RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,

BANGALORE, KARNATAKA
ANNEXURE-2
PROFORMA FOR REGISTRATION OF SUBJECTS FOR
DISSERTATION

1. NAME OF THE Ms. NAMITA.M.PALLIPPURATH

CANDIDATE AND M.Sc. NURSING, 2013 BATCH
ADDRESS ST.JOHNS COLLEGE OF NURSING,
BANGALORE-34

2. NAME OF THE ST.JOHNS COLLEGE OF NURSING

INSTITUTION ST.JOHNS NATIONAL ACADEMY OF
HEALTH SCIENCES
BANGALORE-34

3. COURSE OF MASTER’S DEGREE IN NURSING

STUDY AND CHILD HEALTH NURSING
SUBJECT

4. DATE OF 02-05-2013
ADMISSION TO
THE COURSE

5. TITLE OF THE EFFECTIVENESS OF INFORMATIONAL

TOPIC PAMPHLET ON KNOWLEDGE AND
PRACTICE OF CARETAKERS
REGARDING HOME CARE
MANAGEMENT OF CHILDREN WITH
CANCER

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BRIEF RESUME OF INTENDED WORK

6.1 NEED FOR THE STUDY

Cancer is a term used for diseases in which abnormal cells divide without control and are able

to invade other tissues. Cancer cases are estimated around 12.7 million new cases diagnosed

worldwide in 2010. Childhood cancers are the leading cause of death by disease among

children aged 1-14 years of age. In India, out of 8 lakh cancers diagnosed anually, about

50,000 are childhood cancers.1 According to the Indian Council of Medical Research(ICMR),

a decade back childhood cancers were 2.5% of the total number of cancer cases, today they

add upto 5.5%. According to statistics, 1.6 to 4.8 of all cases reported in the country is among
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children below 15 years of age. etc. The most common type of cancer seen in children is

leukemia which accounts for about 34% of all cancer cases, followed by neuroblastoma,

Wilm’s tumour, Lymphoma, Rhabdomyosarcoma, Retinoblastoma.3

The care of children with cancer is a complex, challenging and lengthy process. Hence, the

child needs to be provided all the care by the parents after discharge from hospital.

Responsibilities of caregivers have extended widely and more technical jobs such as

medication administration , maintaining neutropenic precautions at home, and care of

invasive lines, diet, early recognition of complications are few routine jobs for family

caregivers.4 Low socio economic status of the parents, lack of knowledge of medical care and

resources to meet the medical care are some of the impedents which probably compel the

parents to delay or postpone the follow up visits.5

The World Health Organization promotes the importance of families

receiving input from palliative care services, identifying the patient and family as the unit of

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care.Nurses need to recognize that patients and their caregivers react to cancer as a unit and,

as a result, they both have legitimate needs for help from health care professionals. When

caregivers’ needs are not addressed, patients are denied the opportunity to obtain optimal care

from a well-prepared family caregiver. Programs of care directed only toward patients are

seldom sufficient to meet patients’ needs because so much of the patient's care depends on

family caregivers.6

Cancer patients and their family caregivers react to cancer as one emotional

system7.An article from the journal of paediatric oncology nursing suggests that home care

has become a well-accepted option for children with chronic illnesses, such as cancer, who

require continued technological care for survival. Nurses play a major role in the discharge

planning for home care by educating care givers to perform the necessary care, and by

ensuring that the care givers and the home environment are ready for the child's discharge.8

A descriptive study was conducted in Nanakali Hospital, Iraq in 2011 to assess

knowledge regarding home care management of caregivers having leukemic adolescent

children. 80 caretakers were admininstered questionnaires on knowledge and practice on

home care. The study revealed that 90% of caregivers had deficient knowledge regarding

causes and symptoms of the disease and 80% had deficient knowledge regarding importance

of nutrients and 85% had deficient knowledge regarding psychosocial support to the child.

The study recommended updating health interventional programmes to improve knowledge

and practices of caregivers of children with cancer.9

The investigators personal experience after working in the ward, made her realise that

indeed the caretakers of children are essential for providing optimal treatment to the child. In

St.John’s Medical College Hospital, there are about 60 registered cases who come for regular

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follow up to the paediatric oncology OPD. 4-5 children get admitted for management of

febrile neutropenia per month. Caretakers are taught aspects of care for the child, but these

complications can be managed better by educating the parents. Considering the above facts,

the investigator found it necessary to impart knowledge and improve the practice of the

caretakers using an informational pamphlet.

6.2 REVIEW OF LITERATURE

The term “literature review” refers to a range of activities associated with conducting studies

and drawing conclusions about existing evidence. A systematic review aims to provide the

reader with an overview of the existing evidence on the problem being addressed, what is

unknown about the topic, confirms the need for and significance of the research study

undertaken.10

The literature review for the present study has been organized under th following headings:

 Knowledge regarding home care management of children with cancer

 Studies related to effectiveness of information booklet on home care management of

children with cancer.

KNOWLEDGE REGARDING HOME CARE MANAGEMENT OF CHILDREN

WITH CANCER: A cross sectional study on 79 parents was conducted in Hospital

University Sains Malaysia. Participants completed a set of questionnaires measuring their

knowledge about cancer, the amount of activities they perform to enhance their child’s coping

and their level of stress and anxiety. The higher the education and income the higher was the

knowledge(p=<0.01). Results showed higher educated parents engaged in more activities with

their children. Parents with higher level of knowledge reported decreased stress and coping.

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The study recommended similar studies to improve caregivers knowledge regarding cancer

and involving them in their child’s care.11

A descriptive study on an internet based system designed to support home care management

of childhood leukemia was conducted in Children’s Hospital, Boston in 2002. 25 parents of

children with ALL and 34 clinicians were interviewed to identify the system’s potential to

improve home care. Interview focused on medication, side effect management at home,

communication with health care team. Results revealed an urgent need for tools that would

help them manage medications at home, 40% of parents wanted to know more about their

child’s therapy. Clinicians focused on decision support, prescription refill, educational and

emotional support. The findings demonstrate importance of educational tools with the home

care management of ALL.12

A prospective observational study was conducted at 3 pediatric oncology clinics in the

northeastern and southeastern United States. Patients undergoing chemotherapy and their

parents were recruited from November 2007 through April 2011. A trained nurse visited the

home and reviewed medication bottles Two physicians independently made judgments

regarding whether an error occurred and its severity. 242 medication administrations were

observed in the homes of 92 patients and 72 medication errors were found . Four errors led to

significant patient injury. An additional 40 errors had potential for injury: 2 were life-

threatening, 13 were serious, and 25 were significant. Nonchemotherapy medications were

more often involved in an error than chemotherapy medications.13

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STUDIES RELATED TO EFFECTIVENESS OF INFORMATION BOOKLET

A quasi-experimental study was conducted at Cairo University to determine the effect of a

structured program for family caregivers on their knowledge and coping stratergies with their

children undergoing chemotherapy using 60 samples. The study revealed that the intervention

program was effective in helping caregivers to manage chemotherapy side effects and helped

to improve their knowledge regarding their child’s illness. The study recommended that

increasing caregivers competance requires training family caregivers in the skills they need to

provide comprehensive care.14

A study was undertaken to determine the effect of educational intervention on parents'

knowledge and performance of the social needs of the pediatric leukemia patients. Sixty

parents were selected using convenient sampling method and were randomly categorized into

2 groups: experimental and control. Data were collected before, 1 hour after, and 2 months

after the intervention, using a questionnaire.. The mean scores of the parents' knowledge in

the experimental and control groups before the intervention were 5.8 and 6.2, respectively.

One hour after instruction, the mean rose to 12.8 and 6.4, and 2 months later to 13.3 and 6.5

(p < .00l). Therefore, educational intervention increased the knowledge of the parents of

pediatric leukemia patients. It was recommended that educational programs be arranged for

parents so that they manage their children at home well.15

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6.3PROBLEM STATEMENT

A study to assess the effectiveness of an information pamphlet on the knowledge and practice

of caretakers regarding home care management of children with cancer, in a selected hospital,

Bangalore

6.4 OBJECTIVES OF THE STUDY

1. To compare the knowledge of caretakers regarding home care management of

children with cancer before and after administering the information pamphlet

2. To compare the practice of caretakers regarding home care management of

children with cancer before and after administering the information pamphlet

3. To find out coorelation between knowledge and practice of caretakers

regarding home care management of children with cancer

4. To determine association between knowledge and practice of caretakers

regarding home care management of children with cancer with the selected

baseline variables

6.5 OPERATIONAL DEFINITIONS

Effectiveness:

In this study effectiveness refers to the extent to which the pamphlet has achieved the

desired result and is measured in terms of significant gain in the post-test knowledge

and practice scores of caretakers of children with cancer

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Information pamphlet:

In this study, information pamphlet comprises of written information regarding home

care management of children with cancer.

Knowledge:

In this study, knowledge refers to the awareness of caretakers about home care

management of children with cancer as measured by their response scores to the items

in a structured knowledge questionnaire.

Practice:

In this study, practice refers to the activities carried out at home by caretakers of

children with cancer as measured by their response scores to the items in a structured

practice questionnaire

Caretakers:

In this study, caretakers refer to the immediate personnel who accompany and take

care of the child with cancer either in the hospital or at home like father, mother,

grandparents.

Children with cancer:

In this study, children with cancer refer to children having the following types of

cancer-

 Leukemia

 Lymphoma

 Wilm’s tumour

 Rhabdomyosarcoma

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 and who are in the age group of 1-18 years attending the paediatric oncology

OPD, paediatric wards and day care ward of SJMCH.

Home care management:

In this study, home care management refers to the care given to children with cancer at home

in the following aspects-

 Neutropenic precautions to be followed at home

 Medication management at home and side effects

 Dietary management

 Activities of daily living

 Regular follow up

 When to seek medical help

 Complications of cancer therapy

Baseline variables:

In this study, baseline variables of caretakers included are age, gender, type of relationship

to child,educational status, occupation, monthly income, h/o previous information

recieved regarding care of their child with cancer, duration of illness

Baseline variables of child include age, sex, previous hospitalisation, duration of illness

6.6 ASSUMPTIONS

1. Caregivers may have some knowledge and practice regarding home care

management of children with cancer

2. Information pamphlet is an accepted stratergy in improving knowledge

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 3. Selected baseline variables may have an influence on knowledge and practice

of caretakers regarding home care mangement of children with cancer

6.7 DELIMITATION

This study will be limited only to caretakers of children with cancer in the age group of 1- 18

years who will attend the paediatric OPD, day care ward and paediatric wards of SJMCH,

Bangalore

6.8 PROJECTED OUTCOME

The findings of this study would reveal the knowledge and practice of caretakers before and

after administering the information pamphlet regarding home care of children with cancer. It

would aid in early recognition of symptoms of complications, proper management and

maintain their child’s health.

6.9 HYPOTHESIS

H1= There will be a significant difference in the pre-test and post-test knowledge scores after

administering the information pamphlet at 0.05 level of significance

H2= There will be a significant difference in the pre-test and post-test practice scores after

administering the information pamphlet at 0.05 level of significance

H3= There will be a significant coorelation between knowledge and practice of caretakers of

children with cancer at 0.05 level of significance

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H4= There will be a significant association between knowledge and practice of caretakers of

children with cancer and selected baseline variables at 0.05 level of significance

7.0 MATERIALS AND METHOD

7.1 SOURCE OF DATA:

The data will be collected from caretakers of chidren with cancer between age group of 1-18

years who will attend the paediatric OPD, day care ward and admitted in paediatric wards of

SJMCH.

7.1.1 RESEARCH APPROACH-

The research approach will be quantitative approach

7.1.2 RESEARCH DESIGN

In the present study, a quasi experimental one group pre-test post-test design will be used.

7.1.3 SETTING OF THE STUDY

The study will be conducted in the paediatric wards, day care ward and paediatric OPD of St.

John’s Medical College Hospital, Bangalore. St. John’s Medical College Hospital is a tertiary

care teaching institute and 1200 bedded multispeciality hospital with facilities of oncology

clinic functioning every Wednesday. Approximately 60 children are registered in the clinic.

Inpatients are catered in the 6 bedded oncology room in the paediatric ward. A day care ward

for outpatients chemotherapy, blood or platelet transfusions is also present.

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7.1.4 POPULATION

In this study, the population comprises of caretakers of children with cancer between age

group of 1-18 years attending the paediatric OPD, day care ward and admitted in the

paediatric wards of SJMCH.

7.2 METHODS OF DATA COLLECTION

7.2.1 SAMPLING PROCEDURE

Samples will be selected using purposive sampling technique guided by inclusion criteria of

the study.

7.2.2 SAMPLE SIZE

The sample size for the present study will be 39 samples which is calculated form the

previous study.9

7.2.3 INCLUSION CRITERIA

 Caretakers of children aged between 1- 18 years who will attend the paediatric

OPD, day care ward and paediatric wards of SJMCH.

 Caretakers available at the time of data collection

 Caretakers who can understand and speak Kannada, Hindi, Tamil and English

7.2.4 EXCLUSION CRITERIA

 Caretakers who are not willing to participate in the study

 Children diagnosed with brain tumors

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7.2.5 TOOLS/INSTRUMENTS USED

The instument which will be used for this study will be a structured knowledge and practice

questionnaire on home care management of children with cancer. It will consist of the

following sections:

SECTION A- Structured interview schedule will be used to assess the baseline

variables

SECTION B- Structured interview schedule to assess knowledge on home care

management of children with cancer

SECTION C- Structured interview schedule to assess practice on home care -

management of children with cancer

SECTION D- Information pamphlet regarding home care management

7.2.6 DATA COLLECTION METHOD

After obtaining administrative permission the subjects will be identified according to

the inclusion and exclusion criteria by purposive sampling. Informed consent will be

obtained from the subjects. An interview schedule will be used to collect baseline

variables. Pre-test knowledge and practice on home care management will be assessed

using structured interview schedule for a duration of 20 minutes for each subject.

Information pamphlet will be given to the subjects. Post-test knowledge and practice

will be assessed after 7 days using structured interview schedule.

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7.2.7 PLAN FOR DATA ANALYSIS

 The data analysis will be done using descriptive and inferential statistics

 The data will be organized in a master sheet

 Frequency, mean, percentage and standard deviation to assess the baseline

variables

 Chi square will be used to find out association between knowledge and

practice with the baseline variables

 Corelation between knowledge and practice will be calculated using

Pearsons method

7.3 DOES THE STUDY REQUIRE ANY INVESTIGATION OR INTERVENTIONS

TO BE CONDUCTED ON PATIENTS OR OTHER HUMANS OR ANIMALS? IF SO

PLEASE DESCRIBE BRIEFLY

Not applicable

7.4 HAS THE ETHICAL CLEARANCE BEEN OBTAINED FROM YOUR

INSTITUTION?

Not applicable

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at http://www.indianjcancer.com

2. National cancer registry programme. Available at:

www.icmr.nic.in/ncrp/ncrp_p/cancer_reg.pdf

3. Hockenberry M J, Wilson D Wongs. Essentials of paediatric nursing. 7th ed.

Missouri:Elseviers; 2010:957-972

4. Cosrlett J, TarycrossA. Parental involement in family centered care. J.Clin.Nurs 2006

Oct;15(10):1308-1316

5. Kristen E Helm, Joan M Patterson. Parental involvement and family centered care.

JOPON 2003 Nov; 20(6):301-313

6. WHO/ Early detection of cancer. Available at www.who.int/cancer/detection

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caregivers having leukemic adolescent patients in Erbil city. AMIA Annual symposium

proceedings. November 2002: 290-295

10. Polit DF, Beck CT. Nursing research- Generating & Assessing Evidence for nursing

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11. Othman A, Mohammad N, Hussain AZ. Factors related to parental well being in cancer.

IPEDR 2011 Apr; vol5

12. Goldsmith DM, Silverman LB,Safron C. Supporting home management of childhood

leukemia. Annual symposium proceedings; AMIA 2002: 290-294

13. Walsh KE, Roblin DW, Weingart SN, Houlahan KE, Degar B, Billett A, Keuker C,

Biggins C, Li J, Wasilewski K, Mazor KM. Medication errors in the home: a multisite

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14. Hannah EAA, Lamia AS, Mohammed MT. The effect of a structured programme for

family caregivers on their knowledge and coping stratergies with their children

undergoing chemotherapy. Available

at:http://74.125.153.132/searchq=cache:5d-

yxd1AcYJ:faculty.ksu.edu.sa/73817/paperAbstracts.aspx+knowledge+on+coping+chem

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