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  Table of Contents  
ORIGINAL ARTICLE
Year : 2013  |  Volume : 50  |  Issue : 3  |  Page : 219-226
 

Assesment of the reactions of caregivers of a cancer patients: Valıdıty and reliability of the scale of "Your reactions helping your family member" in Turkısh society


1 Department of Oncology Nursing, Dokuz Eylul University, Faculty of Nursing, Izmir- 35340, Turkey
2 Internal Medicine Nursing, Nursing Ege University, Faculty of Nursing, Izmir- 35100, Turkey

Date of Web Publication23-Sep-2013

Correspondence Address:
O Ugur
Department of Oncology Nursing, Dokuz Eylul University, Faculty of Nursing, Izmir- 35340
Turkey
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0019-509X.118738

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 » Abstract 

Background: This study has been descriptively designed in order to evaluate the validity and reliability of the scale of "Your Reactions to Helping Your Family Member" for Turkish society. The scale that was developed by Archbold and Steward in 1983 being applied at caregivers is included within Family Care Inventory. Materials and Methods: The scale which is adapted for Turkey was applied to 132 caregivers of cancer patients, who are family members, twice by face-to-face interview method. Sample of the study consists of 132 caregivers of cancer patients who had outpatient treatment in chemotherapy unit of a university hospital in İzmir. Quantitative and percentage Ugur and Fadiloglu tests were used in the analysis of descriptive data regarding caregivers, Kendall W analysis was used to assess content validity of the scale, Pearson's Product Moment Correlation was used for test-retest reliability of the scale and Cronbach Alpha Analysis was used for internal consistency. Results: Validity of the scale was determined by using Kendall's Coefficient of Concordance (W: 0.62, p > 0.05) and it was evaluated as there's no difference ofopinion among the experts. Test-retest reliability coefficient between the first and the second application of the scale was found - as. 88. Conclusions: The scale which is ascertained to be valid and reliable as a result of our study can be used to assess the reactions of caregivers of cancer patients during the care giving period in Turkish society.


Keywords: Cancer, Caregiver, Validity and reliability, Your reactions to helping your family member


How to cite this article:
Ugur O, Fadiloglu C. Assesment of the reactions of caregivers of a cancer patients: Valıdıty and reliability of the scale of "Your reactions helping your family member" in Turkısh society. Indian J Cancer 2013;50:219-26

How to cite this URL:
Ugur O, Fadiloglu C. Assesment of the reactions of caregivers of a cancer patients: Valıdıty and reliability of the scale of "Your reactions helping your family member" in Turkısh society. Indian J Cancer [serial online] 2013 [cited 2019 Sep 22];50:219-26. Available from: http://www.indianjcancer.com/text.asp?2013/50/3/219/118738



 » Introduction Top


Cancer is one of the important health problems threatening health concerns in the whole world [1] and Turkey is a disease creating [2] a serious level of stress not only for patients but also for the families of the patients and treatment staff and straining all balances and harmony from the process of diagnosis until the terminal period. [1] Change in the health system has shifted the caregiving style of cancer patient from hospitalization to outpatient treatment and home care; [3] increased the role of family in home care. [4] Roles of the caregivers trying to caregiver the cancer patient in the family are complex. Caregivers have to follow up changing situations such as the variety in the management developed in their patient, alterations in symptoms, maintenance of devices used in patient caregiving (infusion pump, intravenous fluid replacements…), transportation of the patient, protection of the patient and management of activities and manage the reactions of stress and discomfort in the patient. Besides, caregivers need to be supported for all such issues. [4],[5] Increasing incompetence of the patient, increase of the number of medical equipment's and supplies required for caregiving and increasing mental and physical efforts and endeavor of caregivers constitute a serious level of emotional, social, physical and economic burden for caregivers. [4],[6] Bonnel 1996 stated that 60.60% of the caregivers do not have time to allocate for themselves, 78.79% of them feel exhausted, 84.85% of them experience difficulties in communication with the patient whereas 56.9 % of caregivers experience difficulties due to economic reasons. [3] Kiecolt and Glaser (1995) specify that levels of stress in caregivers increase, their immunity systems weaken, health conditions get worse; besides depression, anxiety, feeling of hostility and self insufficiency and sleep disorders develop especially in the end of two-year period. Increasing level of dependence of the patient on the caregiver and decreasing mobility can also be counted among the factors leading to negative reactions in the caregiver. [7] Given et al. 1992 specify that supportive care should be given to family members in home care of patients with advance stage diseases and they should be prepared for their duties. Accordingly, it is stated that the caregivers should be informed on disease, prognosis, emotional shifts that can be observed in patients and treatment; besides they should be physically and emotionally supported. The purpose is the comfort of the patient in caregiving period of advance stage cancer patients. Families may experience feelings of shock, rage and depression connected with the inefficient management of treatment. Control of symptoms is a major problem especially for advance stage patients and their caregivers. Pain management and insufficient caregiving are important sources of stress for caregivers in family. Physical symptoms and the level of dependence increasing in the patients as the disease advances lead to insufficiency in caregiving of the caregiver; therefore emotional problems and undesired reactions are observed in male or female caregivers in accordance with the prognosis of the patient. [3] Bachner et al. 2007 specify that one the other hand, caregivers who have been caregiving for a long time specify that they are restricted due to caregiving role .

Given et al. 1992 qualify the reactions of the caregivers against patients as complicated and changeable along time. It is specified that the reactions of the caregivers are affected by the perception of duty of caregiving of the caregiver, state and requirements of the patient, environment of caregiving, individual characteristics of the caregiver and previously existing dimension of relationship of the caregiver and the patient. These features make caregiver reevaluate caregiving and generally affect their lives. Therefore, each reaction against caregiving is subjective and complex. [8] Meaningful relation was specified between the negative reactions of the caregiver and the age of caregiver, the fact that the caregiver is a woman, caregiver's success at symptom management, the fact that she/ he has an adolescent child, socio-demographic data such as caregiver's roles in the family and professional life, previous state of relationship between the patient and the caregiver, zone of cancer in the patient and the level of dependence, variety observed in the patient's symptoms connected with treatment, other failures accompanying the situation and the physical caregiving of the patient. It was also specified that the reorganization of the family due to changes in the management of cancer treatment leads to feeling of incompetence in the caregiver as well as increase of the level of reaction and stress observed in the caregiver. Approaches applied to caregivers help lowering the burden of caregiving, depression and emotional stress and increasing their life quality. [9],[12] In many studies, caregivers specify that they feel happy as they positively caregiver their patients and they benefit from this situation as well. It is stated by World Health Organization that caregivers who have been caregiving cancer patients especially need to be supported by palliative care staff. [6]

There are many different types of scales developed for measuring negative reactions of caregivers. [6],[4] Caregiver Reaction Assessment Scale (CRA) developed by Given et al.(1992) for the caregivers of various patient groups, whose validity and reliability was determined by being applied on the spouses of 181 colorectal cancer patients, is a subjective, multi-dimensional scale measuring the negative and positive reactions of cancer patients having fine psychomotor characteristic. The scale includes 24 items and 5 subscales measuring deterioration of the situation, financial problems, insufficient family support, health problems and caregivers self-respect. [4] Swiss version of CRA was applied on 209 caregivers with malignant diseases, dementia and physical defects. CRA scale was applied on the caregivers of dementia patients by Meiland et al. 2001, it was applied on the caregivers of carious types of cancer patients by Nijboer et al. 1996, 2000; Given et al. 1993; Mc Corckle et al. 1993; Kurz et al. 1995; Andrew et al. 2001 and Crawfor 2001 and it was applied by Labbe et al. 2002 on the caregivers of children with central nervous system diseases. [12]

Scale of "Your Reactions to Helping Your Family Member" included in Family Care Inventory developed by Archbold and Steward being applied on the caregivers of dementia patients in order to research the relation between the patient and the caregiver in the family and the reactions of the caregiver experienced during caregiving cancer patient in 1983 was used in this research. [13] Located in the Family Care Inventory scale was created by Montgomery and Borgatta and developed by Archbold and Stewart used to measure the reactions of caregivers of patients with dementia. [14]

Studies measuring reactions that may occur in caregivers of cancer patients in Turkish society are insufficient. Adaptation of the scale of "Your Reactions to Helping Your Family Member" to Turkish society is going to ensure the diagnosis of reactions which may occur in caregivers of cancer patients in connection with the process of caregiving and it is going to be used in other studies. It was aimed to assess the validity and reliability of the scale of "Your Reactions to Helping Your Family Member" in this study.


 » Materials and Methods Top


This study is descriptively planned. Sample of the study consists of 132 caregivers of cancer patients who had outpatient treatment in chemotherapy unit at the university hospital in İzmir between June 2004 and October 2004. Sample of the study consists of primary caregivers of patients receiving chemotherapy who are above 18 yrs, literate, have no visual, auditory, perceptive and psychiatric problems. Approval was received from the ethics committee of the hospital before starting the study. Verbal and written permissions of the caregivers included in the sample group were received. Two data collection tools were employed for collecting data in the study which are
"Description Form of Caregiver" and the scale of "Your Reactions to Helping Your Family Member".

Description Form of Caregiver; variables of caregiver such as age, marital status, educational level, occupation, social security, working condition, level of income, degree of relation with the patient, existence of other people the caregiver is obliged to look after, duration of caregiving and the people helping the caregiver in caregiving process.

Scale of Your Reactions to Helping Your Family Member scale was developed by Archbold and Steward with the perspective of role theory in 1983 and restructured in years 1993 and 2000. It includes 15 items and sub dimensions. A likert type scale was used in assessment of the scale. There are five options for each question. Participants answer the items in the scale choosing 0-None, 1- Very little, 2-A little, 3- Quite, 4- Very much. Total score derived from the scale is obtained by summing up the answers given to all items. Archbold & Steward have specified the reliability factor of the scale as .70. [13],[15] Permission was received from Archbold and Steward to use the scale in Turkey via e-mail.

When an instrument is translated into another language and culture for adaptation, it is necessary to use correct grammar of target language and adapt idioms and items which are foreign into target language to make them understandable. [16] To accomplish the procedure, the researchers;

  • Obtained written permission from Archbold andSteward via e-mail to adapt the scale of "Your Reactions to Helping Your Family Members" for Turkish and to use it in this study.
  • The scale was translated from English into Turkish by five people who have a good command of Turkish and English two of whom are lecturers in school of foreign languages at a university and three of whom are teachers of English at a high school.
  • Concepts in the scales in both languages were rearranged taking suggestions of experts into consideration.
  • The scale was retranslated from Turkish into English by another English philologist who had not seen the original English version of the tool before.
Expert opinions of five lecturers from the department of nursing, a lecturer from the faculty of literature and eight experts two of whom are lecturers at the department of oncology at medical faculty about the validity of the scale whose translation into Turkish was completed with regards to language and scope. The experts were given the source and the target texts of the scale and they were asked to compare them. The experts were asked to grade the items from 0 to 10 to assess the congruency of the translated scale (0: not congruent at all, 10: completely congruent). Acceptable mean point of each item was specified as "5 and above" according to expert opinions. Kendall W analysis was performed to assess expert opinions congruency.

Pre application of the scale of "Your Reactions to Helping Your Family Members" was performed on twenty caregivers who are compliant with the features of sample after the translation was completed. It was determined that the questions in the scale were understandable and clear by the caregivers at the end of pre application and it was decided to apply it on big sample group.

Below steps of data collection were followed: (1) Brief information was given to each caregiver regarding the purpose of the study, principle of confidentiality was explained and it was stated that the principle of volunteerism was the basis of the study and they were free to participate or not. (2) Caregivers were asked to use anonymity on data collection forms, so that the data from the first and second administration could be matched to compare test and retest scores. (3) The Turkish version of "Your Reactions to Helping Your Family Members" was used. These forms were filled in by the caregivers in the waiting room of chemotherapy unit under the supervision of the researcher to answer the questions that could be addressed by the caregiver and make sure that the scale is properly filled in. The scale was reapplied to sample group two or three weeks after the first application.

Statistical methods

Analysis of the data derived from the study was made in Statistical Package For Social Science (SPSS) 11.0 package software. Quantitative and percentage tests were used in the analysis of descriptive data regarding caregivers, Kendall W analysis was used to assess content validity of the scale of "Your Reactions to Helping Your Family Member0", Pearson's Product Moment Correlation was used for test-retest reliability of the scale and Cronbach Alpha Analysis was used for internal consistency.


 » Results Top


It was observed that 37.9% of the caregivers are between 43 and 55, 54.5% of them are males, 90.9% are married, 41.7% are retired, 80.3% of them belong to retirement fund and 79.5% are unemployed in the study in which validity and reliability of the scale of "Your Reactions to Helping Your Family Member" for Turkish society. It was also found out that the income level of 51.5% of the caregivers is above subsistence level, 34.8% of them have caregiving their patients for 6 months or less, 97% of them have received no support and 40,9% of the patients have received treatment due to Breast Cancer [Table 1].
Table 1: Descriptive Information Regarding Caregivers

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Validity of the scale was determined by using Kendall's Coefficient of Concordance (W: 0.62, p > 0.05) and it was evaluated as there's no difference of opinion among the experts. During the scale's reliability phase, face to face interview technique was applied to 132 caregivers twice with at 15 day intervals and the derived results were tested by Pearson Correlation analysis. Test-retest reliability coefficient between the first and the second application of the scale was found as .88 and its consistency was specified to be sufficient in temporal process. Cronbach Alpha value of the scale was found to be. 88 in the first application, whereas it was. 87 in the second application and it was decided that the reliability is high for Turkish society [Table 2].
Table 2: Test- Retest Reliability Result of the Scale of Your Reactions to Helping Your Family Member

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In the study, factor loads of the items included in "Your Reactions to Helping Your Family Member" were found with principal component analysis statistical analysis method, whereas rotation of the items was analyzed with varimax with kaizer normalization statistical analysis and as a result it was discovered that the items in the scale were divided into four factors. Factor loads of all items in the scale change between 0.010-0.944. When variance and cronbach's alpha values of these four factors were analyzed, variance of factor 1 was found to be 38.428 and cronbach's alpha value was found to be .83; whereas, variance of factor 2 was found to be 16.877 and cronbach's alpha value was found to be .79 and variance of factor 3 was found to be 8.386, cronbach's alpha value was found to be .65; while variance of factor 4 was found to be 6.672, cronbach's alpha value was found to be .63 [Table 3].
Table 3: Rotated factor loadings of items of the scale

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 » Discussion Top


In this study, validity and reliability of "Your Reactions to Helping Your Family Member" were established because of the lack of measurement tools with established validity and reliability to measure the care load of caregivers providing care to cancer patients in Turkey.

Content Validity of the Scale; opinions of eight experts were received in order to evaluate the congruency of the scale with the language and culture and whether the items of the scale translated into Turkish measures the behaviors meant to be measured. Concordance of the expert opinions was evaluated by Kendall W analysis. As a result, Kendall's Coefficient of Concordance was found to be 0.62 and it was concluded that there was no difference among the experts. It is advised that there should be a pre-application on the group bearing similar features with the sample group to evaluate the comprehensibility of the measuring tool. Comprehensibility of the statements was tested in this study applying the scale on twenty caregivers bearing similar features with the sample group. Content validity of the scale was achieved as a result of received expert opinions and pre-application.

Test-Retest Correlations of the Scale; criterion of "time invariance" which is one of the reliability criteria is the relation among data groups obtained as a result of measurements at regular intervals under similar conditions. The intervals of the application of measurement tool are important. This duration should neither be very long so as to allow the measured feature change or very short so that they remember the answers they gave in the first application. Generally the advised duration shouldn't exceed four weeks. [17] Tests and retests were applied once in 14 to 28 days in compliance with the treatment of the patient. As a result of application of the scale twice with intervals of 15 days, reliability coefficient of test-retest was found as 0.88 and this was evaluated to be statistically meaningful (r:0.88, p:0.00). It was specified that test-retest reliability was congruent with literature data. It is seen that the validity of the sub scales of CRA developed by Given et al. 1992 ranges between 0.62 and 0.83 when the literature is scanned. When the internal reliability of the sub scales of the scale is assessed, deterioration of the situation is found to be 0.81, financial problems is 0.82, insufficient family support is 0.62, health problems is 0.68 and self-respect of the caregiver is 0.73. These data coincide with the findings derived from our study. [3] Mc Corkle et al. 1993 repeated CRA scale in 1993, their findings of internal consistency were; deterioration of the situation: 3.34, financial problems: 2.24, insufficient family support: 2.24, existence of health problems: 2.13 and self-respect: 4.10, Given et al. 1992 found lower values especially for the lower dimensions of the scale measuring negative reactions. They explained this situation by attributing it to criteria of choosing the caregivers of cancer patients. [3] It is specified that there is a relation among the health condition and experiences of the caregiver, prognosis of the patient and the way caregiver feels about his/her burden as well as the reactions of the caregiver. [7],[11]

Tests and retests were applied once in 14 to 28 days in compliance with the treatment of the patient. As a result of application of the scale twice with intervals of 15 days, reliability coefficient of test-retest was found as 0.88 and this was evaluated to be statistically meaningful (r:0.88, p:0.00). It was specified that test-retest reliability was congruent with literature data. It is seen that the validity of the sub scales of CRA developed by Given et al.. (1992) ranges between 0.62 and 0.83 when the literature is scanned. When the internal reliability of the sub scales of the scale is assessed, deterioration of the situation is found to be 0.81, financial problems is 0.82, insufficient family support is 0.62, health problems is 0.68 and self-respect of the caregiver is 0.73. These data coincide with the findings derived from our study. [3] Mc Corkle et al..(1993) repeated CRA scale in 1993, their findings of internal consistency were; deterioration of the situation: 3.34, financial problems: 2.24, insufficient family support: 2.24, existence of health problems: 2.13 and self-respect: 4.10, Given et al.. 1992 found lower values especially for the lower dimensions of the scale measuring negative reactions. They explained this situation by attributing it to criteria of choosing the caregivers of cancer patients. [3] It is specified that there is a relation among the health condition and experiences of the caregiver, prognosis of the patient and the way caregiver feels about his/her burden as well as the reactions of the caregiver. [8],[13]

Factor Loads of the Scale; ın the study, it was found that items of the scale were found to be divided into four factors. Factor loads of all items in the scale change between 0.010 -0.944. Variance of factor 1 (Daily life) included in the scale was found to be 38.428, cronbach's alpha value was found to be. 83, item loads were found to be (decreased the time you have to yourself?) (.87), increased the stress in your relationship with him/her? (.85) restricted personal privacy? (.88) increased attempts by him/her to manipulate you? (.87), decreased the time you have to spend in reactional activities? (.72); variance of factor 2 (Strain) was found to be 16.877, cronbach s alpha value was found to be .79, item loads were found to be (added tension to your life?) (.68), restricted the vacation activities and trips you take? (.94), ıncreased the nervousness and depression you have concerning your relationship with him/her (.94), added to your feelings that you are being taken advantage of? (.55); variance of factor 3 (Feeling) was found to be 8.386, cronbach's alpha value was found to be .65 and item loads were found to be (reduced the time you have to do your own work and daily chores?) (.30), increased demands made by him/her that are over and above what he/she needs?(.39); variance of factor 4 (Concern) was found to be 6.672, cronbach's alpha value was found to be .63 and item loads were found to be (ıncreased the number of unreasonable requests made of you?) (.010), increased your anxiety about thing? (.14), decreased the time you have for friends and other relatives? (-.0.82), decreased the money available to meet the rest of your expenses? (.038).

The literature "Montgomary Borgatta Caregiver Burden Scale" and a 14 item scale as the last, by the Family Care Inventory Archbold and Stewart into the 15 items, adapted and used to analyze the reactions that may occur due to caregiver. Montgomary's the scale burden objective caregiver burden scale; subjective demand burden and subjective stress burden are grouped under the factor of 3. Objective scale has 6 items related to the life and caregiver burden in the values of cronbach's alpha ranged from .83-.71. Responsibility of the caregiver's perception of excess demand in the subjective burden and has 4 ıtems and Cronbach's alpha values of between .68 - .82. Scale " Subjective stress burden" in the section and 4 item, caregiver installed and includes the excess liability against the reactions shown by cronbach's alpha emosyonel .81.88 ranges. [18] In our study, the scale used to measure the reactions of caregivers under the 4 factors were similar to the operation of the clustered and Montgamary's. But there is a study in the literature to support our research.

In conclusions; initiatives affecting the occurrence and frequency of negative reactions in connection with the process of caregiving should be planned and appropriate attempts should be made. Especially, attempts to enhance the communication between the patient and the caregiver should be planned, [19] factors and conditions leading to negative reactions should be changed and the quality of care given by the caregiver should be improved. [20] Especially caregivers, number of the studies to specify negative reactions of the should be increased; attempts to overcome factors leading to negative reactions such as marital problems, burden of caregivers and features of the caregivers should be made. Informal trainings regarding caregivers should be planned; problem-focused trainings should be planned and given to caregivers. [7] It is specified that the Turkish version of the scale of "Your Reactions to Helping Your Family Member" is a valid and reliable measuring tool in accordance with the obtained findings. This scale was designed to examine the burden of cancer patient care caregiver studies, the caregiver can be used to study the reactions shown against his caregiver burden. [28]

 
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    Tables

  [Table 1], [Table 2], [Table 3]



 

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