자연주의적 탐구조사(Naturalistic Inquiry)

The DNA Mystique: The Gene as a Cultural Icon

OBJECTIVE Cancer patients experience reproductive concerns from diagnosis through to survivorship. However, research has yet to investigate the degree of fertility-related psychological distress at different treatment time points: diagnosis, treatment, and survivorship. Currently, cancer patients are offered fertility counselling at the time of diagnosis, to assist fertility preservation decision making. A systematic review of the short-term and long-term psychological impact of infertility in cancer patients would inform on an improved, longitudinal model of psychological care. METHODS A systematic review of the literature was conducted in January 2018 utilising electronic databases Medline, EMBASE, PSYCH Info, Web of Science, and SCOPUS. An initial search identified 708 potentially relevant studies. Literature was assessed that reported on fertility-related psychological distress experienced by male and female cancer patients of reproductive age (<45 years) across oncology treatment time points. RESULTS A total of 47 papers were included within the final review. Fertility-related psychological distress persists from diagnosis through to survivorship, with cancer patients reporting a range of negative emotional experiences brought about by threatened infertility. In survivorship, reproductive concerns, unfulfilled desire for a child, nulliparous status, and early menopause were linked to higher rates of mental health disorders and psychological distress. CONCLUSIONS Fertility-related psychological distress is prevalent and persistent in cancer patients and survivors. As such, patients and survivors would greatly benefit from fertility-related psychological support implemented into standard practice from diagnosis through to survivorship. A revised model of care is proposed.

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Systematic review of fertility-related psychological distress in cancer patients: Informing on an improved model of care.

Objective
Decline in fertility potential brought about by a cancer diagnosis or cancer treatment is one of the biggest impacts to cancer patients' long term quality of life. As such, the current manuscript aimed to systematically review the literature on oncofertility support needs for cancer patients of a reproductive age (14-45 years of age).

Methods
A systematic review of the literature was conducted in May 2016 through the searching of electronic databases Medline, EMBASE, PSYCH Info, Web of Science and SCOPUS, alongside the screening of relevant reference lists. An initial search identified 351 potentially relevant studies. The papers were divided into two categories; papers on patient oncofertility support needs were reviewed for this systematic review and papers on clinician provision of oncofertility support were reviewed for a separate systematic review.

Results
A total of 30 studies were included within the final review. Support needs were categorised as information, service, clinician-patient interactions, psychological and family. A number of studies indicated that cancer patients place great important on their oncofertility care and have unmet support needs. Patients were satisfied and felt supported when additional care was taken to ensure fertility information and service needs were met.

Conclusions
Patients desire for clinicians to support their concerns through the provision of adequate information, access to oncofertility services, taking time to discuss oncofertility treatment and concerns, specialised psychological support and responsiveness to individual needs.

https://onlinelibrary.wiley.com/doi/pdf/10.1002/pon.4502

A systematic review of patient oncofertility support needs in reproductive cancer patients aged 14 to 45 years of age.

Community-based, integrated youth service hubs have the potential to address some of the longstanding issues with mental health services for youth, including problems with access and system fragmentation. Better understanding of these approaches, particularly efforts to create a single point of entry to comprehensive, evidence-based services through youth service hubs, is needed to help guide future implementation and evaluation. This scoping review identifies the key principles and characteristics of these models of care, as well as the state of the literature, particularly with regard to implementation and replicability. Electronic databases and grey literature sources were searched for material from 2001 to 2019, with diverse search terms capturing the concept of “integrated” or “one-stop shop” youth mental health services. Title/abstract and full text review were conducted, as well as additional focused searching. After screening 4891 texts at the title/abstract level and 496 at the full-text level, 110 documents were included for data extraction. Several integrated care hub models for youth mental health services and related frameworks were identified internationally, largely in high-income countries. Common principles included an emphasis on rapid access to care and early intervention, youth and family engagement, youth-friendly settings and services, evidence-informed approaches, and partnerships and collaboration. Program characteristics also revealed similarities (e.g., providing evidence-informed or evidence-based services in youth-friendly spaces), with some differences (e.g., care coordination methods, types of service providers), potentially attributable to lack of available information about key ingredients. Outcome research was limited, with few rigorous evaluations of youth outcomes. Moreover, sufficient information for replication, community evaluation of feasibility or actual implementation was rarely provided. Internationally, integrated youth service hubs were found to share common key principles, while providing comprehensive services to youth with mental health difficulties. There is a great need for common language and measurement framework to facilitate replication, rigorous evaluation of outcomes, knowledge exchange, and dissemination of findings.

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Key attributes of integrated community-based youth service hubs for mental health: a scoping review

Younger women diagnosed with cancer often face compromised fertility as a result of their treatment. However, previous research has adopted a biomedical model of fertility and utilised hypothetico-deductive research methods which have not allowed for full exploration of women’s subjectivity. This study explored younger women’s construction of their fertility post-cancer, and their discussions of fertility with healthcare professionals, from a social constructionist epistemology. Semi-structured one-to-one interviews were conducted with eight women aged 18–26, across a variety of cancer types. Foucaultian Discourse Analysis identified three subject positions associated with fertility concerns: ‘Inadequate woman: Accepting the motherhood mandate’; ‘Adequate woman: Resisting the motherhood mandate’; and ‘Survival of the fittest: Woman as genetically defective’. Implications of these subject positions included feelings of inadequacy, fear and devastation; feeling undesirable to romantic partners; and concern ...

Young women’s construction of their post-cancer fertility

Background: One in five Australians have a disability with this number likely to grow, largely driven by increases in population and population ageing. Understanding the current barriers to people with physical disability accessing the health care system has important implications for health and public health. Aim: To explore the experiences of people with physical disability and health care service providers of accessibility of health services in Western Sydney. In particular this research asks: What are the non-physical barriers experienced by people with physical impairments to accessing health care services in Western Sydney? Methods: In order to sample a continuum of experiences, stratified purposive sampling was used to identify participants across the diverse populations of Western Sydney. In-depth semi-structured interviews and focus groups were conducted with people with disability and health care service providers (general practitioners, nurses, allied health). The interviews were digitally recorded and transcribed and analysed using a constant comparison method. Results: To date seven people with disability and four service providers have participated in the study. People with disability described a number of non-physical barriers to accessing services in WS including: financial (cost of services), service (lack of protocols to treat people with disability, waiting list, number of service providers in the area) and information (access to, information about disability appropriate health services, rules about health entitlements). They also described complex social needs that have a significant impact on their health (employment, housing, timely access to equipment); which are not always considered by health care service providers. Some describe how they feel “invisible” from the high counters at general practices and hospitals to the World Congress on Integrated Care 2014, Sydney, November 23-26, 2014. International Journal of Integrated Care – Volume 14, 8 December – URN:NBN:NL:UI:10-1-116651– http://www.ijic.org/ back door they use to enter a dentist office. Participants also highlighted the lack of disability awareness training of service providers – “Not used to working with people with disability”. Service providers also reported that clinicians and support staff require more education about disability. While service providers perceive they were compassionate and caring when providing care to people with disability. In contrast people with disability reported a lack of compassion and understanding from some health care service providers. Conclusion: The preliminary results of this study highlight the importance of “disability awareness” by service providers and support staff. There is also a need to address the social and economic barriers to access health services experienced by people with disability. It is important to improve the effectiveness of and determine in what ways the person, the service provider, and the policies of service delivery systems share responsibility for access to health and health care (accountability).

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Amy Dryden

Papers

Young women’s construction of their post-cancer fertility

People with disabilities and professionals’ views on access to health services in Western Sydney