The experiences, needs and concerns of younger women with breast cancer: a meta-ethnography
Abstract
Objective: This meta-ethnography synthesises the evidence on the experiences, needs and concerns of younger women with breast cancer.
Methods: Using a method called ‘reciprocal translation’ we developed a conceptual model to reflect the local and social contexts, issues, processes, needs and concerns of importance in this literature.
Findings: Key findings relate to the particular point in the life-course at which young women with breast cancer stand. Issues for these women relate to feeling different as a result of cancer, fear of recurrence, feeling ‘out of sync’ and altered embodied subjectivity. Young women with breast cancer use three processes to integrate the changes that cancer brings, namely, balancing, normalising and changing. Our conceptual model also highlights young women's needs, primarily for support, information, childcare, counselling and spiritual support. Areas of reproduction, fertility and sexuality were also of particular concern. The included papers have methodological limitations that impact on our findings, such as opportunistic data analyses, lack of theoretical frameworks and limited reference to socio-cultural factors.
Conclusion: The conceptual model developed as a result of this meta-ethnography provides a basis for practitioners to address these young women's concerns more adequately and comprehensively. Copyright © 2010 John Wiley & Sons, Ltd.
Background
Age and cancer
More than one million women worldwide are diagnosed with cancer each year. Breast cancer accounts for 10% of all new cancer cases in the world 1. According to the latest available figures, 45 508 women were diagnosed with breast cancer in the United Kingdom in 2006 1.
From a clinical perspective, age is a significant variable for understanding epidemiology. The prevalence of cancer in all age groups is rising 2. In the United Kingdom, around 1 in 10 cancers occurs in adults under the age of 50 1. A quarter of all cancers in adults under the age of 45 are breast cancers, the most common malignancy in this age group 1.
Experiences of living with cancer vary by age 3, but despite the prevalence of breast cancer in younger women, the specific key issues and concerns of this group are under-researched. Relatively little is known about how experiences, needs and concerns of breast cancer patients differ by age. Such knowledge is important to enable tailoring of interventions and to ensure the supportive care needs of different groups are met. Synthesis of existing evidence has been partly hampered by lack of standardised age definitions 4.
From psychological and sociological perspectives, age has traditionally been used to define human stages of development 5, 6. Key developments associated with young adulthood include starting a career, entering long-term relationships, parenthood and stabilisation of one's identity 7. Thus, the experience of cancer for young adults is related to the key issues they encounter socially and psychologically.
This meta-ethnography synthesises qualitative research on experiences of younger women living with a diagnosis of breast cancer. This focus was chosen because breast cancer is the most common cancer at this age. Focusing on qualitative literature in its own right is particularly important because it draws attention to subjugated, experiential knowledge.
Women's experiences of breast cancer
It has been argued from a life-stage perspective that younger women have more of their life ahead of them and might therefore feel the impact of cancer more keenly 8, 9. Younger, premenopausal women seem to experience more distress, higher levels of depression, cope less well and report poorer quality of life than older women 8-10.
Qualitative research into the experiences, needs and concerns of younger women has added detail and depth to our knowledge of the meaning of breast cancer. It has suggested that the experience of breast cancer is dependent on personal and social context 11, and that wider social and historical forces shape the perception of breast cancer and of women more generally 12.
No synthesis currently exists on the wider experiences of this patient group, or indeed, of the qualitative literature alone. In undertaking this meta-ethnography, we aimed to synthesise the existing qualitative literature on younger women with breast cancer. Identifying specific experiences, needs and concerns of younger women with breast cancer can inform service development and future research.
Methods
Type of literature review
Systematic search for literature
For phase one, the development of our intellectual interest and research focus, and phase two, the literature search, we carried out a keyword search in four electronic databases: Medline, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Applied Social Sciences Index and Abstracts (ASSIA). We used the following Medical Subject Headings (MeSH) search terms in accordance with definitions used by the National Library of Medicine 14:
Adult AND (Neoplasms OR Breast Neoplasms) AND Qualitative Research.
The search was conducted in January 2009. We identified papers from references/bibliographies listed in manuscripts that were retrieved from the electronic search (this produced an additional two papers which were included in the review). Search results were managed in Reference Manager v11 15 and a search log kept, detailing number of studies retrieved, de-duplicated and included at each stage (see Flowchart 1).
Inclusion criteria
The inclusion criteria were as follows: (i) population: women with breast cancer under the age of 45 at diagnosis; (ii) topic: experiences, needs and concerns; (iii) design: qualitative and (iv) language and date of publication: English language studies published in the last 20 years.
Two reviewers (GH and LM) independently screened titles and abstracts. Full papers were obtained for all studies that appeared to meet the inclusion criteria. Three reviewers (EA, GH and LM) collectively read these papers and through discussion reached agreement on inclusion for each paper.
Quality appraisal
This quality appraisal was applied to all studies and results are shown in Table 1.
| Recruitment specific | Interview open | Theoretical framework | Socio-cultural factors | Verification of analysis | Score | |
|---|---|---|---|---|---|---|
| Archibald et al. 38 | Y | N | N | N | Y | 2 |
| Billhult and Segesten 20 | Y | Y | Y | N | N | 3 |
| Connell et al. 21 | N | Y | Y | N | Y | 3 |
| Coyne and Borbasi 22 | Y | Y | Y | N | Y | 4 |
| Crompvoets 39 | N | Y | Y | N | N | 2 |
| Dow 23 | N | Y | N | N | N | 1 |
| Dunn and Steginga 24 | Y | Y | N | N | Y | 3 |
| Fitch et al. 25 | N | Y | N | Y | Y | 3 |
| Gluhoski et al. 34 | N | Y | N | N | N | 1 |
| Gould et al. 26 | Y | Y | N | Y | Y | 4 |
| Knobf 40 | N | Y | N | Y | Y | 3 |
| Knobf 27 | Y | Y | Y | Y | Y | 5 |
| Shapiro et al. 37 | Y | Y | Y | Y | N | 4 |
| Siegel et al. 29 | Y | Y | N | N | N | 2 |
| Siegel et al. 28 | N | Y | N | N | N | 1 |
| Takahashi and Kai 36 | Y | Y | N | N | Y | 3 |
| Thewes et al. 30 | Y | Y | N | N | Y | 3 |
Data extraction
In phases three and four, two reviewers (EA and LM) individually extracted data from the papers into a template holding key information about each paper. The tables containing the extracted data were discussed by three reviewers (EA, LM and GH) to ensure congruence of extraction and to begin the process of identifying patterns and common themes across papers.
Synthesis
In relation to phase five of the synthesis, the translation of studies into one another, one of the reviewers (GH) identified common concepts in the papers, which could be used as a descriptor of younger women's experiences of breast cancer and/or as an explanatory device to account for their experiences. Concepts had to be evident in at least a quarter of papers. These concepts were then discussed by the two reviewers (EA and LM), who had extracted data, and further extended to include other concepts that seemed relevant as a result of the extractions. All concepts were then discussed collectively by the whole research team for validation and to develop understanding of these concepts further.
Results
Description of studies
In total, 17 studies are included in this review. For a summary table see Appendix A.
Synthesis: conceptualising experiences, needs and concerns
Experience is defined here as an interactive and ongoing process of a person's subjective engagement with societal relations (for instance, material, economic or interpersonal practices and discourses) and therefore is thoroughly social 18.
These concepts are inter-related. The three processes—balancing, normalising and changing—characterise the issues that themselves are embedded within specific contexts. Contexts, issues and processes are now described in turn.
Social context
Young women stand at a particular point in the life-course; they have a biological age (primarily defined as being of child-bearing age) and a social age. In countries with relatively high GDP, there is a social expectation that young women will raise a family and be in paid employment. Expectations of a woman's role, however, may vary within different cultures within a country 7, 19. Motherhood is a key social context for the experience of breast cancer for young women 20-30. However, it has long been highlighted as a dominant ideology, which shapes the subjectivities of all women 31, 32. This wider social context, which includes an ideology of motherhood, gets negotiated at the individual level, within a ‘local’ context.
Local context
The ‘local context’ consists of an individual woman's circumstances, for instance, her relationship status and social support network. Young women are more likely to be in new relationships or no relationships than older women 33 and may therefore be more isolated when diagnosed with breast cancer 34. The quality of the relationship, in terms of support it can provide, is also a crucial factor. While a recent review 35 has cautioned against assuming that cancer generates relationship distress or dissolution, it did not discuss distress in relation to age. Some studies included in our review show that for young women, cancer may well introduce an element of relationship distress 28, 34, 36. Similarly, young women's social support networks may be less well established and more fluid than those of older women 22, 37. A further important aspect of a woman's breast cancer experience is her relationship with her medical team. As part of this relationship, accessibility, information provision and involvement of the patient in decision making are all important factors 30, 36, 38.
Issues
The changing experiences of young women that are attributable to cancer cluster around key issues. One issue that permeates all others is a feeling of being different and ‘out of sync’. A diagnosis of breast cancer under the age of 45 disrupts a normal life-course. This is because a life-threatening illness is socially perceived as normally only occurring among older people. This feeling of being ‘out of sync’ is in comparison with other young women without cancer and older breast cancer patients 24, 29. Feeling ‘out of sync’ connects to issues around reproduction (including pregnancy, fertility, contraception and menopause) 20-30; altered body image (primarily relating not only to mastectomised bodies and breast reconstruction but also to more general feelings of being in an altered body and, therefore, changes in embodied subjectivity) 20, 25-27, 34, 36-39; decreased levels of and changes to sexual activities 25-27, 34, 36, 38; and fear (of cancer recurrence, of their own mortality and its potential impact on their families) 20, 21, 23-25, 27-29.
Processes
These issues that connect with being ‘out of sync’ are experienced by young women in particular ways within their local contexts. Different ways of experiencing and responding to these issues are categorised into three different processes, namely, balancing, normalising and changing. These processes are drawn on by young women in various combinations.
Balancing
A key process characterising young women's experience of breast cancer is balancing. Young women with children are likely to be diagnosed with cancer when their children are still living at home. The emotional impact of cancer is well known, with cancer being described as an ‘emotional rollercoaster’ 22. Maintaining daily life and family routine is balanced against the intrusiveness of cancer-related demands 28. As a mother and partner, a young woman balances priorities of putting her own needs first in order to survive cancer with meeting the needs of her family. She also balances the physical and emotional demands of her children with the demands on herself, balances being honest about pain and fears with protecting her children from the severe impact of cancer on self and finds a balance between being needed and wanted by her children with recognising that if she dies her children will be looked after by others. Finally, she balances meeting financial needs of the household, by continuing in paid employment, with under-going treatment that is time-consuming and debilitating 20, 22, 25, 26.
Balancing, however, is not only a process pertinent to women with children. Young women, irrespective of motherhood status, balance focussing on the immediate priority to have treatment in order to survive with learning to live with symptoms such as early onset menopause 20, 22, 25-27. They weigh up the risks and benefits of particular treatments on survival as well as limiting damage for their longer term health. In addition, young women feel they need to balance their desire for a child after cancer with concerns over their own health and their families' and partner's wishes 23, 29.
Balancing different needs and demands is also driven by, and linked to, the process of normalising.
Normalising
Young women engage in normalising processes in relation to different issues of their breast cancer experience.
Young women see their mastectomised body as a deviation from a normative female body. While some women choose breast reconstruction as a way of re-gaining a representation of female normality, others opt to establish a new sense of normal by normalising bodily imperfection 39. Young women perceive that they are not achieving developmentally normative milestones, such as having children, and perceive that having a baby will restore a sense of normalcy in their lives in terms of their femininity and sexuality 23, 29. The ability to have a child proves a marker of their ability to function as a ‘normal’ woman, especially for those who have a mastectomy 23, 29.
Young women manage change in life as a consequence of breast cancer by ‘continuing with everyday life’ 20. At the same time, normalising is an important process that helps women minimise the disruption the cancer causes to their children's lives by acting the same as before their cancer diagnosis 20. The family returning to normal life is a way for them to cope and manage the impact of the breast cancer diagnosis 22.
Changing
Changing is a process that is frequently drawn upon by breast cancer patients. For young women, reproduction remains a key issue. In some cases, cancer limits reproductive choices for women by rendering them infertile after breast cancer treatment. Other women change their decision-making around reproduction because of fears in relation to their own survival and the potential negative effects of cancer treatments on their future children 29. Some women worry about the effects of hormonal contraception, but at the same time want safe and reliable methods to avoid unwanted pregnancy 21. Others are concerned that the hormonal changes during pregnancy could stimulate a cancer recurrence 21, 28, 29. For young women who decide to have children after cancer decision-making around breastfeeding changes because women worry about the ability to detect breast cancer in a lactating breast 21.
Changing is evident in relation to the women's sexual relationships. Depending on the supportiveness and understanding of a woman's partner, changes to sexual functioning are either integrated, and a sexual relationship is resumed after the treatment or in cases where the partner is demanding and unsupportive, relationship breakdown and separation or divorce is probable 36.
Most of these aspects of the changing process relate to negative changes in the women's lives. In this sense, they closely relate to the normalising process, signifying a desire to achieve a new sense of normality through changing the status quo. However, some young women experience positive changes. These young women perceive the cancer as a turning point, which enables positive changes in their lives, such as engaging more actively in self-care or taking up new activities without feeling guilty about the family 37. Thus, the experience of cancer facilitates a new sense of self to emerge.
Needs and concerns
Only 2 of the 17 papers explicitly report the needs of young women with breast cancer 26, 30. Most other papers discuss needs tangentially alongside the experiences of these young women or refer to them in their recommendations for practice and research.
Young women with breast cancer need support, especially peer support 24, 26, 37 and on-going support for life after treatment 22, 26, 40. Single women need support, both in terms of dating and talking to new partners about the cancer 26, 34. There is a need for more education and support for current partners of young women with breast cancer and their family more generally 23, 26, 36, 38. An important area of need for women with young families is the provision of childcare facilities at hospitals and information on how to communicate the illness to children 20, 22, 24-26, 28. There is a need for professional counselling 21, 24, 26 and spiritual support 26. A lack of information is perceived on a range of issues. In particular, information about reproductive issues is needed, ranging from information about potential infertility to information about contraception and pregnancy after cancer 20, 21, 23-27, 29, 30, 40. Health-care professionals need to engage more with reproductive and fertility-related concerns. More information about the potential impact of the cancer on sexuality is needed—in particular, information on treatment side effects and the emotional consequences of having breast cancer 24-26, 34, 36, 38, 40.
There is a need for more information on treatment side effects. In particular, sexuality and fertility are areas of concern along with the more general long-term side effects such as osteoporosis 23, 26, 27, 30, 38, 40.
Discussion and conclusions
This review is the first synthesis of the qualitative literature on the specific experiences of young women with breast cancer that we are aware of. We have drawn together published evidence of the past 20 years and developed a conceptual model that adds depth and breadth to the existing knowledge base.
Our synthesis provides a systematic overview of the processes (balancing, normalising and changing), which women use to integrate their new experiences of having cancer into their lives. It discusses how young women apply these to different issues and in different local contexts. Existing papers on young women's experiences have largely only focused on particular aspects of women's experiences, such as sexuality, menopause or reproduction. Only 2 of the 17 papers 25, 27 mentioned all five issues (reproduction, body image, fear, sexual activity and feeling ‘out of sync’) that we identified as important. This focus on particular aspects of the breast cancer experience can be useful, but is less helpful when trying to understand the overall experience of breast cancer diagnosed at a young age. It is useful to tease out this ‘overall experience’ to provide health-care professionals with an understanding of the varied aspects of having breast cancer at a young age as well as to enable women newly diagnosed with breast cancer to understand the various ways in which this experience might impinge on them. Our conceptual model is the first to draw together the processes, issues and contexts that define young women's experiences of having breast cancer.
Although our conceptual model was developed on the basis of young women's experiences, it may also be applicable to the experiences of other people living with cancer. Young males who had received treatment for testicular cancer identified a range of comparable issues, such as fertility, physical and emotional challenges and other assaults on their sense of self 41, 42. Similarly, ovarian cancer may impact on body image and reproductive concerns 43. Our model may also be relevant to younger people living with other cancers, but this would need further testing.
Limitations
The conceptual model described for young women's experiences of breast cancer has some potential limitations. Mainly, these limitations are related to the original research underlying the model, which became apparent when applying our quality criteria to the papers.
A sizeable number of studies (7/17) focused on this younger age group as a by-product of conducting a larger study. Hence, interview or focus group schedules may not have been targeted to this group specifically, which may have limited the depth and breadth of the topics explored. On the other hand, it could be argued that the fact that the author's felt drawn to issues of young women highlights the uniqueness and significance of their age compared to older women.
Our quality appraisal evaluates the use of theoretical frameworks within the research studies analysed more explicitly than Dixon-Woods et al. 17. Eleven out of 17 of the included studies did not discuss a theoretical framework, or refer to it, in the analysis or discussion of their papers. We believe that the chosen theoretical framework should be made more explicit in qualitative studies, as it is so closely linked to the way in which data are collected and analysed.
Although it is generally acknowledged in qualitative research that social and cultural factors shape our experiences, only 5 out of 17 of the included studies referred to these factors, and the samples of all studies were heavily weighted towards white, middle-class women. The lack of participants from varied cultural backgrounds, and the lack of cultural sensitivity in the analyses, ought to be addressed in future research to more adequately reflect young women with breast cancer in general and the impact of breast cancer on women with different cultural backgrounds.
Lastly, we acknowledge that qualitative data analysis is a creative process and open to interpretation. Thus, it is particularly important to check the coherence of the analysis and test its ecological validity, that is, its meaningfulness. This may be done in conjunction with the participants as experts of their own experience, by providing a clear audit trail of how the researchers arrived at their endpoints, or can take the shape of triangulation with other researchers in the area. Of 17 studies, 10 used some form of verification procedure, though it was not always explicitly described.
However, despite these methodological limitations, our meta-ethnography provides an overview of current evidence on the experiences, needs and concerns of young women with breast cancer.
Clinical services/practice relevance
Since cancer is uncommon in this age group, young women are often worried that cancer services may not address their unique needs and concerns. They are concerned, for instance, that effects such as early onset menopause are not fully acknowledged or understood by professionals, and that the longer term impact of treatments on younger women are not known 26, 27. This synthesis describes the experiences, needs and concerns specific to younger women, which health professionals should be aware of and take into account during their interactions with this group. However, a discussion is also necessary about who ought to address these women's needs, and about the boundaries between the responsibilities of clinical services and those of families and friends of patients. Not all needs can be addressed by clinical services, even if they arise out of illness, but clarification with the patients of what can and cannot be addressed might be useful.
Conclusions
To the best of our knowledge, this meta-ethnography provides a comprehensive overview of the specific experiences, needs and concerns of young women with breast cancer. The conceptual model developed demonstrates that to understand women's experiences social and local contexts should be taken into account. Aside from experiencing cancer at an unusual age, young women with breast cancer face a number of age-specific issues linked to motherhood and reproduction. Three processes were identified that women use to deal with these issues and integrate cancer-related concerns into their lives. We trust that this model may provide a basis for practitioners to address the concerns of young women with breast cancer more adequately and comprehensively and also provide a platform for further research.
Appendix A
| Author | Country | Sample | Recruitment | Theoretical framework, method and analysis | Verification of Data | Findings | Concepts |
|---|---|---|---|---|---|---|---|
| Archibald et al. 38 | Canada | N = 30; mean agea = 45 yrsb; range 31–57 yrs; TSDc: range 1–4 yrs | Support groups; adverts, letters through Canadian Cancer Society, New Brunswick | Semi-structured interviews Thematic analysis | Triangulation Independent coding | Changes in sexual functioning; emotional impact of sexual changes – worry and uncertainty, frustration and anger, loss, guilt, indifference | Sexual functioning; Relationships; Sense of self |
| Billhult and Segesten 20 | Sweden | N = 10; mean age = 41.6 yrs; range 32–48 yrs; TSD = mean 14.1 mthsd | Information group about lymphodoema post-operatively | Phenomenology; open-ended interviews | N/A | Strategies to balance life as mother with having cancer: continuing with daily life and normality; drawing on strength of motherhood to balance conflicting forces | Balancing normal routines; strength of motherhood |
| Connell et al. 21 | Australia | Phase 1 n = 35Phase 2 n = 13Mean age = 37 yrs; Range 29–40 yrs; TSD = median 26 mths (range 5–37 mths) | Flyers at BCe events and venues; support groups | Social constructionism/phenomenology; longitudinal Semi-structured interviews | Verification with participants; audit trail; triangulation | Perceptions of fertility changed over time; concerns around use of safe and reliable contraception; resistance to hormonal contraceptives; breastfeeding decisions changed over time | Fear of recurrence; fertility; confusion |
| Coyne and Borbasi 22 | Australia | N = 6; median age = 37 yrs; range 29–43 yrs; TSD: max 12 mths | Unclear | Feminist enquiry; open-ended interviews; participatory research process | Verification with participants | Diagnosis – having to be strong; described as most stressful time; impact on the family: interplay between having BC and being a mother; life after treatment: family remained on an emotional rollercoaster after treatment | Emotional rollercoaster Balancing act Use of humour ‘Having to hold it all together’ Uncertainty Optimism about future |
| Crompvoets 39 | Australia | N = 1; aged 50 yrs; aged 40 yrs at time of first diagnosis, aged 47 yrs at recurrence | Unclear | Feminist enquiry Case study Narrative analysis | N/A | Breasts prior to mastectomies identified as essential part of sense of self; body and self-inextricably linked; mastectomised bodies seen as physically and emotionally incomplete; negative feelings about breast loss not anticipated | Normality Complete womanhood Identity Sexuality Being ‘complete’ |
| Dow 23 | USA | N = 16; mean age at diagnosis = 29.6 yrs; range 25–35 yrs; mean age at interview = 38.8 yrs (range 32–45 yrs) | Oncology clinic | Semi-structured interviews; review of radiation treatment records; thematic and content analysis | N/A | Having Children were cherished goal, desire for sense of normalcy, reconnecting with others; concerns about pregnancy– some related to being young mother but some explicitly related to having BC | Normalcy Fear of recurrence Motherhood Loss Integrating cancer into life |
| Dunn and Steginga 24 | Australia | Phase 1N = 23, mean age 37 yrs, range 31–47 yrs; phase 2, N = 21; phase 3, N = 21 | Newsletter | Multi-angulated method: literature review, focus groups, semi-structured interviews and 3-round iterative survey | Verification with participants | Worry to not see children grow up; 3 indicators for defining young as relates to BC– the woman is of child bearing age, the woman has young children the woman has not yet reached menopause | Defining ‘young’; Infertility Loss of choice about children; different to women your age; too young to get cancer; Unrealistic media portrayal of young women |
| Fitch et al. 25 | Canada | N = 28; age range 28–42 yrs; mean TSD since diagnosis = 3.8 yrs | Random selection of cancer registry sub-sample | Open-ended interviews; telephone interviews; content and theme analysis | Triangulation | Everything depends on acting now–intense desire to stay alive; everything is out of sync–feeling different to women of your age; cancer invaded whole life–different lives as result of breast cancer | Balancing act– ‘being a woman’ & ‘being a mother’; Identity Unfairness of cancer Guilt Putting oneself first Betraying bodies |
| Gluhoski et al. 34 | USA | N = 16; mean age = 33.5 yrs; range 22–42 yrs; TSD = mean 37 mths (range 8 mths–8 yrs) | Cancer organisations; Memorial Sloan-Kettering Cancer Center | Sociodemographic and medical information questionnaire Open-ended interviews Thematic analysis | N/A | Pessimism regarding future relationships; fears about disclosing illness; negative body image; impaired sexuality Fears of rejection by partners Sense of isolation and inadequate support | Isolation Rejection Fear Sexuality Changes in appearance Relationships |
| Gould et al. 26 | Canada | N = 65; mean age 37 yrsRange 26–45 yrs; mean age 41 yrs at time of study | Newspaper; Canadian Breast Cancer Network newsletter; support groups; community cancer organisations; cancer centres and clinics | Relativist paradigm Focus groups Thematic and content analysis | Verification with participants | Information, support and services did not match women's age or life stage; lack of emotional and instrumental support for themselves and families; diagnostic challenges associated with being ‘atypical case’ | ‘Nothing fit me’ Lack of support & information Unique, age-specific challenges |
| Knobf 40 | USA | N = 27; mean age 40.8 yrs (±3.7); TSD = mean 4.5 yrs (±0.43; range 1–9 yrs). | Oncology clinic | Grounded theory Semi-structured interviews; informal discussions with specialists; field notes, memos and lay women's writings; constant comparative method | Triangulation Audit trail | Variety of changes—none to severe; variety of symptoms, e.g. hot flashes, insomnia, vaginal dryness, changes in libido; long-term effects of menopause—osteoporosis and heart disease | Sexual Functioning Distress Menopausal Symptom Experience Lack of Communication |
| Knobf 27 | USA | N = 27; mean age = 40.8 yrs; TSD: mean 4.5 yrs(range 1–9 yrs) | Oncology clinic | Grounded theory Semi-structured interviews Informal discussions with specialists Field notes, memos and lay women's writings Constant comparative method | Triangulation Audit trail | Vulnerability is the basic social psychological problem for women with treatment-induced premature menopause Basic process of responding to vulnerability: ‘carrying on’ (4 stages) Movement through stages not linear—moved back and forth | Carrying on Vulnerability Uncertainty Loss Isolation Resiliency Carrying On |
| Shapiro et al. 37 | Canada | N = 3 married couples: ages of women at diagnosis 35, 42, 48 yrsAges of husbands at diagnosis 37, 44, 45 yrs TSD: mean = 4 yrs | Oncology clinic Cancer centre Individuals in community | Grounded theory Open-ended interviews Narrative analysis | N/A | Concept of change permeated accounts; continuum of change from no change to complete changes; Three core themes: Back to ‘normal’; rebirth and turning point; main changes in relation to self, treatment effects, menopause, relationships, lifestyle | Change Meaning Identity Self-awareness Individual context |
| Siegel et al. 29 | USA | N = 50; mean age = 33.4 yrs; range 22–44 yrs); TSD = mean 33 mths (range 8 mths–8 yrs) | Share, American Cancer Society and Cancer Care; Memorial Sloan-Kettering Cancer Centre | Open-ended interviews; content analysis | N/A | Deterrents and incentives to becoming pregnant | Fear of recurrence Risk Loss Motherhood Child as Life Affirming Normalcy |
| Siegel et al. 28 | USA | N = 34; mean age = 30.6 yrs; range 22–35 yrs; TSD = mean 38 mths (range 13 mths–8 yrs) | Same as Siegel et al., 1997 above | Sociodemographic and medical information questionnaire Open-ended interviews Thematic analysis | N/A | Reactions to untimely diagnosis; guilt about impact of illness on partner; lost opportunities for child bearing feeling different and isolated; uncertainty about the future; concerns about children | Loss Motherhood Untimely diagnosis Fear Uncertainty about the future Relationships |
| Takahashi and Kai 36 | Japan | N = 21; mean age = 42.2 yrs; range 28–54 yrsMedian length between surgery and first interview = 17 mths (range 4–123 mths)Second interview with n = 11Third interview with n = 1 | Breast surgery clinics | Grounded theory Semi-structured interviews | Verification with participants Triangulation | Hesitation in resuming sex after surgery; changes after resuming sex; coping attitudes to the change Long-term sexual relationship | Sexual Functioning Change Relationships Fear of rejection |
| Thewes et al. 30 | Australia | N = 24; median age = 34 yrs; range 26–45 yrs; TSD = N = 6 max 12 mths prior; N = 11 diagnosed >2 yrs prior | Oncology clinic | ‘Transcendental realism’ Focus groups Semistructured telephone interviews Quantitative assessment of preferred communication strategies Thematic analysis | Yes–not specified, informed by Miles and Huberman approaches | Fertility and menopause-related information: satisfaction, Preferred timing and mode, preferred media; psychosocial impact of unmet fertility and menopause related information needs | Fertility Change Loss Information Needs Menopause Support |
- a aWhere given, this was mean age at diagnosis.
- b bYrs = years.
- c cTSD = time since diagnosis.
- d dMths = months.
- e eBC = breast cancer.
