development: an analysis. Quest Journal of Management & Research,
5(1), 9–18.
Azeez, A. E. (2015a). Review of community‐based health care movement and palliative care in Kerala. Journal of Management and Public Policy, 6(2),
10–20.
Azeez, A. E. P. (2015b). Social capital and sustainable health care: an analysis of community based palliative care model of Kerala. Indian Journal of
Sustainable Development, 1(1), 1–8.
Banerjee, P. (2009). The effect of homecare team visits in terminal cancer patients: role of health teams reaching patients homes. Indian Journal of
Palliative Care., 15(2), 155–158. https​://doi.org/10.4103/0973-1075.58463​
Bickel, K., & Ozanne, E. (2017). Importance of costs and cost‐effectiveness of palliative care. Journal of Oncology Practice, 13(5), 287–289. https​://doi.
org/10.1200/JOP.2016.019943
Bollini, P., Venkateswaran, C., & Sureshkumar, K. (2004). Palliative care in Kerala, India: A model for resource‐poor settings. Oncology Research and
Treatment, 27(2), 138–142. https​://doi.org/10.1159/00007​6902
Boughey, A. (2011). An observational comparison of palliative care policy and its implementation in Kerala, India and Victoria, Australia. Project Report.
Retrieved from http://www.aliso​nboug​heyco​nsult​ing.com.au/wordp​ress/wpcon​tent/uploa​ds/2013/01/Palli​ative-Care-Policy-in-Kerala-2011.pdf
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative research in psychology, 3(2), 77–101.
Brumley, R., Enguidanos, S., Jamison, P., Seitz, R., Morgenstern, N., Saito, S., … Gonzalez, J. (2007). Increased satisfaction with care and lower
costs: Results of a randomized trial of in‐home palliative care. Journal of the American Geriatrics Society, 55(7), 993–1000. https​ ://doi.
org/10.1111/j.1532-5415.2007.01234.x
Dongre, A. R., Rajendran, K. P., Kumar, S., & Deshmukh, P. R. (2012). The effect of community‐managed palliative care program on quality of life in the
elderly in rural Tamil Nadu. India. Indian Journal of Palliative Care, 18(3), 219–225. https​://doi.org/10.4103/0973-1075.105694
Gupta, H. (2005). Community participation in palliative care: A comment. Indian Journal of Palliative Care, 11(1), 19–21. https​ ://doi.
org/10.4103/0973-1075.16640​
Hatziandreu, E., Archontakis, F., & Daly, A. (2008). The potential cost savings of greater use of home‐and hospice‐based end of life care in England. Cambridge:
RAND Corporation.
Heins, M., Hofstede, J., Rijken, M., Korevaar, J., Donker, G., & Francke, A. (2018). Palliative care for patients with cancer: Do patients receive the care
they consider important? A Survey Study. BMC Palliative Care, 17(1), 61. https​://doi.org/10.1186/s12904-018-0315-3
Jatoi, A. (2011). How important is palliative care? Current Oncology Reports, 13(4), 252–254. https​://doi.org/10.1007/s11912-011-0168-x
Khosla, D., Patel, F. D., & Sharma, S. C. (2012). Palliative care in India: Current progress and future needs. Indian Journal of Palliative Care, 18(3), 149–154.
https​://doi.org/10.4103/0973-1075.105683
Koshy, C. (2009). The palliative care movement in India: Another freedom struggle or a silent revolution? Indian Journal of Palliative Care, 15(1), 10–13.
https​://doi.org/10.4103/0973-1075.53495​
Kumar, S. K. (2007). Kerala, India: A regional community‐based palliative care model. Journal of Pain and Symptom Management, 33(5), 623–627. https​://
doi.org/10.1016/j.jpain​symman.2007.02.005
Kumar, S. (2013). Models of delivering palliative and end‐of‐life care in India. Current Opinion in Supportive and Palliative Care, 7(2), 216–222. https​://doi.
org/10.1097/SPC.0b013​e3283​610255
Kumar, S., & Numpeli, M. (2005). Neighborhood network in palliative care. Indian Journal Palliative Care, 11(1), 6–9. https​://doi.org/10.4103/0973-1075.16637​
Lambert, V. A., & Lambert, C. E. (2012). Qualitative descriptive research: An acceptable design. Pacific Rim International Journal of Nursing Research,
16(4), 255–256.
Libby, S., & Kumar, S. (2008). Workbook of Second International Workshop on Community Participation in Palliative care: Home‐based care (pp. 7–35). Kerala,
India: Institute of Palliative Medicine.
Philip, R. R., Philip, S., Tripathy, J. P., Manima, A., & Venables, E. (2018). Twenty years of home‐based palliative care in Malappuram, Kerala, India: A
descriptive study of patients and their care‐givers. BMC Palliative Care, 17(1), 26. https​://doi.org/10.1186/s12904-018-0278-4
Quality of Death Report (2010). Quality of death: Ranking End‐of‐life Care Across the World. Londres, RU: Economist Intelligence Unit.
Ragesh, G., Zacharias, L., & Thomas, P. T. (2017). Palliative care social work in india: current status and future directions. Indian Journal of Palliative Care,
23(1), 93–99. https​://doi.org/10.4103/0973-1075.197949
Reith, M., & Payne, M. (2009). Social work in end‐of‐life and palliative care (p. 29). Bristol: Policy Press.
Ringdal, G. I., & André, B. (2014). The Importance of Palliative Care for Terminally Ill Cancer Patients and their Family Members. J Palliat Care Med, 4(2),
1–3. https​://doi.org/10.4172/2165-7386.1000176
Rome, R. B., Luminais, H. H., Bourgeois, D. A., & Blais, C. M. (2011). The role of palliative care at the end of life. The Ochsner Journal, 11(4), 348–352.
Sallnow, L., & Chenganakkattil, S. (2005). The role of religious, social and political groups inpalliative care in Northern Kerala. Indian Journal of Palliative
Care, 11(1), 10–14. https​://doi.org/10.4103/0973-1075.16638​
Sallnow, L., Kumar, S., & Numpeli, M. (2010). Home‐based palliative care in Kerala, India: The neighborhood network in palliative care. Progress in
Palliative Care, 18(1), 14–17.
Sandelowski, M. (2000). Whatever happened to qualitative description? Research in Nursing & Health, 23(4), 334–340. https​://doi.org/10.1002/1098-
240X(20000​8)23:4<334:AID-NUR9>3.0.CO;2-G
Santha, S. (2011). Impact of pain and palliative care services on patients. Indian Journal of Palliative Care., 17(1), 24–32.
Santosh, R. (2015). Islamic Activism and Palliative Care: An Analysis from Kerala, India. In P. Fountain, R. Bush, & R. Michael Feener (ed). Religion and the
Politics of Development (pp. 83–103). Palgrave Macmillan, London.
Shelar, J. (2018). Just 2% have access to palliative care in India, says the 'father' of palliative care in India. Interview with Dr. M.R. Rajgopal. Retrieved from
https​://www.thehi​ndu.com/news/citie​s/mumba​i/just‐2‐have‐acces​s‐to‐palli​ative​‐care‐in‐India/​artic​le241​76073.ece
Shukkor, T. (2014). Community Participation in Health Care Delivery: An Enquiry of Kerala Model of Palliative Care. Ph.D. Thesis‐IIT Kanpur, India.
342 | ABDUL AZEEZ and ANBU SELVI

Small, N. (2001). Social work and palliative care. The British Journal of Social Work, 31(6), 961–971. https​://doi.org/10.1093/bjsw/31.6.961
Smith, S., Brick, A., O’Hara, S., & Normand, C. (2014). Evidence on the cost and cost‐effectiveness of palliative care: A literature review. Palliative
Medicine, 28(2), 130–150. https​://doi.org/10.1177/02692​16313​493466
Spruyt, O. (2011). Team networking in palliative care. Indian Journal of Palliativecare, 17(Suppl), S17. https​://doi.org/10.4103/0973-1075.76234​
Stjernsward, J. (2005). Community participation in palliative care. Indian Journal of Palliative Care, 11(2), 111. https​://doi.org/10.4103/0973-1075.19190​
Terry, B., Harder, A., & Pracht, D. (2011). Understanding the Value of Volunteer Involvement. Journal of Agricultural Education, 52(2), 118–127. https​://
doi.org/10.5032/jae.2011.02118​
Thayyil, J., & Cherumanalil, J. M. (2012). Assessment of status of patients receiving palliative home care and services provided in a rural area—kerala.
India. Indian journal of palliative care, 18(3), 213.
Unni, K., & Edasseri, D. (2012). A prospective survey of patient drop‐outs in a palliative care setting. Indian Journal of Palliative Care, 18(1), 27–30. https​
://doi.org/10.4103/0973-1075.97345​
W. P. C.A & World Health Organization (2014). Global atlas of palliative care at the end of life. London: Worldwide Palliative Care Alliance.
Watts, J. H. (2013). Exploring the "social" of social work in palliative care: Working with diversity. Illness, Crisis & Loss, 21(4), 281–295. https​://doi.
org/10.2190/IL.21.4.b
WHO (2002). National cancer control programme: Policies and managerial guidelines, 2nd ed. World Health Organization: Geneva.
WHO (2018). Palliative care. Retrieved from https​://www.who.int/news-room/fact-sheet​s/detai​l/palli​ative-care

How to cite this article: Abdul Azeez EP, Anbu Selvi G. What determines the sustainability of community‐based palliative care operations?
Perspectives of the social work professionals. Asian Soc Work Pol Rev. 2019;13:334–342. https​://doi.org/10.1111/aswp.12185​