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Table of Contents
ORIGINAL ARTICLE
Year : 2021  |  Volume : 22  |  Issue : 2  |  Page : 207-214

A qualitative study on experiences of women undergoing treatment to achieve fertility from selected infertility centres of Maharashtra


1 Assistant Professor, Bharati Vidyapeeth College of Nursing, (Deemed To Be University), Pune, Maharashtra, India
2 Professor, Bharati Vidyapeeth College of Nursing, (Deemed to be University), Sangli, Maharashtra, India

Date of Submission31-Oct-2020
Date of Decision24-Nov-2021
Date of Acceptance25-Nov-2021
Date of Web Publication22-Dec-2021

Correspondence Address:
Dr. Supriya Pottal Ray
College of Nursing, Bharati Vidyapeeth (Deemed to be University), Pune - 411 043, Maharashtra
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/ijcn.ijcn_111_20

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  Abstract 


Infertility has an immense effect on the roles and relationships in a woman's life. A woman may react differently to issue of infertility as many social customs and traditions are related to pregnancy, childbirth and child-rearing. One is bound to compare another woman on issues of the time of marriage, time gone by after marriage, and successfully becoming pregnant. These issues may not be important to the ones who have conceived but can be traumatic for the one who cannot. Therefore, a qualitative study was undertaken to explore various kinds of experiences women underwent while seeking treatment for infertility. A qualitative hermeneutic phenomenological approach was used for the present study. The saturation of the data was achieved with 48 participants selected purposively from among women who were seeking treatment for infertility in three cities. Individual in-depth interviews were conducted and field notes were taken during interviews. Thematic analysis was done for determining essential codes, themes and subthemes. The themes which emerged from the study were burden about their fertility state, decision-related seeking treatment, commitment to treatment, feeling of inadequacy, support, stigma, hopes and beliefs and coping. The study has revealed that the failure to have a child is distressing to the women; however, there is variation in their reactions to infertility. Qualitative study has provided a detail description of the phenomenon of interest, the human variation and has explained its occurrences from individual viewpoint irrespective of their demographics. The findings will help in counselling services and help nurses to identify and rectify the problems posed by these clients.

Keywords: Experiences, infertility, phenomenology, qualitative


How to cite this article:
Ray SP, Bhore NR. A qualitative study on experiences of women undergoing treatment to achieve fertility from selected infertility centres of Maharashtra. Indian J Cont Nsg Edn 2021;22:207-14

How to cite this URL:
Ray SP, Bhore NR. A qualitative study on experiences of women undergoing treatment to achieve fertility from selected infertility centres of Maharashtra. Indian J Cont Nsg Edn [serial online] 2021 [cited 2022 May 28];22:207-14. Available from: https://www.ijcne.org/text.asp?2021/22/2/207/333347




  Introduction Top


Patient-centred care is considered to be the fundamental right of the individual. Patient-centred fertility care not only takes into account their wants and desires but also improves quality of life, psychological health and reduces the pain and suffering.[1] The essence of being a woman is mostly attributed to the fact that she reproduces, raises children and completes her life cycle of achieving womanhood. Various holy books also mention about women being barren and then conceiving with the power of the almighty. Conventionally, childbearing is looked at as a very important milestone after the rituals of marriage. However, factors such as changing trends, lifestyle and priorities, as well as changes in food habits and activity levels have an effect on the reproductive patterns of woman and may lead to fertility-related issues. Infertility is defined as the inability to conceive after 1 year of coital act without the use of any contraceptive devices. Both men and woman are subjected to the occurrence of this inability, and as a result, they may suffer from primary or secondary infertility.[2]

Around 34 million women around the globe are estimated to be suffering from infertility, and majority of them are from the developing countries. Infertility in women was ranked 5th in the serious global disability (amidst population under 60 years of age).[2] An eminent scientist Bargava, chairman of the drafting committee for Assisted Reproductive Technology, 2013 has stated that 20 million couples in India are infertile.[3]

Recent (2017) statistics of India has revealed that there has been a fall in the total fertility rate, from 2.2 to 2.1. It is said roughly that in a country like India about 13–19 million married couple go through the painful phase of infertility.[3] The prevalence of infertility in the age group of 25–49 years, in India is around 3.9% and16.9% in the age group of 15–49 years, in the state of Maharashtra it is 3.7%. NFHS-3 data estimates that 4% of woman are infertile, out of which 1.8% were reported from the rural areas.[4] In a study conducted in western Maharashtra, it was found that among 860 with infertility 344 (40%) were suffering from primary infertility. According to Savita and Pratap, the prevalence of infertility in the Pune region is about 10%–20%.[5]

It is also evident from research that during the last 5 years, there has been a rise of 20%–30% of infertility rates among couples. It is no longer a phenomenon of the urban class but affects the other areas too, and most importantly it is not confined to women alone. In this upbeat society, the issues of infertility have had an impact on men too. These increasing rates are attributed to lifestyle changes, stress in a competitive world, reduced physical activity, increasing obesity, changes in eating habits and medical associated problems. Among all the cases, nearly 45% of the couples have problems not only related to women but men too.[6]

These findings are supported by various parallel surveys as reported by Times of India in September 2013, where the infertility rates were reported to be 46% in Mumbai among couples belonging to the reproductive age group of 31–40 years.[7] 'The rate of infertility is much higher in urban India' points out by Ram (2010) a lead researcher in infertility with Government of India.[8]

The societal structure or the manner in which health and sickness role behaviour is seen differs for other illnesses and is very different for couples suffering from infertility. The patients or couples are very reluctant to come for the treatment, and by the time they visit the clinic, it is often a result of forceful action of some members of the family. It is difficult for the couples or the woman or man to accept that they cannot reproduce without medical intervention. The other problem with the couples is the question of who is the cause. Social stigma plays a huge role in the health-seeking behaviour of these couples. This state of mind becomes difficult to treat than the disorder itself, as it becomes more of a psychological problem than a physiological one. Thus, it is labelled as more of a psychological distress and what the couples go through is described as devastating experience. Studies which attempted to discuss this condition came out with results that stress and self-esteem were highly significant. It was also argued that men and women reacted differently to infertility and it is the woman who had different experiences to share and thought to have been affected more.[9]

A study conducted at Taiwan Health University stated that though there is a hope for these women, it does not always change into reality. The responses of the women projected the uncertainty and limitations in treatment outcomes they faced counselling services were recommended as a need for the women.[10]

Another study conducted with a qualitative approach at Tehran University on assisted reproductive technology and pregnancy revealed that the women needed peace in life, had mixed feelings towards conception and pregnancy, and were striving to grasp their dream of becoming a mother. Thus, the researchers concluded that it was indeed a struggle for these women to make their dream come true within the context of unsure outcomes in treatment and that healthcare professionals had a major role in understanding their experiences and assisting them to cope up during the treatment period.[11] Findings of an additional study gave the fact that among 26 infertile couples who were studied using a qualitative method, all of them felt that high-quality medical care was required and it was equally necessary for the health team members which included doctors and nurses to look at the infertile couple's expectations, request and desires. Identifying these needs was to be a precondition to plan effective management and support interventions.[12]

Various researchers have highlighted the fact that couples or women undergoing the treatment for infertility are vulnerable to a multiple needs that require psychological support, need counselling services, couple-specific approach and client-centred approach. Patient-centred care is considered to be the fundamental right of the individual. It is seen that patient-centred fertility care has benefits as it meets their specific needs as well as improves the quality of life.

The present study aims to explore the experiences of women suffering from primary infertility. Such data are needed to complete the community and sociological science literature on this reproductive problem and to provide evidence-based data to direct and create policies in reproductive healthcare specific to infertility. Many quantitative studies have discussed various aspects of infertility such as prevalence, risk factors and fertility inventory index. On the other hand, very few studies have attempted to discover the experiences through qualitative approach which will help in planning effective intervention and thus enhance treatment outcomes.

Qualitative study can provide a detail description of human understanding, explanation and occurrences from individual viewpoint irrespective of their demographics. Therefore, qualitative approach was thought to be appropriate for exploring the experience of women undergoing treatment for primary infertility. It provided an in-depth understanding of the phenomenon of interest.

Objective of the study

The objective is to explore the experiences of women undergoing treatment for primary infertility.


  Methodology Top


The research design adopted for the present study was Hermeneutic Phenomenology. Hermeneutic Phenomenology highlights that an individual's experience cannot occur outside the background of their values, family traditions, relationship with nature, spiritual beliefs and individual history.

It is well-known that human behaviour is unpredictable and it cannot be discussed in terms of quantity. Behaviour is a personal expression of thoughts and feelings, thus in the methodology of phenomenology the human experiences are tried to be understood and evaluated. The phenomenon to be studied here were the experiences of woman while undergoing treatment for infertility. Phenomenology describes the way in which human beings express themselves; the meaning of their experiences is drawn out to give it a meaningful whole.

Hermeneutic phenomenology goes further in understanding the inner feelings which may not be necessarily verbalised. It includes making a note of the posture, gestures, moments of silence and voice modulations which are related to the given situation. The method also enables the researcher to interpret the experience in her words and also gives the researcher the freedom to give artistic expressions to the experiences mentioned through the use of language.

Methods

This study was conducted at selected private and public infertility centres of three major cities of Maharashtra state. Forty-eight women with primary infertility attending the fertility centres and are on treatment for at least 1 year were purposively selected.

The data collection tool consisted of two sections, Section I - Demographic data and Section II - Semi Structured interview schedule/guiding questionnaire.

Section I

Section I had demographic data which included age, religion, occupation, income, duration of marriage, age at marriage, history of consanguinity, contraceptives used before treatment for infertility, husband's age and husband's treatment for infertility.

Section II

This section had open-ended questions to bring out the experiences of women undergoing treatment for primary infertility.

An individual in-depth interview was conducted using a semi-structured open-ended questionnaire that included trigger questions related to the duration and willingness to continue the treatment, personal understanding about the treatment, pressurising situations, dealing with people's reactions, money involved in the treatment and managing it and how they are dealing with their treatment outcome. The interview questionnaire was validated by experts in the field. Interviews were audiotaped. Text data were written from those who were not willing for audiotaping. A pilot study was conducted to check the interview questions and revealed the feasibility to conduct the study. It also made the researcher realise the need to include field notes in the data collection process as few participants had not consented to get the interviews recorded.

During the interview, it was observed that it was an emotional burden for many participants and at such times the interview had to be stopped and the researcher had to allow time for the participants for emotional let-down (silence, crying) before continuing with the interviews.

Data analysis

The audio-taped interview was transcribed verbatim and translated. The transcribed text data from each individual participant were read and reread to identify similarities in words, sentences, phrases from which codes-sub-themes–themes were generated and translated.

Validity and reliability of the data

Audio-taped recording, transcript and findings were given back to the participants to determine if the findings (translation) reflect their experience (constructing credibility). Audio-taped recording and the transcription were made by the researcher and were discussed and checked by language expert and guide.

Ethical consideration

The study was approved by the institutional review board and administrative permissions were received from the specific centres. The study was explained to the women and those who agreed to participate were included after they gave a written informed consent. Field notes were taken for those who did not wish to get their interviews recorded. After the interviews were recorded and transcribed, it was given back to the participant so they could verify the audio recorded interviews and the transcript. Names of the participants, infertility centres were kept confidential.


  Results Top


  • Among the 48 participants, majority (38%) were in the age group of 26-30 years, were Hindus (50%) and were homemakers (54%). Most of them (33%) were married for 5 years and 73% of couples did not have a history of consanguinity
  • About more than half the proportion (56%) of participants had undergone follicular monitoring, 42% had undergone a Transvaginal sonography, 40% hysteroscopy, 33% had undergone intrauterine insemination, 31% had menstrual regulation done, 19% had to undergo a dilatation and curettage, 10% had opted for in vitro fertilisation
  • With regards to gynaecology history, 29% of the participants has menstrual irregularities and 25% had complaints of polycystic ovarian disease
  • Data related to participant's husband's age indicated that maximum (54%) were in the age group of 25-30 years. The occupation showed that many (31%) were IT professionals
  • Medical history of the participant's husband revealed that the majority of them (92%) did not present with any kind of medical history
  • Treatment of the husbands revealed that more than one investigation was carried out for them. 60% had normal sperm count, 33% had low sperm count, and equal number underwent hormonal investigations. 6% of the participant's husband did not get their sperm count done.


The theme generated from the data revealed the lived experiences of the participants [Table 1]. Majority of the participants expressed that they faced burden due to their infertility and their decisions to seek treatment. There were many factors which decided their commitment to the treatment schedule; many of them had a feeling of inadequacy as there were not able to conceive a child. With the support of their family and their belief in God, they could gather strength to undergo the treatment although they experienced stigma. They had mixed reactions when they spoke about belief and trust in God as they had questions to God and tried strategies to cope with their situation.
Table 1: Description of sub-theme generated from theme

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Burden

Participants said that it was the struggle that they underwent and the failure of the treatment that made them think it to be a burden rather than the condition in itself. The terms used to describe struggle were sangharsh, striving hard, trying hard to follow the treatment plan, the dejection they faced when results were not in their favour, pain and suffering they went through during procedures [Table 2].
Table 2: Description of subtheme and key terms in burden

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They expressed few terms in relation to why they felt that seeking treatment was more of a struggle for them. At times, it was not easy to convince spouse and family members about the treatment demands. In spite of following all what was advised they faced dejection and when the results were nonfavourable they felt the pain and hurt. They said that they had strived very hard to come this far but it was a struggle for them to fight all the difficulties.

There were two participants who stated 'The treatment process is physically and psychologically very painful, we are striving hard every visit'.

'Actually I do not even want to know how it will be done, how long should I wait, because with every test, if the results are not in our favour, I feel shattered'----------dejection.

Some of them verbalised it as a struggle and 'parishram' 'I have been to many doctors before and now I feel that I had enough, I feel bad for myself' 'self pity'; after all my struggle still, I mean why success is not knocking at my door, 'Me khup parisharm kele, pan majhya padriyash padat nahi'.

Failure of treatment was also identified as an indicator for the experience of burden of the disease. Majority of the participants had expressed that they had changed many doctors because of unfavarouble results. There was hesitation, moments of silence, agony while they spoke about negative results or unsuccessful treatment or at the mention of getting the next monthly cycle. Five (27.77%) of the participants mentioned that the procedures such as hysteroscopy and dilatation and curettage were painful and with all this the results being negative was devastating.

'I am taking the treatment since 8 years, I have been to many places and numerous doctors. It's been 10 years since I am married. The treatment process is physically and psychologically very painful. The procedure are to be followed strictly; And after all this when you do not get positive results its painful and creates stress. You are drained psychologically and physically and still you do not achieve the success you so much are waiting for'.

Decisions

The second theme in the experience of women revealed their decisions related to seeking treatment. Majority of the participants expressed that they hesitated in initiating the treatment process, many of them believed that the 'problem was in neither of the partner'. This could have been the reason for the hesitation they often had to communicate with the doctor initially. Many of them also were seeking treatment further away from the place where they actually resided as they had changed their doctors or were referred to different centres. They had to choose facilities where treatment was affordable. Fear of stigma and a feeling of embarrassment were also shared as reasons for their choice of facility or doctor. Such choices resulted in time related issues, long waiting hours, repeated treatment schedules and a need for seeking more information [Figure 1].
Figure 1: Description of subtheme and key terms in decision

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'Yes, I feel stressed, treatment procedures, spending hours together at all clinics; we have changed 2 doctors. I even get stressed and worried if my co-patients conceive and I do not; off-course I am happy for them; I get worried about myself'.

'To adhere to the treatment schedules, to be on time for treatment process, to follow the plans, it becomes difficult for us to practice act when instructed on a particular day by the doctors, its even embarrassing at times'.

'Some places were far, in some hospitals I felt that, I could see any difference or it was not working in my favour, I was not getting any success'.

Commitment

The third theme identified was commitment to continue treatment which was thought to be a crucial part of the journey of infertility treatment [Table 3]. Commitment to the planned schedule of treatment was mandatory for the progress and successful completion of the treatment. However, the participants identified this as the most difficult part of their treatment as there were many factors that facilitated or hindered the adherence to schedules. The women shared about how it was difficult to come to the hospital for treatment amid their household responsibilities, family commitments and inability to take leave from work or many deadlines for work.
Table 3: Description of subtheme and key terms in commitment

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On the other hand, the need for a child, the want (zaroorat), the desire (mull whave mhanoon), motivated them to adhere to the treatment schedule in spite of the difficulties. They tried to balance their work and treatment, tried to prioritise as and when needed to keep the process of treatment going

'Every now and then my husband has to take leave; its not easy to take leave very often; he is keep running between attending clinic and work'.

'But back home there are a lot of things to do, I have household chores, farming, lifting heavy jars/pots of water. If I go for the treatment all the work gets hampered. Yeh sab kaam kon karega, baar baar nahi hota hai aana'.

'I would say that “you know it's like prioritizing things, after all its my priority.” And it is important and it is our need to make this our priority'.

Inadequacy

Majority of the participants expressed that they felt or they had a 'feeling of inadequacy' as they viewed becoming a mother as a completion of womanhood. As this process did not happen naturally as they had expected they struggled with blame, self-blame and guilt for not becoming pregnant. Uncertainty with regards to what would happen, how long would the waiting be, or whether it was worth the waiting were some thoughts that the women always had. Few were staying away from their husband because of work, family responsibilities, etc. Feelings of inadequacy and uncertainty persisted as they were confronted with negative results [Figure 2].
Figure 2: Description of subtheme and key terms in inadequacy

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'People have asked me after 2 years of marriage; they were eager to know when I'll give them good news, and they suggested that I should not be so relaxed and take treatment if necessary. They blamed that I am enjoying my life after marriage; they questioned me whether I am planning bout my family; according to them at this age at least I should have one child and then plan, if I want to...'.

'I am always separated or else at least i feel like that, its like I have committed some kind of a crime it's very different with people like us'.

'As per the suggestions given by the doctors regarding “coital act” on a particular day was done by us, but still… hmm… we could see or find any difference. After this we decided to go in for IUI, three IUI'S were done at clinic. Even after 3 IUI'S we did not get any results, it was not fruitful. All the hospital staff members supported us throughout; but somehow it did not work out in our favour'.

Support

Majority of the participants had someone or the other as their core support. They gave a testimony of their attachment to their support person or group in testing times. Strength, solidarity and dependence were expressed in terms of spousal support. They understood each other and were each other's support system. Family members played a crucial role in their journey of infertility treatment; they were a pillar of strength in their own simple ways. Many of the family members were projected as persons with an understanding heart and mind. Participants also appreciated the efforts taken by doctors, nurses', dieticians, social workers and other health care team members for their patience, understanding, consideration and thoughtfulness during treatment [Table 4]. This encouraged them to continue with their treatment, and also gave them a positive hope.
Table 4: Description of subtheme and key terms in support

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'My husband is very supportive he stands besides me in all my problems'; he shares an equal burden of psychological stress. He also says that 'even if don't have a child its fine'.

'My parents and my in-laws have been very good to me they have supported us mentally and financially'.

'The doctors inform us about all procedures, every small bit of the treatment protocol is explained, I have been visiting more than 4–5 doctors in a hope of positive results'.

'Nurses explain the procedures and make us comfortable, they assure us everything will be done correctly, and they even support us mentally'.

Stigma

Participants conveyed that it was extremely difficult for them to attend any kind of social gathering as it gave them a sense of loneliness, feeling 'bad' about themselves, always being confronted with questions of their conception which was annoying. They felt they were not meeting the standards and were extremely sensitive to the remarks made by others. It affected their daily life. They felt very stressed, got emotional and felt that their personal life has been disrupted by the treatment. They also expressed feeling stigmatised for their inability to be parents [Table 5].
Table 5: Description of subtheme and key terms in stigma

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'All this is very stressful; what can be done normally or which is natural process, even this i have to do it on someone else wish; I mean, it's like your most private moments are also governed by someone else. This is hurting'.

'I do feel let down when I see other children in my neighbourhood; and even they (parents) do not allow them to spend time with me'.

'I avoid going for social functions, gathering because they all ask me when I am going to give them “good news.” They ask me have we done any family planning. I am not comfortable in answering their questions, so I avoid them, but I do attend family functions'.

Belief and hope

During interview, most of the participants expressed about their 'belief' in terms of their relationship with God, which determined their spirituality, they believed that it was 'God's wish and will', they also associated it with miracles, observing fasts as a sacrifice for their want, expressing their intense belief in the almighty as per their faith. Cultural practices during festivals, customs and rituals as suggested by elders, which may please God were faithfully executed by many on the belief that their prayers will be answered [Figure 3]. Two women also had questions on 'why their prayers were not being answered and whether it was a test by God. Their faith and trust were shaken'.
Figure 3: Description of subtheme and key terms in belief and hope

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'They say if it is god wish and your destiny, it will happen. I trust god completely; I have been to various sacred places; I fast twice a week. If its his wish he'll definitely touch my womb'.

'I know that I have crossed my age but I have also heard of miracles'.

'I find peace in chanting prayers, I do fast for my wishes'.

Coping

In addition to their beliefs and hopes, participants expressed the ways in which they tried to find relief from the constant pressure and stress from within and outside. Many mentioned meditation, deep breathing exercise personal time to gather and clarify their thoughts which made them gain confidence in themselves. They had a better control over their thought process which helped them to deal with situation better [Table 6].
Table 6: Description of subtheme and key terms in coping

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They also kept themselves engaged in household activities or activities of their interest so that they could channelise their thought processes.

'All these years my sister daughter was with me'.

'I pray to god i fast twice a week, i fast for 10 days during navratra, in fact i am fasting today also; i have faith, i trust in god, if he feels i should have one he will definitely give'.

'I think about all the good times we have spent'.


  Discussion Top


Infertility is an issue that gets to the emotional core of the individual. How women chose to respond to the questions asked and the phrases they used reflected their unique experiences. Reading their accounts and appreciating the diverse ways in which their experiences were articulated has led to a complex picture in which physical and practical aspects of the clinical treatment are interwoven with emotional responses. The message that the respondents wished to convey to health professionals, other women- and couples considering treatment for infertility was very clear. Such treatment is not an easy option: ' This is an emotionally and physically difficult process and with every failure, the feelings of never becoming a parent are re-visited. The uncertainty of treatment outcomes as major concern in all themes in this study was similar to findings from the Taiwan study.[10] Motherhood is considered as higher status generally by most women and participants in this study as well as other studies had the dream of becoming a mother.[10],[11] From the outside, it is easy to expect these women for whom treatment has been successful to be grateful and to move on. Yet, as shown in the quotations chosen, particularly those relating to stoicism and emotional pain, the experience of treatment has marked them, making some individuals resilient and others more vulnerable. These findings reciprocate the findings of other studies on the emotional agony that the women go through as they navigate the path of treatment, depicting infertility as degrading status in most countries.[9],[11],[13],[14] The findings also depict the hope that is sustained and the indefinable efforts that are undertaken to achieve that hope. Although the participants were hurt by what others commented they expressed the undeniable support they received from their husband and family. The findings are in comparison with a study conducted on Jordanian Women's experiences with infertility.[15] The overriding theme in their study was missing motherhood and living with infertility. Others include experiencing marital stressors, feeling social pressure, experiencing depression and disappointment, feeling treatment associated difficulties, appreciating support from family and friends, and fearing an unknown future, the themes which are similar to the findings from this study. The insight from this study highlights the need for specific interventions to this population.


  Conclusion Top


Although infertility is a condition in itself does not cause mortality or morbidity, the effect of this so-called status of infertility has been identified as cause of immense distress especially in women. In a way, the normal life cycle and life process are disrupted for women who contend with infertility issues. The highlight is the need for support interventions that need to be tailored to each couple based on their experiences, believes and support. Patient-centred care is recommended for individuals with infertility so that one can promote client's wellbeing and boost the patients' adherence to treatment. Healthcare professionals are in situation to empathise with the client during the treatment and encourage them to express their wants, concerns and requirements. Further, proactive measures may also be needed to address factors that may lead to this issue in a couple's life.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.



 
  References Top

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Infertility Experts Say 63% Childless Couples Consulting them in Prime Reproductive Age. The Times of India; September 20, 2013. https://timesofindia.indiatimes.com/city/mumbai/infertility-experts-say-63-childless-couples-consulting-them-in-prime-reproductive-age/articleshow/22784337.cms. [Last accessed on 2021 Feb 15].  Back to cited text no. 7
    
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    Figures

  [Figure 1], [Figure 2], [Figure 3]
 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6]



 

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