Impact of national guidelines on use of BRCA1/2 germline testing, risk management advice given to women with pathogenic BRCA1/2 variants and uptake of advice.

BACKGROUND: This nationwide study assessed the impact of nationally agreed cancer genetics guidelines on use of BRCA1/2 germline testing, risk management advice given by health professionals to women with pathogenic BRCA1/2 variants and uptake of such advice by patients. METHODS: Clinic files of 883 women who had initial proband screens for BRCA1/2 pathogenic variants at 12 familial cancer clinics between July 2008-July 2009 (i.e. before guideline release), July 2010-July 2011 and July 2012-July 2013 (both after guideline release) were audited to determine reason given for genetic testing. Separately, the clinic files of 599 female carriers without a personal history of breast/ovarian cancer who underwent BRCA1/2 predictive genetic testing and received their results pre- and post-guideline were audited to ascertain the risk management advice given by health professionals. Carriers included in this audit were invited to participate in a telephone interview to assess uptake of advice, and 329 agreed to participate. RESULTS: There were no significant changes in the percentages of tested patients meeting at least one published indication for genetic testing - 79, 77 and 78% of files met criteria before guideline, and two-, and four-years post-guideline, respectively (χ = 0.25, p = 0.88). Rates of documentation of post-test risk management advice as per guidelines increased significantly from pre- to post-guideline for 6/9 risk management strategies. The strategies with the highest compliance amongst carriers or awareness post-release of guidelines were annual magnetic resonance imaging plus mammography in women 30-50 years (97%) and annual mammography in women > 50 years (92%). Of women aged over 40 years, 41% had a risk-reducing bilateral mastectomy. Amongst women aged > 40 years, 75% had a risk-reducing salpingo-oophorectomy. Amongst women who had not had a risk-reducing bilateral mastectomy, only 6% took risk-reducing medication. Fear of side-effects was cited as the main reasons for not taking these medicines by 73% of women. CONCLUSIONS: Guidelines did not change the percentages of tested patients meeting genetic testing criteria but improved documentation of risk management advice by health professionals. Effective approaches to enhance compliance with guidelines are needed to improve risk management and quality of care.

A mixed methods analysis of experiences and expectations among early-career medical oncologists in Australia.

AIM: A viable and sustainable medical oncology profession is integral for meeting the increasing demand for quality cancer care. The aim of this study was to explore the workforce-related experiences, perceptions and career expectations of early-career medical oncologists in Australia. METHODS: A mixed-methods design, including a survey (n  =  170) and nested qualitative semistructured interviews (n  =  14) with early-career medical oncologists. Recruitment was through the Medical Oncology Group of Australia. Qualitative data were thematically analyzed and for the survey results, logistic regression modeling was conducted. RESULTS: Early-career medical oncologists experienced uncertainty regarding their future employment opportunities. The competitive job market has made them cautious about securing a preferred job leading to a perceived need to improve their qualifications through higher degree training and research activities. The following themes and trends were identified from the qualitative and quantitative analyses: age, career stage and associated early-career uncertainty; locale, professional competition and training preferences; participation in research and evolving professional expectations; and workload and career development opportunities as linked to career uncertainty. CONCLUSION: Perceived diminished employment opportunities in the medical oncology profession, and shifting expectations to be "more qualified," have increased uncertainty among junior medical oncologists in terms of their future career prospects. Structural factors relating to adequate funding of medical oncology positions may facilitate or inhibit progressive change in the workforce and its sustainability. Workforce planning and strategies informed by findings from this study will be necessary in ensuring that both the needs of cancer patients and of medical oncologists are met.

A Qualitative Study of Medical Oncologists' Experiences of Their Profession and Workforce Sustainability.

BACKGROUND: Medical oncology is a steadily evolving field of medical practice and professional pathway for doctors, offering value, opportunity and challenge to those who chose this medical specialty. This study examines the experiences of a group of Australian medical oncologists, with an emphasis on their professional practice, career experiences, and existing and emerging challenges across career stages. METHODS: In-depth qualitative interviews were conducted with 22 medical oncologists, including advanced trainees, early-career consultants and senior consultants, focusing on: professional values and experiences; career prospects and pathways; and, the nexus of the characteristics of the profession and delivery of care. RESULTS: The following themes were emergent from the interviews: the need for professional reinvention and the pressure to perform; the importance, and often absence, of mentoring and feedback loops; the emotional labour of oncology; and, the impact of cascading workload volume on practice sustainability. CONCLUSIONS: Understanding professional experiences, career trajectories and challenges at the workforce level are crucial for understanding what drives the oncological care day-to-day. The results indicate that there are considerable potential tensions between the realities of professional, workforce demands and expectations for patient care. Such tensions have real and significant consequences on individual medical oncologists with respect to their futures, aspirations, satisfaction with work, caring practices, interactions with patients and potentially therapeutic outcomes.

Talking about sex after cancer: a discourse analytic study of health care professional accounts of sexual communication with patients.

There is consistent evidence that health care professionals (hcps) are not addressing the sexual information and support needs of people with cancer. Thirty-eight Australian hcps across a range of professions working in cancer care were interviewed, to examine constructions of sexuality post-cancer, the subject positions adopted in relation to sexual communication, and the ways in which discourses and subject positions shape information provision and communication about sexuality. Participants constructed sexual changes post-cancer in physical, psychological and relational terms, and positioned such changes as having the potential to significantly impact on patient and partner well-being. This was associated with widespread adoption of a discourse of psychosocial support, which legitimated discussion of sexual changes within a clinical consultation, to alleviate distress, dispel myths and facilitate renegotiation of sexual practices. However, this did not necessarily translate into patient-centred practice outcomes, with the majority of participants positioning personal, patient-centred and situational factors as barriers to the discussion of sex within many clinical consultations. This included: absence of knowledge, confidence and comfort; positioning sex as irrelevant or inappropriate for some people; and limitations of the clinical context. In contrast, those who did routinely discuss sexuality adopted a subject position of agency, responsibility and confidence.

Men's experiences of sexuality after cancer: a material discursive intra-psychic approach.

Men can experience significant changes to their sexuality following the onset of cancer. However, research on men's sexuality post-cancer has focused almost exclusively on those with prostate and testicular cancer, despite evidence that the diagnosis and treatment for most cancers can impact on men's sexuality. This Australian qualitative study explores the experiences of changes to sexuality for 21 men across a range of cancer types and stages, sexual orientations and relationship contexts. Semi-structured interviews were analysed with theoretical thematic analysis guided by a material discursive intra-psychic approach, recognising the materiality of sexual changes, men's intrapsychic experience of such changes within a relational context and the influence of the discursive construction of masculine sexuality. Material changes included erectile difficulty, decreased desire, and difficulty with orgasm. The use of medical aids to minimise the impact of erectile difficulties was shaped by discursive constructions of 'normal' masculine sexuality. The majority of men reported accepting the changes to their sexuality post-cancer and normalised them as part of the natural ageing process. Men's relationship status and context played a key role managing the changes to their sexuality. We conclude by discussing the implications for clinical practice.

The gendered construction and experience of difficulties and rewards in cancer care.

Women cancer carers have consistently been found to report higher levels of distress than men carers. However, there is little understanding of the mechanisms underlying these gender differences in distress, and a neglect of rewarding aspects of care. We conducted in-depth semistructured interviews with 53 informal cancer carers, 34 women and 19 men, to examine difficult and rewarding aspects of cancer care. Thematic analysis was used to analyze the transcripts. Women were more likely to report negative changes in the relationship with the person with cancer; neglect of self, social isolation, and physical health consequences; anxiety; personal strength and growth; and to position caring as a privilege. Men were more likely to report increased relational closeness with the person with cancer, and the burden of additional responsibilities within the home as a difficult aspect of caring. We interpret these findings in relation to a social constructionist analysis of gender roles.

Renegotiating sex and intimacy after cancer: resisting the coital imperative.

BACKGROUND: Previous research on sex and intimacy in the context of cancer has focused on documenting sexual changes and difficulties, primarily focusing on heterosexual individuals who have sexual or reproductive cancers. Analyses of sexual renegotiation and the social construction of sex are largely absent from the research agenda. OBJECTIVE: The objective of this study was to explore renegotiation of sex in individuals with cancer, and in partners, across a broad range of cancer types and relational contexts. METHODS: Semistructured interviews were conducted with 44 people with cancer (23 women, 21 men) and 35 partners (18 women, 17 men), 86% of whom identified as heterosexual. The data were analyzed with theoretical thematic analysis, from a material-discursive-intrapsychic perspective. RESULTS: Renegotiation of sex or intimacy was reported by 70% of participants, reflected in 3 themes: "resisting the coital imperative: redefining 'sex,'" "resisting the coital imperative: embracing intimacy," and "adopting the coital imperative: refiguring the body through techno-medicine." The importance of relational context was reflected in the theme "the inter-subjective nature of sexual re-negotiation: relationship context and communication." CONCLUSIONS: Whereas previous research has focused on embodied changes associated with sexuality after cancer, or their psychological consequences, the findings of the present study suggest that hegemonic constructions of "sex," in particular the coital imperative, are central to the experience and negotiation of sex and intimacy after cancer. IMPLICATIONS FOR PRACTICE: Resistance of the coital imperative should be a fundamental aspect of information and support provided by health professionals who seek to reduce distress associated with sexual changes after cancer.

Strength through adversity: bereaved cancer carers' accounts of rewards and personal growth from caring.

OBJECTIVE: Many studies have identified negative and distressing consequences experienced by informal cancer carers, but less attention has been given to positive and beneficial aspects of caring. This qualitative study examined the positive aspects of caring as subjectively constructed by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. METHOD: Twenty-three bereaved informal cancer carers were interviewed, and their accounts were analyzed using a thematic analytical approach from a phenomenological perspective. RESULTS: The participants were able to identify positive and beneficial aspects of caring. These included the discovery of personal strength, through adversity, acceptance, and necessity; the deepening of their relationship with the person for whom they cared; and personal growth through altered relationships with others and altered perspectives on living. Many participants gave accounts of focusing on these positive benefits when they reflected on their caring experiences. SIGNIFICANCE OF RESULTS: We concluded that benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world. This has implications for the development of interventions for informal cancer carers and for those who are bereaved following caring.

Bereaved informal cancer carers making sense of their palliative care experiences at home.

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty-two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed-method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones' death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.

How do subjectively-constructed meanings ascribed to anti-HIV treatments affect treatment-adherent practice?

Anti-HIV treatment-adherent practice is a significant issue in HIV medical discourses on effective disease treatment and management. Findings from research studies into treatment (non)adherence have positioned the act as a medical issue that could be remedied by behavioral strategies. The present study, conducted in Sydney, Australia, aims to examine treatment-(non)adherent practice as a subjective expression of meanings ascribed to treatments by employing a narrative analytical approach informed by poststructuralist epistemology. The findings indicate that people with HIV negotiate and position treatments in particular ways that lead to multiple and varied understanding of treatments. The ways treatments are positioned in their everyday lives suggest that meanings ascribed to treatments impact on the way individuals negotiate demands embedded in the medically-constructed practice of adherence.