Introduction

Although an accurate percentage of infertility prevalence worldwide is difficult to obtain due to inconsistent use of terms and a limited number of population-based studies, a systematic analysis has estimated that 60-80 million couples of reproductive age are infertile worldwide.1,2 In the United States, approximately 7.3 million couples have used infertility services.3 Approximately 2% of women experience primary infertility, i.e. infertility occurring with no previous successful pregnancies, and 10% experience secondary infertility, i.e. infertility occurring after a previously uncomplicated pregnancy.4 An accurate percentage for male factor infertility prevalence has not been reported.4

Infertility is a physiologic disease of the reproductive system and a biopsychosocial health problem, with emotional symptoms as pronounced as the physical symptoms.5 Infertility involves the inability to attain clinical pregnancy.6 The terms infecundity and infertility are used interchangeably. Infecundity includes the inability to carry a child. Infertility is the failure to conceive after 12 months of unprotected sex.1 For this systematic review, the term infertility will be used to describe adults who are unable to conceive after 12 months of unprotected sex or who are unable to carry a child to term.

Extreme symptoms of distress, including physical health concerns, anxiety, depression and grief, may occur as a result of infertility.7 Stigmatization, impaired self-esteem and cultural exclusion often exacerbate emotional symptoms and may shape a person's attitude towards infertility.8 An Iranian study examined a person's attitude towards an infertility diagnosis and the ability to cope.9 The results indicated that maladjustment and ineffective coping strategies cause negative attitudes towards infertility.9 The results also indicated that social support was beneficial to the participants.9

Possible infertility treatment services include artificial insemination, medically assisted reproduction (MAR) and assisted reproductive technology (ART) techniques. Artificial insemination techniques involve the intrauterine or intracervical insemination of sperm.10 The MAR services include ovarian stimulation and controlled ovulation triggering with the use of medications.10 The ART techniques include all procedures that involve the in vitro management of both human oocyte and sperm.10 The cost of infertility services can be burdensome at USD12,400 for one treatment or menstrual cycle. This average cost does not include the expense of medications, averaging USD3,000 per treatment cycle. Multiple treatment cycles may be required to obtain a successful pregnancy.11

The physical, financial and emotional stress of infertility treatments may impact a person's quality of life.12 Many suffer in silence due to stigmatization.12 Women and men who have undergone infertility treatments can endure multiple forms of emotional distress, namely depression, anxiety, stress, anger and decreased quality of life.9 These stigmatizing feelings can lead to decreased self-esteem and diminished sense of self.12

The psychosocial impact of infertility involves not only emotional consequences, but also financial strain, altered societal identity and marital discord.12,13 Support groups can be utilized to alleviate this consequence of infertility by allowing individuals with common circumstances or conditions to come together and discuss many aspects of this condition (emotional, physical, and educational).14,15 Professional support groups are facilitated by an individual with advanced training, such as a nurse or social worker, and are conducted through an occupational role.14 A peer support group, or self-help group, is led by a fellow patient, family member or lay-person with a personal history in the support group focus and is typically done on a voluntary basis.14 Support groups can be conducted in person, online or via a group telephone conversation.14,15 Both professional support groups and peer support groups will be considered in this qualitative systematic review.

By understanding the psychosocial impact of fertility and the treatment options, healthcare providers can be more influential with the care provided to those with infertility.12 By providing social support to participants, they may feel less lonely and stigmatized.13 Support groups at the Mayo Clinic have been shown to improve coping skills of participants and foster empowerment and freedom to talk openly about feelings. These support groups are not specific to those with infertility and are of various subject matters.13

A qualitative study conducted in Canada aimed to describe the avenues of social support that infertile couples desired and have pursued.15 The benefits and drawbacks of the services sought were also described in this study.15 The 32 couples interviewed admitted that they desired psychosocial support, but only half of the couples had previously sought avenues to gain this support.15 Those that previously sought psychosocial support did so through resources such as psychologists, peer support groups and written material.15 Overall, the results indicated that peer support offered the benefit of improved coping, shared experience and guidance.15 The couples described a lack of resources available for psychosocial support and expressed the desire to have more services available to assist with these needs.15 Another study examined psychosocial outcomes in infertile women who participated in an online discussion board support group. While the passage of incorrect information was an undesirable consequence of an online discussion board, the majority of patients had a positive experience.16 This study suggested that online support groups are a valuable aspect for healthcare professionals to encourage and help in understanding the infertility experience.16

This review will further inform healthcare providers on the use of support groups in infertility treatment. An initial search of databases PubMed, Cochrane Library, CINAHL, JBI Database of Systematic Reviews and Implementation Reports, Campbell Library, and PROSPERO in March 2018 showed that no qualitative systematic reviews currently exist or are underway on this topic. A review contributing to the understanding of experiences reported by those who participate in infertility support groups has not been conducted. The objective of this systematic review is to better understand the best available evidence of the experiences of adults participating in infertility support groups. The findings may inform or promote more effective and appropriate health care and, based on the results, infertility support groups may represent a beneficial tool that these adults can utilize to assist in the improvement of their quality of life.

Review question

What are the experiences of adults participating in infertility support groups?

Inclusion criteria

Participants

This qualitative review will consider studies that investigate experiences of adults participating in infertility support groups. Infertile women, men, and couples may be of any age, race, marital status and have other co-morbidities.

Phenomena of interest

This review will consider studies that investigate experiences of women, men and couples who participate in infertility support groups. This review will also consider studies that utilize any media or material for these infertility support groups, including online material, personal experience, multimedia and written literature. In this review, infertility is used to describe adults unable to conceive after 12 months of unprotected sex or those unable to carry a child to term. A support group, in this review, is used to describe a group of individuals with a common condition of infertility who come together to discuss various aspects of this condition.14,15

Context

This systematic review will consider research related to the experiences of women, men and couples who participate in infertility support groups. The support groups can be in any setting in any geographic location.

Types of studies

This review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, qualitative description, action research and feminist research.

This systematic review will consider studies published in English. Studies will be included in this review without any restriction in terms of year of publication.

Methods

The Joanna Briggs Insititute (JBI) methodology will be used to complete this systematic review.17

Search strategy

The search strategy will aim to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken, followed by an analysis of the text words contained in the titles and abstracts and of the index terms used to describe each article. A second search using all identified keywords and index terms will then be undertaken across all included databases. This will inform the development of a search strategy, which will be tailored to each information source. A proposed search strategy for CINAHL is detailed in Appendix I. Thirdly, the reference list of all studies selected for inclusion will be screened for additional studies. A record of the number of studies published in other languages and not translated will be maintained.

Information sources

The databases to be searched include: CINAHL, PubMed, PsycINFO, Psychology and Behavioral Sciences Collection, and Scopus.

The search for unpublished studies will include: MedNar and ProQuest Dissertations and Theses.

Study selection

Following the search, all identified citations will be collated and uploaded into EndNote (Clarivate Analytics, PA, USA), and duplicates will be removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the inclusion criteria for the review. Studies that may meet the inclusion criteria will be retrieved in full and their details imported into Joanna Briggs Institute System for the Unified Management, Assessment and Review of Information (JBI SUMARI) (Joanna Briggs Institute, Adelaide, Australia). The full text of selected studies will be assessed in detail against the inclusion criteria. Full-text studies that do not meet the inclusion criteria will be excluded, and reasons for exclusion will be provided in an appendix in the final systematic review report. Included studies will undergo a process of critical appraisal. The results of the search will be reported in full in the final report and presented in a PRISMA17 flow diagram. Any disagreements between the reviewers will be resolved through discussion or with a third reviewer.

Assessment of methodological quality

Selected studies will be critically appraised by two independent reviewers at the study level for methodological quality in the review using the JBI Critical Appraisal Checklist for Qualitative Research.18 The checklist is composed of 10 questions and any assessment that yields less than seven out of 10 "yes" responses will be excluded. Any disagreements between reviewers will be resolved through discussion or with a third reviewer. The results of critical appraisal will be reported in a narrative form and a table.

Data extraction

Qualitative data will be extracted from papers included in the review by two independent reviewers using the standardized data extraction tool from JBI SUMARI.17 The data extracted will include specific details about the participants, phenomena of interest, context, geographical location and study methods relevant to the review question and specific objectives. Findings and their illustrations will be extracted and assigned a level of credibility. If information is missing or unclear, authors of primary studies will be contacted for clarification.

Data synthesis

Qualitative research findings will, where possible, be pooled using JBI SUMARI with the meta-aggregation approach.19 This approach will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings and categorizing these findings by the similarity in meaning. These categories will then be subjected to synthesis to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.

Assessing confidence in the findings

The final synthesized findings will be graded according to the ConQual approach for establishing confidence in the output of qualitative research synthesis and presented in a Summary of Findings.20 The Summary of Findings includes the major elements of the review and details how the ConQual score is developed. Included is the title, population, phenomena of interest and context for the specific review. Each synthesized finding from the review is then presented along with the type of research informing it, a score for dependability, credibility and the overall ConQual score.

Appendix I: Search strategy for CINAHL

1. (MH "Support Groups") OR "self-help group" OR "social support" OR (MH "Support, Psychosocial") OR "support group forum" OR "support forum" OR "discussion board" OR "support groups" OR "support group" OR (MH "Peer Group") OR "peer group"

2. (MH "Infertility") OR "infecundity" OR "sterility" OR "infertile" OR "barren" OR "unproductive" OR "unfruitful" OR "infertility" OR "infecund" OR "unfertile" OR "sterile"

3. "Experience" OR "impression" OR (MH "Attitude") OR "outlook" OR "viewpoint" OR "attitude" OR (MH "Perception") OR "insight"

4. (MH "Qualitative Studies") OR "qualitative research" OR "qualitative study" OR "qualitative studies" OR "qualitative"

5. #1 AND #2 AND #3 AND #4

References