A 4-Year Retrospective Study on Cancer Patient Families at St. Judes India ChildCare Centres

By Rena Mei, Harvard College ’13 and Pavithra Rajan, St. Jude India ChildCare Centre, Mumbai, India

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Abstract

Background:
Cancer survival is a challenge being faced by the public health system, especially in resource-poor countries. Although children diagnosed with cancer in well-developed countries can expect a 70%-80% long-term survival rate, only 15-20% of children living with cancer in India are able to access the proper treatment. In order to support pediatric cancer patients and their families during the treatment and recovery processes, St. Jude India ChildCare Centres (SJICC) was established. A recent study has demonstrated that the rates of abandonment and complication are much lower among patients staying at SJICC.

Objectives:
To evaluate patient-family satisfaction at SJICC and to conduct an audit of the facilities and services using the feedback.

Materials and Methods:
An emoticon questionnaire, checked for reliability, was created to measure the satisfaction of the patient-families with each of the facilities and services provided by SJICC. In addition, interviews were conducted with few patient families. The retrospective study collected data from 240 patient-families between 2008 and 2012.

Results:
There was no significant difference between evaluation of a facility and the perceived importance of the same facility, while there exists a strong relationship (r=0.60, p<0.001) between them. All the facilities and services provided at SJICC were rated as excellent to very good. The emotional support from staff was highly appreciated.

Conclusion:
Patient-families residing at SJICC are highly satisfied with both physical facilities and psychological support, suggesting that “holistic housing care” is an effective approach to helping these families cope with their children’s cancer treatment and recovery processes.

Key words:
cancer pediatric patients, satisfaction, feedback, emoticon questionnaire

Introduction

There are more than 200,000 new cases of childhood cancer per year worldwide, 80% of which disproportionately arise in developing countries. [1] In contrast, while children diagnosed with cancer in well-developed countries can expect a long-term survival rate (>5 years) between 70% and 80%, only 15-20% of children living with cancer in India are able to access the proper treatment to cure the disease.[2] This considerable gap in survival prospects may be attributed to multiple complex factors that are more prevalent in resource-poor countries. In the initial stages of the cancer, financial difficulties and a lack of awareness of the disease may contribute to a delay in cancer detection and impede access to appropriate health care. Deaths in the later stages of the cancer outside of palliative cases may be due to complications or progression of the disease, development of infections in the immunocompromised patients, and/or abandonment of treatment. [3, 4]

Although there are many biological and social factors contributing to the high mortality rate of pediatric cancer patients in developing countries, the abandonment of treatment is one of the main causes of death in these children and is especially common in India.[5] “Abandonment” in this context is defined as the initiation but non-completion of treatment.[6] Although it is generally difficult to determine the reasons for abandonment, a previous study performed an investigation in resource-poor countries and found that this decision was associated with prolonged travel time to treatment facility (2-5 hours) and age younger than 4-5 years.[7] Similar studies show that socioeconomic status and education status of the parents are negatively associated with abandonment.[8] Financial burdens resulting from a loss of income and costs of transportation and food appear to be exceptional concerns for the parents.[9] In addition, it is becoming increasingly acknowledged that a fully cured child is one who has not only overcome the physical and biological challenges associated with the cancer, but has achieved psychological and psychosocial success as well.[10,11] The diagnosis and treatment of cancer is a period of great stress for these children and their families.[12] In addition to the financial burden that it imposes on the family, the treatment process is long and fatiguing and usually disrupts the social life of the child and guardians. In developing countries where cancer treatment facilities are not easily accessible to all, many families must travel great distances to reach an appropriate treatment center. However, these countries also generally lack adequate living facilities for cancer patients and their families to reside in during the lengthy treatment and recovery processes.

India, in particular, lacks sufficient and adequate housing, especially in urban areas. [13] In order to alleviate the burdens faced by families travelling to receive cancer treatment at Tata Memorial Hospital (TMH) and other hospitals in Mumbai, St. Jude India ChildCare Centres (SJICC) was established. SJICC provides free facilities and accommodations for these families to help them meet both their physical and psychosocial needs, including a secure and hygienic place to stay, transport to and from hospitals, clean water and nutritional supplements, educational and recreational activities, and psychosocial support. A recent abstract by Sanadhya et al. demonstrated that the families accommodated at SJICC had a clearly diminished rate of treatment abandonment: none of these families abandoned treatment as opposed to the 6.4% overall abandonment rate of pediatric cancer patients at TMH. [14] The complication rates in the children staying at SJICC were also low relative to those of other children suffering from the same disease. Thus, it would be interesting to investigate how the patient-families perceive SJICC and the facilities/services provided. The purpose of the current study was to evaluate patient-family satisfaction at SJICC and to conduct an audit of the facilities and services using the feedback.

Materials and Methods

Instrument development
A questionnaire was created to capture the data for this study. This tool was developed after interacting with the patients’ families, and designed specifically for cancer patient- families from poor backgrounds in India. The questionnaire was divided into two quantitative sections and one qualitative section. The first quantitative section asked the families to evaluate the facilities at SJICC and the second asked the families to indicate the importance of the respective facilities to them. Both sections were rated on a 5-point scale (Excellent, Good, Satisfactory, Needs Improvement and Poor) depicted in terms of both words and emoticons to facilitate better understanding of the questionnaire, since many families come from limited educational backgrounds. The qualitative section allowed for open-ended responses for the patient to discuss any suggestions they may have. The first question enquired about areas in need of development (“Any other areas you feel need working on or development?”), areas that have been constructive and should be replicated at the centers (“Any areas that have been especially beneficial to you and should be replicated in all our centers?”), and further feedback (“Any suggestions or comments”). The questionnaire was translated into four different regional languages: Hindi, Marathi, Bengali, and English.

Testing for reliability and internal consistency
The questionnaire was tested for reliability using a sample of 12 families that were currently staying at the center. The sample was chosen using stratified random sampling. Questionnaires of the appropriate language were handed to and collected from each family by a non-staff member. The families were instructed on how to self-administer the questionnaire. The questionnaire was re-administered after a period of approximately 15 days. The tool was found to have good internal consistency (Cronbach’s alpha= 0.6) and moderate positive correlation (r= 0.43, p<0.001, n=229).

Data collection

The tool was used as a self-administered exit questionnaire, which was completed at the end of each family’s stay starting in 2008. All families housed at SJICC who filled the tool from September 2008 until April 2012 were included into the study. After four years of data collection, the questionnaires were gathered for analyses. All the responses from each exit questionnaire were recorded onto an excel spreadsheet by a blinded researcher and checked for accuracy. Personal interviews were conducted with four randomly selected families to assess the facilities/services provided at SJICC. Ethics approval was obtained from the Board at SJICC. Individual consent was obtained from all the subjects in writing.

Statistics

Reliability analysis was done using SPSS version 15.0. Microsoft Excel 2007 was used to calculate the percentages and frequency of each response. Paired t-test and regression analyses were also carried out. P-value was set at 0.05. The respondents who did not reply to a particular question were not considered during the analyses of that question. Table 1 shows the total number of respondents and the number of respondents who answered each question.

Table 1: Response rate per question

Question Topic

Total respondents who were given the questionnaire

Total respondents who answered the question

Living arrangements

240

226

Kitchen facilities

240

227

Bathing facilities

240

227

Transport facilities

240

221

Programs

240

220

Social Issues

240

166

Interaction between staff, parents and children

240

172

Attitude of staff

240

172

Attitude of other parents and children

240

172

Atmosphere/ ethos of centre

240

170

Nutritional supplements

240

165

Qualitative inputs were translated into English by a staff member and organized into two categories for analysis: areas of benefit and areas for improvement.

Results

A total of 240 questionnaires were collected. 70.8% of the patients were male and 29.2% were female. A majority of the patients were 2 to 9 years old, with 43.2% in the 2-5 years age range and 25.9% in the 6-9 years age range. Most of the fathers (76.6%) and mothers (80.8%) had not exceeded past secondary school educational level. 55.7% of the fathers were farmers, daily wagers, government workers, unskilled laborers, or unemployed and 42.9% had private jobs or were professionals, skilled laborers, or self-employed. 94.7% of the mothers were housewives. 66.5% of the families earned a monthly income of less than Rs. 3000 and 24% earned between Rs. 3000 and Rs. 9000. 70.2% of the families had 1-2 children. 35.4% of the families were from the state of Maharashtra.

87.9% of the respondents claimed that there were no accidents during their stay at SJICC. 10.4% did not answer this question. When asked about the disease status of the child during exit, close to 60% reported a favorable progress, while 32.5 % did not answer this question. Close to 90% of the respondents found the stay at this center to be very good. Close to 8% did not answer this question. Among all domains, the lowest response rates were for the two domains, 69.17% for “social issues” and 68.75% for “nutritional supplements”- approximately one percent less than the desired response rate of the accepted 70%.

Table 2: Percentage evaluation of facilities and perceived importance of the same

Facility

Factor 1: Evaluation of facilities provided at the center* Factor 2: Importance of the facilities to the respondents*

Living arrangements

Excellent 83.3%
Good 13.3%
Very important 85.8%
Important 10.4%

Kitchen facilities

Excellent 76.3%
Good 19.2%
Very important 82.5%
Important 13.8%

Bathing facilities

Excellent 77.9%
Good 16.7%
Very important 80.8%
Important 15.4%

Transport facilities

Excellent 70.8%
Good 22.9%
Very important 77.1%
Important 17.1%

Programs

Excellent 64.6%
Good 27.1%
Very important 64.6%
Important 27.5%

Social Issues

Excellent 62.5%
Good 26.3%
Very important 49.2%
Important 21.3%
Not answered 27.9%

Interaction between staff, parents and children

Excellent 67.9%
Good 27.1%
Very important 56.7%
Important 15.8%
Not answered 27.1%

Attitude of staff

Excellent 68.8%
Good 25.4%
Very important 58.8%
Important 13.8%
Not answered 26.3%

Attitude of other parents and children

Excellent 55.0%
Good 36.3%
Very important 51.3%
Important 20.8%
Not answered 26.3%

Atmosphere/ ethos of centre

Excellent 70.0%
Good 25.8%
Very important 61.7%
Important 11.3%
Not answered 27.1%

Nutritional supplements

Excellent 66.3%
Good 24.2%
Very important 59.2%
Important 12.1%
Not answered 27.9%

*Top two responses have been reported (three responses were reported when one of the responses was ‘not answered’)

Close to 75% of the respondents expressed their readiness to come back to the center in the future. 25% did not answer this question. Around 73% showed readiness to recommend the center to others in need. 27% did not answer this question. While 40% of the returnee families did not answer the question on changes noticed at the center on coming back after first discharge, there seemed to be a contradictory finding. The proportion of respondents who claimed to have noticed changes and those who did not notice changes was almost equal (close to 30%).

On running a paired t-test between Factors 1 and 2, it was seen that there was no significant difference between evaluation of a facility and its perceived importance of the same facility. However, on running a regression analyses between Factors 1 and 2, it was seen that overall there is a strong relationship (r=0.60, p<0.001) between evaluation of a facility and its perceived importance.

Qualitative inputs from the interviews:

Cleanliness was a major factor that was beneficial to the patients and their families. One returnee family stated, “Before the cancer, our cleanliness level was about 50%. St. Jude has taught us about cleanliness and now we try to maintain 100% cleanliness….Our house is exactly like our unit [at SJICC]. We wipe everything with a towel and mop everything and any visitor who comes does not enter the bedroom in order to maintain the cleanliness.” In addition, the families appreciated the close proximity of SJICC to the cancer hospitals as well as the transport facilities provided by SJICC, which helped to greatly reduce the travel time required to access treatment.

Gas and other cooking-related facilities were also repeatedly noted to be of great importance to the families.

Other than the physical facilities provided by SJICC, the families valued the psychological support given by SJICC. The families mentioned that they benefited from the positive atmosphere of the centers; interactions with staff and other families; and the activities, discipline, and emotional support provided by SJICC. One patient’s mother was the sole resident of Center 4 – the BMT (Bone Marrow Transplant) unit – for eight days after her arrival: there were no other families there at the time, her child was admitted at the intensive care unit, and her husband was unable to accompany the two of them to Mumbai. Still, she confidently claimed, “There was not a single day that I felt that I was alone.” She said that the center manager was very encouraging, even “motherly.” This type of support allowed her to overcome the milestone of living on her own in a foreign place during this crucial period so that she could focus on taking care of her child.

Another patient’s father said, “The biggest benefit from coming here is seeing that [my son] is not the only one living with this disease. It serves as group therapy.” He also added, “It’s got a very homely environment, like the way the staff cares and is always there, and the activities that children and activity are involved in…you don’t feel that you are ill.” The patient’s mother further commented that SJICC has “built our confidence, especially [my son’s], because there was a lot of shunning back in the village and he felt stigmatized. Here he sees that other children have the disease and they get better and they go back home, and so do I.”

Finally, multiple families benefited from the disciplined lifestyle that SJICC encourages. One newly admitted family mentioned, “Here, everything is in order, there is routine, there is discipline, which is very different from the haphazard life that we are living back at our village.” Another returnee family stated that they learned discipline from staying at SJICC: “We eat on time, go to doctor appointments on time…we now lead a scheduled lifestyle.” In terms of areas of improvement, by far, the most common request from the families was to create more centers so that more cancer patients can benefit from the services provided by SJICC, apart from looking into work opportunities for fathers while they stay at SJICC.

Discussion

Patient satisfaction is generally acknowledged as an evaluation of the difference between what the patient expects and what the patient actually gets. [15,16,17] Upon assessing the patient satisfaction of the families staying at SJICC, it was found that there is no significant difference between the evaluation of a facility and the perceived importance of the respective facility. This finding suggests that the families are being provided with the facilities that they think are important to them. In addition, there is a highly significant relationship between the families’ perceptions of a facility and the importance of the respective facility to them, suggesting that the families are being provided with what they want. The families’ needs and expectations are clearly being met, which is a strong indicator of high levels of satisfaction. [18]

Patient satisfaction is an important consideration because it strongly impacts both physical and mental health-related quality of life. [19] There is evidence suggesting that satisfaction levels are associated with health outcomes by affecting health-related behaviors, patient compliance, and motivation to seek care.[16,20,21] A satisfied family may put more effort into enforcing the recommended health behaviors and may be less likely to discontinue care. Hence, the high levels of patient-family satisfaction found at SJICC may be one factor that contributes to the low rate of treatment abandonment and improved rate of recovery among these patients.

In general, most of the families rated all of SJICC’s facilities as excellent/very good and very important/important. The findings from both the quantitative and the qualitative analyses demonstrate that the families not only appreciate the material facilities arranged by SJICC, but they also value the resources for emotional support throughout the centers. Numerous studies have shown that an improvement in a patient’s psychological well-being positively affects the course of the disease and the recovery process.[22] The satisfaction of the supervising family members may translate directly into the medical consequences for a pediatric patient given their important role in restoring the health of the child. [23] SJICC’s holistic housing care also adheres well to Maslow’s Hierarchy of Needs, [24] which has proven to be an effective conceptual framework for different types of care and hospitality housing, including hospice and palliative care and a type of housing in the United States that is similar to SJICC, namely the Ronald McDonald House.[25,26,27,28] According to Maslow’s theory, humans’ most fundamental need is physiological, followed by a need for safety. Above these two basic needs are the psychological needs for love/belonging and esteem. These four “deficiency needs” are deemed as the requirements for physical and mental health, and SJICC addresses all of them through its holistic housing care. In addition to providing food, water, and secure housing, SJICC fosters a positive, lively environment and an extensive support network to welcome the families and to cultivate bonds among themselves and with the staff. Although cancer is a highly stigmatized disease in India and often elicits negative reactions by other community members, many of the families at SJICC have come to reestablish a sense of self-respect and develop respect for one another. SJICC provides the resources to help its patient-families meet all their basic needs and support them through a difficult period that can be both physically and mentally exhausting.

There are few limitations to this study. The drawback of this questionnaire-based study is that it was carried out using a self-administered tool. There were multiple questions that were not answered by many of the respondents. The questionnaire was given to the patient families just before their discharge from the center, and was therefore called the “exit” questionnaire. Every patient family that got discharged filled the exit questionnaire, but each patient family had a different exit period. Since this was a retrospective study, the research investigators had no control over the sampling/reduced response rates. The data was collected prior to the time this study was conducted, so the reason why certain questions had not been answered by the respondents is difficult to say. The patient-families at St. Jude come from different parts of the country and hence from different cultures. In addition, in order to protect the anonymity of the respondents, none of the identifying data (like patient’s name, patient file number, etc.) was asked in the questionnaire; the anonymous questionnaires were collected through a drop box and not handed manually to staff. Thus, it is not possible to know which patients did not answer the questions and the specific reasons for the high nonresponse rate. However, the response rates for the two domains of “nutritional supplements” and “social issues” were marginally less than the accepted response rates of 70%. In addition, the qualitative interviews threw light on how St. Jude helped these families socially as well.

Although there was some missing information, this study used four years’ worth of data, which provides strong support for its findings. The questionnaire was checked for reliability, and the use of pictorial ratings reinforced the patients’ understanding of the ratings to help with self-administration of the tool. Another strength of this study is that it was double-blinded to prevent potential staff bias.

This study shows that there are high levels of patient satisfaction at SJICC, adding to the previous finding of low levels of abandonment among SJICC’s residing families. The facilities and psychological support provided at SJICC seem to play a key role in helping this underprivileged population through the cancer treatment and recovery process. SJICC’s high patient satisfaction levels demonstrate that this type of housing care is effective and could be replicated.

References

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  1. This is a well researched article. It clearly exhibit the need for many more organisations like SJICCC in the developing economies where public health system does very little for the poor and needy. This will serve as a gentle reminder to the Government and all wellwishers of this particular NGO are assured of the impact of the Program they have suppported

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