Evaluation of Home Care Services of Palliative Care Programme in

Malappuram & Kozhikode Districts

Jyolsna Anand U

Dissertation submitted in partial fulfilment of the requirement for the award of the degree of

Master of Public Health

Achutha Menon Centre for Health Science Studies

Sree Chitra Tirunal for Medical Sciences and Technology

Thiruvananthapuam, Kerala

India

October 2012

Certificate

I hereby certify that the work embodied in this dissertation entitled Evaluation of

Home Care Services of Palliative Care Programme in Malappuram & Kozhikode Districts

is a bonafide record of original research work undertaken by Miss. Jyolsna Anand U, in

partial fulfilment of the requirement for the award of the Master of Public Health

degree under my guidance and supervision.

Dr Kannan Srinivasan, PhD

Associate Professor,

Achutha Menon Centre for Health Science Studies (AMCHSS)

Sree chitra Tirunal Institute for Medical Science and Technology (SCTIMST)

Thiruvananthapuram, Kerala

October 2012

Declaration

I hereby certify that the work embodied in this dissertation entitled Evaluation of

Home Care Services of Palliative Care Programme in Malappuram & Kozhikode Districts

is the result of original research and has not been submitted for any degree in any other

university or institution

Thiruvananthapuram Jyolsna Anand U

October 2012

Acknowledgements

I would like to thank the Almighty for guiding me through and my father and mother for their

sincere support and love throughout my study.

Working under the guidance of Dr Kannan Srinivasan, Associate Professor, AMCHSS was

truly my privilege. Sir was always there to guide me and appropriately channelize my

research work. I pay my heartfelt gratitude to Dr Kannan Srinivasan for his expert guidance

and support throughout the dissertation despite his very busy schedule.

I also thank my field assistant Mr George Mathew for his hard work, enthusiasm and

sincerity during the data collection process.

I thank Dr Thankappan, Dr V Raman Kutty, Dr Sankara Sarma, Dr Sundari

Ravindran, Dr Mala Ramanathan, Dr Biju Soman, Dr Manju Nair, Dr Ravi Prasad

Varma and Dr Jissa faculty at AMCHSS for their valuable inputs.

I would also thank Dr Suresh Kumar for his guidance and support.

Last but not the least I thank all the people who chose to participate in this study. They were

so wonderful and without their boundless help my study would have never been completed.

Jyolsna Anand U

Table of contents

List of Figures

List of Tables

List of Abbreviations

Abstract

CHAPTER No. PAGE No.

Chapter 1 Introduction and Review of Literature : 1-13

1.1 Definition : 1

1.1.1 Palliative care : 1

1.1.2 Home care : 1

1.2 Background : 1-3

1.2.1 World : 1-2

1.2.2 India : 2-3

1.2.3 Kerala : 3

1.3 ArogyaKeralam Palliative Home Care Programme : 4-5

1.4 Role of Local Self Government Institutions : 5-6

1.5 Method of Evaluation : 6-

1.5.1 Beneficiary : 8-9

1.5.2 Service provider : 9-10

1.5.3 Administrative stakeholders : 10

1.6 Major Service gaps identified : 11

1.7 Major improvements suggested from evaluation studies : 11

1.8 Problems of palliative care service evaluation : 11

1.9 Major variables identified from previous studies : 12

1.10 Rationale : 13

Chapter 2 Methodology : 14-21

2.1 Study design : 14

2.2 Home care evaluation framework : 14-15

2.3 In-depth interview : 15-16

2.3.1 Study setting : 15

2.3.2 Sample size and Sampling : 15-16

2.3.3 Data collection and storage : 16

2.3.4 Data analysis : 16

2.3.5 Reporting of the results : 16

2.4 Structures questionnaire survey : 16-18

2.4.1 Study setting : 16

2.4.2 Sample Size and sampling : 16-17

2.4.3 Data collection : 17

2.4.4 Data collection tool : 17

2.4.5 Variables used : 17

2.4.6 Data analysis : 18

2.5 Structured interview schedule : 18-

2.5.1 Study setting : 18

2.5.2 Sample size and Sampling : 18

2.5.3 Data collection tools : 19

2.5.4 Data collection and analysis : 19-20

2.6 Triangulation : 20

2.7 Ethical considerations : 20-21

2.8 Staffing and work plan : 21

Chapter 3 Results :22-43

3.1 The assessment of various aspects of project implementation : 22-28

in the panchayat from the key informant perspective

3.1.2 Report of In-depth interview : 23-28

3.1.2.1 Attitude and awareness about the project : 23-25

3.1.2.2 The project planning and implementation : 25-27

3.1.2.3 Agendas used by the key actors in project implementation : 27

3.1.2.4 Major problems of implementation : 27-28

3.2 The assessment of various aspects of service delivery among service : 28-35

providers

3.2.1 Socio demographic characteristics of service providers : 28-29

3.2.2 Service delivery aspects : 29-35

3.3 The assessment of beneficiary satisfaction towards the home care programme: 35-

3.3.1 Basic socio demographic characteristics of participants : 35-38

3.3.2 Beneficiary Satisfaction to care and analysis : 38-41

3.4 Triangulation : 41-43

Chapter 4 Discussion :44-

4.1 The management and administration of panchayat home care project :44

4.2 Service delivery : 45

4.3 Beneficiary satisfaction : 46

4.4 Policy challenges : 46

4.5 Strengths of the Study : 46

4.6 limitations of the study : 47

4.7 Policy Recommendations : 47-48

4.7 Conclusion :48

References

ANNEXURE I

ANNEXURE II

ANNEXURE III

ANNEXURE IV

ANNEXURE V

ANNEXURE VI

ANNEXURE VII

ANNEXURE VIII

ANNEXURE IX

List of Figures

Fig. 2.1 : Home Care Evaluation Framework

List of Tables

Table 2.1 : List of independent variables used

Table 3.1 : Age and sex distribution

Table 3.2 : Designation and education

Table 3.3 : Experience in this home care programme and previous experience in

managing any health programme

Table 3.4 : Programme management committee (PMC)

Table 3.5 : Age, Education and Marital status

Table 3.6 : Nursing experience and years of experience in home care programme

Table 3.7 : Panchayat home care and other organization home care

Table 3.8 : The panchayat palliative home care training

Table 3.9 : The providers response towards the programme

Table 3.10 : The field visit

Table 3.11 : Additional services asked by the beneficiaries

Table 3.12 : The services provided

Table 3.13 : The home care team constitution

Table 3.14 : The use of personal protective equipments

Table 3.15 : The areas to be improved according to service providers

Table 3.16 : Age and Sex

Table 3.17 : Marital status and education

Table 3.18 : Mobility and Income of Patient

Table 3.19 : Diagnosis

Table 3.20 : Duration of illness

Table 3.21 : Enrolment duration and home care team visit frequency

Table 3.22 : Change in the hospital visit and medicine expenses after the initiation

of panchayat home care

Table 3.23 : Change in the mental stress and other expenses after the initiation of

panchayat home care

Table 3.24 : Change in the availability of emergency care and doctor visit after the

initiation of home care programme

Table 3.25 : Outcome variable: Satisfaction to care

Table 3.26 : Bivariate and multivariate analysis: correlates of dissatisfaction about

general satisfaction

List of Abbreviations

PHC : Primary Health Centre

PMC : Programme Management Committee

NGO : Non Governmental Organizations

LSGI : Local Self Government Institutions

NRHM : National Rural Health Mission

PPCS : Pain and Palliative Care Society

ABSTRACT

Background

The government of Kerala has formulated a palliative care policy for the state in 2008. In

tune with this policy in the same year the NRHM launched a palliative home care programme

in the panchayat with the help of LSGI. This study is an attempt to evaluate the LSGI led

home care programme by (a) assessing the various aspects of programme implementation, (b)

assessing various aspects of service delivery, (c) understand the level of beneficiary

satisfaction towards the programme.

Methods

It was mixed method study with three components. Eight in-depth interview of the key

informant of the panchayat, questionnaire survey of 30 service providers and a community

based cross-sectional survey of 250 registered beneficiaries of the programme in Malappuram

and Kozhikode districts of Kerala. The quantitative part of the study was entered and

analysis in SPSS and the in-depth interview was analysed manually.

Results

The level of satisfaction of the beneficiaries towards the service delivered is high. Hundred

percent of the beneficiaries are satisfied about the interpersonal relations and communication

skills of the home care team. Ninety eight percent of the beneficiaries are satisfied about the

amount of time spent with them by the service provider and 95 percent of them are satisfied

about the technical quality of the services delivered. Majority of the beneficiaries, about 61

percent of them were dissatisfied regarding one component of the overall beneficiary

satisfaction. The general satisfaction measured the adequacy, completeness, excellence and

need for improvement of the services delivered through the home care. The non availability

of medicines (OR 8, 95% CI .9 - 5) and the non reduction in medical expenditures even after

the initiation of the home care programme were highly associated with the dissatisfaction to

care (OR 2.7, 95% CI .3 - 10). The key informants and service providers were highly

agreeing with this finding with most of them reporting non availability of drugs and supplies.

Conclusion

The home care programme led by the panchayat is successful in identifying the neediest

beneficiaries of the community. The home care programme is accessible and regular with

enough man power in terms of home care nurse. But the programme was unsuccessful in

providing adequate and complete service to the beneficiary. The panchayat home care

programme was unsuccessful in attracting the participation of community volunteers and

other nongovernmental organizations interested in home care. The programme also has

inadequate training for the service providers. The key decision makers of the panchayat were

not aware about the implementation guidelines proposed by the government for the home

care programme.

1

CHAPTER 1

INTRODUCTION

1.1 DEFINITION

1.1.1 Palliative care

The palliative care defined by the World health organization in 2002 is an approach that

improves the quality of life of patients and their families facing the problems associated with

life-threatening illness, through the prevention and relief of suffering by means of early

identification and impeccable assessment and treatment of pain and other problems, physical,

psychosocial and spiritual1.

1.1.2 Home care

Home care is defined by WHO as the provision of health services by formal and informal

caregivers in the home in order to promote, restore and maintain a persons maximum level

of comfort, function and health including care towards a dignified death2

1.2 BACKGROUND

1.2.1 World

The development of palliative care took place globally by the second part of the 20th

century and was mainly due to the rising marginalization and medicalisation of the dying

patients within the health service structure3. Till 1950, only the cure aspects of cancer patients

were taken care and the dying patients were totally ignored and left behind by the social and

professional community. Since 1950, many research articles on various aspects of the needs

and care of the dying population started coming up and was slowly debated for about 17

years when in 1967, Dr Cicely Saunders, who unceasingly propagated the message constant

pain needs constant control started the worlds first initiative of modern hospice care in

United Kingdom named St Christophers Hospice. The story of success of this hospice

2

started disseminating further since 1970s which saw slow but constant developments and

breakthrough milestones in the development of palliative care globally.

The first international conference on the care of terminally ill was held in Canada in

1976 and the palliative medicine was recognised as a speciality in 2000. The first

international summit on palliative care development took place in Hague in 2003 and

subsequently in Seoul, Nairobi and Vienna in the years 2005, 2007 & 2009 respectively

which created an alliance worldwide on palliative care4 .In the mean time a huge array of

linked services found its way out into the main stream of palliative care which are the home

care, hospital based care, hospice at home care & day care4. The first ever research unit for

analysis and improvement of palliative care across the world was established in 2003 and was

named as the International Observatory on End of Life Care (IOELC) which studied the

global growth of palliative care and published a global mapping describing the stages of

development of palliative care initiative worldwide from among the 234 countries of the six

continents. The map says that 33 percent of the countries have absolutely no activity related

to palliative care, 34 percent of the countries across the globe has localised provision of

palliative care, 18 percent has capacity development and 15 percent of the countries have

started integration.5

1.2.2 India

The National Cancer Control Programme (NCCP) was started in India in 19756 and

amended in 1984, but failed to get implemented well enough .The country still lack a

National Palliative Care Policy7.

The pioneering, piloting and development of palliative care in India is believed to

have initiated from Kerala in 1986. Following this, there were many similar kind of care

delivery being initiated in various parts of India8. The state of Delhi holds above 6500

3

patients needing palliative care9 and has 1 palliative clinic, 2 home care teams and an NGO

named CANsupport, which is the first home based care in North India. According to a study

which tried to review the services existing in India in the field of palliative care, 16 out of 35

states/union territories were having palliative care programme or a hospice. But the study also

pointed out that these services were concentrated in the developed cities in all states except

Kerala.10

1.2.3 Kerala

In 1993, the pain and palliative care society (PPCS) was started in northern Kerala

with the support of a medical college. This PPCS clinic offered pain relief and comfort to the

sufferers of chronic disease. This clinic had only a small component of home care along with

its regular out- patient service which was later recognized to be inadequate to cover the needy

people of the community. The Neighbourhood Network in Palliative Care (NNPC) was

started in 2001, to effectively reach out to the needy as well as to work outside the biomedical

realm of disease which was later called the community initiative in palliative care. The focus

theme of NNPC was community ownership and hence it grew and flourished in the whole of

Kerala and especially in north of Kerala with about 230 clinics, more than 200 trained

professionals and most importantly above 10,000 trained community volunteers. The service

was delivered in four spectrums namely medical, nursing, psychological & spiritual care

along with the free provision of drugs, training programmes for family members and

community based social support strategies11

. Owing to the relative importance placed on this

palliative service by the public, the Government of Kerala, in 2008 declared the state policy

on palliative care, thus being the first initiative of its kind in the whole of India, aiming to

render palliative care to all those who are in need Kerala with home care as its core tenet

wherein the home care team of specially trained doctors, nurses & volunteers provide need

based care at the patients residence12

4

1.3 Arogyakeralam Palliative Home Care Programme

The National Rural Health Mission (NRHM) has started a palliative care programme in

the state of Kerala and this is the only state in India where NRHM has a palliative project.

This also commenced in 2008 after the declaration of state palliative care policy with the

objective of implementing the policy in Kerala. The main objective was to put home care

programme with any other Primary Health Care system facilitated by the Local Self

Government Departments (LSGD) and maintaining active interaction with the already

developing Non-Governmental Organizations (NGO) providing palliative care in the

community. The programme started in August 2008 with the intension to reach out and cater

to the needs of an estimated 1.25 lakh chronically ill and bed ridden patients of Kerala and

Institute of Palliative Medicine (IPM), Calicut was the implementing agency 13

. The

Department of Health & Family Welfare of the state formulated a government order and

issued circular having the guidelines for implementation for LSGIs asking them to take up

the palliative care activities14

, The programme was inspired from the successful functioning

of Neighbourhood Network in Palliative Care (NNPC)6. Since the state already had

successfully functioning community owned home care services at various stages of

development, the project divided the districts into 4 groups based on the level of development

of the community initiative. This categorization had Malappuram as the Group 1, the only

district having an already existing well developed palliative community initiative and

Kozhikode as Group 2, the only district having the community initiative integrating with the

Local Self Government (LSG) programmes and hence the Arogyakeralam project was

initially piloted in these two districts13

.

5

The Arogyakeralam palliative care project is continuously functioning in the state

since last 4 years and no more remains a new concept and hence it is time to critically look at

the programme to see if the objectives are met. The project which runs in tune with the state

policy functions in three levels

(1) Primary Level, basic home care and support

(2) Secondary Level, speciality palliative care services

(3) Tertiary Level, advanced care, training and research activities12

This study is an attempt to comprehensively analyse the Primary Level-The HOME

CARE, component of this ongoing programme and suggest any modifications based on the

findings. This dissertation looks at the programme in Malappuram and Kozhikode districts of

the state. The programme was named PARIRAKSHA in Malappuram.

1.4 Roles of Local Self Government Institutions/Departments (LSGI/LSGD)

The local self government departments have the central role in the implementation of

the programme. The government circular issued to them gives the guidelines for

implementation. The programme has to be implemented with the active support of the

Primary Health Centre (PHC). The basic functions of the LSGI in this project can be divided

in to two phases

(a) The preparatory phase

During this phase the project for 1 year has to be prepared. The formulation of project

management committee (PMC ), identification of significant nongovernmental agencies,

arrangement for the basic training in palliative care for all the active members of the

programme

6

(b) The active home care phase

This phase include facilitation of patient identification, initial home visits for

assessments, regular home care visits for the final shortlisted set of patients, arrangements for

special out patients days in the PHC with the collaboration of the health department,

provision of materials & equipments like drugs, home care kit and other support systems like

water bed, wheel chair etc. The funding for the palliative project was to be accommodated in

the plan fund/untied fund of panchayat and from the local fund collection. The corner stone

of the project in this phase is the home care with a team of home care nurse, health standing

committee member, panchayat member, health standing committee member and volunteers.

The home care should be conducted full day and should see at least 8 patients per day.

The number of home care can be decided by the panhayat according to the target population.

The nurse should assess the patient and decide necessary care for the patient. The PHC

medical officer should be kept informed about the care delivered to individual patients and

necessary advice should be sought from him in case of need. The home care should provide

holistic care to the patient which includes basic hygienic needs, dressing, assistance in

activities of daily living, catheter change and care, bed sore prevention & care, naso-gastric

tube insertion, feeding and care, bladder wash, intra venous infusions in case of emergency,

bowel and bladder care including catheterization and catheter care, enema, digital rectal

evacuation, bladder wash, health education etc14

1.5 Methods of Evaluation

There have been a multitude of tools developed for the purpose of palliative care

evaluation due to the different and difficult aspects of the components of palliative care

services including the nature of the patient population wherein the measure of outcome is

expected to measure the physical, psychological, social and existential dimensions of care15

.

7

The major approach used for the comprehensive evaluation of the palliative care services is a

method of corporate need assessment16

. This corporate approach has been proved to be the

most suitable approach for use in palliative care service evaluation and many studies have

adopted similar approaches17-19

. The major evaluation methods so far consisted of majorly

four components,

a) Identifying the services available: This majorly includes the collection of information

about the agencies/providers delivering the care for the people with terminal illness and also

their care givers. Also this includes the review of the documentation regarding the same as

well as the data on the usage of services over the past year.

b) The concerned beneficiaries and their care givers: An interview or any other data

collection from the care receiving person and their immediate care giver helps us to

understand their perceptions of need and the extent to which those perceived needs are

satisfied by the services provided.

c) The concerned Stakeholders of the palliative home care programme: An interview

with the concerned stakeholder helps to identify the existing inadequacies of specific services

and the gaps in the service so far delivered.

d) The care providing health personnel: The data collection from the care providers will

enable the evaluation programme to enlist the service usage, list out the perceived

inadequacies and specific gaps of the programme18

.

Most of the service evaluation studies are always very short time bound, with an

average time for completion of evaluation being four months. This is because the

organization or the government asking for the report needs the report in a time feasible to

influence policy or planning decisions and within the limited financial resources to support

the programme20

8

It is said that the mix of both qualitative and qualitative research methodology may enrich the

conclusions and more efficiently guide the palliative care practice21

. When a holistic

understanding of the palliative care situation is required this mix method approach is

suitable 17

.

1.5.1 Beneficiary

Incorporating the viewpoints of the service users is found to be the central point in the

assessment of the quality of the services that the patients receive22

. The involvement of the

user and the participation of the patient are viewed as the highest priority in the political

agenda as well as the philosophy of palliative care23

. Despite the before mentioned

importance which have been placed for the user views, the literature evidence evaluating the

experience of the terminally ill and the dying patients constitutes only one percent of the

whole volume of the palliative care research studies on just patient satisfaction alone24

. Most

of the studies looking at patient views used interview as a tool, for data collection at the time

when they are in receipt of services25

.

Multitude of studies has shown that the dying patients value immensely the factors

like autonomy, spiritual guidance, psychosocial support, and symptom relief along with the

active participation and support of their families26, 27

. Patient satisfaction has been extensively

studied in palliative care to assess the quality of care services 28

. Results from the satisfaction

survey have the ability to be among the influencing factors to assess service structure,

development and financial support 29

. Satisfaction interview schedule which ask more direct

questions and hence have the potential to elicit the result with less number of questions are

found to be more suitable in palliative care with unwell and frail patients 30

. The next

common way of assessing satisfaction is the use of questionnaire/interview schedule 31

.

Provision of information during care delivery is found to be a very important factor

associated with the satisfaction of care 32-35

.

9

Study by Beresford et al has stressed on the fact that all users of the service wants to

be a part of their therapeutic schedule and also want to actively contribute to the

improvement of the quality of services 36

. Patients may feel deprived of their self control

because of various uncertainties associated with their disease progression or recurrence,

choice curtailment regarding the treatment regimen and also the unequal power equation with

the health professionals 37

. It is hence vary important and crucial while planning and

implementing an evaluation of the palliative care service to have included the factor that the

patients are able to significantly influence the decisions of their own care 38

. It was also found

that patients and family exhibit higher levels of satisfaction when they receive a larger level

of understanding about the status of the patient, the treatment modalities planned for the

patient, the services available for them and the benefits they are entitled to 39

.Another

component found to have an effect on the satisfaction is staff competence. Many studies have

found that the capability of the nursing staff to get the patient out of stress and being very

supportive as important determinants of patient satisfaction 40

. The extent to which the family

is involved in the treatment and care of the patient is a significant factor of patient satisfaction

41. Respect for the needs and preferences of the patient as well as being sensitive to the non

medical aspects of care are found to be very important to the palliative care patients 42

.

1.5.2 Service provider

One of the major factors enabling the carers to help maintain their relatives spend their

last days at home is the availability and assistance of the professionally qualified persons 43

.

There is a shortage of literature focusing on the service provider perspectives 44

.The major

component stressed by the service provider was the strengthening of staff education 45

.

Majority of the studies used the help of questionnaire to collect data from the care

providers.46

Regarding the perspectives of the service providers including the physicians and

the nurses, there is a very significant gap in the literature thus letting the system be

10

compromised in its implementation due to lack of evidence based data 21

. Many respondents

asked for improved formal mechanism to support the palliative care staff 47

. Provider

characteristics are an excellent indicator of the community readiness for implementing an

integrated palliative care 48

. Another factor deciding the optimal service delivery is the

professionalism, the interpersonal style which will greatly enable the service provider to work

together 49

.

Shared decision making is another factor influencing the effectiveness of service delivery.

Job satisfaction accompanied by a favourable work environment is another predictor of

provider commitment to their role . Perceived independence is a very important component

for the service delivery in a network community care project. The next fundamental

characteristic of provider efficiency in various aspects of service delivery is 'speciality

training' .The total time spent as a palliative care provider is another aspect which strongly

depicts the service delivery effectiveness. One factor which pervades all levels of service

provider work range is communication. Programmes that foster group interaction skills as

well as patient interaction skills are proven to be valuable 50

.

1.5.3 Administrative Stakeholders

The stakeholder interview is important in evaluating a programme so as to get an overall idea

about the implementation of the programme, the gaps in the service provision and the

potential improvements to the service.51

To assimilate views of multiple stakeholders is a rich

source of needs from different perspectives which enable us to triangulate the responses 52

.

Interviewing stakeholders is one of the fast and simple ways to procure considerable amount

of data 51

. The stakeholder provides information about the previous failures of the programme

and suggests previously used solution strategies. The key stakeholder is one person who

knows about the cultural appropriateness of the programme 53

.

11

1.6 Major Service Gaps Identified From Various Evaluation Studies

Lack of comprehensive care services

Lack of adequate communication between the health professionals

Lack of motivation

Lack of adequate training

Lack of communication skills

Inadequate staffing

1.7 Major Improvements Suggested From Various Evalaution Studies

Improvement in the collaboration between various service providers

Improvement in the access to the doctor & specialist care

Improvement in the education & training for the grass root level care provider

Improvement in the availably and accessibility to better equipments

Provision of the round the clock services18

1.8 Problems of Palliative Care Service Evaluation

The major problems and issues of palliative care service evaluation studies are

attrition due to early death, opposition to randomization by patients and referral sources,

ethical problems raised by randomization of dying patients, difficulties of collecting data

from sick or exhausted patients and care givers. The preferable methods of service evaluation

are qualitative studies, interviews, surveys, audits etc. The least preferred and impractical

method of palliative care service evaluation is randomized control trial 54

.

12

1.9 The Major Variables Identified From Various Studies

1. Diagnosis

Percentage of patients with each specific diagnosis, Geographic distribution, Age profile,

Place of treatment, Social status for example: living alone, Clinical data (phase of illness,

mobility)

2. Service model

Percentage distribution of inpatient & outpatient services, Number, distribution & role of

specialist in the services, inter departmental linkages, After hour care arrangements, Role of

volunteers & community agencies

3. Staff profile

Medical, nursing, allied health, Bereavement, Volunteers, Pastoral care

4. Funding

Direct, Indirect

5. Quality

Quality assurance programme, accreditation, Accessible data for evaluation55

The present study is not a post mortem examination of the project, but an evaluation

of the ongoing programme to identify the level of its achievement of the proposed objectives.

Based on much literature evidence, the final variables for the evaluation of this project

emerged to be

1) Assessment of various aspects of project implementation in the panchayat from the key

informant perspective

2) Assessment of various aspects of service delivery among the service providers

3) Assessment of level of satisfaction among the beneficiaries towards the home care

programme

13

1.10 Rationale

The impact evaluation of the palliative care services on various factors such as the quality of

life of the beneficiaries, caregivers stress, and other aspects of care is an essential aspect of

programme evaluation. The impact evaluation of palliative care services is difficult and hence

often requires use of multiple methods of evaluation 56

. Studying and evaluating the palliative

care delivery services at the local level with the active objective of finding the gaps in the

services delivered for patients is considered to be the major milestone in the development of

the programme enabling the beneficiaries to have a peaceful death at their own residence

which is well supported. When the research evidence on palliative care needs of chronically

ill who are enrolled in an ongoing programme remains low, the scant emerging evaluation

studies show that they still share a multitude of unaddressed needs 57

. The evaluation of

current unmet needs along with the level of satisfaction of the patients to the programme has

been found to be the most used method for evaluating an ongoing palliative home based

care 58-60

.

Kerala is estimated to have about one and a half lakh bedridden and incurably ill patients12

.

As they become more debilitated and poor, their access to health care decreases, often at the

time they need it the most. A comprehensive home care program run by the Local Self

Government Institutions (LSGI), for the chronically and incurably ill patients including the

elderly, confined to their houses or unable to afford medical care, was initiated in

Malappuram district in August 2007 and later implemented state-wide under the

Arogyakeralam project of NRHM14

. There has not been any evaluation done for this

programme after four years of implementation and hence this study aims at evaluating this

home care programme.

14

CHAPTER 2

METHODOLOGY

The methodology used here is triangulation. As explained in the previous

chapter, based on the findings a mix method is used here. The three components of evaluation

used 3 different methods of data collection.

1) Various aspects of project implementation in the panchayat from the key informant

perspective

2) Aspects of service delivery using structured questionnaire

3) Beneficiary satisfaction using pre tested structured interview schedule.

2.1 Study design: The study design is a combination of both explanatory and exploratory

methods. The study includes a cross sectional interview schedule and questionnaire survey

and qualitative research method, in-depth interview.

2.2 The home care evaluation framework

The proposed framework for evaluation is a systems framework for evaluation. Each

component is a subsystem of the programme itself but is independent of each other because

the people involved are different. So the three components are to be evaluated separately.

Hence in this study, data on each component is collected differently in relation to the

independent role performed by each component. Each component is analysed separately and

is explained in the following framework.

15

Fig 2.1: Home care evaluation framework

2.3 In-depth interview

2.3.1 Study setting: This study was conducted the Malappuram & Kozhikode districts of

Kerala. There are 177 panchayats altogether in these panchayats implementing this

governmental palliative home care project. The respondents for the in-depth interview were

selected by purposive sampling. The most active Programme Management Committee

member of those panchayats were identified and selected for the interview. The concerned

person was contacted on phone and who ever willing was included for the interview. All the

eight members agreed to participate in the interview.

2.3.2 Sample size and Sampling: The sample size was eight. From the 177 panchayats of the

two districts 4 panchayats each from each district were selected. The sample size was limited

to eight because of the saturation in information and no new facts forthcoming.

16

a) Inclusion criteria

The key informants who are having a minimum of 1 year experience in managing the

home care programme

2.3.3 Data collection and storage: The data was collected after receiving a written consent

(ANNEXURE I) using a pre-designed interview guideline (ANNEXURE II) and the participant

information sheet (ANNEXURE III) was given to the participants. The participants were

interviewed in Malayalam and the time taken was 45 minutes. The interviews were digitally

recorded after receiving consent from the participants. All the recordings were transcribed

and translated by the researcher and stored safely with the principal investigator. It shall be

completely destroyed within one year of the submission of the study.

2.3.4 Data analysis: Themes were generated manually from the transcripts after coding and

recoding by the researcher. The interview guidelines were used as the framework for theme

generation.

2.3.5 Reporting the results: The results are reported under the themes and comments ae

given on each theme. The results are also used in the triangulation section.

2.4 Structured questionnaire survey

2.4.1 Study setting: The study was conducted in Malappuram and Kozhikode districts of

Kerala. Out of the 177 panchayats 30 panchayats 15 each from each district were selected by

simple random sampling.

2.4.2 Sample size and Sampling: The service provider of each panchayat, 1 home care nurse

was selected from all the 30 panchayats for the survey. The service providers from all the

selected panchayats were selected.

17

a) Inclusion criteria for the service providers

The home care nurse with a minimum of 6 months experience in the home care

programme

2.4.3 Data collection: The data collection was done with a pre tested questionnaire

(ANNEXURE IV). Thirty four service providers were contacted over the phone and 30 of them

were found to be eligible to participate in the study and all of them were willing to

participate. The privacy, confidentiality and convenience of the participants were taken care

of. The interview was conducted in the room allocated for the service provider at a time of

their convenience. The data collection was done only after receiving written informed

consent (ANNEXURE V) and the participant information sheet (ANNEXURE VI) was given to

the participants.

2.4.4 Data collection tool: The questionnaire survey was conducted using a structured pre

tested questionnaire developed by the researcher and it took 20 minutes to complete the

questionnaire. Review of the panchayat home care records was also done after the

questionnaire was handed over to the service provider. The questionnaire had questions

assessing the various aspects of the service delivery and was developed based on the circular

issued by the Government of Kerala to the Local Self Government Institutions (LSGI) which

is the base document providing the guidelines for the implementation of the palliative home

care project in the panchayat.

2.4.5 Variables used

Table 2.1: List of independent variables used

Socio demographic

variables

Service delivery related variables

Age, education, marital

status, experience in home

care programme, previous

nursing experience.

Other agencies providing home care, palliative care

training, over time (emergency call), PHC medical officer

help, additional services asked by the beneficiaries,

services provided, home care team constitution, use of

personal protective equipments, areas to be improved,

18

2.4.6 Data analysis

Simple frequencies were used to assess the various aspects of service delivery. The

assessment was done to identify what percent of the ideally proposed services are actually

being delivered.

2.5 Structured interview schedule

2.5.1 Study setting: Out of the 177 panchayats of Malappuram (100) & Kozhikode (77)

districts, 15 panchayats were randomly selected from each district (total 30 from both

panchayats). Total 21 blocks were included and within that 15 panchayats were selected

from each districts. Beneficiary listing of these 30 panchayats were done separately to create

the sampling frame of registered beneficiaries. Using these separate lists, 10 beneficiaries

panchayat were randomly selected for all 30 panchayats (300 beneficiaries) and data

collection was done for a total of 250 beneficieries.

2.5.2 Sample size and Sampling: Sample size calculation was done using openepi version

2.3.1.The prevalence of patient satisfaction to the pain and palliative care services in Kerala

was found to be 30%.The ample size estimated for the total population of 26550 registered

beneficiaries was 251, with a design effect of 2. Considering 20% non response rate, final

sample size was arrived at 301, which was rounded off to 300.

a. Inclusion criteria for beneficiaries

Beneficiaries who are enrolled in the programme for at least 1 year

b. Exclusion Criteria for the patient

Beneficiaries who are mentally ill patients

Beneficiaries who are cognitively impaired

Beneficiaries who are acutely ill and are unable to participate in the survey

19

2.5.3 Data collection tools

For the cross-sectional survey of the patients, the data was collected using a locally translated

and pre-tested structured interview schedule (ANNEXURE VII) which took not more than 40

minutes. This satisfaction scale was adopted and modified from the RAND Corporation

which is a non-profit institution helping in policy improvement and decision making through

research. The permission for adopting, modifying & translating the scale is obtained from

them. Written informed consent was obtained prior to the interview and the participant

information sheet was given to the participants.

2.5.4 Data collection and analysis

The data collection was carried out from 18th June to 28th August by the principal

Investigator and a field assistant at the residence of the patients. Out of the 351 beneficiaries

visited initially only 261 were found eligible to participate in the study. Ultimately 250

beneficiaries expressed interest to participate in the study. The response rate was 96.15

percent. Care was taken to ensure the privacy and confidentiality of the participants and their

households. Data collection was carried out only after obtaining the informed consent

(ANNEXURE VIII) and after giving the participant information sheet (ANNEXURE IX) to the

interviewee. Interview was conducted at the participant residence at a time of convenience of

the informant. The interview schedule was developed by adapting the Patient Satisfaction

Questionnaire (PSQ 3). The first section dealt with the socio-demographic details. The

second section consisted of 30 validated scale questions which assessed the level of

satisfaction among the beneficiaries. The questions assessed 5 major components of

beneficiary satisfaction named General Satisfaction (GSAT), Technical Quality (TECH),

Interpersonal Aspects (INTER), Communication (COMM) and Time spent with the patient

(TIME). GSAT had 6 questions (2, 6, 12, 17, 24, and 29) TECH had 10 questions (1, 4, 7, 9,

20

13, 16, 20, 23, 26 and 30) INTER had 7 questions (5, 10, 14, 15, 18, 22, 28) COMM had 5

questions (3, 8, 11, 21, 25) and TIME had 2 questions (19 and 27).

The scale were score on a 5 point scale and the scores for each component was calculated by

adding the individual scores of all the questions each component is comprised of.

Other independent variables at beneficiary level used are age, sex, marital status, education,

occupation, mobility, income, diagnosis and duration of diagnosis of the beneficiary. The

programme level independent variables used were enrolment duration, visit frequency,

changes in the medical expenditure, hospital visit, other expenditure, mental stress,

emergency care, medicine availability and level of knowledge about patient care. Data entry

and cleaning was done using SPSS 17 version. Descriptive analysis, bivariate analysis and

multivariate analysis was done to identify the significant relationship between predictor and

dependent variable.

2.6 Triangulation

After the finding and reporting the results of the study, a triangulation of the results from the

mixed method study was done. Some policy recommendations based on the results have also

been suggested.

2.7 Ethical considerations:-

Ethical clearance was obtained from Institute ethics committee (IEC) SCTIMST.

Participant information sheets were distributed to all individuals found to be eligible and

willing to participate in the study. Written informed consent was obtained from the

participant prior to the data collection and in situations where the participant were unable to

provide written consent but was willing for the study, verbal consent was obtained in the

presence and consent of a witness. No participant was persuaded into the study. It was clearly

explained before the start of the study that the participants have all the freedom to withdraw

from the study at any point. It was explained to the participants that no direct benefits will be

21

provided to them for participating in the study. The whole data collection was arranged

according to the convenience of the participants.

2.8 Staffing and work plan:-

Interviewing the beneficiaries with the structured schedule was done by the principal

investigator and the field assistants at the beneficiary residence. Only one field investigator

was present for the data collection. The field assistant was given a training regarding the

evaluation project. A training manual was prepared and was given to the field investigator.

Questionnaires were individually distributed to the home care nurses and were collected back

once they were filled. Record review was done by the investigator. The in-depth interviews

were done by the principal investigator.

Activity June July August September October

1 2 3 4 1 2 3 4 1 2 3 4 1 2 3 4 1 2 3 4

Pilot testing

Training of field

assistant

Data collection

Data entry

Data cleaning

and analysis

Report writing

22

CHAPTER 3

RESULTS

In this chapter the results based on the Home Care Evaluation Framework (refer page :)

discussed in chapter 2 is presented. First, the results of assessment of various aspects of

project implementation in the panchayat from the key informant perspective are discussed.

Next, the results of the assessment of various aspects of service delivery among the service

providers are described. Finally, the results of the assessment of level of satisfaction among

the beneficiaries towards the home care programme are presented. As a whole a triangulation

of the findings from the above mentioned aspects of the home care programme is also

presented.

3.1 The assessment of various aspects of project implementation in the panchayat from

the key informant perspective

The findings described below are from the 8 key informant in-depth interviews. The

interviews were conducted with a selected member of the programme management

committee (PMC) from 8 selected panchayats of Malappuram and Kozhikode districts. 3.1.1

Basic characteristics of the participants

Table 3.1 Age and sex distribution

Sex Age Total n (%)

38 41 46 49 57

Male - 1 1 1 1 4 (50)

Female 1 1 2 - - 4 (50)

Total n (%) 1 (12.5) 2 (25) 3 (37.5) 1 (12.5) 1 (12.5) 8 (100)

There were equal number of male and female participants and more than half of them

were aged above 45 years.

23

Table 3.2 Designation and education

Designation Education Total n (%)

SSLC + 2 University

Panchayat president 2 - 1 3 (37.5)

Health standing

committee chairman

- 2 - 2 (25)

Ward member 1 - 1 2 (25)

Municipal chairman - - 1 1 (12.5)

Total n (%) 3 (37.5) 2 (25) 3 (37.5) 8 (100)

There were panchayat presidents forming 38% of the sample and equal number of

ward members and health standing committee members and also one municipal chairman.

Table 3.3 Experience in this home care programme and previous experience in

managing any health programme

Previous experience in

any health programme

Experience in palliative home care

programme

Total n (%)

Less than 1 yr 1 2 yrs 2-3 yrs

Experienced - 1 - 1 (12.5)

Not experienced 2 4 1 7 (87.5)

Total n (%) 2 (25) 5 (62.5) 1 (12.5) 8 (100)

More than half of the participants had 2 years of experience in managing palliative

home care but about 88 percent of them had no previous experience in managing any health

programme.

3.1.2 Report of In-depth interview

The aim of the interview was to understand about the attitude and awareness about the

project, the project planning process and project implementation agendas practiced by the

PMC members who are the key actors influencing the decision making in the panchayat and

also identify their suggestion and recommendations to improve the project. The findings are

discussed below.

3.1.2.1 Attitude and awareness about the project

a) Perceived importance of the programme: About half of the participants perceive this

project as one of the important project among all other projects in their panchayats. They feel

that this programme contributes to the well being of the suffering people of the community

24

who are bed ridden for long time. They also said that anyone in the panchayat may fall ill

they feel that this project is designed not only for the bed ridden patients but also for every

member of the community. They also reported that they are well aware about the benefits of

the programme as they have had people in their own family receiving home care. They told

that this palliative care project gives satisfaction for them. The other half of the participants

said that despite the importance placed on this programme by the panchayat, the people in the

panchayat are still interested in the road development than palliative care and hence it is

difficult to place high priority for this programme.

b) Motivation: The participants reported different level of motivation regarding the

implementation of the palliative programme. Some of the participants were highly motivated

while the remaining were not that highly motivated towards the project implementation. The

participants who reported high motivation said that they are motivated to work hard and bring

this project to the main stream and make it a success. They devoted lot of time and energy on

this project thus devising a variety of creative and constructive implementation strategies

whereas the panchayats with least motivation did not devote any special time or effort for the

better implementation of the programme. They considered this project as any other initiative

of the government based on a strict government order.

c) Awareness about the project: Not even a single member of the PMC was aware about the

LSGI circular issued by the Government of Kerala which the base document is providing the

guidelines for the implementation of the project. No one had a copy of the circular with them.

(Fig.2) The circular aims to develop common bodies or platforms in the LSGIs to coordinate

the activities of all the private agencies providing home care services with the panchayat level

activities. The participants were unaware of this objective.

25

d) Training programme: The circular suggests organising special training programme for

the selected members of the home care team in the panchayat to provide accurate information

about the needs, objectives and implementation guidelines of the home care programme. This

was not fully achieved in any panchayats. The special training (BCCPAN) was provided only

for the home care nurse. No other member of the home care team has received any training.

No training programme has been arranged for the PHC medical officer and PHC staff about

palliative care. The ASHA who function as a volunteer in the team is also not given any

training. In an instance one health standing committee chairman quoted During our review

meeting our home care nurse said that the ASHA who come for home care dont know how

to talk to the patient, so she says things that are not right and patient and family gets a false

assurance about their disease condition.

3.1.2.2 The project planning and implementation

a) The PMC constitution and home care project development:

Table 3.4 Programme management committee (PMC)

Members ideally to be present in the PMC Members actually

present

Panchayat/municipality/corporation

president/chairperson/mayor

Health standing committee chairman and vice chairman

The representatives of the NGO working in the panchayat

premises

-

Two ward members

Community development society chairman

Two volunteers from the community with palliative care

training (not the elected representatives of the panchayat)

-

Medical officer

Home care nurse. -

The members of the PMC are the only decision makers for the project in the panchayat. The

entire process of project development and implementation is done by these members. All of

the panchayats had only the elected members of the ruling party as the members of the PMC.

26

The only outsider was the PHC medical officer who was the member secretary of the PMC.

All the panchayats thus lacked the presence of the community volunteer, who is the member

from the local community with palliative training, the palliative care nurse, and the

representatives from other private agencies (NGO,CBO,FBO) providing palliative home care

in the panchayat in the PMC.

b) Cooperation with other agencies: All the participants reported that their panchayat had at

least 1 NGO or CBO or FBO providing home care to the people. All the panchayats except

one had no cooperation with these agencies. They reported that the NGO home care team has

doctor, nurse and other facilities like medicines and dialysis support. The participants said

that it is difficult to cooperate with the private agencies. The circular (refer) aims to develop

common bodies or platforms in the LSGIs to coordinate the activities of all the private

agencies providing home care services with the panchayat level activities. This was not

achieved in most of the panchayats. They said that the cooperation with the private agencies

is not possible because those organizations have their own policies and motives which are

different from the panchayat project. They feel that there will be many disagreements in

opinion in the matters of power and money. They also explained that they are ready to

cooperate and function with any other governmental agencies but not with private

organizations.

The coordination with the PHC medical officer and staffs is only partially achieved

in most of the panchayats. The Keralas three tier governance system has transferred the

health care institutions till the district level to the LSGI. (kerala palliative care policy)All the

participants said that they are still confused about their role and power in implementing the

programme in the PHC. They said that there are difficulties in coordinating with the PHC

medical officer who is the implementing officer of the programme because the PHC medical

27

officer is directly responsible to the DMO and hence the programme is delayed at many

instances.

3.1.2.3 Agendas used by the key actors in project implementation

a) Fund raising: There were basically two types of funding sources in the panchayats for the

palliative home care programme. 1) The plan and own fund allocated to each panchayat by

the government. The LSGI is allowed to keep aside the money they require from the flexible

pool of the above mentioned funds. Half of the participants reported to use only the plan fund

for the project maintenances. 2) The plan fund and the money rose from the local community

collection. Another half of the participants explained about the innovative fund generation

practiced in their panchayats. The examples are described below. The panchayat printed

special palliative fund collection coupons and distributed it in the schools after giving a small

class about palliative care to the school. The panchayat president says We were amazed

when the principal of the school phoned us next day and asked for more coupons. There was

another method of money collection called the Bucket collection wherein the panchayat

members visits the localities and seek financial assistance using a bucket. They also

positioned collection boxes in front of the shops and other institutions such as cooperative

society, bank and so on. There were also instances where the employed section of the society

contributing their share every month. The religious, charitable and other organizations

affiliated to religious institutions also have contributed to the same.

3.1.2.4 Major problems of implementation

The one most prominent and obvious problem pointed out by all the participant is the non

provision of medicines and equipments by the Kerala Medical Supplies Cooperation Limited

(KMSCL). The rule in the state prevents the LSGIs from buying the necessary supplies and

28

equipments from outside KMSCL and KMSCL is supplying drugs and equipments with a

delay of 1 year or above.

The health standing committee chairman says we with great difficulty arrange for the money

and give the KMSCL the intent of medicines and equipments. But KMSCL is not giving us

the supplies on time. The project duration is only one year and the patients we have may not

even live up to that, so I feel that it is a crime not to provide medicines for this project on

time. This project should be looked into seriously and should not be taken for granted like

any other governmental programme.

3.2 The assessment of various aspects of service delivery among service providers

The assessment was done by structured questionnaire survey of 30 home care nurses of all 30

selected panchayats of Malappuram and Kozhikode districts. The aim was to understand the

various aspects of the service delivery within the panchayat home care programme. The

service providers provide the services in the grass root level and hence an assessment from

their perspective will help to identify the actual services delivered and the gaps and

inadequacies in the service provision.

3.2.1 Socio demographic characteristics of service providers

Table 3.6 Age, Education and Marital status

Education Age group Total n (%)

20 - 35 36 - 50

Married Others Married Others

Sslc 3 - 6 1 10 (33.3)

+2 1 - 15 - 16 (53.3)

University 3 1 - - 4 (13.4)

Total n (%) 7 (87.5) 1 (12.5) 21 (95.5) 1 (4.5) 30 (100)

All the service providers were females. 93 percent of them were married and 3/4th

of them

were in the age group of 36-50 years. About half of them were educated up to pre degree, 34

percent studied till SSLC and university education was very minimal.

29

Table 3.7 Nursing experience and years of experience in home care programme

Experience in the home

care programme

Have nursing

experience

Do not have

nursing experience

Total n (%)

Within 1 year 3 5 8 (26.6)

1-2 years 3 16 19 (63.3)

3 or more years 2 1 3 (10)

Total n (%) 8 (26.7) 22 (73.3) 30 (100)

Majority of the service providers have worked in the panchayat home care programme for

about 2 years. About three fourth of them are not professionally trained nurses, they only

have the 3 months training in Basic Certificate Course in Palliative Auxiliary Nursing

(BCCPAN).

3.2.2 Service delivery aspects

Table 3.8 Panchayat home care and other organization home care

Variables Frequency Percentage

Presence of NGO/FBO/CBO in the panchayat

Not present 3 10

One organization present 24 80

2 or more organization present 3 10

NGO cooperation

No cooperation 5 18.6

Formal arrangements made for cooperation 1 3.7

Informal arrangements made for cooperation 21 77.7

NGO providing medicine support (informal)

Not providing 6 22.2

Providing 21 77.8

NGO providing home visit support (informal)

Not providing 9 33.3

Providing 18 66.7

Difficult without NGO support

Not difficult 6 22.2

Difficult 21 77.8

More than 90 percent of the panchayats have at least one private organization providing home

care to the beneficiaries. More than 20 percent of the service providers said that there is no

cooperation between the panchayat home care and other agencies providing home care.

About 78 percent of the service providers also reported that they have made informal

arrangements with the nurse and doctor of the private organization home care team to get

30

some help in the time of emergency and also to manage drugs and supplies for those who

cannot afford. An attempt to make any formal coordination in activities was reported in less

than 4 percent of the panchayats. Three fourth of the service providers reported to be

receiving support informally as well as home visit support from nongovernmental

organizations who provide home care in their panchayat. About 80 percent of the service

providers reported that it will be very difficult to carry out the panchayat home care services

without the help of private organizations. The LSGI circular suggests the creation of a

common platform in the LSGI for the coordinated action of LSGI, NGO, FBO and CBO. The

data mentioned above suggests that this objective mentioned in the circular is not achieved in

any panchayats.

Table 3.9 The panchayat palliative home care training

Number of days trainings received during last

year

Total n

(%)

No training 1 3 days 4 6 days >6 days

Course material received

during training

1 1 2 2 6 (20)

Course material not

received during training

5 14 5 - 24 (80)

Total n (%) 6 (20) 15 (50) 7 (23.4) 2 (6.6) 30 (100)

All of the service providers received the Basic Certificate Course in Palliative

Auxiliary Nursing (BCCPAN) before starting the home care project. The continuing

educational programmes for the service providers are very less. The maximum percent of

service providers received training for a maximum of 3 days during the last one year. About

half of the service providers received a maximum of only 3 days training sessions during the

whole of last year and 80 percent of the service providers reported not to have received any

course material during the training programme. About 64 percent of the service providers

reported not to have seen the LSGI circular which is the guideline for implementation of

home care.

31

Table 3.10 The providers response towards the programme

Reason for opting the job of home care nurse Total n (%)

Job satisfaction Service

motive

Service motive

and job security

Unemployment

Satisfied with job 17 11 - 28 (98.3)

Not satisfied with job - - 2 2 (6.7)

Total n (%) 17 (56.8) 11 (36.6) 2 (6.6) 30 (100)

About 57 percent of the service providers opted for this job due to their interest in serving the

needy and just 7 percent of them opted this job due to unemployment. Almost 98 percent of

the service providers are very satisfied with this home care job and the remaining 7 percent

who are not satisfied with the job were the ones who opted this job due to unemployment.

Table 3.11 The field visit

Hours of field work Frequency Percentage

< 5 hours 2 6.7

5-8 hrs 28 93.3

Do over time (emergency calls)

No 10 33.3

Yes 20 66.7

Panchayat provides facility for overtime work

No 24 80

Yes 6 20

Support from PHC medical officer during home visit

No support given 23 76.7

Some support given 7 23.3

When no support is given what is done?

Take patient to PHC 1 4

Arrange help from NGO home care team 4 16

Ask family to take patient to hospital 20 80

According to 80 percent of the service providers the panchayat does not provide any facility

to go for overtime home care (emergency calls). The 67 percent of service providers who go

for emergency calls reported that the patients relatives bring the vehicle to the service

provider and then they go for emergency calls. More than three fourth of the service

providers reported that the PHC medical officer do not give them any support during home

care. They said that in such situations of emergency they ask relatives to take the beneficiary

to some hospital.

32

Table 3.12 Additional services asked by the beneficiaries

Additional service asked by the beneficiaries Frequency Percentage

Medicine support 29 96.7

Doctoral care 29 96.7

Financial support 17 56.7

Educational support 9 30

Blood sugar checking 27 90

Food support 23 76.6

Rehabilitation jobs for the care givers 20 67.7

Water bed/wheel chair 9 30

All the service providers reported that they do not receive all the items of the home care kit.

About 80 percent of them reported that the home care kit is not sufficiently and regularly

provided. They said that all the beneficiaries were asking for additional services. About 100

percent of beneficiaries were asking for doctoral care and medicine support, 77 percent

asking for food support and 68 percent of them asking for rehabilitation jobs for the care

givers and above 90 percent of the people were asking for blood sugar checkups during home

care.

These findings are in agreement with the information given by the key informants. The key

informants said that they are not receiving the medicines and other supplies from the KMSCL

on time. The service providers also have reported that they dont get the medicines and the

home care kit on time, regularly and sufficiently.

33

Table 3.13 The services provided

Health education given to beneficiaries and family Frequency percentage

Communication skills 6 20

Medication administration 30 100

Disease specific stigma reduction 18 60

Personal protection, preventive techniques & asepsis 3 10

Bed sore care 30 100

Wound dressing 30 100

Ryles tube feeding 20 66.6

Urinary catheter related procedures 30 100

Health education given to

Parents 5 16.7

Spouse 28 93.3

Children 22 73.3

Services provided

Psychological support 29 96.7

Social support 21 70

Follow up care 26 86.7

Referral services 6 20

Medicine provision 20 66.6

Doctoral care 8 26.6

Reduction in financial burden due to disease 26 86.6

Facilitate pension to the needy 22 73.3

Facilitating food and educational support 6 20

The health education on communication skills and personal protective techniques were

not provided by most of the service provides. Almost all of them said that they were able

to provide psychological support to the beneficiaries and more than three fourth of them

said that they also provided social support. About 90 percent said that due to this home

care programme some financial burden due to disease of the bed ridden beneficiaries was

partially reduced.

67% of the providers reported that the panchayat home care programme was not able to

provide enough medicines to the beneficiaries. The medicines which were available in the

PHC stock were the only medicines available. The beneficiaries or their relatives have to

come to the PHC to collect the medicines. All the service providers reported that

provision of the required medicines was not attained through this home care programme.

Also very minimal proportion of about 6 out of 30 service providers reported provision of

34

food and referral services through the home care project.

These findings are again in agreement with the findings of the key informant interview.

The key informants also said that since KMSCL is not providing medicines, the patients

are not receiving the necessary medicine support through the programme.

Table 3.14 The home care team constitution

Members attended the last home visit Frequency percentage

Health standing committee member 2 6.7

Ward member 5 16.5

Nurse 30 100

PHC field officer (JPHN or JHI) 10 33.3

Volunteer (ASHA ) 20 66.6

The findings discussed are again in agreement with the key informant interview results.

Only nurse was regular in going for every home care. In 68 percent of panchayats the

ASHA also attended the home care. All other members who are ideally supposed to go for

home care were having very minimal participation. The health standing committee

member and ward member hardly participated in any home care, and one third of the

panchayats had PHC staff participating in home care. It is important to note that the

participation of a community volunteer in the home visits was completely absent in all

panchayats. Half of the service providers reported that ASHAs help them while doing

any procedures.

Table 3.15 The use of personal protective equipments

Use of personal protective equipments Frequency percentage

Hand washing 30 100

Face mask 4 13.3

Gloves (sometimes) 28 93.3

Apron 0 0

Goggles 0 0

Cap 0 0

All the service providers practiced hand washing before and after doing procedures. All of

them reported to take the soap from the beneficiaries house to wash hands. 93 percent of

them said that they use gloves only while doing procedures like enema and catheterization.

Among the service providers very minimal percentage reported to be confident in giving

35

injections and they said that they dont use gloves while giving injections. Most of the

respondents reported that patients would feel uncomfortable if they use face mask and so they

dont use facemask. Twenty six percent of them said that during BCCPAN training they were

instructed not to use face mask in front of the beneficiaries. The Face mask was used by less

than one fourth of the respondents. Apron, gown & cap were not at all used.

Table 3.16 The areas to be improved according to service providers

Areas to be improved Frequency percentage

Training programme 30 100

Doctoral care 28 93.3

Home care kit 4 13.3

Job specification of home care team members 23 76.7

Man power 3 10

All the service providers equally said that the training programme they receive is

inadequate and need improvement. The other main areas requiring improvements from the

service provider perspectives are doctoral care and job responsibilities of the home care

team members. The job responsibilities of home care team members are not clearly

mentioned.

3.3 The assessment of beneficiary satisfaction towards the home care programme

3.3.1 Basic socio demographic characteristics of participants

Table 3.17 Age and Sex

Sex Age group Total n

(%)

< 45 45 54 55 64 65 74 75 84 >84

Male 25 16 29 39 14 8 131 (52.4)

Female 11 8 19 15 24 42 119 (47.5)

Total n

(%)

36 (14.4) 24 (9.6) 48 (19.2) 54 (21.6) 38 (15.2) 50 (20) 250 (100)

Above three fourth of the respondents were aged above 50 years. There were equal number of

males and females in the respondents.

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Table 3.18 Marital status and education

Marital

status

Educational status Total n (%)

None Elementary High school and above

Single 8 6 14 26 (10.4)

Married 50 68 23 141 (56.4)

Others 10 23 26 83 (33.2)

Total n

(%)

68 (27.2) 128 (51.2) 49 (19.6) 250 (100)

Above half of the beneficiaries were married and staying with their spouse and one fourth of

the beneficiaries were widowed or separated. About half of the participants had elementary

education and 27 percent were uneducated.

Table 3.19 Mobility and Income of Patient

Mobility Income of patient Total n (%)

< 2500 >2500

Bed bound 135 - 135 (54)

House bound 36 - 36 (14.4)

Mobile with assistance 45 - 45 (18)

Fully mobile 31 3 34 (13.6)

Total n (%) 247 (98.8) 3 (1.2) 250 (100)

54% of the sample was completely bed ridden and 14 percent were mobile. None of the

beneficiaries had any source of income.

Table 3.20 Diagnosis

Diagnosis Total n (%)

CVA 99 (39.6)

Elderly 64 (25.6)

Cancer 37 (14.8)

COPD 8 (3.2)

DM 47 (18.8)

Injury 22 (8.8)

Kidney disease 20 (8)

Others 13 (5.2)

40 percent of the beneficiaries had Ceribro Vascular Accident (CVA), 27 percent were

elderly, 15 percent had cancer, and 19 percent had diabetes.

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Table 3.21 Duration of illness

Duration of illness Total n (%)

10 yrs 18 (7.2)

Total n (%) 250 (100)

About three fourth of the beneficiaries were bed ridden for more than 3 years.

Table 3.21 Enrolment duration and home care team visit frequency

Enrolment

duration

Home care team visit frequency Total n

(%)

Monthly

once

Two monthly

once

Three

monthly once

Six monthly

once

< 1 year 143 22 15 - 180 (72)

1-2 years 48 7 9 3 67 (26.8)

>3 years 3 - - - 3 (1.2)

Total n (%) 194 (77.6) 29 (11.6) 24 (9.6) 3 (1.2) 250 (100)

Most of the beneficiaries were enrolled in the programme within 1 year. Seventy eight

percent of the participants were visited by the home care team at least once in a month. These

findings are in agreement with the results of the service provider survey in which 88 percent

of the service providers also reported about provision of good follow up care.

Table 3.22 Change in the hospital visit and medicine expenses after the initiation of

panchayat home care

Hospital visit Medicine expense Total n (%)

No medicine

expense

Some expense but

less than before

Remains

the same

No hospital stay 4 28 51 83 (33.2)

Some hospital stay

but less than before

4 74 29 107 (42.8)

Remains the same 2 9 49 60 (24)

Total n (%) 10 (4) 111 (44.4) 129 (51.6) 250 (100)

Seventy six percent of the beneficiaries reported reduction in the frequency of hospital visit

but fifty one percent of the participants reported no change in the medicine expense. These

findings again are in agreement with the findings of key informant interview and service

providers survey where both the respondents reported non availability of medicines.

38

Table 3.23 Change in the mental stress and other expenses after the initiation of

panchayat home care

Mental stress Other expense Total n (%)

No

expense

Some expense but

less than before

Remains

the same

No mental stress 2 168 23 193 (77.2)

Some mental stress

but less than before

1 8 35 44 (17.6)

Remains the same 1 6 6 13 (5.2)

Total n (%) 4 (1.6) 182 (72.8) 64 (25.6)

Among the total beneficiaries 77 percent reported complete reduction of mental stress. About

26 percent of the beneficiaries reported that the other expenses related to the disease have not

reduced even after the home care programme started. These findings are also in agreement

with the results of the key informant interview and the service provider survey in which also

both the participants reported that the most important service which is rendered by the home

care programme is reduction in mental stress of the beneficiaries.

Table 3.24 Change in the availability of emergency care and doctor visit after the

initiation of home care programme

Emergency care Doctoral visit Total n (%)

Doctor dont

come for visit

Doctor come for

visit

Fully available 1 1 2 (.8)

Partially available 5 4 9 (3.6)

Not at all available 236 3 239 (95.6)

Total n (%) 242 (96.8) 8 (3.2) 250 (100)

Ninety seven percent of the beneficiaries reported that doctor doesnt come for home care and

96 percent of the beneficiaries reported that they do not receive any emergency care by the

panchayat home care programme. These findings are in complete agreement with the results

of the key informant interview and the service provider survey. The PMC members during

the interview said that they are not able to make necessary arrangements for emergency care,

and 80 percent the service providers reported that the panchayat is not providing any

arrangements to go for emergency care.

3.3.2 Beneficiary Satisfaction to care

The main outcome variable of the beneficiary survey is satisfaction to care. The satisfaction

to care is divided into 5 components. This was assessed by adapting and modifying the

Patient Satisfaction Questionnaire 3 (PSQ 3). Each component of beneficiary satisfaction is

categorised into two groups, satisfied and not satisfied. This categorization was done by using

39

the middle score of each component of satisfaction as the cut-off point between satisfied and

not satisfied. The results are presented below.

Table 3.25 Beneficiary Satisfaction to care

Outcome variable Not satisfied n (%) Satisfied n (%)

General satisfaction 153 (61.2) 97 (38.8)

Technical quality 12 (4.8) 238 (95.2)

Interpersonal relation 0 250 (100)

Communication 0 250 (100)

Time spent 5 (2) 245 (98)

The beneficiary satisfaction to care has 5 sub components, General satisfaction,

Technical quality, Interpersonal relation, Communication and Time spent with the

beneficiary. Almost all the beneficiaries were satisfied about all the components of

beneficiary satisfaction except general satisfaction. The general satisfaction measures the

adequacy and completeness of the service and 61 percent of the beneficiaries reported that

they are not satisfied.

40

Table 3.26 Bivariate and multivariate analysis: correlates of dissatisfaction about

general satisfaction

General

satisfaction

Not

satisfied

N (%)

Satisfied

N (%)

Unadjusted

OR

P

value

Adjusted

OR

P

value

Home care team

visit frequency

Visit frequency

within 1 month

108 (55.7) 86 (44.3) 3.3 .001

Visit frequency

exceeds 1 month

45 (80.4) 11 (19.6)

Hospital stay

Reduced 107 (56.3) 83 (43.7) 2.5 .006

Not reduced 46 (76.7) 14 (23.3)

Medicine expense

Reduced 55 (45.5) 66 (54.5) 3.8

41

of medicine and follow up care, diagnosis of cancer and presence of other private agencies

providing home care have positive association with non satisfaction in the general satisfaction

component of beneficiary satisfaction.

The multivariate analysis was done using binary logistic regression to find out the

variables having most significant association with the non satisfaction in the general

satisfaction of beneficiary satisfaction. According to the multivariate model (table 3.26), the

beneficiaries who had no reduction in medical expenditure and those who did not receive

medicines through this home care were highly dissatisfied with the general satisfaction

component of the beneficiary satisfaction.

3.4 Triangulation

The panchayat home care programme in the two districts of Kerala was evaluated in this

study using the Home Care Evaluation framework. (Fig:2). This framework evaluated the

programme from three different perspectives of the three stakeholders of the programme, the

beneficiary, the service provider and the members of the PMC the key decision makers. In

this section triangulation of the findings from the structured interview schedule, questionnaire

and in-depth interview are described.

a) In-depth interview of the key informants (PMC members)

The motivation of the PMC members alone decides the successful functioning of the

project in the panchayat.

No PMC member has received any training a