Women’s decision-making about their health care: views over the life cycle
Introduction
Over the last 7 years, the first author on this paper has had the opportunity to work with three separate research teams examining women’s experiences regarding the important health issues of prenatal genetic testing, specifically maternal serum screening (MSS) [1], hormone replacement therapy (HRT) [2], and the use of complementary/alternative medicine (CAM) in the treatment of breast cancer [3]. Each of these studies was conceived and implemented independent from the other with the only common link being the one investigator. What became apparent at the completion of the three studies was that another common link existed—the women’s decision-making process which was remarkably similar across all three studies. While the medical circumstances explored in the studies were both diverse and distinct, the participants’ needs and expectations regarding the decision-making process reflected a collective voice. Faced with a serious decision regarding their health, one which could have positive or negative implications on their future health and well-being, participants demonstrated a consistent chorus of desiring an active role in the decision-making process.
Although childbirth and menopause are natural events occurring in the cycle of a woman’s life, they have been medicalized to the extent that many women feel unequipped to actively participate in decisions regarding interventions or treatments impacting on their health and well-being. In contrast, the diagnosis of breast cancer propels women into the medical milieu in an attempt to eradicate this terrifying and life altering disease. For many women with breast cancer, the speed at which the diagnosis is made, and the treatments implemented, can be overwhelming and destabilizing. Being an active participant in the decision-making process is not only impeded by the often rapid course of events but also the fear and anxiety accompanying the diagnosis and the proposed invasive treatments.
The decision-making process for all of these health issues becomes more complex and confusing when the information available is either conflicting, unclear, lacking adequate evidence or deeply rooted in personal beliefs and values. The emotional entanglements of worrying about the birth of a child with Down Syndrome, being incapacitated by fractures secondary to osteoporosis post-menopause, or dying of breast cancer can severely impede a woman’s ability to actively participate in the decision-making process.
Prior research has shown that the amount and quality of information that women have at their disposal help determine their decision to undergo prenatal testing [4]. Literature on decision-making indicates that women can be assisted by decision aids [5], [6], [7] in deciding about hormone replacement therapy (HRT). The importance of participating in decisions about the type of surgery chosen by breast cancer patients [8] has been explored as well as the role of patients in the decision-making process about treatment options [9]. When women come to decide on the use of complementary/alternative medicine (CAM) to treat their breast cancer the decision is often based more on personal beliefs and values rather than on scientific evidence [10].
The three qualitative studies, conducted by the current authors, individually provided some insights on how and why some women made certain health decisions [1], [2], [3]. The purpose of the present paper is a further elucidation of the common themes, emerging across these studies, regarding women’s decision-making. The paper examines the process that women undergo in making an important decision about their health and well-being including: where and how they acquire the necessary information to make a decision; what factors influence their decision; who supports them in the decision-making process; and how do they reconcile confusing or conflicting information.
Section snippets
Data collection and analysis
Each of the three studies used the qualitative research strategy of focus groups which has become a well respected means of gathering qualitative data in primary care [11]. The use of focus groups is particularly salient when the topic of inquiry is new and underdeveloped [11].
All the studies gathered data using six [1], [3] to eight focus groups [2] which fulfilled specific criteria, such as maximum variation sampling and continuing data collection until saturation was achieved, to ensure
Findings
The analysis of each of the three studies revealed common themes in the area of decision-making. The women initiated the decision-making process by engaging in information seeking behavior. They drew upon a variety of information sources with the main two being their social support networks and their health care professionals. Independent research, such as reading and surfing the Internet, were other important sources of information. The women also expressed a desire for information sharing and
Discussion
When it came to making a decision to participate in prenatal genetic screening, to take HRT, or to seek CAM for treating breast cancer, participants in all three studies wished to be fully engaged in the decision-making process. They initiated the process by being active seekers and purveyors of information, relying on their social support networks, relationships with trusted health care professionals and themselves as sources of information.
The important role of social support networks in the
Practice implications
The collective findings of these studies have important practice implications for health care professionals caring for women across the life cycle. First, information sharing is an essential component of care and a central aspect of the decision-making process. Health care professionals need to participate in a dialogue with women that places an emphasis on sharing rather than simply giving information. Engaging in such a dialogue may lead to better and more informed decisions, and potentially
Conclusion
The composite data described in this paper reflects only a snapshot of the myriad responses experienced by women as they embark on difficult decisions about their health care. Yet the voices of these women are strong and replete with the desire, as well as the need, to be actively engaged in how and who will participate in their present and future health and well-being. Their stories and experiences of the decision-making process across the life cycle provide valuable information for health
Acknowledgements
The authors acknowledge the valuable contributions of their co-investigators on the three studies that form the body of this current work. A.J. Reid; P. Pugh; H. Batty; S. Cummings; M. Powell; A. Gavin; M.A. Kennard and M. Stewart.
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