Ethical challenges associated in assessing quality of life and strain among family caregivers of urinary incontinence patients

Jebakani B1, Tipandjan A2

Research Type

Clinical

Abstract Category

Ethics

Abstract 770
Non Discussion Abstract
Scientific Non Discussion Abstract Session 37
Incontinence Quality of Life (QoL) Female
1.Mother Theresa Post Graduate and Research Institute of Health Sciences,Govt of Puducherry Institution, 2.ICPCSR
Links

Abstract

Hypothesis / aims of study
The aim of this study is to provide insight into the ethical challenges associated in  assessing  quality of life and strain  among  family caregivers  of urinary incontinence patients
Study design, materials and methods
The family caregivers ,majority females ,were hesitant to participate in the study This can be attributed due to socio cultural factors and attitudes such as “its improper  to discuss about continence care of their close family members”, which is sensitive  and personal issue to the care receiver.A highly protective behaviour of the  family caregivers towards their care reciever and vice versa was observed in  the recruitment stage of participants for our study. Family caregivers were willing to participate but preferred to fillup the  questionnaires only when elderly patients who they take care are sleeping  or taking rest so as to avoid any misunderstandings.They were  worried whether any other family members will oppose to their participation in the study. The cultural thoughts about role change, economical status, relationships, emotions, sleep deprivation that occurs  as a result of caregiving  are family matters and it should not be revealed to a third person acted as a barrier for the  family caregiver to participate in the study.
Results
Patient Autonomy is the important principle in ethics  that has focus on the process of seeking and gaining consent to participation in the research study.Balancing patients autonomy, caregivers health need  and how to implement the ethical principle of autonomy in a  patient’s residence was challenging process since the intricacy of  family threadworks should not be disturbed as it can lead to disharmony in the family relationships.The ethical dilemma was resolved through shared decision making process leading to participation of competent elderly patients who can answer the continence questions and who had complete freedom to make their own decisions.Their respective  family caregivers gave  consent for their participation in  study. Ethical team member conducted ice breaking sessions to explain the elderly patients and the family caregivers that incontinence is not a taboo and understanding about the family caregiver quality of life and strain is  important since it will enable them to receive quality care.Providing relevant  information sheet regarding the purpose of the study in English and local language  helped the elderly patient and caregiver to exercise the individual autonomy. Assurance regarding maintaining confidentiality also  helped to remove the hesitancy  among the elderly patients and family caregivers.As per the research protocol  giving clear and concise informed consent enabled them to reflect and decide regarding their participation in the study with mutual trust and dignity.Thus principle of autonomy  was ensured in the study.
Interpretation of results
This case study helped us to understand  the different  ethical issues that can arise when the research subjects are elderly and suffer from various types of urinary incontinence.Elderly patients are also vulnerable to biological, psychic and socio-cultural contributions of the environment in which they live. The preservation of privacy and dignity during recruitment of research subjects is an essential feature of the  research process. Clear and concise informed consent enabled them to reflect and decide regarding their participation in the study with mutual trust and cordial relationship being maintained with the family members Researchers has to be sensitive to the collectivistic culture existing in the community settings  when family caregivers are being assessed.
Concluding message
Patient autonomy refers to the right of an individual to determine whether they are willing to participate in the research study or not . It should be  followed  while taking consent from the research subjects. Involving competent third person and  shared decision making process may resolve conflicts in therapeutic healthcare relationships and enhances self –determination.Vulnerability of elderly patients has to be prevented  and beliefs,perceptions ,values and respect should be considered when research study protocol are framed for elderly patients with urinary incontinence and their family care givers
Disclosures
Funding none Clinical Trial No Subjects Human Ethics Committee International centre for psychological counseling and social research Helsinki Yes Informed Consent Yes