Sage Journals: Discover world-class research

Abstract

Palliative care is a comprehensive approach aimed at improving the quality of life of patients with serious illness and their families. Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care (HPC) from a familial standpoint in the context of South and Southeast Asia. This paper aims to describe family perspectives on key elements of good home palliative care in both regions. We conducted a scoping review using Arksey and O’Malley’s methodological framework. The search was done in 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Inclusion criteria were (1) exploring family experiences of palliative care, (2) home setting, and (3) South and Southeast Asian countries. Twenty-four studies were included from Bangladesh (n = 1), India (n = 6), Indonesia (n = 7), Malaysia (n = 2), Singapore (n = 2), and Thailand (n = 6). Five key elements of HPC from family perspectives were comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. The crucial role of religious and spiritual activities and the need for facilitation in facing systemic barriers were specific to South and Southeast Asia. HPC teams should be able to provide holistic support for patients and their families, which is influential for the quality of care. Improving care on a systemic level in these regions should be a policy priority.

Keywords

home care palliative care family South Asia Southeast Asia scoping review

Introduction

Palliative care is an essential part of cancer and other serious illnesses, aiming to improve the quality of life for patients and their families.^1,2 The concept of palliative care is widely discussed in the global north. In South and Southeast Asia, where our research is focused, palliative care availability and support are limited, except for Singapore.² Challenges include a lack of supportive policies, limited medication, inadequate education and training, insufficient resources, and difficulties in reaching remote areas.^2,3

Given this lack of professional care, the role of the family is crucial. The patient returns home after medical appointments or any inpatient care they receive, then is cared for by family at home. In one study in Asia, home was reported as a comfortable environment for patients, especially with the presence of family members.⁴ An integrative review of Southeast Asian studies found that receiving care and dying at home gave patients the sacred opportunity to be in a familiar place with beloved people.⁵ A narrative review involving studies from high-income countries showed that the availability of professional home palliative care improves patients’ quality of life and care satisfaction.⁶

Previous literature had described several important components of home palliative care from high-income countries such as in Europe and North America. These components were integrated teamwork; management of pain and physical symptoms; holistic care; caring, compassionate, and skilled providers; timely and responsive care; and patient and family preparedness.⁷

Nevertheless, there exists a dearth of systematically synthesized empirical evidence regarding the key elements that contribute to good home palliative care from a familial standpoint in the context of South and Southeast Asia, especially with the regions’ specific nuances and circumstances. This paper is part of a more extensive study that explores the conceptualization and practice of home palliative care in rural Indonesia. Due to a scarcity of Indonesian studies, we include literature from the broader region of South Asia and Southeast Asia. This expansion of geographical coverage is justified by the similarity of demographic characteristics as well as some of the cultural norms and values, such as the important role of the family in providing care and the role of religion.^8-17

This paper aims to describe family perspectives on key elements of good home palliative care in South and Southeast Asia. By directly analyzing how family experience home palliative care, we would benefit from the empirical data from a familial stand point that contribute to a good home palliative care. Increased knowledge about this topic will help improve the development and implementation of home palliative care in both regions.

Methods

Design

This paper is a scoping review, which aims to systematically identify and map the available literature and clarify key concepts and characteristics across different sources of evidence related to a particular topic.¹⁸ We followed the methodological framework for a scoping review published by Arksey and O’Malley¹⁹: identifying the research question, identifying relevant studies, selecting studies, data charting, and finalization. This review is reported according to PRISMA Scoping Review guidelines.²⁰ Because of the nature of scoping reviews, ethical approval is not required.

Search Strategy

We conducted a comprehensive search to gather relevant studies for this review. Our search strategy involved using specific terms related to palliative care, family caregivers, home care, and South and Southeast Asian countries. We employed truncation and Boolean logic to ensure accurate retrieval of relevant studies. There were no restrictions on the publication dates. The countries included in this review are Afghanistan, Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, Sri Lanka, Indonesia, Malaysia, Singapore, Thailand, Vietnam, Myanmar, Laos, Brunei, Philippines, East Timor, and Cambodia.

The search was completed on April 18, 2023, across 6 electronic databases: PubMed, Ovid MEDLINE, EMBASE, Web of Science, APA PsycINFO, and APA PsycArticles Full Text. Access was facilitated by the library of Amsterdam UMC location AMC. Supplemental File 1 provides more details on the search strategy.

Data Extraction and Analysis

The flow diagram illustrating the process of study identification, screening, and inclusion is presented in Figure 1. The eligibility criteria for the included studies in this review were as follows: (1) exploration of family experiences of palliative care; (2) conducted in a home setting; (3) conducted in South and Southeast Asian countries. Case reports, conference abstracts, reviews, and clinical trials were excluded. The screening and selection of studies were facilitated using EndNote 20. Following critical feedback from all authors on the search strategy, the first author conducted the search, selected relevant studies, and thoroughly read the full-text papers multiple times. The results were organized in data extraction tables and summarized using thematic analysis.²¹ All authors participated in thematic analysis. The methodological quality of each article was not assessed as this study is not a systematic review.

Figure 1.

PRISMA flow diagram.

Results

Range of Studies

Out of 938 studies, 230 duplicates were identified and deleted. The first phase of the screening was through the title and abstract. In the second phase of the screening, the full text of 80 articles was retrieved to assess the eligibility. We included 24 studies in this review. A mapping of the studies based on their aims, methodology, and patient characteristics is presented in Table 1. Seventeen studies (71%) were from Southeast Asian countries and 7 studies (29%) from South Asian countries. There were seven Indonesian, two Malaysian, two Singaporean, 6 Thai, one Bangladeshi, and six Indian studies.

Table 1.

Summary of Study Characteristics.

Study	Country	Aim	Study design	Approach	Analysis	Home care type	Patients’ age	Patients’ disease
Albert et al. (2022)	Malaysia	To explore the suffering experienced by family caregivers of advanced cancer patients of home-based palliative care	Qualitative	Descriptive	Unspecified	Informal	Adult	Cancer
Antony et al. (2018)	India	To assess stress and coping among caregivers of cancer patients on palliative care and to acquire a deeper understanding of their lived experiences.	Mixed-methods	Descriptive survey; phenomenology	Phenomenological	Informal	Mix	Cancer
Aulino (2013)	Thailand	To describe the everyday realities of long-term caregiving tasks for elderly people from the perspective of the caregivers	Qualitative	Ethnography	Unspecified	Formal	Adult	Elderly
Butola et al. (2021)	India	To explore the experience of caregivers related to arranging palliative care at home for members of the armed forces and their families.	Qualitative	Grounded theory	Thematic analysis	Informal	Adult	Varied disease
Chong et al. (2022)	Malaysia	To examine the clinical experiences of bereaved parents of children with a life-limiting illness to provide recommendations for quality care.	Qualitative	Constructivist	Unspecified	Formal	Pediatric	Varied disease
Chowdhury et al. (2021)	Bangladesh	To describe the illness experiences and palliative care needs of children with complex chronic or life-limiting conditions and their families in a slum within a resource-limited setting (Dhaka, Bangladesh).	Quantitative	Cross-sectional	Descriptive	Formal	Pediatric	Varied disease
Effendy et al. (2022)	Indonesia	To explore the experiences of family caregivers of children diagnosed with cancer while receiving home-based pediatric palliative care.	Qualitative	Phenomenology	Content analysis	Formal	Pediatric	Cancer
Krisdiyanto et al. (2019)	Indonesia	To explore the experiences of families with palliative cancer patients in their decision-making processes for taking care of the patients at home.	Qualitative	Phenomenology	Phenomenological	Informal	Adult	Cancer
Kristanti et al. (2018)	Indonesia	To describe and compare the lived experiences of family caregivers of patients with cancer with those of patients with dementia, and to explore the role of their social health in these experiences.	Qualitative	unspecified	Constant comparative	Informal	Adult	Cancer and dementia
Kristanti et al. (2019)	Indonesia	To explore and model the experiences of family caregivers in performing caregiving tasks for patients with cancer in Indonesia.	Qualitative	Grounded theory	Grounded theory	Informal	Adult	Cancer
Lee et al. (2013)	Singapore	To conduct a feasibility study to explore the experience of dignity in palliative care in Singapore.	Qualitative	unspecified	Unspecified	Formal	Adult	Cancer
Leow and Chan (2017)	Singapore	To describe the experiences of family caregivers caring for a person with advanced cancer at home in Singapore.	Qualitative	Descriptive	Content analysis	Informal	Adult	Cancer
Mamom and Daovisan (2022)	Thailand	To explore how Buddhist religious care has been incorporated for end-of-life stroke patients receiving palliative care at home during the COVID-19 pandemic in central Thailand.	Qualitative	Grounded theory	Grounded theory	Formal	Adult	Stroke
Mariyana et al. (2018)	Indonesia	To know the experiences of mothers managing their children’s pain during palliative care following a cancer diagnosis	Qualitative	Phenomenology	Phenomenological	Formal	Pediatric	Cancer
Nafratilova et al. (2018)	Indonesia	To explore the parents’ experience in caring for children with cancer under palliative care conditions.	Qualitative	Phenomenology	Phenomenological	Formal	Pediatric	Cancer
Nilmanat and Street (2004)	Thailand	To examine experiences of family members caring for a relative with AIDS in rural Southern Thailand	Qualitative	Longitudinal narrative	Narrative	Informal	Adult	AIDS
Nilmanat and Street (2007)	Thailand	To explore how families make sense of their experience of caring for their loved one with terminal AIDS and how they mobilize religious resources and spiritual faith to promote a peaceful death for their loved one.	Qualitative	Ethnography	Unspecified	Informal	Adult	AIDS
Paul and Fernandes (2020)	India	To identify and comprehend the challenges caregivers face while caring for a terminally ill patient in a home-based palliative care setting and the mechanisms that facilitate their coping.	Qualitative	Unspecified	Unspecified	Formal	Adult	Terminal
Philip et al. (2019)	India	To describe the experiences of patients, caregivers, program staff and volunteers in providing and receiving care in one of the oldest community-based palliative care units in India	Qualitative	Descriptive	Unspecified	Formal	Adult	Varied disease
Rochmawati et al. (2018)	Indonesia	To report findings concerning spirituality/religious aspects of palliative care provision.	Qualitative	Ethnography (contemporary)	Iterative analysis framework	Formal	Adult	Cancer
Tipseankhum et al. (2016)	Thailand	To explore the experiences of people with advanced cancer in home-based palliative care and to study and inform caregiving for them.	Qualitative	Phenomenology	Phenomenological	Mixed	Adult	Cancer
Wannapornsiri (2018)	Thailand	To explore Thai family caregivers’ experiences of providing palliative cancer care.	Qualitative	Phenomenology	Content analysis	Informal	Adult	Cancer
Warrier et al. (2020)	India	To explore the lived experience of spouses of persons diagnosed with motor neuron disease (MND).	Qualitative	Phenomenology	Phenomenological	Informal	Adult	MND
Warrier et al. (2022)	India	To explore the lived experience of spouses of persons with motor neuron disease, identify their needs and develop guidelines for better home-based care.	Qualitative	Phenomenology	Phenomenological	Informal	Adult	MND

All the studies aim to explore family caregivers’ experiences while providing home palliative care. Eleven studies (44%) involved families of patients who received formal home palliative care, while the rest (56%) explored informal care provided solely by the family caregiver. Twelve studies involved the families of patients with cancer, 2 studies with a patient with AIDS, and 4 studies with patients with a neurology disorder. The rest of the studies involved families of terminal patients with various diseases. Qualitative research methods with different approaches were used by 23 studies (96%) in this scoping review. One mixed-method study used both a quantitative descriptive-survey study and qualitative phenomenology.

Study Settings

The reviewed studies were conducted in various locations. Indonesian studies were primarily based in the capital cities such as Jakarta, Surabaya, and Yogyakarta. Studies on other countries were also conducted in metropolitan areas such as Bangkok, Thailand, and Kuala Lumpur, Malaysia. In India, studies were conducted in Kerala, Mumbai, and Bangalore. Thai studies covered various regions. One study from Bangladesh focused on a resource-limited area in the capital city of Dhaka. The remaining studies’ location were not specified.

Family Characteristics

Table 2 provides information on family characteristics in the included studies. Caregivers’ ages ranged from 18 to 72, with a majority being female. This gender disparity can be attributed to socio-cultural norms that assign caregiving roles to women within families. However, 2 studies from Singapore and India reported a higher proportion of male caregivers,^22,23 possibly due to caring for female patients. Spouses were the primary caregivers, followed by children or children-in-law. In elderly patients, if the spouse was deceased or unable to care, the responsibility fell upon the children. Table 3 describes the family caregivers’ roles and activities, positive experiences, and negative experiences reported by the studies in this review. A concept map to summarize the findings of this scoping review is presented in Figure 2.

Table 2.

Family Characteristics.

Study	Country	Family age	Main family caregiver(s)		Relationship with patient
Study	Country	Family age	Male	Female	Parents	Spouses	Children or in-law	Other families
Albert et al. (2022)	Malaysia	<40->60	2	5	2	2	2	1
Antony et al. (2018)	India	21-70	5	75	27	32	18	3
Aulino (2013)	Thailand	Unspecified	Unspecified		Unspecified
Butola et al. (2021)	India	<45	5	10	5	Unspecified
Chong et al. (2022)	Malaysia	Unspecified	3	5	8	-	-	-
Chowdhury et al. (2021)	Bangladesh	20-70	7	18	25	0	0	0
Effendy et al. (2022)	Indonesia	20-50	1	11	12	-	-	-
Krisdiyanto et al. (2019)	Indonesia	25-57	4	6	-	4	6	-
Kristanti et al. (2018)	Indonesia	mean = 43	12	13	-	15	8	2
Kristanti et al. (2019)	Indonesia	24-65	8	16	1	8	12	3
Lee et al. (2013)	Singapore	27-48	3	1	-	3	1	-
Leow and Chan (2017)	Singapore	21-64	5	14	-	2	15	2
Mamom and Daovisan (2022)	Thailand	35-70	10	20	-	12	16	2
Mariyana et al. (2018)	Indonesia	32-50	1	7	8	-	-	-
Nafratilova et al. (2018)	Indonesia	26-49	2	8	10	-	-	-
Nilmanat and Street (2004)	Thailand	27-61	-	8	6	2	-	-
Nilmanat and Street (2007)	Thailand	27-61	0	4	2	2	-	-
Paul and Fernandes (2020)	India	unspecified	17	10	1	6	13	7
Philip et al. (2019)	India	18-70	2	12	Unspecified
Rochmawati et al. (2018)	Indonesia	33-67	3	7	Unspecified
Tipseankhum et al. (2016)	Thailand	26-58	1	6	-	4	2	1
Wannapornsiri (2018)	Thailand	33-72	2	12	Unspecified
Warrier et al. (2020)	India	40-42	0	2	-	2	-	-
Warrier et al. (2022)	India	33-68	5	8	-	13	-	-

Table 3.

Main Findings.

Study	Country	Home care	Positive experiences	Negative experiences	Possible key elements
Albert et al. (2022)	Malaysia	Informal	Unspecified.	Emphatic suffering through vision, hearing, and anxiety; powerless and helpless suffering due to lack of aid and moral support; predicted suffering from death-related loss and patient related loss; compliance suffering from burden of caring; facing multiple barriers due to difficulties related to the patient itself, other family members, or the healthcare system.	- Need of moral support - Need of help in dealing with psychological distress - Need of anticipated bereavement support - Need of tackling systemic barriers
Antony et al. (2018)	India	Informal	Able to cope positively through humor, faith and religion (God and prayers); received support from family and friends and religious institutions, health and palliative team, social security mission; inspired by other patients/family; found a new meaning of togetherness and strong bond of love; feeling a rewarding experience	Moderate-severe stress, extremely busy with household duties and responsibilities inside and outside the home, feeling stress and physical-emotional strain, living with fear and uncertainty, worrying about the patient’s safety constantly, having financial difficulty and crisis, self-neglecting, lack of leisure time, disturbed seeing the patient in pain. Increased stress resulted in decreased coping, engaging in negative coping (substance use, denial, self-blame, self-distraction).	- Positive coping strategies (humor, faith, religion) - Social support (friends, family members) - Support by social security mission (government allowance) - Meaning making of caregiving at home - Need of additional household help with household duties - Need of personal leisure time - Need of help in dealing with psychological distress
Aulino (2013)	Thailand	Formal	Unspecified.	Unspecified.	- Religious rituals (to elevating patient’s rank in the eyes of God, afterlife preparation)
Butola et al. (2021)	India	Informal	Unspecified.	Exhaustion, lack of rest, lack of sleep, financial problems, additional expense of private health care services, not familiar with referral and insurance reimbursement procedures, emotional issues, worry about family’s future, lack of empathy from health care workers, facing spiritual distress from thinking about karma, pressure from family to provide the best possible treatment.	- Need of personal rest - Need of help in dealing with psychological distress - Need of help to solve family tension - Need of empathetic care
Chong et al. (2022)	Malaysia	Formal	Responsive care to the needs of patients.	Non-standardized care by health professionals.	- Responsive care - Need of standardized care
Chowdhury et al. (2021)	Bangladesh	Formal	Received care skills training from the team, received psychological and spiritual support from the team.	The medium-large financial problems, being prevented from doing paid work outside the home, difficulty in finishing household work/chores, feeling sad and worry.	- Care skills training (physical, nutrition, symptoms management, physiotherapy) - Psychological support - Spiritual support - Religious rituals (praying) - Need of additional help with household duties
Effendy et al. (2022)	Indonesia	Formal	Received wound care training, education about pain and symptom management, education about end-of-life signs, being supported and accompanied during end-of-life and bereavement phase, helped by the nurse to communicate concerns to the doctor, helped by the nurse during medical emergencies, being able to share emotional things with the nurse, received logistic support and indirect financial benefit, fewer hospital admissions.	Unspecified.	- Care skills training (wound, symptoms management) - End-of-life and bereavement assistance - Good communication between family-nurse-physician - Emergency assistance - Logistic and financial support
Krisdiyanto et al. (2019)	Indonesia	Informal	Unspecified	Family members do not agree on home-based palliative care due to feeling not confident in providing adequate care, feeling like giving up while caring for the patients at home (not at the hospital), there is no insurance coverage for home treatment.	- Need of facilitation in medical decision making - Need or care skills training - Need of meaning making of caregiving at home
Kristanti et al. (2018)	Indonesia	Informal	Social support from family and work colleagues, becoming a better person.	Conflicts with other family members in arranging practical matters, ignorance of other family members about the care needs of the patient, losing the person the patient was before the disease, physical exhaustion, loneliness, powerless, losing interest in things.	- Social support (family, work colleagues) - Meaning making of caregiving at home - Need of help to solve family tension
Kristanti et al. (2019)	Indonesia	Informal	Having social support, a sense of togetherness and improved family cohesiveness, feeling they do the right thing, making them a better person.	Ignorance of other family members, tension when the patient is losing appetite, making sacrifices to meet the patient’s needs, physical impacts.	- Social support - Meaning making of caregiving at home - Need of help to solve family tension
Lee et al. (2013)	Singapore	Formal	Stronger family bonds, ability to provide love, patience, and understanding to the patient, presence of support from family, friends, and workplace, responsive and empathetic healthcare workers, finding comfort and acceptance from spiritual activities, personal gains/personality improvement.	Lack of support from family, insensitivity, and lack of empathy by some healthcare workers.	- Meaning making of caregiving at home - Social support (family, friends, workplace) - Responsive care - Empathetic care - Spiritual activities (comfort and acceptance)
Leow and Chan (2017)	Singapore	Informal	Receiving emotional support from friends, family members, and healthcare staff, having spiritual support, a temporary distraction from caregiving, having the ability to perform moral responsibility in caregiving (filial piety), feel enriched and fulfilled, finding meaning in life, improved character and personality, increased empathy, increased family closeness.	Feeling stressed and helpless while the patient’s physical condition deteriorates, conflicts and clashes among family members, feeling negative emotions (worry, frustration, fluctuating moods, guilt, sadness, ambivalence).	- Emotional support (friends, family, healthcare staff) - Spiritual support - Temporary respite - Meaning making of caregiving
Mamom and Daovisan (2022)	Thailand	Formal	Religious practices can provide coping and comfort, able to receive spiritual support and psychological counseling from the monk at home.	Unspecified.	- Religious rituals (coping, comfort) - Spiritual support from religious figures - Psychological counseling from religious figures
Mariyana et al. (2018)	Indonesia	Formal	Being able to remain close to the patient.	Psychological distress (sadness, fear, depression, confusion, anxiety, panic), physical impacts (feeling weak, fatigued), hiding own feelings, negative emotional responses (arguing, hitting, fighting with the patient), dealing with the absence of homecare nurses, difficulty in financial and transportation related to care.	- Meaning making of caregiving at home - Need of help in dealing with psychological distress Need of constant/regular availability of homecare nurses - Need of help to tackle systemic barriers (financial, transportation)
Nafratilova et al. (2018)	Indonesia	Formal	Feeling grateful for God’s help, feeling peaceful and resilient from spiritual connection with God.	Facing denial of the patient’s diagnosis.	- Spiritual care (being grateful, feeling connected, find peace and resilience) - Need help in acceptance of patient’s diagnosis
Nilmanat and Street (2004)	Thailand	Informal	Unspecified.	Unspecified.	Adequate information on different medication approaches
Nilmanat and Street (2007)	Thailand	Informal	Making sense of the disease by seeing it as karma, having a sense of moral strength and comfort from it.	Could not ask for help due to the unspeakable disease.	- Meaning making of patient’s condition - Religious rituals (inviting religious figures)
Paul and Fernandes (2020)	India	Formal	Reconciled and comfortable after receiving patient information from the palliative care team, the ability to receive visitors without limit, receiving a multidisciplinary team, offered alternatives, receiving care training, able to access medication and information.	Observing anhedonia and deterioration in the patient.	- Adequate information on patient’s condition - Care skills training - Access of medication - Presence of multidisciplinary team - Flexibility of receiving visitors at home
Philip et al. (2019)	India	Formal	Receiving medical information and nursing skills training by the team, the convenience of health check-ups at home, received support from the neighborhood.	Difficulty in paying for expenses, physically demanding, psychologically stressful, socially restrictive.	- Adequate medical information - Care skills training - Neighborhood social support - Home health checks-up - Need of help to tackle systemic barriers - Need of help in dealing with psychological distress
Rochmawati et al. (2018)	Indonesia	Formal	Ability to perform religious activities and support patients in doing religious rituals.	Unspecified.	- Religious rituals (involve patient and health workers)
Tipseankhum et al. (2016)	Thailand	Mixed	Continuity of health care at home, received proper care and consultation from public health nurse, able to communicate outside office hours, felt appreciated and got good advice from the nurse, received regular visits from the nurse, received information about health materials and instruments from the nurse, received suggestions to leave and rest from caring.	Two family caregivers did not get care from public health nurse.	- Continuity and regularity of home health care - Access to proper care - Access to consultation (medical information) - Communication outside office hours - need of rest from caregiving
Wannapornsiri (2018)	Thailand	Informal	Sense of unity in the family.	Concealing own emotions and feelings.	- Meaning making of caregiving at home
Warrier et al. (2020)	India	Informal	Being supported by family members.	Feeling helpless due to the disease progression, losing the patient as her spouse, physical exhaustion from caring, emotional distress and frustration, and losing personal life.	- Social support (family members) - Need of help in dealing with disease progression - Need of help in dealing with losing intimacy
Warrier et al. (2022)	India	Informal	Unspecified.	Emotional changes and psychological pressure.	- Need of help in dealing with psychological distress

Figure 2.

Concept map of the findings.

Comprehensive Moral and Psychological Support

Family caregivers felt positive experiences from receiving moral and psychological support that comprehensively covered their needs. Since families were dealing with various psychological distress and suffering,^24-34 they needed help to access positive coping strategies facilitated by the formal home palliative care team.²⁵ One of the appreciated strategies was by helping families make a positive meaning of the patient’s condition and the caregiving activities, such as increased family cohesiveness, bond, and unity.^{22,25,29,32,34} This phenomenon emerged from the collaboration of family when providing emotional support for one another. Another positive meaning of the caregiving activities that can be pointed out by home palliative care team was the achievement of personal gain. Family caregivers felt that they were doing the right thing by caring for the patient, as they were able to provide love, patience, and understanding to the patient. Being able to stay close to the patient made the caregiving process rewarding for them.^22,25,30 As families were anticipating the loss of the patient, an anticipated bereavement support by home palliative care would be helpful.²⁴ Support during end-of-life and bereavement phase had been helpful for families, particularly when they can share their emotional concerns with the home care nurses.³⁵ Sometimes, different perception of care and lack of support created social tensions among family members.^{24,26,27,29,36} Thus, home palliative care team could try to facilitate solving family tensions and moderating discussion between family members.^26,28,36

Religious and Spiritual Activities With Religious Figures Involvement

Home palliative care could provide additional space for family caregivers and the patient to engage in religious activities together, thereby strengthening their spiritual connection with God and helping them cultivate feelings of gratitude, peace, and resilience.^37,38 Furthermore, the presence of religious figures at home also brought comfort and facilitate acceptance of patient’s diagnosis and disease progression to the family.^{22,25,29,39,40} Religious rituals such as daily prayers and reading holy books performed could provide spiritual support for both patients and families, as these rituals can be seen as a way to increase patient’s good deeds and elevate patient’s rank in the eyes of God.^38,40,41 It was appreciated by the family when healthcare workers were supportive of their religious needs, even getting involved in performing the religious rituals together.³⁸ By doing these activities, family caregivers aimed to provide calmness and mind clarity for patients, especially during their end-of-life phases.^{32,39,40,42,43}

Empathetic, Responsive, and Continued Home Palliative Care

The families of patients who were receiving formal home palliative care appreciated the empathetic, responsive, and proper care provided by professional team that cater to the patient’s needs.^22,42,44 The empathetic care included appreciation of family caregiving activities and helpful suggestion related to care-life balance from the healthcare workers.⁴² On the contrary, insensitive health care workers contributed to negative experience of families.²² Responsiveness to the individual needs of the patients and families were greatly appreciated, such as during difficult symptoms management and patient emergency conditions.^22,35,44 Families also appreciated when they experience continuity and regularity of care at home.⁴² Dealing with the absence of home care nurses was reported as a negative experience by families.³⁰ The availability of home care team could provide some personal time for caregivers, allowing families to have their rest from the physically and emotionally exhausting caregiving activities.^25,26,29 However, standardization of care was also important for families. Negative experience was reported when families encountered different quality of care provided by different health care workers, particularly those lack of palliative care training.⁴⁴

Adequate Access to Information and Skills Training

Lack of knowledge and skills in caregiving raised concerns among family caregivers about care quality at home.^28,36,45 Thus, it was appreciated when families could receive helpful information and training on patient’s disease and condition, basic nursing skills, wound care, symptom management, and end-of-life signs from the home palliative care team.^23,27,31,35 Some families were trying to incorporate different approaches, such as modern medicine, traditional medicine, and supernatural healing rites. Adequate information from healthcare workers on these different approaches can be helpful for families to navigate their concerns related to patient’s physical condition.⁴³ Moreover, palliative nurses were able to help communicate families’ concerns to the doctor.³⁵ The ability to contact home care team outside office hours and received additional information addressing their concerns contributed to families’ positive experience of home palliative care.⁴²

Facilitation in Dealing With Systemic Barriers

As participants in the studies were residing in a low-middle income countries, some prominent systemic barriers were identified, such as financial difficulties, transportation challenges, complicated insurance procedure, and complex healthcare system. Some studies reported financial crises,^25,27 making it difficult to afford healthcare equipment.^36,42 Families also had difficulties in handling patient emergencies, transportation, and administrative papers related to referral and health insurance.^{26,28,30,33,36} Facilitation for families in dealing with these systemic barriers might be very helpful for them. Some instances included assisting families to receive social security support,²⁵ logistic support,³⁵ and neighborhood support.³¹ Other social supports from family members, friends, work colleagues, were also greatly appreciated by families.^{22,25,28,34,36}

Discussion

In this review, we synthesized 5 key elements contributing to good home palliative care in South and Southeast Asia from familial stand point. The multiple caregiving roles performed by family were described as challenging and burdensome, particularly when formalized home palliative care is unavailable, contributing to the exhaustion of family caregivers from taking most caring responsibilities.^{25,26,28,29,31,34,36} Physical and psychological distress experienced by families require comprehensive moral and psychological support. Otherwise, family caregivers might not receive adequate palliative care even though they are also eligible for a holistic care based on WHO definition of the palliative care. Our finding is supported by previous literatures showing psychological interventions for family caregivers were effective in improving their competence and preparedness in dealing with psychological distress.^46,47

Our study also emphasizes how crucial role of religious and spiritual activities in providing positive experience during home palliative care specifically in South and Southeast Asia. This finding reflects the strong influence of religion, although these countries have different religious majorities.^38,39 These shared experiences highlight how families utilize religious and spiritual practices to provide comfort while caring for the patient.^{22,36,39,40,43} The importance of spiritual care is also supported by previous studies in European countries, emphasizing religion’s ability to relieve suffering.^48,49

Empathetic, responsive, and continued care was reported as an important element in our study. This finding aligned with previous review showing the importance of having responsive team that prepares and helps family caregivers during times of crisis, such as exacerbations of symptoms.⁷ The importance of incorporating empathy in care, including home palliative care, had been described by previous study as an important component of clinical competence by building sustainable relationship with patients and families.⁵⁰ Moreover, continuity of care had also been reported as one of important elements of integrated palliative care, which can be enhanced by involving small numbers of healthcare professionals for each patients and regularly transfer information among healthcare providers.⁵¹ A meta-ethnography study of home palliative care in high-income countries shows that 24-hour available professional care was one of the critical components to improve care experience, which aligned with our findings that support the important presence of competent, communicative, and supportive health professionals to support families in dealing with caregiving’s challenges.⁵²

Care-related positive experiences such as helpful healthcare professionals who provide information and skills training were more often found in family of patients receiving formal home palliative care.^{22,23,27,31,35,42,44} However, the availability and accessibility of formal home palliative care are still limited.^26,30,36 Previous systematic review from high-income countries reveals that formal multidisciplinary team is essential to provide holistic care for the whole family.⁷ By providing education and guidance to the family caregivers, home palliative care team can increase the patient and family preparedness in facing home caregiving situations.⁷ These findings strengthen the idea that providing home palliative care with professional support is crucial for improving the care quality by providing adequate access to medical information and basic nursing skills training for patients’ families.

Some studies in our review described the limited availability of government allowance or free home care from charity organizations.^25,35 The responsibility of family caregivers to pay some or all of the home palliative care costs had led to family financial crisis.^{25-28,31,33,36,41,44} Similar findings of family burden and limited funding was also reported in African countries, related to existing system-level barriers.⁵³ Our findings support an earlier review that emphasized family caregivers’ need for help to coordinate and arrange care, especially in a resource-limited setting.⁵⁴

Finally, this scoping review offers 5 key elements of good home palliative care from family perspectives across South and Southeast Asia, including Indonesia, India, Malaysia, Singapore, and Thailand. It is the first review of the topic in this region that encompasses both adult and pediatric patients with various illnesses. The similarities among these countries enhance our understanding of the topic. However, it is important to note that the number of studies on this topic is limited, and they were conducted within specific regions of each country. Therefore, a careful consideration is needed to generalize results to different settings. Further research is needed to explore integration of professionals into home palliative care within highly religious societies and improvement of palliative care provision from a healthcare system perspective.

Conclusion

Key elements of good home palliative care from family perspectives in South and Southeast Asia include comprehensive moral and psychological support; religious and spiritual activities with religious figures involvement; empathetic, responsive, and continued home palliative care; adequate access to information and skills training; and facilitation in dealing with systemic barriers. Specific findings from South and Southeast Asia regions were the crucial role of religious and spiritual activities and the need of facilitation in facing systemic barriers. Both findings came from the specific context of these regions which emphasizes the importance of religion and spirituality, and the systemic barriers related to the countries’ low-middle income with limited provision of formal palliative care. In these regions, palliative care was mainly provided by families at home, particularly in rural areas. The presence of formal home palliative care with emphasis on the 5 key elements in our review could improve the quality of care. The availability of formal home palliative care in combination with sufficient financial support to afford it, seems most influential for the patients’ quality of care and the family caregivers’ well-being and survival.

Supplemental Material

sj-docx-1-hhc-10.1177_10848223231224779 – Supplemental material for Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review

Supplemental material, sj-docx-1-hhc-10.1177_10848223231224779 for Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review by Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L. Willems and Jeannette Pols in Home Health Care Management & Practice

Supplemental Material

sj-docx-2-hhc-10.1177_10848223231224779 – Supplemental material for Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review

Supplemental material, sj-docx-2-hhc-10.1177_10848223231224779 for Family Perspectives on Key Elements of Good Home Palliative Care in South and Southeast Asia: A Scoping Review by Raditya Bagas Wicaksono, Amalia Muhaimin, Dick L. Willems and Jeannette Pols in Home Health Care Management & Practice

Footnotes

Acknowledgements

We thank Faridi Jamaludin from Amsterdam UMC library, who provided initial insights for the database search.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This scoping review is part of a PhD scholarship funded by the Indonesian Endowment Fund for Education (LPDP), grant number 202112220808210. The funding source has no influence on this review.

ORCID iD

Raditya Bagas Wicaksono

Supplemental Material

Supplemental material for this article is available online.

References

WHO. Quality Health Services and Palliative Care: Practical Approaches and Resources to Support Policy, Strategy and Practice. World Health Organization; 2021.

Connor

Morris

Jaramillo

, et al. (eds.). Global Atlas of Palliative Care, 2nd ed. Worldwide Hospice Palliative Care Alliance; 2020.

Rochmawati

Wiechula

Cameron

. Current status of palliative care services in Indonesia: a literature review. Int Nurs Rev. 2016;63(2):180-190. doi:10.1111/inr.12236

Lai

Lim

Kuan

, et al. Asian attitudes and perceptions toward hospital-at-home: a cross-sectional study. Front Public Health. 2021;9:1-8. doi:10.3389/fpubh.2021.704465

Kristanti

Agastiya

IMC

Kurianto

. The implementation of palliative home care in Southeast Asian Countries: an Integrative Review. Home Health Care Manage Pract. 2023;35(1):48-56. doi:10.1177/10848223221113858

Arias Rojas

García-Vivar

; Instituto Nacional de Cancerología E.S.E, Universidad de Navarra. The transition of palliative care from the hospital to the home: a narrative review of experiences of patients and family caretakers. Invest Educ Enferm. 2015;33(3):482-491. doi:10.17533/udea.iee.v33n3a12

Seow

Bainbridge

. A review of the essential components of quality palliative care in the home. J Palliat Med. 2017;20(Suppl 1):S-37. doi:10.1089/jpm.2017.0392

Martina

Geerse

Lin

, et al. Asian patients' perspectives on advance care planning: a mixed-method systematic review and conceptual framework. Palliat Med. 2021;35(10):1776-1792. doi:10.1177/02692163211042530

O'Connor

O'Brien

Griffiths

, et al. What is the meaning of palliative care in the Asia-Pacific region? Asia Pac J Clin Oncol. 2010;6(3):197-202. doi:10.1111/j.1743-7563.2010.01315.x

10.

IMF. World Economic Outlook: Countering the Cost-of-Living Crisis. International Monetary Fund; 2022.

11.

Mabbett

. The ‘Indianization’ of Southeast Asia: Reflections on the historical sources. J Southeast Asian Stud. 1977;8(2):143-161. doi:10.1017/s0022463400009310

12.

Vaughn

. Islam in South and Southeast Asia . In: Malbouisson

(ed.) Focus on Islamic Issues. Nova Science Publishers, Inc; 2005;41-49.

13.

Gupta

Sukamto

. Cultural communicative styles: the Case of India and Indonesia. Int J Soc Cult Clin. 2020;8(2):105-120. https://www.ijscl.net/article_39000.html

14.

Fee

. The Construction of Malay Identity across Nations: Malaysia, Singapore, and Indonesia. Bijdr -l. 2001;157(4):861-879. https://www.jstor.org/stable/27865781

15.

Flores

. Awareness of History Nation Serumpun (Indonesia-Malaysia): Culture without Borders. Paper presented at: The 1st International Conference on Social Sciences and Interdisciplinary Studies (ICSSIS 2018); November 14-15, 2018; Medan, Indonesia. Accessed April 18, 2023. doi:10.2991/icssis-18.2019.13

16.

Skinner

. Change and persistence in Chinese culture overseas: A comparison of Thailand and Java. In: Reid

(ed.) The Chinese Diaspora in the Pacific, 1st ed. Routledge; 2017;53-67.

17.

Ari

Else

. (2019). Indonesia–Thailand Culture Similarities and Their Contributions in BIPA Learning. Paper presented at: The International Conference on Educational Research and Innovation (ICERI 2019), Yogyakarta, Indonesia. Accessed April 18, 2023. doi:10.2991/assehr.k.200204.051

18.

Peterson

Pearce

Ferguson

Langford

. Understanding scoping reviews: definition, purpose, and process. J Am Assoc Nurse Pract. 2017;29(1):12-16. doi:10.1002/2327-6924.12380

19.

Arksey

O'Malley

. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8(1):19-32. doi:10.1080/1364557032000119616

20.

JBI. Joanna Briggs Institute Reviewers’ Manual, 2015 /supplement ed. The Joanna Briggs Institute; 2015.

21.

Braun

Clarke

. Thematic analysis . In: Cooper

Camic

Long

, et al. (eds.) APA Handbook of Research Methods in Psychology, Vol. 2. American Psychological Association; 2012;57-71.

22.

Lee

Akhileswaran

Goh

. Exploring the experience of dignified palliative care in patients with advanced cancer and families: a feasibility study in Singapore. Prog Palliat Care. 2013;21(3):131-139. doi:10.1179/1743291x12y.0000000041

23.

Paul

Fernandes

. Experiences of caregivers in a home-based palliative care model – a qualitative study. Indian J Palliat Care. 2020;26(3):306-311. doi:10.4103/IJPC.IJPC_154_19

24.

Albert

WKG

Fahrudin

Lindong

Yusuf

. The suffering experiences: family caregiver of home based palliative care in Malaysia. Open Access Maced J Med Sci. 2022;10:1623-1629. doi:10.3889/oamjms.2022.8573

25.

Antony

George

Jose

. Stress, coping, and lived experiences among caregivers of cancer patients on palliative care: a mixed method research. Indian J Palliat Care. 2018;24(3):313-319. doi:10.4103/IJPC.IJPC_178_17

26.

Butola

Bhatnagar

Rawlinson

. Caring and conflict-palliative care in the Armed Forces: the challenges for caregivers. Indian J Palliat Care. 2021;27(3):405-418. doi:10.25259/IJPC_393_20

27.

Chowdhury

Shopna

Lynch-Godrei

, et al. Providing home-based support for children with chronic conditions in an urban slum: experiences from a community-based palliative care program in Bangladesh. Glob Pediatr Health. 2021;8:2333794X2199915-233379233379510. doi:10.1177/2333794x21999155

28.

Kristanti

Engels

Effendy

, et al. Comparison of the lived experiences of family caregivers of patients with dementia and of patients with cancer in Indonesia. Int Psychogeriatr. 2018;30(6):903-914. doi:10.1017/S1041610217001508

29.

Leow

MQH

Chan

SWC

. The challenges, emotions, Coping, and gains of family caregivers caring for patients with advanced cancer in Singapore. Cancer Nurs. 2017;40(1):22-30. doi:10.1097/ncc.0000000000000354

30.

Mariyana

Allenidekania

Nurhaeni

. Parents' voice in managing the pain of children with cancer during Palliative care. Indian J Palliat Care. 2018;24(2):156-161. doi:10.4103/IJPC.IJPC_198_17

31.

Philip

Venables

Manima

Tripathy

Philip

. Small small interventions, big big roles"- a qualitative study of patient, care-giver and health-care worker experiences of a palliative care programme in Kerala, India. BMC Palliat Care. 2019;18(1):16. doi:10.1186/s12904-019-0400-2

32.

Wannapornsiri

. The experiences of family caregivers providing palliative cancer care in Thailand. Int J Palliat Nurs. 2018;24(11):559-565. doi:10.12968/ijpn.2018.24.11.559

33.

Warrier

Thomas

Sadasivan

, et al. Development of guidelines for spouses engaged in home-based care of persons with motor neuron disease from Indian context. J Patient Exp. 2022;9:23743735221077535-23743735221077610. doi:10.1177/23743735221077535

34.

Warrier

Sadasivan

Polavarapu

, et al. Lived Experience of spouses of persons with motor neuron disease: preliminary findings through interpretative phenomenological analysis. Indian J Palliat Care. 2020;26(1):60-65. doi:10.4103/IJPC.IJPC_123_19

35.

Effendy

Uligraff

Sari

Angraini

Chandra

. Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study. BMC Palliat Care. 2022;21(1):104. doi:10.1186/s12904-022-00986-5

36.

Kristanti

Effendy

Utarini

Vernooij-Dassen

Engels

. The experience of family caregivers of patients with cancer in an Asian country: a grounded theory approach. Palliat Med. 2019;33(6):676-684. doi:10.1177/0269216319833260

37.

Nafratilova

Allenidekania

Wanda

. Still hoping for a miracle: parents' experiences in caring for their child with cancer under Palliative Care. Indian J Palliat Care. 2018;24(2):127-130. doi:10.4103/IJPC.IJPC_195_17

38.

Rochmawati

Wiechula

Cameron

. Centrality of spirituality/religion in the culture of palliative care service in Indonesia: an ethnographic study. Nurs Health Sci. 2018;20(2):231-237. doi:10.1111/nhs.12407

39.

Mamom

Daovisan

. How Buddhist religious care is incorporated for end-of-life stroke patients receiving palliative care at home during the COVID-19 pandemic: revisiting constructivist grounded theory. Religions. 2022;13(10):1000. doi:10.3390/rel13101000

40.

Nilmanat

Street

. Karmic quest: Thai family caregivers promoting a peaceful death for people with AIDS. Contemp Nurse. 2007;27(1):94-103. doi:10.5555/conu.2007.27.1.94

41.

Aulino

. Senses and Sensibilities: The Practice of Care in Everyday Life in Northern Thailand [Dissertation]. Harvard University; 2013.

42.

Tipseankhum

Tongprateep

Forrester

, et al. Experiences of people with advanced cancer in home-based palliative care. Pac Rim Int J Nurs Res. 2016;20(3):238-251.

43.

Nilmanat

Street

. Search for a cure: narratives of Thai family caregivers living with a person with AIDS. Soc Sci Med. 2004;59(5):1003-1010. doi:10.1016/j.socscimed.2003.12.003

44.

Chong

Khalid

Abdullah

. Compassionate Healthcare for parents of children with life-limiting illnesses: a qualitative study. Indian J Palliat Care. 2022;28(3):266-271. doi:10.25259/IJPC_50_2021

45.

Krisdiyanto

Dahlia

Waluyo

. On home-based care decision making: the will of the family of palliative cancer patients. Enferm Clin. 2019;29:111-116. doi:10.1016/j.enfcli.2019.04.017

46.

Hudson

Trauer

Kelly

, et al. Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial. Psychooncology. 2015;24(1):19-24. doi:10.1002/pon.3610

47.

Hudson

Trauer

Kelly

, et al. Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial. Psychooncology. 2013;22(9):1987-1993. doi:10.1002/pon.3242

48.

Gijsberts

MHE

Liefbroer

Otten

Olsman

. Spiritual care in palliative care: a systematic review of the recent European literature. Med Sci. 2019;7(2):25. doi:10.3390/medsci7020025

49.

Klop

Koper

Schweitzer

BPM

Jongen

Onwuteaka-Philipsen

. Strengthening the spiritual domain in palliative care through a listening consultation service by spiritual caregivers in Dutch PaTz-groups: an evaluation study. BMC Palliat Care. 2020;19(1):92. doi:10.1186/s12904-020-00595-0

50.

Ruiz-Junco

Morrison

. Empathy as care: the model of palliative medicine. Society. 2019;56(2):158-165. doi:10.1007/s12115-019-00344-x

51.

den Herder-van der Eerden

Hasselaar

Payne

, et al. How continuity of care is experienced within the context of integrated palliative care: A qualitative study with patients and family caregivers in five European countries. Palliat Med. 2017;31(10):946-955. doi:10.1177/0269216317697898

52.

Sarmento

Gysels

Higginson

Gomes

. Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care. 2017;7(4):0. doi:10.1136/bmjspcare-2016-001141

53.

Agom

Onyeka

Iheanacho

Ominyi

. Barriers to the provision and utilization of palliative care in Africa: a rapid Scoping Review. Indian J Palliat Care. 2021;27(1):3-17. doi:10.4103/ijpc.Ijpc_355_20

54.

Winger

Kvarme

Løyland

, et al. Family experiences with palliative care for children at home: a systematic literature review. BMC Palliat Care. 2020;19(1):165. doi:10.1186/s12904-020-00672-4

Supplementary Material

Please find the following supplemental material available below.

For Open Access articles published under a Creative Commons License, all supplemental material carries the same license as the article it is associated with.

For non-Open Access articles published, all supplemental material carries a non-exclusive license, and permission requests for re-use of supplemental material or any part of supplemental material shall be sent directly to the copyright owner as specified in the copyright notice associated with the article.

0.00 MB

0.08 MB

0.02 MB