Authors

  1. Campbell-Enns, Heather
  2. Woodgate, Roberta RN, PhD

Abstract

Review question/objective: What are the psychosocial experiences of women with breast cancer across the lifespan, including similarities and differences in the psychosocial experiences of younger, middle-aged and older women with breast cancer?

 

Background: The experience of a life threatening illness, such as cancer, requires a person to consider an array of emotional, medical, social and existential demands.1 Specific to breast cancer, research shows that the experience of diagnosis and treatment of breast cancer may result in considerable distress.2It is also known that a diagnosis of invasive breast cancer propels women into a time of uncertainty3,4, that brings fear5,6 and emotional work.7 This disease oftentimes challenges a woman's identity8, self-esteem9,10, body image2,11 and relationships.1,12 However, even with these commonly felt distresses, most women adjust well to a breast cancer diagnosis and the treatments experienced, particularly if they do not experience a recurrence of cancer.13 Protective factors for distress include supportive care networks, such as family and support groups and professional resources provided by clinical staff, such as timely referrals to specialized services.14Although most women adjust well to breast cancer, understanding distressing experiences among this population is crucial because, when experienced, the negative psychosocial impacts can be significant.15 Women who do experience distress due to breast cancer are at a risk of distress accompanying them through the breast cancer journey and impacting their long-term quality of life.14,16,17

 

Although literature suggests that the psychosocial experience of a breast cancer diagnosis may be different across the lifespan4, less is known about the similarities and differences in the psychosocial experience between younger and older women with breast cancer. However, this study4examines the experience of one age group and no comparisons between different age groups in this or other studies have been found at this time. Among what is known, younger women with breast cancer are at a heightened risk of anxiety and depression in comparison to older women and younger women experience more worries about their careers and finances than older women.14,15,17,18 There is also evidence that young women perceive their quality of life to be lower than older women as a result of breast cancer.17 This may be attributed to poorer emotional wellbeing, specific cancer-related concerns, depression and intrusive thoughts for this younger group.19 On the other hand, older women with breast cancer experience more health problems than younger women in survivorship, independent of receiving chemotherapy.17,20 In general, older breast cancer survivors experience overall better quality of life and mental health than their younger counterparts, but they tend to have poorer physical health and health-related quality of life due to comorbid conditions.17,21 Another risk factor for psychosocial distress is low income, which may be particularly salient for older women who are more likely to be on a fixed income than their younger counterparts.17 However, literature suggests that a higher degree of psychosocial adaptation can be found among older women with breast cancer because these women have had more life experience, including prior experiences with the health care system14, witnessing the diagnosis of others with cancer14, and having few competing demands.22 It is thought that these factors contributed to coping and successful adaption to the disease among older women.14

 

When studying how women acclimatize to breast cancer in the early stages of the cancer journey, it has been found that the main concerns for these women were concepts connected to identity.23 Breast cancer threatens women's self-integrity and the restructuring of life after a cancer diagnosis calls for the new experiences and feelings to be integrated into a revised self-narrative, sometimes referred to as 'meaning-making'.24 Little is understood about the differences between younger and older women in their construction of identity or how they make meaning in the context of breast cancer. What is known is that, for younger women, the diagnosis of cancer is shocking7, and is an opportunity to contemplate mortality.25 Older women are more likely to approach their diagnoses in a matter-of-fact manner associated with the expected process of aging.26

 

The concept of body image can be found as a focus of breast cancer literature which describes the level of investment women put into their body in order to help them determine their wellbeing.27 The disruption of body image in breast cancer is attributed to hair loss, as well as changes in the breast and weight.2 Studies show younger women do seek normality in their breasts following mastectomy28, and seek breast reconstruction more often than older women.29 Regarding older women with breast cancer, little is known about the experience of specific body image concerns, such as short- or long-term changes in the body due to treatment. It is known that older women with cancer experience body dissatisfaction and may even experience higher levels of dissatisfaction than younger women, possibly due to more persistent problems with the physical functioning of their body.30

 

It is also known that the diagnosis and treatment of breast cancer affect relationships including spousal relationships31, and relationships with children32,33 and older parents.34 As a woman with breast cancer experiences vulnerabilities, so too does her family.35 Spouses and partners of women with breast cancer work to adjust roles and to balance added household responsibilities, particularly during times of treatment.36 Children of women with breast cancer are impacted by the level of interaction with their mothers, with increased positive mother-child interactions associated with the increased wellbeing of family members.37 On the other hand, children are impacted negatively by a negative change in the mother's mood or marital tension.37 Lastly, parents of women with breast cancer are also affected since, they too, need to come to terms with the early timing of their daughters' diagnoses.34

 

Family relationships are vital for women with cancer because these relationships provide a high degree of social support, including emotional, tangible, informational and experiential support.38 Literature shows family relationships are improved for both younger and older breast cancer survivors.20 However, the intimate relationships of younger women are more likely to be strained in comparison to the intimate relationships of older women in the context of breast cancer survivorship.20 Also, younger adults with cancer experience increased loneliness39, and a greater sense of isolation from peer and support networks than older adults perhaps because they perceive themselves to be different from their peers as a result of cancer.4,40

 

This incomplete understanding of the psychosocial experience of women with breast cancer across the lifespan requires an urgent need for research to facilitate a greater understanding of the psychosocial needs of these women. To allow for the effective delivery of appropriate cancer care support to these populations, a greater understanding of the unmet needs of these women must occur, including an understanding of the similarities and differences of younger and older women with this disease. A synthesis of literature from multiple contexts of the psychosocial experiences of younger and older women with breast cancer will add to the understanding of the experiences of these women. No systematic review on this topic was found when searching Cochrane Database of Systematic Reviews, PROSPERO and the JBI Database of Systematic Reviews and Implementation Reports.

 

Article Content

Inclusion criteria

Types of participants

This review will consider studies that include women with a breast cancer diagnosis of any type or stage, with the exception of a cancer recurrence. Women with a recurrence will be excluded since the experience of recurrence has been shown, through research, to be dissimilar to the experience of the first diagnosis and treatment of the disease. The experience of women in all treatment modalities will be included (i.e. lumpectomy, mastectomy of all types with or without breast reconstruction, chemotherapy, radiation therapy and hormone therapy).

 

This review will consider studies that include age as a primary area of interest in the study design. That is, the study will focus on: 1) younger women or older women, or 2) a psychosocial issue and compare it across the lifespan from younger to older. The definition of "younger" and "older" will not be described by the reviewers prior to the review because no consensus has been reached in the literature about defining "young" and "old" in cancer. However, this will be observed in the studies and reported on in the analysis. Therefore, studies that identify the participants as "young" and/or "old", and provide a range of ages of the participants, will be included. Studies will be excluded if they do not define their population(s) by age or if they combine younger and older populations together.

 

Phenomenon of interest

The phenomenon of interest is women's psychosocial experience of breast cancer, including the social, psychological, emotional, spiritual and quality-of-life aspects of cancer.

 

Context

This review will include women from all geographical regions. It will also include all cancer care contexts (e.g. acute care hospital, ambulatory care setting, home care, primary health care).

 

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, action research and feminist research.

 

Search strategy

The search strategy aims 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 title and abstract, and of the index terms used to describe the articles. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference lists of all identified reports and articles will be searched for additional studies. Studies published in English will be considered for inclusion in this review. Studies published from 1990 to the present will be considered for inclusion in this review based on the timeframe in which psychosocial research in breast cancer began.

 

The databases to be searched include:

 

MEDLINE, CINAHL, PsychINFO, SCOPUS, EMBASE (European literature), Web of Science, Google Scholar, ProQuest

 

Initial keywords to be used will be:

 

Breast cancer OR breast carcinoma; AND

 

Psychosocial experience OR psychosocial distress OR psychosocial impact

 

Assessment of methodological quality

Qualitative papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion, or with a third reviewer.

 

Data collection

Qualitative data will be extracted from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the populations, study methods and outcomes of significance to the review question and specific objectives.

 

Data synthesis

Qualitative research findings will, where possible be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order 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. One challenge in this review is the synthesis of different age groups. This will be done by observing the age ranges in the articles and aggregating the findings for each age group in order to distinguish similarities and differences in the groups. It is expected that these age groups will show some variation between articles. However, because this review is looking at 'younger' and 'older', there is not likely to be an overlap in the age groups (adding a third 'middle-aged' group would be more complicated and therefore is not being considered in this review).

 

Conflicts of interest

There are no conflicts of interest.

 

Acknowledgements

Ms Campbell-Enns holds a Canadian Institutes of Health Research (CIHR) Fredrick Banting and Charles Best Canada Graduate Doctoral Award.

 

Dr Woodgate is a Canadian Institutes of Health Research (CIHR) Applied Chair in Reproductive, Child and Youth Health Services and Policy Research.

 

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Appendix I: Appraisal instruments

 

QARI appraisal instrument[Context Link]

Appendix II: Data extraction instruments

 

QARI data extraction instrument[Context Link]

 

Keywords: breast cancer; psychosocial experience; lifespan; younger women; older women; qualitative; systematic review