Beneficiary’s Satisfaction with Primary Palliative Care Services in Kerala – A Cross-Sectional Survey

INTRODUCTION

Palliative care (PC), as defined by the World Health Organization (WHO), is ‘an approach that improves the quality of life (QoL) of patients and their families who are facing problems associated with life-threatening illness.’ ^[1] Globally, an estimated 56.8 million people, mostly from low- and middle-income countries, require PCs.^[2] Only 14% (globally) and 2% (nationally) of those in need have access to such services.^[2,3] Over the past 20 years, the State of Kerala has gained national and international acclaim for its distinctive PC model.^[4] The hallmarks of the Kerala PC model include community ownership, involvement of local self-governments (LSGs), a meticulous state policy, and incorporation of PC into primary healthcare.^[5] Estimates showed that Kerala, which makes up only 3% of the country’s total population, provides nearly two-thirds of India’s PC services.^[2,3]

MATERIALS AND METHODS

A cross-sectional survey was conducted among beneficiaries who were the patients receiving HC services, through Kerala State primary PC program. The sample size was estimated using OpenEpi Version 3.0. Anticipating that 44% of the beneficiaries are satisfied with pain and PC services,^[13] assuming 5% absolute precision and design effect 1, the sample size was estimated to be 379 at a 95% confidence interval. Assuming a 10% non-response rate, the sample size was rounded to 450. The study was conducted in selected districts of Kerala using a two-stage cluster sampling method. Three blocks were randomly selected from five randomly selected districts. The list of primary PC units was collected from concerned district PC coordinators and used as a sampling frame. From each block, nine PC units were selected [Figure 1]. From the HC registry of each selected unit, ten beneficiaries were randomly selected, and the gate keeper consent was obtained through a community nurse. Then principal investigator of the study and the trained field investigators visited the beneficiaries’ residences, obtained consent from the study participants and then the data were collected using a semi-structured questionnaire [Annexure 1]. The field investigators were given an orientation session and included in a pilot survey to get them acquainted with the project. The questionnaire had five sections – (i) sociodemographic characteristics, (ii) clinical information, (iii) type of services received through the HC programme, (iv) beneficiary’s satisfaction, and (v) suggestions to improve the HC programme. The satisfaction component was captured using three domains – aspects of care provided in terms of professionalism, communication skills of nurses, and time spent by the HC team with patients. Each domain had four to five statements and three options for responses, with agreement indicating satisfaction in each main. In this study, beneficiaries’ satisfaction is defined as the satisfaction with all facets/domains of HC services, including clinical and rehabilitation services they received, interpersonal relationships between patients and the HC team, communication skills of nurses, and time spent by the HC team. The study was undertaken from October 2022 to May 2023.

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Figure 1:

Sampling strategy.

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RESULTS

Sociodemographic and clinical profile of participants

The mean age of the participants was 65.51 ± 17 years. Just over half were females (50.9%). More than 80% (88.4%) were married. One-fourth of the participants (27%) had no formal schooling, and the majority (67.9%) belonged to below the poverty line (BPL). Most of the participants (66.3%) were unemployed, and almost one-fifth (17.19%) were homemakers [Table 1]. The primary source of income of beneficiaries was an old-age pension of about Rs. 1,600/month, which is not received on a regular basis (80%). The majority of the participants (98.6%) had female primary caregivers, specifically daughter/daughter-in-law. Stroke was the most common primary diagnosis found (27.4%), followed by cancer (18.8%) and spinal cord injury (13.2%) [Figure 2]. More than one-quarter (26.3%) of the participants had multiple comorbidities. Around 60% of the participants had partial or full mobility but were home-bound.

Table 1: Sociodemographic profile of study participants.

Characteristics	Frequency (n=430)	Percentage
Age
<30 years	16	3.7
30–60 years	127	29.5
61–90 years	276	64.2
>90 years	11	2.6
Gender
Female	219	50.9
Male	211	49.1
Marital status
Single	49	11.4
Married	296	68.8
Widowed	80	18.6
Separated/divorced	5	1.2
Education
None	116	27
Elementary school	178	41.4
High school	92	21.4
Higher secondary and above	44	10.2
Economic status
No ration card	4	0.9
APL	134	31.1
BPL	292	67.9
Individual income
Yes	345	80.2
No	36	8.4
Not responded	49	11.4
Occupation
Employed	143	33.3
Unemployed	285	66.3
Students	2	0.4

APL: Above poverty line, BPL: Below poverty line

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Figure 2:

Distribution of primary diagnosis.

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Details of HC service

Most of the participants were enrolled in HC services for more than two years (43.3%). Most of the beneficiaries (84%) stated that they received one HC visit per month, while 11% received two to three visits per month due to medical emergencies. The beneficiaries received various types of services, including blood pressure (BP) checks (56.6%), random blood glucose tests, and various procedures (35.8%), including catheterisation, Ryles tube insertion, stoma care, enema, and wound care. Some of the beneficiaries (26.7%) reported that they got only a few medicines, such as Paracetamol, Diclofenac, and Pantoprazole, through the HC programme [Figure 3]. However, these medicines were not being distributed at home. The caregiver needs to go to the nearest healthcare facility to collect medicines which is extremely challenging.

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Figure 3:

Services received through primary palliative care program. *Health check-up of blood pressure and random blood sugar.

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Satisfaction with HC services

Nearly 70% of the beneficiaries (69.1%) were satisfied with the services provided by the HC team. District-wise comparisons revealed that beneficiaries in Thiruvananthapuram district (25.5%) showed the highest satisfaction, while Kollam showed the lowest (11.3%) [Figure 4].

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Figure 4:

District-wise comparison of satisfaction.

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The study also examined the needs of beneficiaries and found that home delivery of medicines (67.4%), physical therapy (PT) (52.3%) at homes (minimum three/month), and inclusion of doctor’s visits (49.8%) in HC [Figure 5] were the main requirements.

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Figure 5:

Requirements reported by beneficiaries.

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DISCUSSION

This present study is one of the first state-wide studies in Kerala to assess the satisfaction level of beneficiaries with HC services received through the Kerala State PC Programme. Measuring patients’ satisfaction provides insightful data on patient’s service experience, identifies underlying issues, assesses the performance of the HC team, and acts as a source of motivation for those who deliver the service.^[14-16] In the present study, 69.1% of the patients are satisfied with HC services. This is comparatively lower than the satisfaction level reported in Bangladesh.^[11,17,18] The operational definition used in this study was more stringent than those employed in other studies in terms of the availability of medicines and rehabilitation services. This may be one of the reasons leading to the lower reported satisfaction level. The majority of patients showed satisfaction with HC services, which is consistent with earlier research pointing to greater patient satisfaction with HC compared to traditional healthcare.^[19]

Similar to a study conducted in Norway, this study could not find any statistically significant association between sociodemographic features and satisfaction.^[20] However, we found that the majority of the beneficiaries of the HC programme were elderly, unemployed, and belonged to poor socioeconomic status. Males were found to be more satisfied with PC services. This contrasted with the study by Asthana et al. and Balasubramanian et al., which reported higher satisfaction levels in females.^[21,22] The findings that individuals from poor socioeconomic backgrounds exhibited higher satisfaction with the services are encouraging. This is particularly important as earlier research indicates that socioeconomically disadvantaged individuals are disproportionately impacted by limited access to PC. Furthermore, previous studies showed that those from lower socioeconomic classes are more likely to lack an informal caregiver.^[23]

One of the principal functions of PC is the prevention and control of distressing symptoms.^[24] A structured method of symptom assessment is necessary for efficient PC service delivery because the identification and management of symptoms are very important for improving the QoL of patients. Similar to Biswas et al., beneficiaries who reported higher satisfaction levels were those with better symptom control from the HC team.^[11] Patients who underwent procedures such as catheterisation, stoma care, and wound care, as well as those who had their BP or blood sugar checked, expressed significantly higher satisfaction.

Ideally, the PC team is a multidisciplinary team addressing various concerns that are associated with illnesses.^[10] Kerala is the only state where PT is offered as part of the PC program. A physical therapist visits patients’ homes on a monthly basis to deliver rehabilitation services tailored to their requirements. Even though the study found a statistically significant association between PT and satisfaction, increasing the number of PT sessions each month was one of the most pressing needs listed by the beneficiaries. This is because the fee for a home visit by a private physical therapist ranges from Rs. 500 to 800/session, which is unaffordable. Earlier studies showed that the availability of PT plays a key role in improving patient satisfaction.^[23,24]

The primary needs highlighted in the South African palliative HC team were similar to those in our study: supply of medicines at home and inclusion of doctor visits in HC.^[25] Given that the average age of study participants was above 65 years and a significant majority came from lower socioeconomic backgrounds, implementing these measures can be perceived as enhancing PC, consequently leading to improved patient satisfaction. According to Subramanian et al., individuals receiving PC exhibited unmet demands for financial assistance and drug supply.^[12]

The role of nurses was found to be fundamental to patient satisfaction.^[26] Studies reported that continuous interaction and communication are essential elements of patient satisfaction and recovery. According to Berman and Chutka, effective communication skills are essential to make patients feel appreciated and cared for. The allocation of sufficient time for talking and listening to patients ensures that patients are less stressed, more engaged, and well-adjusted.^[27] Respondents who have experienced humanistic interactions with PC nurses have reported higher psychological well-being in previous studies. In our study, patients were cared for by nurses who spent more time with them and listened to them. They kept cordial relationships with both patients and their families and reported higher levels of patient satisfaction than those cared for by other nurses. A study in Iran reported a statistically significant correlation between nurse behaviour and patient happiness. The nurse plays a pivotal role in the primary PC programme, contributing to the state’s remarkable achievements due to their positive attitude and amiable approach.^[27] Therefore, if any state or country hopes to increase the standard of its PC initiatives, it is imperative to develop nurses with empathy, professionalism, and communication skills.

CONCLUSION

• The overall satisfaction with the government’s primary PC programme was 69.1%. Patients belonging to poor socioeconomic status reported higher satisfaction, but a significant association has not been found.

• The beneficiaries were satisfied with procedural care, blood glucose/pressure check and PT and found a statistically significant association.

• The study also found a significant association between satisfaction and nurse’s communication skills, listening behaviour and time spent by the nurses.

• The findings highlight the need to expand the provision of medicine distribution to patients at their homes and the scope of rehabilitation services.

• The study findings were used during the preparation of an action plan for Kerala state PC policy 2019, and steps were taken to ensure the distribution of medicines at home and the inclusion of doctor’s visit in HC for the patients who are in need.

• The main requirements reported by the beneficiaries were communicated on a real-time basis to the Principal Secretary (Health), Government of Kerala and the Ministry of Health to take corrective actions.