|Year : 2020 | Volume
| Issue : 6 | Page : 1449-1453
Illness perceptions and perceived social support among glioblastoma survivors during hospitalization
Raju Birudu, Krishna Reddy
Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences, Bengaluru, Karnataka, India
|Date of Submission||29-Sep-2017|
|Date of Decision||07-Jan-2018|
|Date of Acceptance||26-Feb-2018|
|Date of Web Publication||26-Oct-2018|
Department of Psychiatric Social Work, Neuro.Surgery Unit, National Institute of Mental Health and Neurosciences, Bengaluru - 560 029, Karnataka
Source of Support: None, Conflict of Interest: None
Background: Glioblastoma (GBM) is a terminal form of illness. Illness perceptions play vital role in illness behavior and managing the disease. GBM cancer survivor's illness perceptions and their perceived social support is not systematically studied. Therefore, study aimed to understand the illness perceptions and perceived social support of GBM survivors during hospitalization.
Methodology: The study used cross sectional-descriptive research design. A total of 40 GBM survivors were recruited by using convenience sampling method. The Illness Perception Questionnaire Revised (IPQ-R) by Moss-Morris, Weinman et al. (2002), and Perceived Social Support from Family (FSS-Family) and Perceived Social Support from Friends (PSS-Friends) scales by Mary E. Procidano and Kenneth (1983) were administered on recruited participants. Semi-structured questionnaire was used to collect the personal and illness details of participants. Free R software was used to analyse the data. Descriptive statistics such as frequency, percentage, mean and standard deviation were calculated on selected variables.
Results: Half of the participants 50% (n = 20) did not aware of illness and 50% (n = 20) partially aware of their illness. Past sins 90% (n = 36), personal stress 90% (n = 36), increased work load 65% (n = 26), head Injury/smoking 55% (n = 22), personal dietary habits 50% (n = 20) were attributed as reasons for GBM. Participant's partially believed GBM was life threatening illness, causes emotional disturbances but not aware of consequences of illness. Perceived social support from family members and friends during hospitalization was found to be poor.
Conclusion: GBM survivor's informational and educational needs were not met adequately. Psychoeducational programmes, addressing negative believes associated with brain cancer and enhancing social support for glioma patients are recommended during hospitalization.
Keywords: Glioblastoma, illness perceptions, perceived social support
|How to cite this article:|
Birudu R, Reddy K. Illness perceptions and perceived social support among glioblastoma survivors during hospitalization. J Can Res Ther 2020;16:1449-53
| > Introduction|| |
The brain is made up of glial cells that support and nourish nerve cells. Some glial cells are called astrocytes and others are called oligodendrocytes. The most aggressive astrocytoma, graded as IV, is called a glioblastoma multiforme or glioblastoma (GBM). Of all brain tumors, GBM has the greatest potential for rapid growth. There is no organized brain tumor registry in India. Hence, robust epidemiologic data are not available for the country. All currently quoted data are based on hospital-based cancer registries under National Cancer Registry Programme. The epidemiology of malignant brain tumors is neglected in India. The age-adjusted incidence rates were 3.9 for males and 2.4/100,000 for females. Gliomas are the most frequently reported histology both in males (26.6%) and females (23.2%).
Recent advances in treatments such as surgical interventions, radiation therapy, and chemotherapy have been helpful and generated hope to adhere to treatment and outcome in GBM survivors. The overall medium survival rates are 10–12 months and maximum survival is =5 rarely reported. The lack of systematic information about the disease pattern creates problems for prevention of brain tumors in general. On the other hand, malignant brain tumors are the most fearful cancers associated with poor prognosis and quality of life; impaired cognitive functions, presence of neuropsychiatric symptoms, and high rates of recurrence have made difficult to recruit glioma patients in clinical research in a timely manner.,,
Studies show that patient prefer to be fully informed about diagnostic procedure, positive and negative consequences of treatment. Yet, open and honest communication is not in the interest of all cancer survivors. Some prefer less information or avoid hearing every detail of their situation. For some people hearing about the word cancer is fearful. This sense of fear is associated with negative misconceptions and poor knowledge. Furthermore, informational and educational material are available in English which cannot be understood by illiterate and low educated people. Illiterate, low educated, and people from lower socioeconomic background are less informed about the diagnosis and illness condition. Individuals actively involve to understand their own symptoms, nature of illness and try to cope with illness. Thus, the illness perception begins with the patient's experiences and their own medical condition or illness. The work on illness perceptions is based on a self-regulation theory developed by Howard Leventhal. Patient's illness perceptions are comprised of beliefs about: (a) identity and meaning of illness, (b) causal beliefs, (c) time line beliefs, (d) beliefs about control or cure, and (e) consequences including behaviors and experiences. The illness perception approach has widespread application in physical diseases. Patient models of illness are by nature private and varying across chronic illness even among persons with the same disease. So far, studies have been carried out on illness perception among various medical conditions such as myocardial infraction, diabetes, head and neck cancer, asthma, breast cancer, musculoskeletal disability, mental health, psychosomatics, and leprosy including on low-grade brain tumors.,,,,,,,,, The results of low-grade brain tumor study has reported that illness perceptions play a significant role in understanding and coping with emotional distress. Illness identity has emerged as a significant predictor of depression and anxiety. Illness perceptions are fluctuating along with the course of illness. Research has found that quality of relationships and social support are found to be predictors of good health. In case of brain tumor survivor's social relations are qualitatively desperate. Accessing adequate social support and timely advice still far away for cancer survivors. High proportion of supportive care needs are unmet in brain tumor survivors and their carers., Little research has been undertaken to examine the role of illness perceptions and perceived social support (PSS) among GBM survivors. Therefore, this current study is an effort to understand the knowledge, believes, illness perceptions, and PSS among GBM survivors on pilot basis.
| > Materials and Methods|| |
The present study adopted a descriptive cross-sectional research design. Glioma patients admitted in inpatient neurosurgical ward under the Department of Neurosurgery unit, National Institute of Mental Health and Neuro-Sciences, a tertiary care center, Bengaluru, South India were considered as universe of the study. Participants were selected through a convenience sampling technique and predesigned inclusion and exclusion criteria. The researcher recruits the participants in the study who are easily accessible in a clinical setting. This type of sample is called a “convenience sample.” This method is relatively easy and widely used in the clinical setting.
- Patients who diagnosed suffering with GBM
- Aged between >18 and <60 years old
- Who were admitted to undergo surgical interventions for brain tumor in inpatient care
- Patients with no history of cognitive deficits and consented to participate were included in the study.
- Patients who had diagnosed suffering with Grade I, II, and Grade III brain tumors
- Patients who had language barriers and not consented to participate in the study were excluded.
In the process, 350 glioma survivors were contacted during the study period from October 1, 2012 to August 30, 2014. Only 80 patients diagnosed as suffering with GBM were found to be eligible for the study. Out of 80 individuals, 29 individuals had history of severe cognitive deficits and not able communicate their feelings appropriately, 8 individuals had language barriers, 3 individuals not consented to participate in the study, and 270 patients were suffering with low-grade glioma, thus excluded from the study. Therefore, 40 GBM survivors recruited in the study after confirming the diagnosis by a neuropathologist and based on the inclusion criteria.
Data were collected from participants before surgical interventions during inpatient care. Data were collected by the primary author in face-to-face interview by administering predesigned scales in a private room. The interview was lasted approximately 30–45 min. The data were collected in two parts. In the first part, sociodemographic details of participants such as age, gender, education, marital status, domicile, and reasons for illness were collected. In addition, illness details such as symptoms, duration, and site of the lesion were gathered from hospital records.
In the second part, data were collected by using standardized questionnaire.
The Illness Perception Questionnaire Revised (IPQ-R) by Moss-Morris, Weinman et al. (2002) was used to measure the illness perceptions of GBM survivors. The IPQ-R is a generic instrument, which is adapted and used with specific illness groups including cancer. It measures patient's cognitive and emotional representations of their illness. It comprises the domains of timeline (acute/chronic and a cyclical subscale), consequences, personal and treatment control, illness coherence, emotional representations, and causes. For each dimension, respondents rate their level of agreement within each of the questions on a 5-point Likert scale ranging from “strongly disagree to strongly agree.” The higher the score for each possible cause, the stronger the beliefs that is responsible for their illness. The psychometric properties of the IPQ-R have been proven to be sound in all cultures including in India.
Perceived Social Support from Family (FSS-Family) and Perceived Social Support from Friends (PSS-Friends) scales developed by Mary E. Procidano and Kenneth (1983) were administered on GBM patients to measure PSS-Family and friends. Each questionnaire has 20 items designed to measure the degree on perceived his/her social support needs are fulfilled by family members and friends. PSS-Family and PSS-Friends were scored yes, no, and do not know (Yes = 1 No = 0 and do not know = 0) was scored in both scales. All items were summed up for final score. Higher the scores reflect the more PSS. It had good internal consistency alpha ranged from 0.84 to 90 for PSS-Family and PSS-Friends 0.88–91. It also showed good concurrent validity.
The ethical clearance was obtained from National Institute of Mental Health and Neurosciences, Bengaluru on 15-11-2012 (No.NIMH/DO/SUB-COMMITTEE/2012). After obtaining formal ethical permission from Institute Ethics Committee, researcher contacted participants and explained the aims and purpose of the study. Questions regarding the study were invited from participants and clarified by the primary author then and there. Written informed consent was received from each recruited participant and then administered the preselected tools. Participants also had given freedom to withdraw from the study at any point of time.
Descriptive statistics such as mean (standard deviation), for continuous variables, for nominal, categorical variables frequency and proportions were caliculated. The results were narrated in tables. Data was analyzed using free R software 3.2.4 version, (Freedom Foundation, USA).
| > Results|| |
The present study investigated the level of knowledge, reasons attributed to GBM, illness perceptions, and PSS among 40 GBM survivors. Of which 70% (n = 28) were male participants and 30% (n = 12) were female participants. Participant's average age was found to be 49 ± 8.21 years. The duration of illness was ranged from 1 to 36 months. The sociodemographic and illness details were already reported in our previous study.
Half of the participants 50% (n = 20) are not aware or not heard about brain tumors. Half of the participants 50% (n = 20) partially aware of their illness and treatment needed 45% (n = 18) for GBM. The participants attributed a variety of reasons to their illness, i.e., their own or previous karma/past sins/God's punishment 90% (n = 36), personal stress 90% (n = 36), increased work load 65% (n = 26), head injury/accident/alcohol/smoking 55% (n = 22), and personal dietary habits and their own emotional state 50% (n = 20) were reported as reasons for GBM. In addition, most of the participants did not believe symptoms such as headache, vomiting, seizures, and weakness in upper and lower limbs were part of the illness. [Table 1] depicts the frequency of participant's knowledge levels, attributed reasons for illness, and site of GBM.
|Table 1: Knowledge about illness and reasons attributed for glioblastoma and operated site|
Click here to view
Mean scores of IPQ-R subscales depict that participants perceived their GBM illness was chronic in nature (13.85 ± 8.30). Mean scores on illness coherence were found to be weaker (9.10 ± 4.16). Participants had stronger negative beliefs in treatment control and personal control. Further, results showed that GBM was associated with severe emotional disturbances. PSS results showed that participants had perceived poor social support from family members (5.57 ± 4.65) and friends (5.57 ± 4.65). [Table 2] described the descriptive statistics of illness perceptions and PSS of persons with GBM.
|Table 2: Descriptive statistics of illness perception and perceived social support from family and friends (n=40)|
Click here to view
| > Discussion|| |
The psychosocial issues among GBM survivors and their care givers are over looked. It is imperative to understand the knowledge levels and psychic world of GBM patients and their family members to plan and provide psychoeducational and psychosocial interventions. From this view, this is one of the unique studies which looked into knowledge, illness perceptions, and PSS among GBM survivors on pilot basis. The present study findings of sociodemographic details showed that participants hailed from low socioeconomic status and various sociocultural backgrounds. This result goes in line with the previous study investigated on brain tumors elsewhere in India.
The current study results depicted that GBM survivors are partially aware about GBM at the time of admission. First time, they heard about GBM informed by health-care professionals (HCPs), i.e., neurosurgeon/medical and psychiatric social worker (MPSW)/staff nurses/caregivers during hospitalization. The information received on the disease was inadequate in spite of having desire to know complete details about their illness condition. Language barriers, work load pressure, inappropriate communication, believing that breaking the bad news may worsen the patient's emotional state, less priority to informational and educational concerns of GBM survivors and their family members during Hospitalization might be few reasons for unmet informational needs. On the other side, public educational material is more available in English language than in vernacular language. Illiterate, low educated people, and lower socioeconomic groups are less informed and educated about illness. In addition to that, information and knowledge generated in the west may be of limited application in developing countries due to differences in social and cultural attitudes. Although information is easily accessible in the present era, understanding and meeting the patients' informational needs from prevention to posttreatment remains a challenging task in the field of neuro-oncology in developing countries.
Another finding of the present study was participants attributed various reasons to GBM illness such as their own karma, past sins, increased stress and work load, “head injury” or “accident” or “poor dietary habits,” alcohol consumption, smoking, their own disturbed mental attitude, and emotional state. Previous studies reported that hearing about the word “cancer” is fearful. This sense of fear is associated with inadequate knowledge which leads to negative attitude toward health. Myths and misconceptions are widely prevalent among cancer survivors, i.e., cancer is result of God's curse, evil eye, past or present sins, cancer is infectious if family members have close contact with a cancer patient. The other believes are cancer causes an immediate death, surgery alone can cure the cancer, it is not treatable in advanced stage, and having positive attitude can cure the cancer. This finding is an indicator of literacy as well as social factors prevalent in the society with respect to cancer. This finding once again highlights the need for awareness on cancer among general public, especially on brain tumors.
In addition, GBM survivors had mixed views and believes on causes of illness and symptoms' identity. Half of the respondents believed that GBM illness was chronic in nature, associated with severe physical and emotional consequences. They perceived that receiving treatment helps to get recovered better; however, how treatment works, they are not aware. Weaker perceptions were observed in the domains of illness coherence and personal control. There are several reasons for having mixed perceptions on illness. Patients had tendency to interact and receive information on own disease and treatment from multiple people such as treating Doctors, MPSWs, nurses, copatients, and care givers. Further research is suggested in this area on to what extent patient's consistent interaction with multiple people during hospitalization influencing patient's illness perceptions and their emotional state. This finding is similar to another study conducted on low-grade brain tumors which found that the illness perceptions are varying and fluctuating along with the course of illness. Furthermore, the study results depicted that GBM survivors perceived poor social support or not getting adequate support from family and friends. This result is similar to earlier study which reported that getting accurate and adequate information, timely advice, and social support is more difficult for patients with a brain tumor as well as their carers.
This study was descriptive and cross-sectional in nature. The study did not use any standardized tools to rule out the cognitive deficits of participants. Participants were conveniently and purposively recruited in the study. The study did not measure the psychiatric comorbidity like presence of distress and depression which are likely to cause to cognitive deficits. The study did not explore the side effects of treatment and their experiences with illness in detail which might influence the illness perceptions. Therefore, generalizing the current study findings to another setting was cautioned.
| > Clinical Implications and Conclusion|| |
It was evident from the current study that brain cancer survivors, especially GBM survivor's informational and educational needs were not met adequately. Participants had inadequate knowledge, and negative believes on GBM illness were associated with myths and misconceptions. On the other hand, poor PSS was observed among GBM survivors. This finding was consistent both quantitatively and qualitatively. Therefore, there is an urgent need to address the informational and educational needs by developing educational material in the vernacular language to enhance the disease knowledge among cancer survivors and their care givers. Furthermore, bringing awareness, addressing negative believes, myths, and misconception associated with glioma cancer, and enhancing social support for glioma patients are paramount in the developing countries like in India. The HCPs should make conscientious attempt and ensure that cancer survivors and family members receive correct and timely information, educated adequately and make appropriate referrals to psychosocial care professionals to address the same during hospitalization. Thus, we conclude that psychoeducational and psychosocial interventions must be given equal priority as par with medical treatment in inpatient care.
We sincerely thank our individuals who participated in the study. We express our sincere thanks to Ms. Procidano and Kenneth who have given permission to use Perceived Social Support from Family (PSS-Family) and Perceived Social Support from Friends (PSS-Friends) scales in our study.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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