Indian Journal of Palliative Care
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   Table of Contents - Current issue
Coverpage
April-June 2018
Volume 24 | Issue 2
Page Nos. 125-286

Online since Friday, April 13, 2018

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EDITORIAL  

Silver jubilee conference of Indian Association of Palliative Care-A reflection Highly accessed article p. 125
Sushma Bhatnagar
DOI:10.4103/IJPC.IJPC_55_18  
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SECTION 1: QUALITATIVE STUDIES IN PALLIATIVE CARE - ORIGINAL ARTICLES Top

Still hoping for a miracle: Parents' experiences in caring for their child with cancer under palliative care Highly accessed article p. 127
Mercy Nafratilova, Allenidekania Allenidekania, Dessie Wanda
DOI:10.4103/IJPC.IJPC_195_17  
Context: Parents' despair and feelings of grief, as well as communication and coordination that is less than adequate between the parents and the palliative team, can affect the provision of a qualified palliative care plan for children and their families. Aims: This study aims to explore the parents' experience in caring for children with cancer under palliative care condition. Setting and Design: The research applied descriptive qualitative phenomenology design. Subjects and Methods: The study was conducted at Jakarta, Bogor, and Bekasi. Parents who caring their child with cancer under palliative care were in-depth interviewed with open-ended question. Data were then analyzed using the Colaizzi method. Results: This study resulted in two themes, still hoping for a miracle of God and always being surrendered while under palliative care. Parents still hope for a miracle of God to keep having their children during palliative care. The forms of surrendering exhibited by the parents in this study are believing in God, praying to God, saying thanks to God, relying on God, and preparing to face the deaths of their children. Conclusion: This study shows that during palliative care, parents cannot be separated from their relationship with God. Therefore, nurses are vital to the continuous assessment of parents' spiritual needs and to the facilitation of need fulfillment involving family and religious figures.
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Getting out or remaining in the cage of inauthentic self: The meaning of existential challenges in patients' with cancer p. 131
Zohreh Khoshnood, Sedigheh Iranmanesh, Masoud Rayyani, Mahlegha Dehghan
DOI:10.4103/IJPC.IJPC_179_17  
Context: Cancer as a life-threatening disease develops a range of existential challenges in persons. These challenges cause the patients to encounter some existential questions and tensions. This study method focuses on a person's experience about them. Aims: The aim of this study is to illuminate the meaning of existential challenges in patients with cancer in Iran. Subjects and Methods: A hermeneutic phenomenological approach, influenced by the philosophy of Ricoeur, was used to analyze the experiences of 10 Iranian patients with cancer. Data analysis was based on three stages of simple and fast understanding, structural analysis, and comprehensive understanding. Results: The present study showed that existential challenges in patients with cancer can be considered as getting out or remaining in the cage of inauthentic self. This theme consists of two subthemes “Being exposed to the light of awareness that revealed the cage of inauthentic self” and “The tension between getting out of the cage or remaining.” First, being exposed to the light of awareness revealed the cage of inauthentic self which subjectively refers to the emergence of existential questions, the past, the fear of future, and the collapse of physical body identity. Second, the tension between getting out of the cage or still staying which is characterized by anger, denial, sense of loneliness, and depression. Conclusions: According to the results of this qualitative study, it is possible to form discussion groups with peers or have self-reflective practice teaching groups to reflect patients' questions and existential challenges. In this way, participants can express themselves, share their experiences, challenges, learn, and find the answers.
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Exploring education and training needs in palliative care among family physicians in Mumbai: A qualitative study p. 139
Anuja Damani, Arunangshu Ghoshal, Manjiri Dighe, Sunil Dhiliwal, Maryann Muckaden
DOI:10.4103/IJPC.IJPC_216_17  
Context: Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. Aims: This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. Settings and Design: Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. Subjects and Methods: Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. Results and Conclusions: FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.
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Developing a training course for spiritual counselors in health care: Evidence from Iran p. 145
Behzad Damari, Ahmad Hajebi, Jafar Bolhari, Alireza Heidari
DOI:10.4103/IJPC.IJPC_207_17  
Background: Spiritual health can cause mental health promotion and well-being of the people's lives but it is still neglected in practice so that there is no trace of spiritual training in medical education in Iran. This study was conducted to develop a training course for spiritual counselors in the Iranian health-care system. Methods: In this qualitative study, senior managers of the Ministry of Health (MOH) and experts in the related fields were purposively selected as the participants. Semi-structured interviews and focused group discussions (FGDs) were conducted to collect the data. After transcription of the interviews and FGDs, the data were analyzed using content analysis. Results: In this package, community-based spiritual health services are offered in three forms of spiritual lifestyle education, introducing social facilities, and collaborating with the related organizations. Hospital services are offered in four forms of assessment of the spiritual status and referral, spiritual care, spiritual counseling, and providing a spiritual environment in the hospital. Conclusion: According to the results of the study, it is suggested that a strategic committee be established at the MOH level for establishment of these training courses as well as another strategic committee for evaluation, review, and service package promotion, and its training courses should be formed. In addition, a set of skills for spiritual assessment of patients and the related interventions should be designed for clinical skill centers of the country in the form of skill training packages.
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Providing palliative care in rural Nepal: Perceptions of mid-level health workers p. 150
Rajesh N Gongal, Shambhu Kumar Upadhyay, Kedar Prasad Baral, Max Watson, George W Kernohan
DOI:10.4103/IJPC.IJPC_196_17  
Introduction: Nepal is beginning to develop palliative care services across the country. Most people live in rural areas, where the Mid-Level Health Workers (MHWs) are the major service providers. Their views on providing palliative care are most important in determining how the service is organized and developed. Aim: This study aims to ascertain the perceptions of MHWs about palliative care in their local community, to inform service development. Methods: A qualitative descriptive design, using focus group discussions, was used to collect data from a rural district of Makwanpur, 1 of the 75 districts of Nepal. Twenty-eight MHWs participated in four focus group discussions. The data were analyzed using content analysis. Result: Four themes emerged from the discussion: (i) suffering of patients and families inflicted by life-threatening illness, (ii) helplessness and frustration felt when caring for such patients, (iii) sociocultural issues at the end of life, and (iv) improving care for patients with palliative care needs. Conclusion: MHWs practicing in rural areas reported the suffering of patients inflicted with life-limiting illness and their family due to poverty, poor access, lack of resources, social discrimination, and lack of knowledge and skills of the health workers. While there are clear frustrations with the limited resources, there is a willingness to learn among the health workers and provide care in the community.
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Parents' voice in managing the pain of children with cancer during palliative care p. 156
Rina Mariyana, Allenidekania Allenidekania, Nani Nurhaeni
DOI:10.4103/IJPC.IJPC_198_17  
Context: Pain experienced by children can adversely affect their growth and development. Pain is a major health problem for cancer patients and remains an unresolved problem. Aim: To know how the experiences of mothers managing their children's pain during palliative care following cancer diagnosis. Background: Pain experienced by children can adversely affect their growth and development. Subject and Methods: Using qualitative methods within a descriptive phenomenological approach, in-depth interviews were conducted with parents (mostly mothers) of eight children diagnosed with cancer. The data were collected using the snowball sampling method. Results: Participants experienced in managing the pain of children with cancer. Analysis of the results identified 8 themes: the dimensions of pain experienced by children undergoing palliative care; mothers' physical and psychological responses; mothers' emotional responses; barriers encountered by mothers when taking care of their child at home; mothers' interventions to reduce their child's pain; mothers' efforts to distract their child from pain; giving encouragement when the child is in pain; and mothers' efforts and prayers to make their child comfort. Conclusion: It can be concluded that the child's pain is the main cause of mothers' stress and pressure and also affects the daily lives of mothers and children. Along with the most effective intervention, nurses need to provide mothers and children with adequate information about cancer pain.
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Phenomenology study on nurses' experiences in understanding the comfort of children at the end-of-life p. 162
Roro Lintang Suryani, Allenidekania Allenidekania, Imami Nur Rachmawati
DOI:10.4103/IJPC.IJPC_200_17  
Context: Patients' need for comfort at the end of their lives is rarely fulfilled. The comfort of patients at the end of their lives, especially children, is affected by nurses' understanding of what comfort means. Aims: This research aims to explore and to understand the meaning of children's comfort at the end of their life for nurses. Setting and Design: The research applied descriptive qualitative phenomenology design. Subject and Methods: The study was conducted at Jakarta. Nurses who have experience in caring the child at the end of their life were in-depth interview with an open-ended question. Data were then analyzed using the Colaizzi method. Results: This research identified six themes: striving to reduce children's suffering, realizing what children wanted, observing the children felt comfortable in their family's acceptance of their condition, facing internal and external conflict, experiencing mixed feelings knowing the children's condition, and requiring support from all parties. Conclusion: Nurses should provide information regarding children's end of life conditions to the family, to achieve family acceptances. Eventhough it was hard situation and rose internal conflict to nurses. It was found that children also felt comfortable at the end-of-life when they did not experience any suffering, and their wishes were granted. Subsequently, the nurses did not have mixed feelings when the children died. Therefore, evaluation of the training effectiveness that has been given to the nurses should be done to fulfill the need of the child's comfort at the end-of-life.
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SECTION 2: OBSERVATIONAL STUDIES IN PALLIATIVE CARE - ORIGINAL ARTICLES Top

Professional quality of life among professional care providers at cancer palliative care centers in Bengaluru, India p. 167
Amanpreet Kaur, Mahendra P Sharma, Santosh K Chaturvedi
DOI:10.4103/IJPC.IJPC_31_18  
Context: Being a professional care provider at cancer palliative care settings is demanding and stressful. Literature has indicated the prevalence of high burnout (BO) and distress; however, there is a dearth of studies in India, with no study available on professional quality of life in the field of palliative care. Aims: The aim of the present study was to explore the professional quality of life, namely-compassion satisfaction [CS], burnout [BO], and secondary traumatic stress [STS] among professional care providers at cancer palliative care centers. Settings and Design: A cross-sectional, descriptive, and quantitative study was carried out at four cancer palliative care centers in Bengaluru after the permissions and ethical approvals. Subjects and Methods: The tools used were brief sociodemographic datasheet and professional quality of life (ProQoL)-Version 5 administered with 65 participants (mean age = 32.5 and standard deviation = 11.78) with work experience of at least 6 months. Analysis: A descriptive, correlational, and inferential analysis of the quantitative data was undertaken. Results: The results revealed that an average level of CS and BO was reported by 32 (49.2%) and 35 (53.8%) study participants, respectively, while 62 (95.4%) participants reported higher STS on ProQoL scale-Version 5. Significant differences in levels of CS, BO, and STS were found based on additional training taken in palliative care (P = 0.01), designation type (P < 0.001), and workplace type (P = 0.01). Conclusion: The overall results strongly suggest that a short intervention targeting STS and BO can help the study population and further enhance their CS and patient care.
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Symptoms in Bangladeshi patients with incurable cancers: Implications for interventions p. 173
Richard R Love, GM Tanimul Ahsan, Tahmina Ferdousy, Shamsun Nahar, Sheikh Iqbal Ahamed
DOI:10.4103/IJPC.IJPC_203_17  
Aims: The poor state of palliative care in low- and middle-income countries has been termed a global crisis by the Lancet Commission on Palliative Care. The investigators previously reported on a cross-sectional study of symptoms in 640 Bangladeshi adults with incurable cancers. Usual levels of pain were high. The not-reported details of pain and other symptoms offered an opportunity to consider explanations and implications for interventions to lessen these symptoms. Methods: At one visit, 640 Bangladeshi patients completed a symptom questionnaire. The distributions of 12 symptom level scores and the correlations between pain and different symptom scores were determined. Results: The population had significantly high and functionally compromising average usual pain scores, but low percentages of patients with very high and low pain scores. The distributions of scores for multiple symptoms were all skewed to higher mid-scale levels and modestly high (≥0.6) correlations of pain with nausea, anxiety, lack of appetite, constipation, and sleep quality were seen. Conclusions: While the types and direct effects of the cancers, the young age distribution, and the true symptomatic status of this Bangladeshi population studied may explain the described characteristics, the observations deserve exploration of other causes with specific therapeutic implications. These patients appear to have been partially treated for pain, and in particular, environmental factors such as extreme heat and its consequences appear more likely causes of moderate levels of multiple symptoms, which collectively magnified patients' suffering. Greater attention to gastrointestinal symptoms and sleep disturbance, in particular, seems indicated.
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Analgesic and opioid use in pain associated with head-and-neck radiation therapy p. 176
Sandeep Muzumder, S Nirmala, HU Avinash, M G John Sebastian, Prashanth Bhat Kainthaje
DOI:10.4103/IJPC.IJPC_145_17  
Aim: The aim of the study is to find the incidence of analgesic and opioid use in pain associated in HNC patient undergoing radiation therapy. Background: Radiation therapy with concurrent chemotherapy has become the standard of care in head and neck cancer. Acute toxicity like mucositis and dysphagia has increased with aggressive therapy. Pain is an invariable accompaniment of oropharyngeal mucositis, which leads to decreased quality of life and treatment break. Materials and Methods: This is a retrospective review of radiation charts of head and neck patients treated from January 2013 to June 2017 at St. John's Medical college and Hospital, Bengaluru. Results: A total of 138 (92%) patients required analgesia during the radiation course. The analgesic consumption started increasing from week 2, peaked at week 5, persist for 6 weeks and started declining after week 10. 52% patients required opioids, especially from week 4 to week 8. 15% of patients required Morphine, the maximum use in week 6 to week 8. The use of chemotherapy (P = 0.031), presence of grade 3 mucositis (P = 0.010) and grade 3 dysphagia (P = 0.001) were significantly associated with severe pain (use of strong opioids). All 80 (100%) patients receiving concurrent chemotherapy required analgesia. More than 80% patients required opioids and one fourth required strong analgesic in concurrent chemotherapy group. Conclusion: More than 90% of all head and neck cancer patient undergoing radiation therapy experience therapy related pain for more than 6 weeks. 53% of the patients require opioids and 15% require strong opioids. The use of concurrent chemotherapy was significantly associated with severe pain.
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Evaluation of supportive care management outcomes in cancer chemotherapy: A prospective observational study in a tertiary care teaching hospital in South India p. 179
Reshma Susan Reji, Binit Kumar, N Sreedharan, Girish Thunga, K Vijayanarayana, Mahadev Rao, Karthik S Udupa, MK Unnikrishnan
DOI:10.4103/IJPC.IJPC_174_17  
Aims: Evaluation of supportive care management of cancer patients experiencing drug-related problems (DRPs) is a challenge because it might increase the cost due to additional therapy. The main objectives of this study were to estimate chemotherapy-associated drug-related hospital admissions in the department of medical oncology and to estimate the cost of managing chemotherapy-associated DRPs. Settings and Design: This study is a prospective observational study. Subjects and Methods: Patients with chemotherapy-related DRPs were prospectively identified from the patient's medical records. The contribution of DRPs and cost incurred due to each hospitalization was assessed. Statistical Analysis Used: Data were analyzed using SPSS® 20.0 version. Results: Out of 55 patients analyzed for DRPs, 25 (45.5%) patients in the age group of 51–60 years experienced DRPs most frequently. Most commonly occurring DRP was adverse drug reactions 42 (76.4%), which were more frequent in females. DRPs were maximum with alkylating agents 15 (27.3%) and the least with hormonal agents 1 (1.8%). The mean length of hospitalization was 9.6 ± 6.5 days. The total direct medical cost was Rs. 31,540 ± 42,476, of which medicine cost accounted for Rs. 16,550 ± 25,404, constituting a major share of the total medical costs. Conclusions: Pharmacists can provide better patient care by identifying and preventing DRPs and reducing drug-related morbidity and mortality.
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Prognostic factors of malignant pleural effusion among palliative care outpatients: A retrospective study p. 184
Jenifer Jeba, Renitha M Cherian, Balamugesh Thangakunam, Reena George, J Visalakshi
DOI:10.4103/IJPC.IJPC_183_17  
Background: Malignant pleural effusion (MPE) has varied survival and indicates advanced disease. LENT prognostic score is the first validated score used for MPE. This study assessed the role of LENT among palliative care cancer patients and assessed different patient, tumor, and treatment related factors that may affect survival. Methods: A retrospective study of advanced cancer patients with MPE, seen in palliative care outpatient clinic (2013–2015) until death, was done. LENT prognostic score could be calculated in 15 patients. Patient, tumor, and treatment related factors that affect survival were assessed. Results: The study included 48 patients (70.8% female; 29.2% male) with a median age of 53 years. Lung (41.7%) was the most common primary, and adenocarcinoma (44.7%) was the most common histology. The median overall survival (OS) was 14.5 months (interquartile range [IQR]: 5.25–32.75) and median survival time (ST) was 3 months (IQR: 1–7.75). ST was significantly low with poor Eastern Cooperative Oncology Group (ECOG) performance status (P = 0.002), bilateral effusion (P < 0.001), and with no oncological treatment after MPE diagnosis (P < 0.001). OS and ST were significantly low with lung primary (P = 0.006 and 0.02, respectively). Age, gender, breathlessness, tumor histology, lung metastasis, and interventions for MPE did not significantly affect survival. The median ST in the moderate and high risk LENT groups was 6 and 3 months, respectively (P = 0.16). Conclusion: ECOG performance status, bilateral effusion, and no oncological treatment after diagnosis of MPE were associated with poor ST. Lung primary was associated with shorter OS and ST. Small numbers precluded any definitive conclusion on the prognostic value of LENT in our group of patients, and hence larger studies are recommended.
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Burden experience of caregivers of acute lymphoblastic leukemia: Impact of coping and spirituality p. 189
Usha Chivukula, Sirisha Kota, Durgesh Nandinee
DOI:10.4103/IJPC.IJPC_209_17  
Background: When a child is diagnosed with cancer the parents as caregivers experience severe anxiety, trauma, ambiguity, and grief. Caregivers of cancer patients thus deal with the management of their own psychological distress along with the child's illness. Aim: Coping plays a crucial role in improving the caregivers' physical and emotional well-being. Spirituality is an important means of consolation, strength, and emotional support during this phase. The present study aims to investigate the impact of coping and spirituality on caregiver burden. Methods: A total of 100 caregivers of children between the age group of 3–11 years, diagnosed with acute lymphoblastic leukemia were the participants of the study. The participants were recruited from cancer hospitals in Hyderabad. The study adopted a between-group design to find out if mothers and fathers differed in their coping strategies, spirituality, and caregiver burden. The study also adopted a correlation design to find the relationship between coping, spirituality, and caregiver burden. Descriptive statistics and multiple linear regression analysis were conducted to identify if coping and spirituality predict caregiver burden. Results: The results showed no significant difference in the burden experienced by both mothers and fathers; however, mothers and fathers used different coping strategies and differed on the dimensions of spirituality. The results of multiple linear regression indicated that dimensions of coping and spirituality were significant predictors of caregiver burden. Conclusion: Cancer in the child impacts the parent's burden but providing sufficient support and implementing effective coping strategies, will help in mitigating the intensity of caregiver burden. It is essential that the hospital authorities and policymakers understand that a professional health psychologist could be a liaison between the doctor, patient, and the caregiver in bringing down the levels of burden and psychological distress in caregivers as well as patients.
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Spirituality-focused palliative care to improve indonesian breast cancer patient comfort p. 196
Tuti Nuraini, Andrijono Andrijono, Dewi Irawaty, Jahja Umar, Dewi Gayatri
DOI:10.4103/IJPC.IJPC_5_18  
Background: Palliative care is an approach that focuses on improving a patient's quality of life. This research aimed to develop a path model of the relationships between the variables of nursing care (information, emotional support, technical support, and palliative care), patient coping, family support, patient spirituality, and patient comfort expressed through physical and emotional mediators. Method: This cross-sectional study involved 308 breast cancer patients from 3 referral hospitals in Jakarta, Indonesia. A structural equation model with Kolcaba's theory was used to develop a theoretical model estimating the path or relationships between the key variables. Results: The results showed that palliative care significantly improved breast cancer patient comfort by reducing anxiety and depression. Furthermore, the study demonstrated a significant positive relationship between spirituality and emotional well-being. Conclusion: Spirituality-focused palliative care is fundamentally importance for breast cancer patients. Nurses play an essential role in providing spirituality-focused palliative care to promote comfort in breast cancer patients in Indonesia.
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Perceived barriers to symptoms management among family caregivers of cancer patients p. 202
Malathi G Nayak, Anice George, MS Vidyasagar
DOI:10.4103/IJPC.IJPC_27_18  
Introduction: Caring for patients with advanced disease involves many concerns for caregivers. All aspects of health of the caregiver is compromised in the process of caring for the cancer patients. Usually, most of the terminally ill cancer patients live with their caregivers at home. Objectives: The aims of the present study was to identify the barriers to symptom management among caregivers of cancer patients and to find the association between perceived barriers to symptom management of caregivers' with their demographic variables and their patients' disease-related variables. Materials and Methods: A descriptive study was conducted among 768 family caregivers (FCGs) of cancer patients, and they were selected using convenient sampling technique. Data was collected from caregivers who were caring for their beloved one at least 2–3 h/day and who were above 20 years of age. Data was collected through a structured interview using barriers questionnaire and demographic pro forma after obtaining the consent from the caregivers. Results: The result shows that among 768 FCGs, 216 (28.1%) of them were in the age group between 31 and 40 years and most of them were spouses (45.6%). The perceived barriers of caregivers were less confidence on the management of symptoms. A total of 423 (55.1%) had lack of awareness about pain assessment and management of cancer by 681 (88.6%). Majority, i.e., 654 (85.1%) of them had financial problems in the family. Conclusion: FCGs take the major responsibilities both at the hospital and at home in caring for the cancer patients. Since FCGs had lack of knowledge on caring of cancer patients, there is a need for awareness program on the assessment and management of symptoms among cancer patients.
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SECTION 3: IAPCON 2018 CONFERENCE ABSTRACTS Top

Oral Presentaton Abstracts p. 207
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Poster Presentation Abstracts p. 228
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Slogan Presentations p. 283
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Art Poster Presentation p. 285
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