Exploring the scope and challenges of palliative care among patients and caregivers in Bhubaneswar, Odisha, India: A qualitative inquiry

Authors

DOI:

Keywords

palliative care, caregiver burden, qualitative research

Correspondence

Jyana Ranjan Mohapatra
Email: jyanaranjanmahapatra@gmail.com

Publication history

Received: 13 Apr 2026
Accepted: 29 May 2026
Published online: 1 July 2026

Responsible editor

Reviewer

Funding

None

Ethical approval

Approved by Directorate of Medical Education and Training, Odisha, Ref no: 15217/MET-I-Misc-48/2024, Dated 10 Sep 2025.

Trial registration number

Not applicable

Copyright

© The Author(s) 2026; all rights reserved. 
Published by Bangladesh Medical University (former Bangabandhu Sheikh Mujib Medical University).
Key messages
Family caregivers in Odisha reported universal pre-referral unawareness of palliative care and encountered cultural stigma equating it with dying. Pain control, home-based caregiver training, and spiritual support were highly valued (rated 4–5 out of 5). Critical gaps persist in community awareness, home-care infrastructure, and advance care planning. Structured caregiver training substantially mitigated burden. Investment in community education and home-based care is urgently needed.

Palliative care remains severely underutilised in India, where over five million individuals require such services annually yet coverage spans only a fraction of this need, with the largest deficits concentrated in eastern states [1]. India’s National Programme for Palliative Care has achieved meaningful penetration only in select districts; access across Odisha is critically constrained by workforce shortages, limited public awareness, and inadequate infrastructure. Odisha, despite its substantial cancer burden, lacks organised palliative care delivery beyond its capital, Bhubaneswar. Family caregivers shoulder the primary burden of end-of-life care in this context, yet no qualitative study had examined their lived experiences within specialist palliative settings in the state. This study aimed to explore caregiver experiences across symptom management, the healthcare environment, communication, psychosocial and spiritual support, and caregiver burden at two specialist palliative care units in Bhubaneswar.

An interpretative phenomenological analysis (IPA) design was employed. Ten primary family caregivers (n = 10; 70% female) of terminally ill patients were purposively recruited from two specialist palliative care units in Bhubaneswar. Data were collected over approximately four months, from October 2025 to January 2026. Participants represented four districts of Odisha (Khordha, Kandhamal, Nayagarh, and Bhubaneswar), and patient diagnoses included advanced lung carcinoma with metastasis, metastatic rectal carcinoma, and other advanced malignancies. Eligibility required participants to be aged ≥18 years and serving as primary caregiver to a patient who had received palliative care for ≥2 weeks. In-depth, semi-structured interviews were conducted in Odia by a trained bilingual researcher, audio-recorded, transcribed verbatim, and back-translated for a 30% subsample with no substantive discrepancies identified. Braun and Clarke’s six-phase thematic analysis was applied by two independent coders, and discrepancies were resolved by consensus [2]. Rigour was ensured through member-checking, peer debriefing, and reflexive journalling. Data collection continued until thematic saturation was reached, with no new themes emerging from the final two interviews. Domain-level satisfaction was additionally captured using a five-point Likert-type scale (1 = worst, 5 = best) administered during the interviews; these ratings were not subjected to inferential statistical analysis but were interpreted descriptively to triangulate and contextualise the qualitative themes within the interpretive phenomenological framework. The study is reported per the Consolidated Criteria for Reporting Qualitative Research (COREQ) 32-item checklist [3].

Table 1 Themes, sub-themes, illustrative codes, and theoretical framework anchors

Theme

Sub-theme

Illustrative codes

Theoretical anchor

1. Initial unawareness of palliative care

a. Pre-referral unawareness 
b. Post-admission clarity and relief 
c. Stigma and cultural illness beliefs

Never heard of palliative care; equated with dying; relief after orientation

Health Literacy Model; Kleinman’s Explanatory Model

2. Satisfaction with symptom management

a. Pain control 
b. Opioid education 
c. Breathlessness, nausea, comfort

Pain-free; confidence in medication; side-effect management

WHOa Pain Ladder; Donabedian Framework

3. Healthcare environment

a. Homelike ambience 
b. Facility adequacy and patient safety

Peaceful; clean; domestic warmth; safe facilities

IHIb Safety Framework; Evidence-Based Design

4. Communication, coordination, and home-based training

a. Proactive communication 
b. Structured home-based training 
c. Telephonic follow-up

Informed daily; never left in the dark; trained for home care

Person-Centred Care Framework; Caregiver Self-Efficacy Theory

5. Psychosocial, emotional, and spiritual support

a. Emotional counselling 
b. Spiritual and faith-based support 
c. Bereavement preparation

Restored coping capacity; pooja facilitated; grief normalised

Lazarus and Folkman Stress-Coping Model; FICAcTool; Worden’s Tasks of Mourning

6. End-of-life care and caregiver burden

a. Dignified dying 
b. Caregiver burden and mitigation

Peaceful death; cultural respect; training reduced helplessness

Good Death Framework; Caregiver Self-Efficacy Theory

aWorld Health Organization;bInstitute for Healthcare Improvement; cThe FICA tool is a structured framework used by healthcare providers to assess a patient’s spirituality, standing for Faith, Importance or Influence, Community, and Address or Action

Six themes were identified across 15 sub-themes (Table 1): (1) initial unawareness of palliative care; (2) high satisfaction with symptom management; (3) positive perception of the healthcare environment; (4) effective communication, coordination, and home-based training; (5) meaningful psychosocial, emotional, and spiritual support; and (6) end-of-life care and caregiver burden. All ten caregivers reported complete pre-referral unawareness, with cultural stigma equating palliative care with imminent death compounding access barriers — consistent with All India Institute of Medical Sciences (AIIMS) New Delhi data in which the majority of advanced cancer outpatients had not previously heard the term “palliative care” [4]. A representative caregiver from Kandhamal district described: “My relatives said, why are you taking her there? That is the place for those who are about to die.” All caregivers described a transformative shift from fear to understanding and relief following structured team orientation. The healthcare environment was rated 3–5 out of 5 and consistently characterised as qualitatively distinct from conventional hospital settings — peaceful, clean, and domestically warm — features identified as essential components of healing in Indian palliative care settings [5]. Pain control was rated 4–5 out of 5 by all participants, a notably high finding given documented opioid access barriers in India. Proactive communication and structured home-based caregiver training — encompassing analgesic administration, wound care, nutritional guidance, repositioning, and emergency escalation — were rated 4–5 out of 5 and substantially reduced caregiver burden, consistent with Kerala home-based palliative care evidence [6]. Spiritual care, including facilitation of prayer, pooja, and culturally appropriate bereavement counselling, was integral to coping [7]. Despite high overall satisfaction (3–5 out of 5 across all domains), all caregivers reported substantial physical and emotional burden, most pronounced among those with limited home-based support.

Universal pre-referral unawareness replicates findings from leading Indian tertiary centres [4, 8] and, when interpreted through the Health Literacy Model, underscores structural barriers that require targeted community awareness campaigns and integration of palliative care into undergraduate medical and nursing curricula; 81% of Indian medical professionals surveyed by Patel et al. expressed a desire for such training [9]. The pain management outcomes challenge persistent narratives of inadequate opioid availability in Indian palliative settings and represent a replicable, transferable model for statewide expansion. The structured home-based training programme aligns with Caregiver Self-Efficacy Theory and Kerala data demonstrating burden mitigation across seven domains following structured caregiver support, providing a scalable model for other Indian states [6]. Spiritual care integration aligns with Jacob et al.’s evidence that cultural sensitivity and respect for religious practice constitute core nursing competencies in Indian palliative care, [5] and with India-specific IPA evidence identifying faith, karma, and religious ritual as primary coping resources [7]. Critical structural gaps persist in community awareness, home-care infrastructure, and advance care planning, whose adoption is associated with significantly reduced complicated grief risk (OR=0.4; 95% CI: 0.9–0.7) in bereaved caregivers [10]. Key strengths of this study include its status as the first qualitative inquiry into specialist palliative care experiences in Odisha, a methodologically rigorous interpretive-phenomenological design, dual independent coding, member-checking, back-translation, and COREQ-compliant reporting. Study limitations include urban-only recruitment, limiting rural and tribal generalisability, and a cross-sectional single-interview design.

This study provides the first qualitative evidence of family caregiver experiences within specialist palliative care services in Odisha. Palliative services in Bhubaneswar demonstrate clinically competent, psychosocially responsive, and culturally sensitive care, yet persistent structural gaps in community awareness, home-care infrastructure, and advance care planning constrain equitable access across the state. Urgent investment in community-based palliative education, scalable caregiver training programmes, and culturally integrated home-based services is required to ensure dignified end-of-life care. Longitudinal and mixed-methods research, inclusive of rural and tribal populations, is warranted.

Variables  

Frequency (%)

Indication of colposcopy

 

Visual inspection of the cervix with acetic acid positive

200 (66.7)

Abnormal pap test

13 (4.3)

Human papilloma virus DNA positive

4 (1.3)

Suspicious looking cervix

14 (4.7)

Others (per vaginal discharge, post-coital bleeding)

69 (23.0)

Histopathological diagnosis

Cervical Intraepithelial Neoplasia 1

193 (64.3)

Cervical Intraepithelial Neoplasia 2

26 (8.7)

Cervical Intraepithelial Neoplasia 3

32 (10.7)

Invasive cervical cancer

27 (9.0)

Chronic cervicitis

17 (5.6)

Squamous metaplasia

5 (1.7)

Groups based on pre-test marks

Pretest
marks (%)

Posttest

Marks (%)

Difference in pre and post-test marks (mean improvement)

P

Didactic lecture classes

<50%

36.6 (4.8)

63.2 (9.4)

26.6

<0.001

≥50%

52.8 (4.5)

72.4 (14.9)

19.6

<0.001

Flipped classes

<50%

36.9 (4.7)

82.2 (10.8)

45.4

<0.001

≥50%

52.8 (4.6)

84.2 (10.3)

31.4

<0.001

Data presented as mean (standard deviation)

Background characteristics

Number (%)

Age at presentation (weeks)a

14.3 (9.2)

Gestational age at birth (weeks)a

37.5 (2.8)

Birth weight (grams)a

2,975.0 (825.0)

Sex

 

Male

82 (41)

Female

118 (59)

Affected side

 

Right

140 (70)

Left

54 (27)

Bilateral

6 (3)

Delivery type

 

Normal vaginal delivery

152 (76)

Instrumental delivery

40 (20)

Cesarean section

8 (4)

Place of delivery

 

Home delivery by traditional birth attendant

30 (15)

Hospital delivery by midwife

120 (60)

Hospital delivery by doctor

50 (25)

Prolonged labor

136 (68)

Presentation

 

Cephalic

144 (72)

Breech

40 (20)

Transverse

16 (8)

Shoulder dystocia

136 (68)

Maternal diabetes

40 (20)

Maternal age (years)a

27.5 (6.8)

Parity of mother

 

Primipara

156 (78)

Multipara

156 (78)

aMean (standard deviation), all others are n (%)

Background characteristics

Number (%)

Age at presentation (weeks)a

14.3 (9.2)

Gestational age at birth (weeks)a

37.5 (2.8)

Birth weight (grams)a

2,975.0 (825.0)

Sex

 

Male

82 (41)

Female

118 (59)

Affected side

 

Right

140 (70)

Left

54 (27)

Bilateral

6 (3)

Delivery type

 

Normal vaginal delivery

152 (76)

Instrumental delivery

40 (20)

Cesarean section

8 (4)

Place of delivery

 

Home delivery by traditional birth attendant

30 (15)

Hospital delivery by midwife

120 (60)

Hospital delivery by doctor

50 (25)

Prolonged labor

136 (68)

Presentation

 

Cephalic

144 (72)

Breech

40 (20)

Transverse

16 (8)

Shoulder dystocia

136 (68)

Maternal diabetes

40 (20)

Maternal age (years)a

27.5 (6.8)

Parity of mother

 

Primipara

156 (78)

Multipara

156 (78)

aMean (standard deviation), all others are n (%)

Mean escape latency of acquisition day

Groups                 

NC

SC

ColC

Pre-SwE Exp

Post-SwE Exp

Days

 

 

 

 

 

1st

26.2 (2.3)

30.6 (2.4) 

60.0 (0.0)b

43.2 (1.8)b

43.8 (1.6)b

2nd

22.6 (1.0) 

25.4 (0.6)

58.9 (0.5)b

38.6 (2.0)b

40.5 (1.2)b

3rd

14.5 (1.8) 

18.9 (0.4) 

56.5 (1.2)b

34.2 (1.9)b 

33.8 (1.0)b

4th

13.1 (1.7) 

17.5 (0.8) 

53.9 (0.7)b

35.0 (1.6)b

34.9 (1.6)b

5th

13.0 (1.2) 

15.9 (0.7) 

51.7 (2.0)b

25.9 (0.7)b 

27.7 (0.9)b

6th

12.2 (1.0) 

13.3 (0.4) 

49.5 (2.0)b

16.8 (1.1)b

16.8 (0.8)b

Average of acquisition days

5th and 6th 

12.6 (0.2)

14.6 (0.8)

50.6 (0.7)b

20.4 (2.1)a

22.4 (3.2)a

NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure.

aP <0.05; bP <0.01.

Categories

Number (%)

Sex

 

   Male

36 (60.0)

   Female

24 (40.0)

Age in yearsa

8.8 (4.2)

Education

 

   Pre-school

20 (33.3)

   Elementary school

24 (40.0)

   Junior high school

16 (26.7)

Cancer diagnoses

 

Acute lymphoblastic leukemia

33 (55)

Retinoblastoma

5 (8.3)

Acute myeloid leukemia

4 (6.7)

Non-Hodgkins lymphoma

4 (6.7)

Osteosarcoma

3 (5)

Hepatoblastoma

2 (3.3)

Lymphoma

2 (3.3)

Neuroblastoma

2 (3.3)

Medulloblastoma

1 (1.7)

Neurofibroma

1 (1.7)

Ovarian tumour

1 (1.7)

Pancreatic cancer

1 (1.7)

Rhabdomyosarcoma

1 (1.7)

aMean (standard deviation)

Test results

Disease

Sensitivity (%)

Specificity (%)

PPV (%)

NPV (%)

Yes

No

Reid’s score ≥ 5

Positive

10

15

37.0

94.5

40.1

93.8

Negative

17

258

 

 

 

 

Swede score ≥ 5

Positive

20

150

74.1

45.0

11.8

94.6

Negative

7

123

 

 

 

 

Swede score ≥ 8

Positive

3

21

11.1

92.3

12.5

91.3

Negative

24

252

 

 

 

 

a High-grade indicates a score of ≥5 in both tests; PPV indicates positive predictive value; NPV, negative predictive value

Test

Sensitivity (%)

Specificity (%)

Positive predictive value (%)

Negative predictive value (%)

Reid’s score ≥ 5

37.0

94.5

40.0

93.8

Swede score ≥ 5

74.1

45

11.8

94.6

Swede score ≥ 8

11.1

92.3

12.5

91.3

Test

Sensitivity (%)

Specificity (%)

Positive predictive value (%)

Negative predictive value (%)

Reid’s score ≥ 5

37.0

94.5

40.0

93.8

Swede score ≥ 5

74.1

45

11.8

94.6

Swede score ≥ 8

11.1

92.3

12.5

91.3

Narakas classification

Total

200 (100%)

Grade 1

72 (36%)

Grade 2

64 (32%)

Grade 3

50 (25%)

Grade 4

14 (7%)

Complete recoverya

107 (54)

60 (83)

40 (63)

7 (14)

-

Near complete functional recovery but partial deformitya

22 (11)

5 (7)

10 (16)

6 (12)

1 (7)

Partial recovery with gross functional defect    and deformity

31 (16)

7 (10)

13 (20)

10 (20)

1 (7)

No significant improvement 

40 (20)

-

1 (1.5)

27 (54)

12 (86)

aSatisfactory recovery

bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7, 8, 9, Grade 4, panpalsy with Hornon’s syndrome.

Narakas classification

Total

200 (100%)

Grade-1

72 (36%)

Grade-2

64 (32%)

Grade-3

50 (25%)

Grade-4

14 (7%)

Complete recoverya

107 (54)

60 (83)

40 (63)

7 (14)

-

Near complete functional recovery but partial deformitya

22 (11)

5 (7)

10 (16)

6 (12)

1 (7)

Partial recovery with gross functional defect    and deformity

31 (16)

7 (10)

13 (20)

10 (20)

1 (7)

No significant improvement 

40 (20)

-

1 (1.5)

27 (54)

12 (86)

aSatisfactory recovery

bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7,8,9, Grade 4, panpalsy with Hornon’s syndrome.

Variables in probe trial day

Groups

NC

SC

ColC

Pre-SwE Exp

Post-SwE Exp

Target crossings

8.0 (0.3)

7.3 (0.3) 

1.7 (0.2)a

6.0 (0.3)a

5.8 (0.4)a

Time spent in target

18.0 (0.4) 

16.2 (0.7) 

5.8 (0.8)a

15.3 (0.7)a

15.2 (0.9)a

NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure.

aP <0.01.

Pain level

Number (%)

P

Pre

Post 1

Post 2

Mean (SD)a pain score

4.7 (1.9)

2.7 (1.6)

0.8 (1.1)

<0.001

Pain categories

    

   No pain (0)

-

1 (1.7)

31 (51.7)

<0.001

   Mild pain (1-3)

15 (25.0)

43 (70.0)

27 (45.0)

 

   Moderete pain (4-6)

37 (61.7)

15 (25.0)

2 (3.3)

 

   Severe pain (7-10)

8 (13.3)

2 (3.3)

-

 

aPain scores according to the visual analogue scale ranging from 0 to 10; SD indicates standard deviation

Surgeries

Number  

(%)

Satisfactory outcomes n (%)

Primary surgery (n=24)

 

 

Upper plexus

6 (25)

5 (83)

Pan-palsy

18 (75)

6 (33)

All

24 (100)

11 (46)

Secondary Surgery (n=26)

 

 

Shoulder deformity

15 (58)

13 (87)

Wrist and forearm deformity

11 (42)

6 (54)

All

26 (100)

19 (73)

Primary and secondary surgery

50 (100)

30 (60)

Mallet score 14 to 25 or Raimondi score 2-3 or Medical Research grading >3 to 5.

Narakas classification

Total

200 (100%)

Grade-1

72 (36%)

Grade-2

64 (32%)

Grade-3

50 (25%)

Grade-4

14 (7%)

Complete recoverya

107 (54)

60 (83)

40 (63)

7 (14)

-

Near complete functional recovery but partial deformitya

22 (11)

5 (7)

10 (16)

6 (12)

1 (7)

Partial recovery with gross functional defect    and deformity

31 (16)

7 (10)

13 (20)

10 (20)

1 (7)

No significant improvement 

40 (20)

-

1 (1.5)

27 (54)

12 (86)

aSatisfactory recovery

bGrade 1, C5, 6, 7 improvement; Grade 2, C5, 6, 7 improvement; Grade 3, panpalsy C5, 6, 7,8,9, Grade 4, panpalsy with Hornon’s syndrome.

Trials

Groups

NC

SC

ColC

Pre-SwE Exp

Post-SwE Exp

1

20.8 (0.6)

22.1 (1.8)

41.1 (1.3)b

31.9 (1.9)b

32.9 (1.8)a, b

2

10.9 (0.6)

14.9 (1.7)

37.4 (1.1)b

24.9 (2.0)b

26.8 (2.5)b

3

8.4 (0.5)

9.9 (2.0)

32.8 (1.2)b

22.0 (1.4)b

21.0 (1.4)b

4

7.8 (0.5)

10.4 (1.3)

27.6(1.1)b

12.8 (1.2)b

13.0 (1.4)b

Savings (%)c

47.7 (3.0)

33.0 (3.0)

10.0 (0.9)b

23.6 (2.7)b

18.9 (5.3)b

NC indicates normal control; SC, Sham control; ColC, colchicine control; SwE, swimming exercise exposure.

aP <0.05; bP <0.01.

cThe difference in latency scores between trials 1 and 2, expressed as the percentage of savings increased from trial 1 to trial 2

 Lesion-size

Histopathology report

Total

CIN1

CIN2

CIN3

ICC

CC

SM

0–5 mm

73

0

0

0

5

5

83

6–15 mm

119

18

1

4

0

0

142

>15 mm

1

8

31

23

12

0

75

Total

193

26

32

27

17

5

300

CIN indicates cervical intraepithelial neoplasia; ICC, invasive cervical cancer; CC, chronic cervicitis; SM, squamous metaplasia

 

Histopathology report

Total

CIN1

CIN2

CIN3

ICC

CC

SM

Lesion -Size

0-5  mm

73

0

0

0

5

5

83

6-15  mm

119

18

1

4

0

0

142

>15  mm

1

8

31

23

12

0

75

Total

193

26

32

27

17

5

300

CIN indicates Cervical intraepithelial neoplasia; ICC, Invasive cervical cancer; CC, Chronic cervicitis; SM, Squamous metaplasia

Group

Didactic posttest marks (%)

Flipped posttest marks (%)

Difference in marks (mean improvement)

P

<50%

63.2 (9.4)

82.2 (10.8)

19.0

<0.001

≥50%

72.4 (14.9)

84.2 ( 10.3)

11.8

<0.001

Data presented as mean (standard deviation)

Acknowledgements
We sincerely thank all family caregivers who generously shared their experiences during a profoundly difficult period of their lives. Gratitude is extended to the staff and management of both palliative care units in Bhubaneswar for facilitating participant recruitment and access, and to the bilingual research associate who assisted with transcription and back-translation of the Odia-language interview data.
Author contributions
Conception or design of the work; or the acquisition, analysis, or interpretation of data for the work: JRM, MD, SS, VJ. Drafting the work or reviewing it critically for important intellectual content: JRM, MD. Final approval of the version to be published: JRM, MD, SS, VJ. Accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved: JRM.
Conflict of interest
We do not have any conflict of interest.
Data availability statement
We confirm that the data supporting the findings of the study will be shared upon reasonable request.
AI disclosure
We declare that no artificial-intelligence (AI), large-language-model, or generative tools were used in the conception, design, data collection, analysis, interpretation, drafting, or editing of this manuscript. All content was written and reviewed by the named authors, who take full responsibility for the integrity, originality, and accuracy of the work and its conclusions.
Supplementary file
None
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