The Family Members’ Experience of Care

Questions: It is a written assignment on qualitative research design on the topic: "What is to be like a family member of disabled child in society?" 1. Identify whether the planned study would be underpinned by an interpretive, critical or post-modern perspective. 2. Provide a justification and critique of the methodological approach you have selected in relation to the question/problem. 3. Discuss how the theoretical and philosophical underpinnings of the methodology would guide the research study. Answers: Introduction This research proposal exhibits the skills and expertise of the author in terms of utilizing qualitative exploratory research approaches in rationally undertaking prospective research study in the context of analyzing facts regarding the research question. The framework of the research design requires configuration with the effective utilization of interpretive phenomenological methodology for evaluating the practical experiences of a family member while providing regular assistance to a disabled child. The identification of the methodological strategy for the research study will require critical analysis and evidence-based justification from the academic literature. The theoretical and philosophical justification of the selected methodology will require discussion to emphasize the uniqueness of chosen research approaches in comparison to other evidence-based strategies presented in the academic literature. The discussion of the study methods and summary of the research design (in co nclusion) will necessarily incorporate in this research proposal for further consideration. The research study will require qualitative (exploratory) research design in terms of organizing semi-structured interviews with the family members of disabled children across various geographical locations. The interviews with the family members of disabled children require execution across a friendly environment and while distributing questionnaires in a specified format while allowing the family members to share their experiences, perspectives, contentions and feelings while assisting the disabled children in terms of accomplishing their requirements of daily living and providing them personal care on a routinely basis. This exploratory research study might prove to be a significant tool in terms of enhancing the quality of life of the disabled children while enhancing the awareness level of their caretakers for effectively mitigating the physical, emotional and psychosocial restrictions of the affected children across the community environment. The limitations in terms of selecti ng the family members of the children affected with any particular deformity and obtaining the desirable sample size might influence the authenticity of the findings of the prospective research study. Identification and Justification of Selected Study and Methodology The care taking of a child affected with birth defect extends serious implications on the entire family members (Lemacks, Fowles, Mateus, Thomas, 2013). The state of depression and grief experienced by the family members of the disabled children adversely influence their quality of life that resultantly degrades the health patterns and wellness outcomes of the affected children across the community environment. Therefore, parents of disabled children necessarily require practicing effective coping strategies for assisting their disable children in overcoming their individualized challenges and accomplishing their care requirements. Research study by (Wei Yu, 2012) indicates the increased pattern of divorce among the parents of the children affected with emotional disabilities. However, the mothers of children affected with secondary disabilities experienced unemployment and subsequent financial crisis. This rationally indicates that different types of disabilities among children ex tend variable implications on the lives of their caretakers across the community environment. Research findings by (Woodgate, Edwards, Ripat, Rempel, Johnson, 2016) reveal limited knowledge of researchers in terms of evaluating the experiences of siblings of disabled children with complex care requirements. Indeed, understanding the experiences and feelings of the siblings of disabled children might provide a significant insight to the academicians, nurses and clinicians in terms of promoting their participation in the care of the affected children. Research findings by (Sola-Carmona, Lopez-Liria, Padilla-Gongora, Daza, Aguilar-Parra, 2016) reveal the elevated interest of the research community in terms of evaluating the repercussions of the psychosocial as well as physical abnormalities of children on the well-being of their family members across the community environment. The family members of the children affected with pattern of blindness remain predisposed in terms of experiencing psychosocial variations leading to positive or negative effects in their lives across the community environment. These experiences profoundly influence the patterns of care and assistance of disabled children across the residential settings. The family members of the disabled children require overcoming the adverse influence of the challenges that they face while care taking their disabled children in the context of elevating their self-dependence and autonomy while following the rehabilitative interventions. Evidence-based research literature emphasizes the requirement of evaluating the rate of satisfaction, anxiety levels, mental well-being and employment status of the family members that remain consistently engaged in extending care and assistance to their disabled children across the residential settings (Sola-Carmona, Lopez-Liria, Padilla-Gongora, Daza, Aguilar-Parra, 2016). The subjective interpretation of these experiences can provide additional insight to the healthcare practitioners in terms of elevating the capacity and awareness levels of family members for reducing the frequency of dependence of disabled children across the home care environment. Research findings by (Ã… ¾imek, Ta, Karabulut, 2015) indicate the pattern of social isolation experienced by the families of the psychologically or physically disabled children in the context of their financial constraints, lack of quality time and stigmatization across the community environment. These manifestations predominantly influence the quality of care for disabled children and their prospective development as well as wellness outcomes. Therefore, tracking the experiences of the family members of the disabled children is highly necessary in the context of devising evidence-based mitigating strategies for effectively utilizing their assistance in reducing the intensity of chronic disabilities of the affected children. Evidence-based research literature indicates the challenges faced by the family members of the disabled children in terms of their lack of awareness regarding the service options for dealing with the disability of their wards (Carter Thomas, 2011). These challe nges further include the difficult accessibility to the healthcare facilities of the family members of the disabled children and their insufficient knowledge regarding the clinical interventions required for dealing with the difficult circumstances in relation to their childrens disabilities. The root cause of these experiences and corresponding mitigating strategies require further exploration through prospective research studies in the context of improving the living standard and happiness patterns of the families that extend care and assistance to the disabled children. Family members of the children affected with various disabilities consistently experience the psychosocial load (Sadati, et al., 2015). The research findings reveal that mothers of disabled children remain as the most marginalized individuals across the community environment. Therefore, these mothers experience the pattern of depression and mental distress that adversely influences the care of their children leading to the destabilization of their families. Therefore, evaluation of this marginalization of mothers of disabled children highly necessary in the context of developing strategic interventions for improving their experience with the disabled children and subsequent elevation of their psychosocial as well as mental health patterns. Evidence-based findings by (Allard, et al., 2014) reveal the requirement of inclusion of family members of the children affected with neuro-disability in their medical decision making for elevating their wellness outcomes. For example, family membe rs of the neurologically disabled children can closely monitor their mobility patterns and share the findings with healthcare professionals in the context of facilitating the configuration of assistive interventions for elevating the self-sufficiency of the affected children across the community environment. Furthermore, the family members of the disabled children can very well identify their emotional as well as social well-being and these findings assist the clinicians in configuring community-based interventions for improving the health status of the affected children. These evidence-based findings further emphasize the requirement of conducting exploratory studies for evaluating the positive and negative experiences of the family members of the disabled children for effectively utilizing them in the context of increasing the patterns of their self-dependence. The research study by (Blackburn, Spencer, Read, 2010) reveals the significance of conducting the survey in terms of accomplishing family resources questionnaire to evaluate the adverse manifestations experienced by children affected with patterns of disability across the community environment. The family members of the disabled children prove to be the only caretakers having the privilege to observe and identify the adverse manifestations of their childrens disabilities. Therefore, tracking the experiences of family members of disabled children through exploratory research studies is of paramount importance for identifying the individualized challenges experienced by them in relation to their physical as well as psychosocial abnormalities. Evidence-based research literature specifies the effectiveness of conducting studies while interviewing the family members of the children affected with autism, Down syndrome, cerebral palsy and sickle cell anemia in the context of determining th eir responses to the patterns of ableism across the community environment (Neely-Barnes, Graff, Roberts, Hall, Hankins, 2010). The findings of similar studies advocate the requirement of empowerment of family members of the affected children in terms of responding to the social biasing against them for brining the social change in relation to improving the quality of life of the disabled children. These studies further reveal the significance of conducting semi-structured interview sessions with the family members of disabled children in various groups for determining the social challenges that they face while extending care and assistance to the affected children. The clinical study by (Muga, 2003) evaluates the awareness patterns of the caregivers of the disabled children while interviewing them through ten questions in the context of evaluating their knowledge regarding behavioural orientation of their wards under the influence of their chronic as well as congenital disease conditions. Effective enhancement of these awareness patterns, significantly required for improving the care strategies for the children affected with patterns of seizures as well as various ophthalmic and mental conditions. Therefore requirement of exploration of the experiences and knowledge of family members (i.e. caregivers) of the disabled children justified with these evidence-based findings for effective enhancement of their wellness outcomes. Evidence-based research literature reveals the significance of conducting surveys through focused groups in relation to evaluating the psychosocial profile of the disabled children and mental and social status of their family members across the community environment (HSDR, 2014). The research survey by (Resch, et al., 2010) utilized focussed groups to identify the themes in terms of potential barriers to the establishment of health and well-being of the parents of children affected with various psychosocial as well as somatic disabilities. These barriers attribute to the inaccessibility of services and information, economic constraints, and support by community, school as well as other family members in terms of accomplishing the individualized requirements of the affected children. Prospective exploratory research studies are necessarily required for the further evaluation and analysis of these themes in the context of improving the caring experience of the family members and the effective enhancement of wellness outcomes of the disabled children. Customizable interview sessions with the disabled children and their families offer great advantage in terms of evaluating their experiences with the objective of configuring assistive care strategies for the affected children (Teachman Gibson, 2013). The findings of the research study by (Hall, et al., 2012) advocate the significance of conducting focused group sessions with the family members of the disabled children in the context of identifying their stress levels with the effective utilization of various behavioural mechanisms. Indeed, this research study also proved effective in analyzing the patterns of problem solving skills and coping strategies utilized by the caretakers of disabled children in the context of elevating their wellness outcomes. These research outcomes provide further insight in terms of analyzing the significance of conducting exploratory interview sessions with the family members of disabled children for effectively utilizing their experience in the enhanc ement of wellness patterns of the affected children across the community environment. The exploratory research study by (Sharkey, et al., 2016) utilized the focused groups mechanism for conducting interview sessions with the parents of the disabled children in the context of evaluating the possible communication barriers to the identification of their healthcare priorities. The findings of the research study reveal the significance of parental intervention and experience with their disabled children in terms of establishing their positive communication with the healthcare providers to facilitate their health outcomes across the community environment. The semi structured interview sessions with the families of the internationally adopted children conducted by (Lesens, et al., 2012) reveal the requirement of exploring the history of the family members and their patterns of attachment with the adopted children to facilitate the pace of their care and development and mitigation of their healthcare challenges and psychosocial disabilities. Indeed, the exploratory interview sessions prove to be highly significant in subjectively evaluating the relationship patterns and behaviour of the parents of children affected with various psychosomatic disabilities. These behavioural themes significantly assist the healthcare practitioners in terms of devising evidence-based strategies for enhancing the patterns of independence, autonomy and self-sufficiency among the disabled children. Evidence-based research literature advocates the contention related to the extension of semi-structured interview sessions and workshop questionnaires for effectively mitigating the state of anxiety of their family members while extending care and assistance to their children affected with feeding problems under the influence of their patterns of cerebral palsy (Hettiarachchi Kitnasamy, 2013). Therefore, various research studies advocate the contention related to the requirement of evaluating the experiences of the family members of the disabled children in exploring their health care challenges and individualized requirements in the context of elevating their quality of life and improvement of wellness outcomes. Furthermore, the qualitative research methodology related to the organization of semi-structured interview sessions profoundly assists the medical professionals in evaluating the experiences of caregivers to their disabled children, as evidenced by a range of exploratory studies documented in the research literature. Therefore, the present research proposal regarding the evaluation of family members experience of care of their disabled children justified in the light of the facts prescribed in evidence-based research literature. Sampling and Recruitment Strategies The effective utilization of mixed-methods and data-linked strategies offers great advantage for systematically sampling the research information in the context of obtaining the desirable outcomes (Schatz, 2012). The semi-structured research techniques provide privilege to the interviewers in terms of analyzing the details of the experiences, beliefs and perceptions of the interviewed subjects for their effective utilization in the statistical analysis in accordance with the study conventions. Furthermore, organization of interview sessions through skilful questioning by the nurse professionals assists in gathering significant information from the patients (Holloway Wheeler, 2010). Therefore, sampling techniques in the present research study will follow the pattern of semi-structured interviews while incorporating skilful questioning strategies for systematically capturing the experiences and behavioural patterns of the family members of the disabled children in accordance with the study requirement. However, the recruitment of study subjects will follow the criteria of registering family members of the children affected with a wide range of chronic psychosocial and somatic abnormalities. The sample size for the research study will attribute to the enrolment of the family members of 450 disabled children from the community environment. The recruitment of the research participants will not vary in accordance with their age patterns or psychosocial profile; however, the selection of the caretakers of the children affected with serious and debilitating congenital conditions preferred in accordance with the study protocol. Data collection methods The research findings by (Haig, 2015) emphasize the systematic utilization of questionnaires in qualitative research studies for collecting the research data in accordance with the study conventions. The present research study will utilize the semi-structured interview sessions with the assistance of systematic questionnaires for evaluating the experiences, challenges and beliefs of the family members of the children affected with various debilitating disabilities. Evidence-based research literature advocates the significance of conducting semi-structured interview sessions with the utilization of open-ended standardized questions for receiving unbiased responses from the research subjects (Brdart, Marrel, Abetz-Webb, Lasch, Acquadro, 2014). These semi-structured sessions prove to generate the outcomes measures validated by the responses received from the research subjects on the study questionnaires. Furthermore, semi-structured sessions provide privilege to the subjective interpre tation of the responses of the research subjects for appropriately evaluating the retrieved information in the context of retaining precision in the research findings. The present research study will utilize the same convention for recording the data in terms of responses of the family members of the disabled children. Data management PPA (Privacy-Preserving Analytics) demonstrator proves to be highly effective in terms of effectively managing the confidential data received from various exploratory studies across the R software through web-interface (Sparks, et al., 2008). The present research study will employ similar data management software in the context of safeguarding the confidential research data from theft or accidental leakage. The data management strategies for the present research study will also take into account the systematic retrieval of the recorded information for its strategic analysis through the statistical intervention. SPSS software will also require utilization for the present research study in relation to precisely generating the statistical evidence from the incorporated information. Data analysis Visual mining strategy proves to be highly effective for systematically analyzing the exploratory data obtained from qualitative research studies (Huang, et al., 2015). The similar divide and conquer approach requires utilization in the present research study for systematically segregating the received data into uniform subsets requiring visual evaluation, refinement and comparative analysis. Ethical considerations Institutional ethics committees offer great advantage in terms of obtaining their ethical approval for conducting various research studies while safeguarding the health, wellness and dignity of the enrolled subjects (Kuyare, Taur, Thatte, 2014). The present research study also intends to obtain ethical approval from the concerned ethic committee prior to enrolling the research candidates in accordance with the specified conventions. The research study will also take into consideration that each research participants must sign the informed consent form at his/her own will after thoroughly understanding the study protocols. The researchers will monitor the stress levels of the candidates while interviewing them and instantly cease the interview session in case of recording of patterns of psychological stress among the study subjects during the interview sessions. The protocols of the proposed research study will allow the participants to exit the study at any point of time at their ow n will without specifying any reason. The interview sessions will require organization in a friendly environment in the context of encouraging the research participants in sharing their contentions and experiences in an unbiased manner and without any compulsion. Furthermore, the recruitment of research subjects should remain unbiased and evidence-based strategies require execution to minimize any psychosocial or physical harm to the enrolled subjects during the execution of the research study. The confidentiality of the personal information of the research subjects requires prioritization by the researchers and strategies to ascertain the safety of confidential information requires effective implementation during the course of study execution. Rigour Validity Systematic utilization of variable data collection methods, variation in sampling strategies and execution of peer checks prove to be highly significant for elevating the rigor of the important research data. The proposed research study will effectively utilize similar conventions for retaining the precision of the research data received from the semi-structured interviews. The utilization of evidence-based sampling conventions and data analysis techniques will facilitate the generation of study results with minimal standard deviation. The systematic sampling approaches attributing to mixed-methods and data-linked strategies will necessarily ensure the validity of the research findings in terms of their further utilization in prospective research studies for evaluating the role and contribution of family members of the disabled children in facilitating their psycho-socio-somatic enhancement. Conclusion This research proposal significantly emphasizes the requirement of conducting an exploratory study in relation to evaluating the experiences of the family members of the disabled children for enhancing their health and wellness outcomes. Evidence-based research literature indicates the significance of organizing qualitative studies with the effective utilization of semi-structured interview approaches for systematically tracking the experiences of the family members of the disabled children with the core objective of devising strategies for elevating the quality of care and therapy for the affected children. The rationally of the proposed study justified with the evidence-based literature; however, limited conclusive information available for understanding the appropriate utilization of the experiences of family members of the disabled children in terms of configuring their care strategies across the residential settings. Partnership of healthcare professionals with the family member s of disabled children is highly necessary for improving their wellness outcomes and therefore, the proposed study requires execution for tracking the relationship patterns of the family members with their disabled children across the community environment. The proposed research study might experience limitations in terms of enrolling the research subjects and subjectively tracking their responses; however, the study bears the potential of providing considerable insight in relation to the utilization of experiences of caretakers of the disabled children while configuring care strategies for them across the residential settings. 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