Experiences of Pediatric Cancer Survivors

Experiences of Pediatric Cancer SurvivorsExploring the experiences of pediatric brookcer survivors in Karachi, Pakistan.Muhammad Tahir SaleemThis chapter presents the discipline design, its setting, the place in technique, the entropy accruement accomplish and the details of data analysis. In addition, the respectable considerations and learn limitations be also discussed in the chapter.MethodologyQualitative methods are utilized to generate knowledge some a new arena of interest. Qualitative enquiry methods are mostly descriptive in nature to bring out the essential meaning of behaviors and attitudes (Polit Beck, 2008). As there is no documented usher for the issues encountered by crabby person survivors in Pakistan, the search worker felt that the question roughly the experiences of malignant neoplastic disease patients and their needs for care could be best upraised by play alonging a naturalistic inquiry using a qualitative methodology.Study DesignThe descri ptive explorative qualitative design was used in this prove to explore the experiences of survivors of pediatric malignancies. In the emergence of developing new knowledge peerless or more(prenominal) than characteristics of a specific population can be examined by utilizing descriptive designs whereas, preliminary designs are used when an in-depth exploration of a single process, covariant or concept is required (Wood and Ross-Kerr, 2011). Hence, in piece to delineate the characteristics and conduct an in-depth exploration of the phenomenon of survivorship, the descriptive exploratory design was employed for the study. This design offers flexibility to generate knowledge by ensuring less control of the detective over the variable and allowing the manifestation of subjective experience of the cancer survivors.Study SettingThere is hard amount of evidence that over the past decade the incidence of lymphoma is on the increase in Karachi, (Bhurgri, 2004), and this is every bi t applicable to all pediatric cancers. Karachi is a metropolitan city with a population, part of diverse cultural, socioeconomic and educational backgrounds from all over Pakistan. The study site, the Aga Khan University Hospital (AKUH) is located in Karachi and it receives patients from diverse fiscal and geographical backgrounds from all over Pakistan. These characteristics make AKUH suitable as the study setting.Study populationThe pediatric oncology follow-up clinics of AKUH were identified as suitable places to study a variety of individuals who had survived pediatric cancers. All pediatric patients registered with the department of pediatric oncology AKUH were the study population. The study participants were the follow-up patients in the remission period who survived pediatric cancer and were discharged from the oncology clinic after completion of their anti-cancer manipulation.Sampling TechniqueThe purposive sampling technique is used in the present study. Despite the fact that a non-probability sample is less likely to be a representative of each individual of the population, in order to develop a rich and holistic understanding of survivorship, the sampling decision would be based on the developmental and theoretical needs of the phenomenon of interest (Polit Beck, 2008). Therefore, based on the tecs prior knowledge about the population, participants who were particularly knowledgeable about the issue under study were chosen purposefully. Purposive sampling that deliberately reduces variation and permits a more focused inquiry for usual cases (Polit Beck, 2008), such as previously treated pediatric cancer patients (in remission), would bring qualitative information enriched with their lived experiences about cancer and its sermon.Sample SizeRecruitment of the participants continued until theoretical saturation became apparent. Theoretical saturation is a point in time achieved in data collection process when no new applicable concepts are rec ognized in comparison with the data already produced and researcher may only summon repetition of previously collected data (Burns Grove, 2009 Gerrish Lacey, 2010). Male and fe young-begetting(prenominal) participants were randomly chosen at the pediatric oncology follow up clinics. Eight participants, four male and four female were questioned after taking certain consent at pediatric oncology follow-up clinics. Ages of the patients ranged between 08-25 classs. The length of time since completion of chemotherapy and radiation therapy was one year. The selected patients were in remission after having completed anticancer treatment for at least one year so that research would reveal the rich experience of the individuals who were treated and were disease free after the treatment regimen. Patients were cognizant about their diagnosis and the treatment and subsequent after the treatment.Inclusion CriteriaBoth male and females cancer survivorsChildren Age 08-16 yearsDiagnosed as having had Pediatric CancerHave had completed anti-cancer treatment regimenIn remission for at least one year after treatmentExclusion CriteriaChildren who are on active treatment or relapsed after completion of treatmentChildren who did not sign voluntary sensible consentData CollectionIn-depth references are used when the researcher has a list of topics that are undeniable to be explored. Interview Guides are the list of areas or questions to be covered with each participant. These guides may be pilot tested before embarking upon the actual data collection (Polit Beck, 2008). For the study under discussion, the researcher has watchful a written hearing guide with Urdu translations that are attached as Appendix A. While preparing the interview guides a previously developed questionnaire for oncology was referred to (FACIT, 2010). The prepared interview guides were sent to the committee members for their opinion. The interviews allowed the researcher to explore the research to pic in a broader way. The venue for the interview was an allocated room at pediatric oncology clinic at AKUH. In addition, the technique of interview permitted the researcher to probe on the issues which needed further exploration and clarification more in detail at the same time of interaction with the participant. Immerging ideas were also incorporated in the future session of data collection to enhance the richness of the data. It allowed the respondents to recall their memories and bring out the rich experiences in detail. The respondents expressed their feelings and perceptions in the context of the topic under discussion. These first hand reports of the participants, probing of the researcher during interview and researchers profess reflections for nonverbal clues helped in collecting enriched data from the survivors of pediatric cancers.Each interview took about 30 to 45 minutes. A female moderator conducted the interviews for female pediatric cancer survivors. Interviews w ere recorded on an audio recorder with pseudo names. The pseudo names were used at transcription process to certify confidentiality. Demographic information e.g. age, gender, native area, history of ailment like diagnosis and treatment, length of treatment and treatment modalities used during the treatment process were also recorded at the beginning of the interview. The interviews were transcribed verbatim in Udru Language and translated by the researcher in such a way that no meaning was sacrificed.Data AnalysisThe audio-taped interviews in Urdu were transcribed word by word and analyzed manually. The interview generated codes, categories and/or sub categories and then themes, which in qualitative research are said to be broad units of information that consist of several codes mass to form a common idea (Creswell, 2013).The researcher listened to the recordings several times in order to absorb the data to generate accurate transcription. To analyze the collected material during data collection, the recorded interviews were transcribed in the form of a formatted document for manual thematic analysis. The researcher then reverberated in the data to take similarities and differences of ideas. By doing this various specific ideas were identified which were labeled as codes. The codes were put under the sub categories and categories. The ideas or codes were marked very carefully in a way that prevented the researchers own frame of mind from touch the interpretation of the collected data to reduce bias and ensure bracketing (Tufford Newman, 2012). Careful reflections were do to keep researchers own thoughts and understandings from affecting the analysis (internal validity). Various identified ideas were then grouped together by axial cryptanalytics in order to make tentative categories of themes. As the process of analysis proceeded, these tentative codes or categories were merged to form common themes under the guidance of the research supervisor to avoid gaps in qualitative demonstration of the data. The valuable input of the research supervisor also shielded the analyses process form the personal reflexiveness (biases in analysis due to personal assumptions, values and beliefs) of the novice researcher. To ensure the credibility and consistency of the analysis, ageless input from the external supervisors (committee members) were also incorporated. A chronological record of all the activities of the study was make by the investigator in order to ensure the dependability/audibility of the study. To safeguard the transferability of the research, the study settings, context of the study and demographics of the patients with their diagnosis and treatment modalities were noted to enable the future investigators to replicate the study (Polit and Beck, 2008).Ensuring trustworthiness and quality of the studyRigour in the qualitative researches is defined as the means by which the researcher shows integrity and competency (Aroni et al., a s cited in Holloway Wheeler, 2010). Trustworthiness to maintain rigour in the study was maintained ensuring credibility, dependability, conformability and transferability (Lincon Guba, 1985). credibilityCredibility is the extent to which the data and interpretation of the research are grounded in the events quite a than the inquirers personal construct (Lincoln Guba, as cited in Polit Beck, 2008). In other words credibility of a study is ensured when it presents such faithful interpretations of participants experiences that they are able to recognize them as their own (Hall Stevens as cited in Long, Johnson, 2000). A conscious attempt was made by the researcher to maintain credibility during the study. The researcher tried his best to remain involved with the participants during interviews rather than being with them only to ask questions and record the answers. It was done by helping participants to elaborate their lived experiences and allowing them to recall the events tha t occurred during the diagnosis and treatment. Triangulation was done by taking notes during the interview, recording of the demographics and botch up checking of the data by the research supervisor. dependabilityDependability refers to the reliability of the collected data over time and over conditions in which the research is done (Lincoln Guba as cited in Polit Beck, 2008). It determines whether the process of study was consistent and reasonably stable over time. The researcher attained this by working on the research plan with the research supervisors and committee members, by taking approval from the ethical review committee of the institute and by submitting the updates of the research process to the supervisor and the committee members. The researchers personal record, notes during the interview and transcription records were kept chronologically so that the process of the study can be traceable.ConformabilityConformability refers to objectivity to control the quality and adequacy of the results and interpretation. The accuracy, relevance and meaning of the data are appraised by two or more independent people for congruence (Polit Beck, 2008). Conformability is achieved by having the input of the supervisor and the committee members at every pervert of the research. All the interviews and their transcript were cross checked by the supervisor. The thematic analysis by the researcher was cross checked by the supervisor for congruency and objectivity of the outcome. The researcher also maintained the records of unrefined data, transcriptions of the interviews, and also the records for synthetic thinking and analysis of data.TransferabilityTransferability refers to the generalizability of the data and the results that came out as a result of subsequent analysis ((Polit Beck, 2008). In order to make the result applicable to other settings, the researcher interviewed male and female cancer survivors at the follow up clinic of the pediatric oncology. Th e demographics of the participants, who had different socio-economic status showed that they were from different backgrounds as they belonged to the provinces of Khyber Pakhtoon Khwa, Sindh, Baluchistan and lower Punjab. To maintain homogeneity, four male and female were interviewed. Therefore, the consumers of this research can use the results at different places in similar context.Ethical consideratenessWorld Medical Association has put forward a statement of ethical principal as Declaration of Helsinki to guide medical research involving human subjects (World Medical Association, 2014). To fulfil the requirement of the article 22 and 23 of recently revised document of Declaration of Helsinki, a research proposal was made and submitted to the Ethical Review Committee (ERC) of AKUH. Approval from the managing director of Nursing Services (DNS) and also from the Medical Director (MD) of AKUH was taken to conduct the study and was submitted to the ERC with the research proposal. A pprovals from the DNS and the MD are attached as Appendix C and Appendix D respectively. The participants right of autonomy was maintained by having a consent form subscribe by the participant and the parent of each participant after openhanded complete information about the study and its significance. Ascent form with Urdu translations is attached as Appendix B and Appendix D respectively. A confidential ID number for further identification was assigned to each participant and to the corresponding data. As research thesis is one of the requirements of MScN program for Aga Khan School of Nursing and Midwifery the fund for the study was already allocated in the Masters program budget. The thesis budget is attached as Appendix G. A formal approval was granted to conduct the study by ERC of Aga Khan University.Summary of the chapterThis chapter presented the methodology for the study, giving a brief description of the study design, study setting, and sampling technique. The chapter a lso included the data collection and data analysis plan. Ethical considerations for conducting the study are discussed in the end.ReferenceBhurgri, Y. (2004). Karachi Cancer Registry Dataimplications for the discipline Cancer Control Program of Pakistan. Asian Pac J Cancer Prev, 5(1), 77-82.Burns, N., Grove, S. K. (2010). Understanding nursing research Building an evidence-based practice. Elsevier Health SciencesCreswell, J. W. (2013). Research design Qualitative, quantitative, and mixed methods approaches. Sage Publications, Incorporated.FACIT (2010). Functional Assessment of Cancer Therapy world(a) (constitutes the core of all subscales the FACT-G can be used with patients of any tumor type), 2007. Retrieved on 11-11-2013Retrieved from http//www.facit.org/FACITOrg/QuestionnairesGerrish, K., Lacey, A. (2010). The research process in nursing. John Wiley SonsHolloway, I. S, Wheeler (2010). Qualitative research in nursing and healthcare. Wiley Blackwel. com.Tufford, L., Newman , P. (2012). Bracketing in qualitative research.Qualitative hearty Work,11(1), 80-96.Long, T., Johnson, M. (2000). Rigour, reliability and validity in qualitative research.Clinical effectiveness in nursing,4(1), 30-37.Polit, D. F., Beck, C. T. (2008). Essentials of nursing research Appraising evidence for nursing practice. Wolters Kluwer HealthWorld Medical Association (2014). Declaration of Helsinki. Retrieved June 30, 2014, from http//www.wma.net/en/30publications/10policies/b3/Wood, M. J., Ross-Kerr, J. (2010).Basic steps in supply nursing research From question to proposal. Jones Bartlett Publishers.