Providing Healthcare For Children With Learning Disabilities - Research Paper Example

Providing Healthcare For Children With Learning Disabilities Abstract This study aims to find out the parent/carer’s experience, seek their views and opinions about services offered to their child with learning disabilities in Accident and Emergency (A&E) hospital in London Borough of Lambeth. For the purpose of this project, the researcher will attend 2 to 3 hospitals in London Borough of Lambeth to compare findings. The researcher will use a phenomenological approach with semi-structured interview as a data collection tool for the whole study. The expected timescale for the entire research will be 12 weeks. A non-probability sample will also be considered and used to recruit 10 participants for the main study from the London Borough of Lambeth; 1 participant will be utilized in a pilot study. Data will be tape-recorded in-line with participant consent. The data will then be transcribed and analysed to allow the researcher to produce credible findings and highlight the key concepts. Finally, the findings will be disseminated to parents and guardians, policymakers and health and social care students at London’s South Bank University. Introduction Research studies have been conducted and indicate that the largest barrier in service in A&E hospital settings occurs within parents or guardians caring for children with a learning disability. Specifically, Coyne (2003) notes the main barriers were within communication, ignorance, and negative attitudes. Murray & Hallett (2000) state in their research that health professional/providers in hospital settings often used ‘doctor terms’ i.e. technical terms and terminology that was confusing. There were also deficits in health care provider’s confidence, lack of knowledge and lack experience in working with children with behavioral problems. Areas of consent, adapted facilities, proving care in patients' best interests and lack of information given to parent/carer’s on admission were other issues that were raised (Balen et al, 2001). Similarly, studies on children’s medical encounters in NHS reported that A&E hospital nurses, compared with the general population, had more negative attitudes toward children with cognitive impairments as those parents felt excluded from information and the decision-making process (Hallstrom & Elander, 2004). It appears that the practice of speaking with children with learning disabilities and their parents, such as listening to them and involving them in the decision-making process, is not widespread among health professionals in the A&E hospital setting (Department of Health, 2003a). Indeed, there are few integrated and coordinated services to meet their needs. Ultimately, all those working with children with disabilities and their parents should feel valued, and receive the training and support needed to carry out the work competently and confidently. To ensure that children with learning disabilities and their parents are receiving the best possible care in A&E hospital setting, further research is needed to deepen our understanding of parents’ lived experiences, views and opinions about services offered to their children with learning disabilities in A &E hospital setting. From this planned study, the researcher ascertained that the findings will offer support, add to their knowledge base and improve the quality of life to parents/carer’s with a disabled child in an A&E hospital setting. Literature review Cormack (2000) states that the literature review is a critical review of previous literature relating to the research topic. In support of this study a number of related research articles were critiqued from CINHAL, BIDS, ASSIA, PsychINFO, EMBASE, MEDLINE, and ClinPsych online databases. The literature review was carried out to put the current study into the context of what is already known about the subject. Since 1989, the Children Act in England has encouraged hospital healthcare workers to listen to the views of parents/carers of children with learning disabilities and involve them in discussions pertaining to their child’s care (Barnardo’s,2004). Increasingly, there is general acceptance that the parents or guardians have the right to be consulted over decisions affecting them and to have their views taken into consideration by a hospital staff (DOH,2003a).This situation may change with the advent of the Children’s National Service Framework (NSF), which is a 10-year strategy that intends to improve the health and social care services for children with disabilities and their families through establishing national standards and further research. The Children’s NSF states explicitly that hospital services should be child-centred and that children with disabilities and their parents should be consulted and involved in all aspects of their care (DOH, 2003b). The white paper sets out government commitment to improving the life of those with learning disabilities and their families. The white paper works closely with local councils, health services, voluntary organisations, and children with learning disabilities and their families to provide new opportunities for those with learning disabilities to receive quality health care emjoy active lives (Hall et al, 2007). The white paper has recognised a few major problems: poorly coordinated services with families that have disabled children, insufficient support for parent/carers -- particularly those caring for people with complex needs, children with learning disabilities and their families often have little or no choice or control over many aspects, substantial health care needs of children with learning disabilities are often unmet and finally, hospital(NHS) services are not tailored to the needs and abilities of the individual (Nachshen et al, 2003). The white paper sets out to achieve these major problems by a long term implementation programme at the national level (Prazak, et al, 2004). The specific amendments include: supporting the implementations, a learning disability task force that will advise the government on implementation, an implementation support team that will promote changes at regional and local levels, learning disability partnership boards, and social services that will carry out inspections in the hospital, care homes and learning disability services (Prazak, et al, 2004). Similar research has showed that six groups brought together consultation meetings, and people that were present and involved were children with learning disabilities, their parents, carers, local authority, NHS, and voluntary sector representatives and researchers. This meeting made children with learning disabilities and their parents that attended the group feel that they have a voice and that their opinions will be counted (Kenyon, 2003). Yet, the original Green Paper ”every child matters” (2003) proposed that local public services should focus on four key themes in their joint development of services that would enable children with disability in their area to make progress against five key outcomes defined by Section 10 of the Children Act 1989. The green paper stated that families and carers looking after disabled children are the most crucial influence on their children’s lives. Services should be provided that enable parents, families and carers to effectively support their children (Shakespeare, 2006). Ultimately, all those working with children with disabilities and their parents should feel valued, and receive the training and support needed to carry out the work competently and confidently. To ensure that children with learning disabilities and their parents are receiving the best possible care in A&E hospital setting, further research is needed to deepen our understanding of parents’ lived experiences, views and opinions about services offered to their children with learning disabilities in A &E hospital setting. From this planned study, the researcher ascertained that the findings will offer support, add to their knowledge base and improve the quality of life to parents/carer’s with a disabled child in an A&E hospital setting. Aims and Objectives: The primary aims of this study are to obtain an insight into the views, opinions and lived experiences of the parent or carer’s interpretation of the care they are receivie during admissions and discharge in Accident and Emergency and Children emergency hospital settings in the London Borough of Lambeth. Study objectives are: To find out the needs and desires of parents with disabled child within the London borough of Lambeth  To gain an insight into parents’ experiences and the safe practices that occurred when their child was admitted in an Accident and Emergency hospital setting To obtain insight to the difficulties they encounter in Accident and Emergency services To gather information that can be used to inform service planning and development To find out the views and the level of support is offered To seek out their views and opinions on how the services can be improved.  Research design and methodology For this study, the researcher chose to address the research aim through a qualitative methodology and a phenomenological approach. According to Parahoo (2006) qualitative research is information that is based on personal interpretation and evaluation. This type of data is used in research involving detailed verbal descriptions of characteristics, cases, and settings. It is based on subjective and emotive terms and is often presented as the author’s value judgements. Qualitative research uses observation, interviewing, and document review to collect data. The chosen method for qualitative investigation will ultimately be carried out through a semi-structured interviewer method. This interview method will allow the researcher to guide the parents through the interview by engaging them in a conversation that asks questions related to research specific topics. This method will allow the researcher to “speak” directly to the respondent. The researcher chose individual face-to-face interviews because they are more convenient for both the interviewer and the interviewee; they are less time consuming and the reaction of the interviewee is made available. This method also provides flexibility. The disadvantages of using this method are that the participants might not have the time to stop, or be willing to take part in the study (Polit, & Beck, 2004). Phenomenological approaches are the appropriate method because they will give a description of a phenomenon by allowing insight into the parent or guardian’s lived experiences, views, opinions and perceptions. The approach will also support the researcher to gain an insight into the parent/carer’s perception, thoughts, desires, and emotions; it will also allow the researcher to understand and explain based on an analysis of the parents’ direct responses. (Lowe, M. 2007). The semi-structured interview will consist of 10 participants, recruited from parent/carer’s with children with learning disabilities, who have been admitted, discharged, or are receiving service from health care professionals in the Accident and Emergency and the children’s emergency hospital setting in the London Borough of Lambeth. The researcher will travel to A&E and the children emergency areas to meet the parent/carer’s and interview them individually. The researcher will use open ended questions as it will allow the subject to give much “richer” answers to questions and will generate in-depth data in order to explore the deeper side of this investigation.( Potter & Rosie , 2008). The interview/discussion will be tape-recorded for later transcription. As a final point, the data collected from the participants will be subjected to a process of thematic content analysis. The researchers will analyze the interviews by listening to discussions on digital tape recorders and independently documenting the data in terms of summarizing and categorizing it into different themes, making notes and looking for similarities from each interview (Polit, D. F., et al, 2001).The information will be downloaded onto to a mini laptop to be transcribed later. After the data is analyzed the researcher will gather the findings and will disseminate them to the relevant stake holders, parents and carers, as well as health and social care workers within the local region of the London Borugh of Lambeth and, through presentation, students in London South Bank University. Sampling Non–probability convenience sampling will be used to select 10 participant members from the population from the A&E hospital settings in the London Borough of Lambeth. According to Woods, P. (2006) convenience sampling is the use of individuals that are conveniently available rather than selecting from the population. The priority of this sampling is to select anyone who will answer the question or listen to the researcher. According to Alston and Bowles (2003), the sampling technique should be congruent with the research approach. This particular study and sample will look into parent/carer’s lived experiences and opinions about services that have been offered to them in the A&E setting. Yet again, the convenience sampling method will be the quickest and best form of sampling for the researcher because the participants could be collected with ease. In order to carry out the sampling method the researcher will send a letter to the hospital, A&E and the children’s emergency’s manager, informing them the purpose of the research and when the researcher will be visiting. The target population will be of all ages of parent/carer’s for disabled children. Research instruments The instrument used to collect the data will solely be the researcher. Semi-structured, open-ended questions A letter will be sent to research Ethics committee for approval A letter informing Accident and Emergency/ children’s emergency Manager about the purpose of the visits Digital tape recorder Mini Laptop Interview guide questions Notes pad Wrist Watch for timing the interview Procedures To gain insight into the parents’ lived experiences and opinions about the service offered to their disabled child in the A&E setting, a sole researcher will follow ethical procedures. A sole researcher will write a letter to Ethics and Governance Approval NHS Research South East London SE London Strategic Health Authority to gain ethical approval for the study (See appendix). The sole researcher will send a letter to A&E and children’s emergency manager to gain consent to carry out the research and inform them about the research and subsequent visits. The sole researcher will travel to the accident and emergency hospital on public transport and introduce herself to the health staff in A&E and children’s emergency setting. The researcher will take along with her the ethical approval letter. The researcher will make sure that her dressing and her footwear is comfortable as she will be standing and moving around hospital settings and travelling from one hospital to another in the London Borough of Lambeth. The researcher will build rapport and approach the participants individually and warmly ask if they want to take part in the investigation. The researcher will seek their consent verbally as they might not have the time to read or sign the consent form. The researcher will inform the participant that it will be recorded. If they do not agree, they will be thanked for their consideration. Once they have agreed, the researcher will briefly explain the purpose of the research. The researcher will discuss the pros and cons of the research. Once they have accepted, the participants will be told in length of their rights to withdraw from the study at any time and the length of the interview, which will last for approximately 15-30 minutes (See appendix). SIVITER (2008) includes in the definition of informed consent that the participants should always be educated about the benefits of the research and that they should be aware of whom to contact if they have any worries during the investigation. The Nursing & Midwifery Council (2008) claims that obtaining informed consent from research participants is central to ethical research practice and is a huge consideration when undertaking research with children with learning disabilities and their carers. After the interviews, the participants will be thanked for participating in the research. The researcher will give the participants her contact details in case they wish to withdraw or ask further information. The researcher will inform participants that their information will kept confidential. After data has been collected it will be analysed, summarised and categorized into different themes, and the findings will be disseminated to the bcorrect bodies. Pilot study A pilot study will be carried out with one research participant prior to embarking upon the main research study. Through the pilot study, I will gain insight on the actual investigation. A pilot-study is a small-scale preliminary study conducted before the main research in order to improve the design of the research (PATTON, 2002). This will allow me to check if there are uncertainties over the questions. Obviously, if any problems arise I have the perfect opportunity to resolve these prior to handing out the actual research project. The participants, the researcher aim to use for the pilot study will not be included with the main participants. Yet they will be selected by convenience sampling and conversely would require the same criteria as in the main research study. The information collected from the pilot study will be analysed by the sole researcher.( Sapsford, 2007). Ethical considerations It is the researcher’s responsibility to obtain ethical approval from the London Borough of Lambeth ethical Committee before commencing the study. It is also the researcher’s responsibility to ensure that all the participants receive enough information about the nature, progress and point of the study (NMC, 2008) (see Appendix). Fully informed consent will also be sought from the participants and the A&E and the children’s hospital manager to ensure that they understand all the information that were given, as without their permission, the researcher will not be able to continue. The researcher will inform the participants their right to withdraw from the study, the length of the study, and the process. To respect autonomy, confidentiality will be maintained at all times and the researcher will adhere to it throughout the study (Ward, 2007). For confidentiality purposes, the participants will be given and identified by a unique identifying code as this will protect their name, personal information and will identify them. Recorded information and results will be safely locked away with a unique code to prevent an unauthorized person from accessing the information. Interviewees will have the opportunity to verify what is recorded when the report is in its draft form, and have the right to see the final finished copy. Any remaining or used information will be destroyed in line with the Data Protection Act protocol (GSCC, 2004). Reliability and validity Reliability can be explained as the extent that a study is reliable and consistent with previous studies undertaken using similar approaches or under similar conditions (Cormack 2000). As this research will be a small sample, it can be difficult to examine in a qualitative approach. Again, it can make the sample size and the findings not entirely generalised. .According to Sapsford, (2007) the researcher would need larger data to generate the larger population. Having said that, because the findings are small does not mean that it will not qualify or add to the body of knowledge or be transferable. Validity determines whether the research truly measures what it intends to measure. Validity and reliability affects the quality of research because if the research is not valid or reliable it is not useful (Sarantakos, 2005). If the research is reliable and valid it is useful and the quality of the research will be sound. To ensure the quality of research for this project, the researcher will need to make sure that the research is precise and relates to the topic being researched, as well as being accurate, valid and reliable. For example, the researcher will use open-ended questions to elicit the participant’s views, opinions and make the discussion interactive to add to the validity (Patton, 2002). To avoid any bias that might affect the data collection or analysis, the researcher will seek to understand and reduce bias or enhance the credibility of findings by helping the respondents or participants to understand the questions and ask for clarification, as it will enhance the validity of the interview (Polit et al 2001). The researcher would use the interview schedule as a guide to analysing the information, which will reduce this bias, ensuring that the questioning does not drift from the objectives (Vivar, 2007). The pilot study will give the researcher a basis for her prediction on the final conclusion to the main investigation to test for the reliability and validity of the research design and methodology. This allows the pilot study to test the suitability of questions, give a guide line on time and develop interview skills or put right or deal with any issues/problems before carrying out the main study. Data results and analysis The data gathered from face to face interviews will be analysed qualitatively using thematic content analysis process of coding to look for similarities. Phenomenological, semi-structured interview, open ended questions will be used to explore the parents/carer’s lived experiences, views and opinions of service offered to their child with disabilities in A&E and children’s emergency setting. The researcher will play back and listen to the digital tape recorder and make notes from the data transcribed word for word to improve the accuracy of what Hek, & Moule (2006) describe. The researcher will develop a categorization scheme and code the data according to the categories (HEK, G., et al; 2002.). These concepts, or codes, will explore similarities and differences within the participants’ reflective accounts. In addition, the researcher will ensure their personal details/identity is removed to protect confidentiality. Proposed method of disseminating findings Polit & Beck (2008) stated that there is no point carrying out research without submitting the reports to the relevant body that will make use of the recent information acquired. The research paper findings will be presented to those involved in the study prior to publication. These will include participants, policy makers, health and social care professionals and joint-practicing students. The finding will be provided in a language they will understand.  Timetable The timescale for the researcher to complete the entire study is 12 weeks (see Appendix). Limitations of the study If the participants that will take part in the study live in the London Borough of Lambeth then it may not fully represent the views of the whole population. Some participant may be reluctant or fearful to voice their opinions (Mc Gaw, & Newman, T. 2005). If participants are going to be interviewed in A&E, the surrounding environment may impact their behavior or restrict some of their information. Again, they could tell the researcher what she wants to hear and impact the result of the findings. The fact that the researcher is aware of this will make the interviewer look for a quiet place, be more friendly as to make the conversation more open, and at the same time be mindful not to drift away from the topic or question. The researcher will try all her best to make the discussion very interactive and be aware of her body language, particularly facial expressions, as this can affect how the parent/carer’s may relate or respond during the interview. The researcher would also have to be mindful of the tone of voice used to carry out the interview as this may make people want to withdraw or refuse to take part. In a part where a parent or carer has said little, the researcher may ask for clarification and probe for further responses, as it will enhance the validity of the interview (Scare ,2005). When recording the participant, the researcher will need to be careful using the tape and be familiar with it. The researcher will need to be careful and not fidget with the tape as she may lose data. Payne and Payne (2004) also warn that the tapes used in a recording could snarl up and result in vital data being lost altogether. These errors could be minimised through careful attention during face to face, individual interview, transcription and analytic process. Benefits of the study The benefit of the study is that it will expand on existing knowledge; bringing new awareness into practice parent/care’s caring for children with a learning disability and health care providers. (Mitchell, C, 2003). The result/findings of this study will build up a framework on which to distinguish and improve the services offered to parent/carers caring for disabled children and health staff in an A&E hospital setting. The researcher hopes that it will bring awareness among health and social care professionals that will use the requirement to improve A&E service to them as well as change misconceptions. It will also implement evidenced-based practice within a health and social setting. It is argued by Melnyk & Fineout-Overholt (2004) that evidence-based practice is an approach that enables the health professional to provide the highest quality of care in meeting the complex needs of their patients and their families. Conclusion While this is a small research project, the findings will highlight a real problem in the current climate. It hopes to create awareness to all health care providers within the health care region and continue to inform them about advocates that play a key role in ensuring that all children with learning disabilities are encouraged and facilitated to be active partners in decisions about their health and care (Sivitter, 2008). Furthermore, through this research the parent or guardian caring for a disabled child can develop competence in evaluating options and making informed decisions about their health care/service. According to Ward & Tarleton (2007), the guardians of children with learning disabilities should have their opinion and wishes heard, respected and the right to involvement in decisions about their child’s care in the hospital. Therefore, health professionals should also be committed to engaging children with learning disabilities in the consultation process as well as incorporating their views in service delivery that would lead to more focused services for them and their families.   Read More