Navigating Ethical Considerations in Health and Social Care Research

Introduction

The health and social care research mainly aims to identify new knowledge which is able to create changes in the health treatment and policies of care as well as care management. The research in health and social care is essential as otherwise, the health professionals would continue the same process of providing care without understanding that a new intervention of treatment could be more effective for the service users who they support to have improved health (Steinhauser et al. 2017). Thus, the management of proper research in health and social care field assist in preventing and controlling recurrence of disease as well as act to reduce the number of patients by increasing the number of people being cured. The scenario to be considered is the execution of qualitative study regarding young people and children's experience of care. In relation to this, the assignment is going to focus on the way management of informed assent, carer involvement and recruitment of participants is to be made so that a valid and effective health and social care research can be presented. Moreover, based on the facts a patient information leaflet regarding the selected scenario is to be mentioned to inform the way children and young people are to participate properly in a qualitative study.

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Informed Assent

Informed assent in research is referred to the willingness of an individual to participate in a study by people who are considered to be too young for providing informed consent by understanding the information shared by the researcher regarding the possible benefits to be faced and the activities which they are to execute while acting as participants (Oulton et al. 2016). In case the assent from the children to act as participants is received, the informed consent has to be obtained from the guardian or parent of the children to execute the study in a legal manner. In order to conduct a qualitative study regarding children and young people as determined, the children are to be considered as the key participants in the study from whom the informed assent is to be received. The children who are to be included in the study is of 7 years and according to UK law, no individuals above the age of 18 are considered as adults and are not considered to have the ability to provide effective informed consent (learning.nspcc.org.uk, 2020). As mentioned by Yuill et al. (2018), children often face issues with taking proper decision as they have less experience and maturity to understand information based on which they are to act. This is because children through the growing years gradually learn from the academics and everyday experiences about the values of lives and develop skills to have the ability to make proper decisions in life after reaching the adult stage. Therefore, parental permission is important to be considered in accessing informed assent from the children when they are to be selected as participants in the study.

The consideration of parental permission to access informed assent from children is regarded as good practice in research because the parents have effective understanding and maturity regarding the way it may affect the children’s health and lifestyle (Katz et al. 2016). However, accessing parental permission to receive assent from the children in research is problematic to be achieved. This is because often the parents are found to have poor education and understanding regarding the topic due to which they avoid their children to participate and provide assent as they feel it would harm them. In addition, the parents who belong from ethnic groups suffer from discriminative attitude due to which they avoid their children from providing assent or being selected for the study (Brawner and Sutton, 2018). In these situations, the researchers to access parental permission for availing assent from the children in research are to use simple languages and informative content with proper proof to be provided to the parents by considering their limit of education and thinking. This is to influence the parents to resolve their negative thoughts and avoid discriminative attitudes to ensure the children are allowed to provide assent in the study.

The best practice to gather assent from the children in research is providing them an assent document. The assent document is required to be written in simple language and phrases that within the level of cognition of the children who are going to participate in the study. In addition, the language later to be used for accessing parent consent is also to be suitable for a teenager or child to be perceived (Bester and Kodish, 2017). This is because it would help the children understand and make them able to determine in which aspect they are providing their assent. The document required to include information that explains the research procedures of the proposed study along with the purpose and any discomforts to be faced by the participants. The document also required to mention the benefits to be received by the participants if any (Barone and Unguru, 2018). This is because it would make the children have clear knowledge regarding the way their responses are to be used along with the reason for availing their response assists them to provide assent with better understanding. Thus, it would ensure the children provide assent with a thoughtful and well-informed decision.

The challenges faced with accessing direct assent from the children through the use of assent document is that few children are found to be incapable to have proper maturity and cognition according to age due to their psychological disabled state making them unable to process the information and provide response (Sheridan et al. 2019). However, in this case, Institutional Review Boards (IRB) is found to request the researchers that assent from the children are not required that they are to depend on the parent's consent (Baines, 2011). The other hindrance faced with accessing assent from the children in the study is the lack of presence of any parent or guardian to provide them permission to include in the research. In these circumstances, the researchers are unable to determine the way assent is to be received from the children with due permission from the parent which is the best practice (Reynolds et al. 2017).

Patient and Public Involvement (PPI)

The Patient Public Involvement (PPI) is referred to the inclusion of service users and carer along with the researchers at different levels of the process of the study (Forsyth et al. 2019). The carer gets involved in the research to inform in a positive way their personal experiences for improving the services for the service users and allow service users have the opportunity to provide their views being heard regarding the service they received (Mitchell et al. 2019). Thus, PPI is required in the performing the study as it would help the children who are the service users to share their experience for care as well as assist the carers to inform the way they offered the support leading the researcher effectively analyse the factors that lead to positive and negative experience for care by the children. The involvement of the carer or service users in the researcher allows them to be feel valued and be regarded as part of the picture which is able to raise the self-esteem of the individuals (Alderson et al. 2019). Thus, involving the carer as well as the children along with their parents and family members in the research topic to be explored would help the researcher to show value towards them.

The researcher to create patient and public involvement (PPI) is required to avail guidance regarding the way it is to be organised in the country where the research is to be executed. This is because the guidance is found to widely vary internationally as well as is evolving rapidly (Rogers et al. 2017). Therefore, to ensure effective inclusion of children and their carer in systematic way the UK guidance made by INVOLVE regarding PPI is to be followed by the researcher. The specific language to be used for making the PPI is to be determined by the researcher because it may also vary internationally. In addition, the way patient involvement and patient participation are different is to be determined by the researcher (invo.org.uk, 2020). This is because the proper selection of simple language would allow effective volunteering from the children who are the service users in the research as they have less maturity to under complex or different languages. In order to make PPI successfully, the research questions which are priority for the service users are to be determined by researching the existing work on the topic to be explored (Menzies et al. 2016). The researchers to create effective PPI contributions in the research by providing equal opportunity to the contributors to be heard regarding their opinion related with the research topic (Vale et al. 2018). This is because it would make the children, their carer, parents and family members feel respected as each of their opinions are equally valued.

The best practice in making PPI in research is allowing flexibility regarding the practicalities of involvement as it can assist to improve the quality by allowing greater variety of individuals to be involved in executing the study (Bate et al. 2016). The researcher requires providing clarified information to the PPI contributors (children, nurses, parents, family members) regarding what is expected from them and the opportunities they are allowed to avail while being involved in the study. In the process, the researcher required to avoid the use of acronyms and jargons (Miles et al. 2018). This is because it would ensure that all aspects of the research are clearly and carefully explained to the contributors such as in this case children, parents, family members, nursing carer and others. In order to make successful PPI, effective communication with the carers and service users are to be established through which the researchers are to avail feedback from the contributors to determine and analyse the progress of the research (Meyrick and Gray, 2018; cpft.nhs.uk, 2018). This is because it would assist the researcher to develop ways in PPI practice can be improved. The researcher to allow PPI contribution is required to foster a good environment where each individual are valued and cater a welcoming approach (cpft.nhs.uk, 2018). This is because it is the way in which long-lasting relationship by the researchers can be made with the PPI contributors (children, nurses, parents, family members) to make a successful study.

The issues raised with PPI contribution is that the researcher has to make changes in certain aspects of the research based on the perception and views of minority of atypical people who have volunteered in the study with greater interest and engagement of own health issues to be considered rather than focusing on the health issue of the research participants (Ocloo et al. 2017; cpft.nhs.uk, 2018). Thus, the researcher to avoid such challenges to be faced in the mentioned study are to clearly mention the PPI contributors (children, nurses, parents, family members) are not the representative sample in the study but are those who have to provide different perception regarding the lived experiences of care by the children. The challenge faced in PPI is that researcher face hindrance to create greater diversity in making involvement in the study (Jørgensen, 2019; cpft.nhs.uk, 2018). This is because it is seen that most of the white, middle-class, as well as retired people who have knowledge regarding health and research background, are chosen. Therefore, in this study, the researcher requires to provide wider opportunity to diverse individual to be get selected as PPI contributors in the study. The continuous training and long-term involvement of the PPI contributors lead them to become too much professionalised (cpft.nhs.uk, 2018). This leads their fresh outside perspectives to be avoided or not available to be shared in challenging researcher to frame an enriched study.

Recruitment

The recruitment of proper participants is vital to establish successful research as it helps to gather sufficient information to accomplish the study (Lander et al. 2019). One of the strategies to be used for effective recruitment in the research includes making telephonic reminders to the non-participants who are vital subjects to be selected for the study (Hoddinott et al. 2018). This is because it may make the participants feel valued and encouraged to make participation allowing enriched execution of the study. Thus, in the study of focus, to recruit potential participants the researchers require to provide reminders to the parents of the children to make them participate in the study. The other strategy to be adopted for effective recruitment in the study is that potential participants are to be allowed to opt-out from the study which they are to do by contacting the trial team to mention them that they are no more to be contacted for the trial in the study (Katigbak et al. 2016). This leads to effective recruitment in the study as the non-respondents create negative impact on the representativeness of the study sample in the research leading to skewed outcomes.

The effective recruitment in the study can be established if the aim and purpose of the study along with the way its benefits for the respondents can be explained by the researchers in a proper way (Newington and Metcalfe, 2014). This is because the potential respondents would then be encouraged to engage in the study out of the positive impact to be received by them. For instance, by following the strategy effective recruitment of potential children who are participants can be made as the children and their parents by understanding the benefit and purpose of inclusion in the study would reject the influence thoughts that were previously barring them to participate in the research. The presence of effective collaboration between the general practitioners, hospitals and the researchers are required for identification as well recruitment of potential participants in the study (Lord et al. 2016). This is because it helps the hospitals, as well as practitioners, refer potential participants to the researcher who is then selected to be recruited in the study for its enriched execution.

The recruitment of children and young people for the mentioned study can be done effectively if the researcher is able to influence the potential gatekeepers who are in this case the responsible adults or family members or guardian of the children. This is because the gatekeepers are the ones who provide consent on behalf of the minor participants or influence the minor to provide assent to be selected in the study (Bender et al. 2017). However, the challenge faced in this condition is that at times though the parents allow consent for the children to be selected but the children show disapproval to participate or get recruited in the study and vice-versa. The presence of friendly environment for the participants which is comfortable and non-threatening allows the researcher to make effective recruitment of potential participants (Gelinas et al. 2017). This is because it allows potential participants to feel safe to get recruited and they provide consent to be selected.

The selection of proper sampling techniques is required to be followed for effective recruitment of potential participants (Newington and Metcalfe, 2014). This is because it informs about the specific processes to be followed through which entities of the samples are to be selected. The recruiter characteristics are seen to influence recruitment of potential participants in the study. This is evident from the study of Newington and Metcalfe (2014) where it is mentioned that recruitment of participants in the study is found to be more effective when the study purpose and information are shared by the doctor before the researcher or the nurse provide a more detailed explanation. This is because the doctors are regarded to be more reliable and provide better introduction of the study to the participants compared to researcher. Thus, it informs that to ensure effective recruitment in the mentioned study the doctors may be involved who have previously cared for the children to introduce the topic to them and their parents to allow the researcher have the ability to recruit potential participants.

The challenge to be faced in the recruitment of potential participants in the study is geographic barriers (Stelzer et al. 2019). This is because geographic barriers lead the researcher to be unable to reach potential respondents who have offer better insight and in-depth information regarding the study topic to help the researcher explore it in a wider way. The issue can be resolved by the researcher in the study by connect and recruiting potential participants through online recruitment ways. The lack of effective financial resources leads to create challenges in recruitment (Newington and Metcalfe, 2014). This is because lower finances lead the researcher unable to pay potential participants who have agreed to participate in the study as they would be paid for the action. The lack of presence of effective translation and interpretation services leads to many potential participants from being unable to be recruited (Newington and Metcalfe, 2014). This is because such participants are unable to be informed regarding the importance of the purpose of the study and their sharing of views and information in the study.

Participant Information Leaflet

Study Topic: A qualitative study to determine the experiences of care by children and young people.

What is the purpose of the study?

The survey conducted by the Care Quality Commission (CQC) in 2016 within the UK regarding experiences of care by children and young people who are admitted not more than a day in the hospital mentioned that most of the responses received were positive. This is evident as the children and young people who were up to the age of 15 years and receiving treatment at different hospitals in the country informed that most of the carers and nurses took proper care of them in a friendly way. Moreover, they informed that most of the questions asked by the children regarding care were answered effectively and their privacy was maintained (cqc.org.uk, 2018). However, it was found that children expressed that in some cases they were not provided opportunity to make decision regarding care. In addition, the children face issues with proper recruitment to wards as per their age. Moreover, the study did not focus on to analyse the experiences of care by children who stayed at the hospital for overnight care (cqc.org.uk, 2018). Thus, the study is developed with the purpose to determine what (positive and negative) experiences were overall faced by the children and young regarding care on overnight stay at the hospital. It is to determine the changes to be made to ensure better and more high-quality care opportunity for them. This is because the children and young people are future of the country and not offering their adequate experiences of care as determined would lead to gradually deteriorate their health making them incapable to act like proper adults in future to contribute to the development of the country.

Why are we meeting with you?

We are meeting with you to mention that we need your participation to conduct a study where the children and young people’ experiences of care are to be examined and analysed. This is to determine which factors are to be improved or changed to ensure better quality care services are provided in the healthcare settings for the minors. We are also meeting as we wished to be introduced with the gatekeeper that is parents or guardians or family members to take permission from them to ask you for your assent and later take consent from them to access the support of recruiting you for the study.

Why you are asked or invited to take part in the study?

In the study, you are invited to take part because you fall in the age group of children and young people who are between 7-15 years and have already accessed care in the hospital as an inpatient or emergency patient for more than a day which is the target age group we are focussing to receive information regarding your experiences of care.

Do you have to take part?

No, it is not compulsory that you have to take part in the study. However, if you wish and feel it is appropriate to express your views to help the researchers determine the experiences of care by children and young people in overnight stay at the hospital then you are welcomed to take part. Moreover, our request to gatekeepers is to allow the children and young people take part in the study as it helps us to suggest changes to be made in care practices based on the experiences of care shared to improve care support quality for the mentioned target group in hospital in future.

Will my safety and confidentiality be assured while conducting the study?

Yes, your safety will be properly assured during the execution of the study. In order to ensure your safety, no information mentioned by you would be shared with any individuals other than the researchers involved in the study. Moreover, your personal information and identity would be kept private to ensure your privacy and safety. In case, you feel your safety is any way hindered you are free to opt-out from the research at any phase without providing any explanations. The confidentiality of your participation and shared data will be assured by enacting according to the guidelines mentioned in the Data Protection act 1998. In addition, the shared data or any verbatim will be destroyed after the study to maintain your confidentiality and safety. The data collection is to be executed in safe environment or preferred environment of yours to also make you feel safe and secured.

What is going to happen to me if I take part in the study?

Nothing is going to happen to you if do not take part in the study.

What impact will the study create on me?

The study will be able to bring improved care and high-quality support in hospitals for you while accessing and availing care from the healthcare staffs overnight.

Conclusion

The above discussion informs that to access informed consent from the children and young people in conducting the study the researchers require to provide them an assent form where the purpose of the study and other specifications are mentioned in cognitive language for the participants. The permission from the parents is to be taken before accessing assent from the children. The patient and public involvement (PPI) is required to ensure improved execution of the study. The PPI can be done by following guidelines, use of language preferred by the service users and carers, accessing feedback, establishing communication and others. The effective recruitment is possible in the study by use of proper sampling methods, collaboration between healthcare professionals and researchers, clarified benefits of the study mentioned to the participants and others.

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