INTRODUCTION
The human being as a living organism in its natural habitat exhibit some form of emotion one way or the other in dealing with day to day activities. The ability to reproduce is seen as a natural phenomenon in the life of a living organism irrespective of the choice made by that individual.
With infertility comes the inadequacies of an individual when his/her ability to reproduce spontaneously is threatened. When seeking assistance with fertility treatments, patients become more reserved in the unfamiliar environment and there are concerns over what information to disclose which becomes a challenge in the provision of care.
The willingness of the patient to give out information which is paramount in their care is engendered in an atmosphere they perceive to be comforting and trusting. The nurse as a member of the fertility team has a role to play when it comes to managing confidentiality and emotions of a patient seeking fertility care.
CONFIDENTIALITY
Patient confidentiality refers to the non-disclosure of personal and medical information given to a health care provider to others unless consent is given by the client. National Health Service (NHS) confidentiality code of practise states that “Patient entrust us with or allow us to gather, sensitive information relating to their health and other matters as part of their seeking treatment, they do so in confidence and they have the legitimate expectation that staff will respect their privacy and act appropriately”.
It is the expectation of the patient that information given out to the nurse or any health care worker will be protected or kept private. However patient information can be shared without consent when it is required by law or justified in the public interest and also when failure to share information will put other people at risk.
Confidentiality is an essential part of the health care system. According to Dr. Maria Dyban (2015), confidentiality forms an integral part of the nurse/patient relationship and without it, patients are reluctant to provide sufficient or relevant information for the planning of their care. The concept of confidentiality fosters trust between the nurse and patient and therefore must be respected.
Regardless of the outcome of fertility treatment, patients should have the confidence that their information will be kept private and not be shared unless they give consent.
Fertility treatments involves disclosure of very sensitive information and when the patient feels his/her privacy is being invaded, there is the tendency to feel threatened and may withhold vital information that will be helpful in the planning of care.
Data protection is a fundamental part of the health system. In the provision of confidential services, one must take into account the factors that contribute to its success. The NHS uses the confidentiality model which consist of four main components namely; protect(to guard patient information), inform(to ensure patient is aware of how his/her data is being used ), provide choice (allowing patients to decide on where and how their data can be used)and improve(exploring ways to better protect, inform and provide choice for optimum care).
Good management can be achieved using this model to ensure respect and protection of sensitive information entrusted to the fertility team by patients.
MANAGEMENT
- Patients have a right to expect that information about them will be held in confidence by the health care provider. When patients are not confident that their information will be secure, they are reluctant to given out information. The nurse should therefore be cautious with any information that can be used to identify the patient and keep it confidential. Confidentiality takes in to account not just the actions of the nurse/ health provider but also includes the administrative staff who will be handling the patient files. Respect for confidentiality should be paramount before, during and after care. Centres should have standard operating procedures on confidentiality that each staff should be conversant with.
- Patient information that should not be shared include the patient’s identity, their physical /emotional/ financial condition. The nurse should at all times ensure patient’s privacy during procedures, consultations and other activities that involves the patient. Procedures should be explained and understood by patient, when given out information to patients, be truthful at all times to foster loyalty and trust.
- Fertility consulting rooms or waiting areas should not be labelled. In providing care, the nurse must at all times ensure that the ethical principles of care are practiced. Patients should be involved in decision making concerning their care (autonomy), all patients should be treated equally or fairly (justice) and activities should be geared towards achieving the best for the patient (beneficence) and not to cause harm (non-maleficence). Health facilities should have a non-disclosure agreement signed by employees to ensure that their responsibilities as guardians of vital data or information are taken seriously.
- The nurse’s role in managing confidentiality is to ensure that the patient’s experience in the health facility from first day of encounter will foster trust and reliability in the facility.
- Fertility centres should hold a regular continuous professional development training on confidentiality and ethics in general to educate nurses and other staff members on its importance and the consequences of breeching. Staff should be educated to know when they can share, how information should be shared and with whom it should be shared with.
- Patient folders should not be left where it can be accessed by the family or visitors. Patient files should not be placed on surfaces openly and left unattended even if patient details are not visibly displaced.
- Discourage other staff from discussing patients. When a staff is a family or a friend to a patient resist the urge to discuss their care plan unless patient chooses to do so by his or herself.
- Looking up patients details out of curiosity should be avoided to prevent accidental disclosure during social conversations.
- Do not use patient information for any other purpose if not intended for their care unless consent is obtained. If the information is for study purpose, seek consent from patient first and during its usage ensure details are shared anonymously and cannot be traced to the patient.
- Ensure proper disposal of patient information. When patient information is written on a piece of paper for a purpose, it should be discarded appropriately, for example by shredding the paper or according to the hospital policy.
- If patient information is electronic, ensure that access to it is password protected or encrypted. Patient details should not be easily accessible to every staff member but only those directly involved in the care of the patient. Password to information should be changed regularly and not shared with others. Ensure your details e.g. ID is not used by another person to log in to access patient information.
- When a request is made for medical records either by patients’ spouse or an insurance company be sure to seek consent from the patient before disclosing any information. Double check details before giving out patient information.
- When discussing care with patient or explaining a procedure, ensure discussion will not be heard by another person and it should also be done in private.
- Discussion between the team should be done in private and not areas where other people can overhear what is being said. Patients information should be discussed among the team when planning care and not in social conversations.
- Patients should be given written information about confidentiality policies of the facility, to ensure that at any point in time the patient is aware of the importance that is being attached to their privacy.
- When confidentiality is well managed, the integrity of the health facility is established and patients are willing to share sensitive information that is relevant to their fertility care.
- We also have to keep in mind a breech in confidentiality is irreversible and the patient’s trust in the health care provider and the facility will be broken and credibility will be lost.
EMOTIONS
Couples that fail to achieve pregnancy spontaneously although they are normal, may experience emotions such as grief, anger, frustration, depression, loss of self-esteem, among others over the inability to conceive unassisted. Identification of patients’ needs and supporting them through this life changing journey can help the patient cope better irrespective of the outcome.
Helping couples better understand infertility problems, its implications and options available and supporting them lessens the impact of their “lost”/delayed dreams. The nurse has a role to play in helping patients to adjust to the meaning of their lives whether they become parents or not. Counselling, whether implicational, supportive or therapeutic offers the patient and the nurse an opportunity to explore fears, anxieties and any other emotional issues that may be associated with diagnosis, treatment and outcome of infertility. When assistance is given and it is evident that the patient or couple need further care, a referral to the clinical psychologist will be ideal.
Implicational Counselling
A patient-centered approach is the best way to assist patients with their specific needs, incorporating all the factors for a desirable outcome. The nurse’s role in managing emotions in fertility can be divided in to 3 parts, the roles before, during and after treatment which interrelate with each other. One of the tools that can be used to help identify and manage the emotions of patients is the SCREENIVF (which can be modified to suit specific needs) and can be used throughout the stages of care.
Supportive Counselling
SCREENIVF is a tool that can be used to screen patients about to start fertility treatment and through out the process. Patients are scored on certain characteristics and when they fall below the cut off, are defined as being at risk so the appropriate care can be initiated.
Emotional stress can present as fear, restlessness, anxiety, nervousness among others. Our ability as nurses to recognise and provide support makes a significant difference. When patients better understand their diagnosis, the options available and have adequate information, they are likely to start and comply with the recommended treatment. They tend to cope better even if treatment fails and are likely or more open to try other alternatives or stop with treatment and still be content with their lives.
In order to familiarize with ourselves enough to know when help is needed or how and when to assist and with what, the nurse and patient must have a bond, a trusted relationship where the patient can freely share their emotions without fear. The nurse must ensure certain measures are put in place for the patient to be able to express themselves willingly.
From first contact the nurse must;
- Establish rapport with the couple, introduce yourself and have a warm or welcoming appearance
- Give written information that is specific to care
- Provide information on procedure beforehand
- Give information on next visit or what to expect
- Provide information that is relevant to their care
- Educate patient on procedures and encourage them to ask questions
- Explain side effects of medications
- Rationale for the request of test
- Inform client about risk involved in procedure/ types of pain relief
- Give adequate hands on demonstration on self-administered tasks e.g. injections
Information should be timely.
- Be easily approachable yet professional.
- Provide clear instructions in a language or at a level that patient is conversant with
- Avoid medical jargons
- Explain procedures and test results
- Be empathetic and understanding
- Communication with patients should be both verbal and non-verbal
- Show interest in patients’ activities
- Communicate with patients to explore ideas or options that best work for them
- Encourage them to verbalize expectations
- Be truthful to avoid unrealistic expectations
- Provide enough time during consultations for patients to ask questions and give appropriated answers.
- Avoid hurried discussions and decision making and allow for patient inclusion
- Give early referrals where there is need
- Investigations done should be relevant to their specific care and not generalized
- Minimize waiting time for patients
- Ensure patients are clearly oriented to all important units/area. Orient patient to available facilities and ensure patient knows where to go for what is needed
- Relate respectfully to patients
- Show understanding of patients concerns
- Ensure systems put in place work
- Where service to be provided is not available in the facility, ensure patients know where to access it and arrangements should be made
- Ensure treatment times are flexible and do not always conflict with work or other important activities
- Ensure patient has a contact nurse
- Provide numbers patient can call when they have complaints or any issues concerning their care
- Ensure patients meet familiar team members on each appointment
- Introduce other team members for patients to familiarize with them before the start of treatment or procedure
- Give patients the right to choose options that best suit them
- Ensure waiting areas are specifically for fertility patients but without labels.
Infertility causes not just physical strain but also emotional stress and in turn increases the drop out or non-compliance rate. This has been attributed to the emotional stress involved in the diagnosis and fertility treatment and lack of proper management of the needs by health care providers. (Malik and Coulson).
Where there is a good relationship between the nurse and the patient, there is the likelihood of the nurse to recognize any change in the couple and thence be able to offer any assistance needed. Patients are comfortable with nurses they have worked with since the start of their journey, there is bonding and they are able to better communicate their fears and worries and are more likely to accept support when offered. Continuity of care is essential in managing the emotions patients experience from diagnosis, through and after treatment.
- Encourage patients to verbalize fears and worries
- Organize continuous professional development sessions on care of patients for nursing team to ensure coordinated care
- Respect patients’ beliefs and ideas
- Encourage activities that will boost their self esteem
- Be sensitive and trustworthy
- Involve patients in decision making regarding their treatments
- Ask for inputs about specific needs
- Ensure privacy at all times and during sensitive discussion
- Be understanding to their feelings
- Avoid giving patients false hope
- Take time to listen to them actively
- Respect patient privacy and encourage involvement
- Ensure patients understand procedures before signing consent forms
- Set priorities for achieving goals
- Involve both partners in the provision of care and decision making
- Build trust and provide warmth
- Use open-ended questions that help to explore feelings
- Acknowledge concerns, feelings and beliefs (it provides a sense of belonging).
- Observe patient reaction to questions / results of test
- Explore coping mechanism for problem solving
- Be empathetic and be supportive
- Listen to patient and give opportunity for him/her to speak out
- Encourage patient on efforts made
- Reassure patients of worries
- Offer referrals to professional counselling service. Counselling services are of great benefits to all patients especially for those making major life changing decisions like patients involved in third party assisted reproduction. It is essential that they are referred to the clinical psychologist or the appropriate professional when need arises. As fertility nurses, we should be aware of our limitations when counselling and refer patients to the psychologist for the best outcome.
- Not all patients who undergo fertility treatment will achieve a pregnancy. Patients feel a sense of loss when they do not achieve their intended goal, those that achieve pregnancies also have fears about losing their pregnancies. Patients go through different emotions post treatment irrespective of the outcome.
- After fertility treatment, there is the need to provide patients with arrangement concerning follow up care. There is the need for a resolution as to options available to their specific needs.
SUMMARY
The diagnosis of infertility can be emotionally stressful and while fertility treatment is essential in assisting patients to conceive, it can compound the stress further. Fertility treatment can be time consuming, financially and emotionally draining as well.
Magda Ibrahim (2020) stated that although there is no guarantee of success in fertility treatment it can be both physically and emotionally stressful. Fertility nurses can provide compassionate, informed and evidence-based care to support patients throughout the challenging and for some long journey.
Fertility Nurses can also provide appropriate and timely intervention that assist patients to better deal with their realities, this includes providing emotional support and counselling before, during and after fertility treatment. When there is need for referral at any stage of care, it is essential that one is requested or arranged with patient’s involvement.
Every interaction fertility nurses have with patients requires skill in managing confidentiality and providing support throughout the emotional rollercoaster patients experience.
Increase in patient drop out has been attributed to the psychological burden associated with fertility treatment and staff attitude, can access to fertility care then be achieved if confidentiality and emotions are poorly managed?
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