Survivors Network Research Articles

In Their Own Voices: A Qualitative Study of Men Abused as Children by Catholic Clergy

ABSTRACT This study examines the impact of child sexual molestation on men assaulted as children by Catholic clergy. In-depth interviews were used to conduct a qualitative analysis of how clergy-perpetrated childhood sexual abuse affected the adult psychological and/or psychosocial functioning of nine men. Subjects were selected in coordination with a nationally recognized advocacy group established for victims of clergy abuse, The Survivor Network of those Abused by Priests. The study found that the sexual abuse acted as a developmental insult and resulted in systemic influences throughout the victims' lives. The article concludes with considerations for treatment.

Users' networks for Africans with mental disorders

Users' networks for people with mental health disorders have emerged in Africa over the past 5 years, notably in Zambia, Uganda, Tanzania, Kenya, and South Africa. 1 Pan Africa network of users and survivors of psychiatry. First consumer conference report. General Inaugural Assembly, Kampala, Uganda, Nov 23–24, 2005. Google Scholar These organisations believe in users' power to strengthen their sense of identity and improve the situation in their communities and countries. Users' networks organise activities such as awareness campaigns and self-help projects, and they contribute to the development of mental health services, springing from the desire to attain human freedom that governments and communities continue to ignore. 2 WHOAdvocacy for mental health. World Health Organization, Geneva2003: 17 Google Scholar Do not forget culture when studying mental healthIn today's Lancet, Oye Gureje and colleagues1 add to the growing epidemiological literature on mental illness in Africa. They identified high rates of current and lifetime depressive symptomatology in elderly Nigerians, with a focus on major depressive disorder as defined by the Diagnostic and Statistical Manual of Mental Disorders version 4 (DSM-IV). This study adds to an increasing body of global mental health research which has received renewed attention after Desjarlais and colleagues' world mental health text2 and WHO's 2001 report on mental health,3 which raised awareness of the importance and severity of mental illness around the world. Full-Text PDF Epidemiology of major depressive disorder in elderly Nigerians in the Ibadan Study of Ageing: a community-based surveyMajor depressive disorder is common in elderly Nigerians and its occurrence is related to urbanisation. This disorder is a seriously disabling illness in this group but only a few sufferers have ever received treatment. Health-care services need to invest in effective treatment programmes for major depressive disorder. Full-Text PDF Treatment and prevention of mental disorders in low-income and middle-income countriesWe review the evidence on effectiveness of interventions for the treatment and prevention of selected mental disorders in low-income and middle-income countries. Depression can be treated effectively in such countries with low-cost antidepressants or with psychological interventions (such as cognitive-behaviour therapy and interpersonal therapies). Stepped-care and collaborative models provide a framework for integration of drug and psychological treatments and help to improve rates of adherence to treatment. Full-Text PDF

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Centered on Breast Cancer

A relationship between early menarche in girls and later development of breast cancer has long been observed. Some environmental factors, such as diet and exposure to endocrine disruptors and other chemicals, could affect children’s timing and pace of puberty and development. This leads to the question of whether exposure to these agents may also lead to breast cancer later in life. That is the scientific premise for the establishment of the Breast Cancer and the Environment Research Centers (BCERCs), which presented results of ongoing studies at their third annual meeting on 2–3 November 2006. The centers are co-funded by the NIEHS and the National Cancer Institute (NCI) Epidemiology and Genetics Research Program. They work together to integrate community outreach and two lines of research: 1) basic biology of the mammary gland and its development using animal models, and 2) epidemiological studies of how environmental factors affect puberty in girls. Four centers were established across the nation: the Fox Chase Cancer Center in Philadelphia (collaborating with Mount Sinai School of Medicine in New York and the University of Alabama at Birmingham), the University of Cincinnati in Ohio (collaborating with Cincinnati Children’s Hospital Medical Center), the University of California, San Francisco (collaborating with numerous partners including Lawrence Berkeley National Laboratory), and Michigan State University in East Lansing. “Using a transdisciplinary scientific approach, the centers are able to investigate possible windows of susceptibility during pubertal development more comprehensively and on a larger scale,” said Shannon Lynch, a program analyst at the NCI. The BCERCs’ ability to work closely together, share resources, compare findings, and establish common research protocols is especially important in epidemiological studies. With each center recruiting a number of girls from diverse racial/ ethnic, geographical, and socioeconomic backgrounds, the data that are ultimately generated should be more robust due to a greater number of samples that are more representative of different populations.

A critical appraisal of internet resources on colorectal cancer

The significance of the internet as a source of healthcare information for professionals and public is widely recognized. Access to good quality information is very important for informed decisions making on healthcare issues. This is an introduction to the critical appraisal of clinical information on the internet, discussion of the significance of quality checking of healthcare internet resources and the application of critical appraisal tools to selected internet resources on colorectal cancer care. Internet resources were identified on the basis of a general criterion that it provides information on colorectal cancer and selected on the basis of explicit inclusion and exclusion criteria. Each selected website is assessed for quality of information with validated criteria. The search strategy identified 10 well known internet resources on healthcare information (e.g. Cochrane, NICE) and 12 websites which are dedicated to cancer related information (e.g. CancerBacup, cancer.gov). The websites of NHS Direct, cancerBACUP, cancer.gov, NICE and Cancer Survivors Network were qualified as resources providing good quality information. The critical appraisal process assures quality of the available information and the tool is applicable to all healthcare related internet resources. The process is discussed with respect to colorectal cancer information resources and will be equally useful to healthcare professional and public. The healthcare professionals can apply the tool in practice and advise the public more confidently on internet information.

All about PSY DREAM. Psychiatric Drug Registration, Evaluation & All-inclusive Monitoring

In this article the author--board-member of the European Network of (ex-) Users and Survivors of Psychiatry (ENUSP)--explains, what is needed to guarantee a minimal level of involvement of users and survivors of psychiatry into issues relating to psychiatric drugs. He reflects demands of their organisations, and compares these demands with the current involvement level. Considering the concrete circumstances in psychiatry, he reflects the risks and dangers of the administered drugs--especially the widely used neuroleptics--for example enhanced breast cancer risk in women, suicidal effects, receptor changes, tardive dyskinesia and other toxic reactions. Considering the unique situation of psychiatric patients to receive treatment in general without informed consent and in a violent way or through bullying and threat, he argues for to provide their involvement in all aspects of psychiatric drug issues--especially registration and monitoring, for example by their involvement in creating and running a suicide register. And he argues for involvement in ethics committees, licensing processes and providing guidelines and decision making about effectiveness and reimbursement of costs. As first steps towards these aims he proposes independent and user-controlled research, independent and user-controlled education and independent and user-controlled information about the effects of psychiatric drugs.

Psychological factors after traumatic amputation in landmine survivors: The bridge between physical healing and full recovery

Purpose: Limb loss due to a landmine injury is sudden and devastating. The resulting disability makes life challenging in a world where physical ability is the ‘norm’. In order to better understand the psychological adjustments individuals make in their recovery from a landmine injury, the Landmine Survivors Network conducted an exploratory qualitative study to determine factors that contribute to an individual's recovery. The study examined psychosocial aspects, coping strategies, and resilience characteristics of limb loss survivors across differing cultural, societal and economic backgrounds.Method: Eighty-five participants (68 persons of limb loss, 10 family members, seven service providers) were interviewed using a semi-structured protocol in the USA and an open-ended format in six landmine affected countries. Data analysis was completed using grounded theory analytic strategies.Results: Data indicated that the survivors' acceptance of limb loss and their state of psychological recovery were greatly influenced by the individual's resilience characteristics, social support, medical care, economic situation and societal attitudes toward people with disabilities.Conclusion: Recovery from traumatic amputation in landmine survivors needs to be comprehensive and coordinated, and requires addressing the individual's physical, psychological, economic and social needs within the context of family, community, and the socio-cultural environment in which they live.

Resilience in Survivors of Traumatic Limb Loss

Landmine Survivors Network (LSN) is a global network of survivors helping mine victims heal, recover, and reclaim lives. LSN conducts research to determine what creates a 'successful' survivor that is, one who overcomes trauma and experiences physical and psychological health. Throughout the life course, the means to achieve this success differs. LSN studied the impact of environmental risk factors, coping strategies, and resilience characteristics of limb loss survivors in six landmine-affected countries and the United States. In depth interviews of 89 participants, including people with limb loss, their family members and service providers, were analyzed using grounded theory strategies (Strauss and Corbin, 1990). A dynamic six factor model of recovery emerged and indicated significant variation depending on life stage. Programs intended to facilitate recovery need to be comprehensive and address the individual's stage specific physical, psychological, economic and social needs within the context of family, community, and the socio cultural environment at large.

About the impossibility of a single (ex‐)user and survivor of psychiatry position

To present the European Network of (ex-)users and survivors of psychiatry and discuss issues of concern among (ex-)users and survivors. Material from papers and documents published by and discussed among (ex-)users and survivors of psychiatry is used to outline topics of interest. The European Network of (ex-)Users and Survivors of Psychiatry (ENUSP) was founded in 1991 as an association of national/regional organizations of (ex-)users and survivors of psychiatry. The network organizes biennial conferences, all delegates are (ex-)users and survivors of psychiatry. ENUSP aims include the fight against discrimination of people with experience of the psychiatric system, support for (ex-)user/ survivor organizations, influence on policy-making, legislation and human rights debates, demedicalizing psychiatry, and opposition to unidimensional approaches to mental and emotional distress. (Ex-)users and survivors should be involved in monitoring psychiatric services, education and examination of mental health professionals. User/survivor-controlled services constitute an important innovative service.

“What Doesn't Kill You Makes You Stronger”: An Ovarian Cancer Survivor Survey

Objectives. This survey was designed to learn more about the physical health and quality of life of ovarian cancer survivors without known active disease and not on treatment.Methods. Women with ovarian cancer without evidence of active disease, and not on treatment for at least 2 years, were recruited in Canada and the United States from university cancer clinics, community ovarian support groups, and a cancer survivor network newsletter and asked to complete an anonymous mail-back survey on their physical, psychological, social, and spiritual well-being.Results. Two-hundred (67.5%) women responded. Their mean age was 55.3 years, 72.5% had children, and they had been diagnosed with ovarian cancer a mean of 7.2 years previously. Eighty-nine percent regarded their health as good or excellent, but 53.5% had current pain or discomfort. They reported better mental health and equivalent energy levels to the general population. Although 57% reported that their sex lives had been negatively affected by cancer and its treatment, their overall sense of loss relating to sexual functioning was moderate to low. However, women under age 55 years reported a greater sense of loss about sexual function and fertility (P = 0.001). Most women reported that their ovarian cancer experience had changed their views on life and relationships in an overwhelmingly positive way.Conclusion. Most ovarian cancer survivors, despite some symptoms, enjoyed good physical, psychological, social, and spiritual health. Specific concerns emerged about sexuality which should be addressed in patient education. Having survived a life-threatening illness, ovarian cancer survivors appear to have put other life difficulties into perspective, altered their priorities, and felt enriched by the experience. In general, these women showed impressive and inspiring resilience and reported good physical health and energy, excellent psychological health, and feelings of greater pleasure in life and personal relationships.

User networks

In this issue we include profiles from two organisations run by and representing services users. The European Network of (ex‐) Users and Survivors of Psychiatry (ENUSP) works at a European and international policy‐making level, seeking better mental health services and enhanced user participation. Their profile describes their activities, but also touches on the historical development of user participation and what the terms ‘user’ and ‘survivor’ mean to them. Closer to home, North Staffordshire's User Group has been working vigorously and successfully since 1993 to improve the quality of mental health services, helping to shape the development of new community‐based education, training and employment services. Both networks are playing a key role in developing better work and day‐time opportunities.

To walk without fear: the global movement to ban landmines

Preface. Contributors. Abbreviations. 1: Maxwell A. Cameron, Robert J. Lawson, and Brian W. Tomlin: To Walk Without Fear. Part One: The Global Movement for a Ban. 2: Jody Williams and Stephen Goose: The International Campaign to Ban Landmines. 3: Valerie Warmington and Celina Tuttle: The Canadian Campaign. 4: Philippe Chabasse: The French Campaign. 5: Noel Stott: The South African Campaign. 6: Stuart Maslen: The Role of the International Committee of the Red Cross. 7: Jerry White and Ken Rutherford: The Role of the Landmine Survivors Network. 8: Alex Vines: The Crisis of Anti-Personnel Mines. 9: Robert G. Gard, Jr: The Military Utility of Anti-Personnel Mines. Part Two: The International Response. 10: Robert J. Lawson, Mark Gwozdecky, Jill Sinclair, and Ralph Lysyshyn: The Ottawa Process and the International Movement to Ban Anti-Personnel Mines. 11: Brian W. Tomlin: On a Fast Track to a Ban: The Canadian Policy Process. 12: Mary Wareham: Rhetoric and Policy Realities in the United States. 13: David Long and Laird Hindle: Europe and the Ottawa Process. 14: J. Marshall Beier and Ann Denholm Crosby: Harnessing Change for Continuity: The Play of Political and Economic Forces Behind the Ottawa Process. 15: Thomas Hajnoczi, Thomas Desch, and Deborah Chatsis: The Ban Treaty. 16: Don Hubert: The Challenge of Humanitarian Mine Clearance. Part Three: Legacies of the Ottawa Process. 17: Richard Price: Compliance with International Norms and the Mines Taboo. 18: Miguel de Larrinaga and Claire Turenne Sjolander: (Re)presenting Landmines from Protector to Enemy: The Discursive Framing of New Multilateralism. 19: Michael Dolan and Chris Hunt: Negotiating in the Ottawa Process. 20: Maxwell A. Cameron: Democratization of Foreign Policy: The Ottawa Process as a Model. 21: Lloyd Axworthy: Towards a New Multilateralism. Appendix A List of Signatories to and Ratifications of the Ottawa Convention. Appendix B The Ottawa Convention. Index

Three User‐Led Initiatives

In this issue, we profile three very different user‐led initiatives: a thriving user forum in Kent (FURST) involved in a wide range of local activities; the European Network of (Ex‐) Users and Survivors of Psychiatry, which promotes the rights of mental health service users on a European level; and a winning New Deal ‘innovative scheme’ designed by Talent to Work, a registered charity founded by an ex‐user of mental health services. Do not forget that the Network Page is your chance to share information or make contact with others. If you are involved in an innovative project or partnership, why not use this space to tell our readers about it? Contact Adam Pozner at OUTSET. Tel. 0181‐692 7141.

Views of childhood cancer survivors. Selected perspectives.

Candlelighters Childhood Cancer Foundation surveyed approximately 300 off-treatment childhood cancer survivors as well as a comparison group of young adults who had not experienced cancer. Focused group interviews, conducted by a childhood cancer survivor, augmented the questionnaire findings. Selected results include: (1) survivors reported feeling more positive than their peers; (2) self-reported health status was more negative for survivors than their peers; (3) survivors reported more worries surrounding cancer-related illnesses. Conversely, they reported fewer general health worries than their peers. In addition, survivors need services such as information, counseling (interpersonal and career), and meetings with other survivors. These findings suggest the need for improved programming by health care providers during and after treatment, as well as the importance of a national survivor network, to address the unique needs of the off-treatment childhood cancer survivor.

Poliomyelitis: The Battle Continues

In 1979, Larry Schneider, a poliomyelitis survivor from Tucson, Ariz, wrote a letter to the editor of the Rehabilitation Gazette regarding the recent onset of pain, inexplicable fatigue, and a sense of progressing weakness 30 years after the onset of polio. 1 He asked whether other polio survivors had noticed comparable symptoms. The subsequent flood of correspondence to editor Gini Lauri so astounded her that she called together a network of medical specialists and polio survivors for the First International Post-Polio Symposium in Chicago, Ill, in 1981. The ensuing presentations and discussions defined the scope of the problem of postpolio sequelae. Most in attendance agreed that postpolio-related problems were not truly a syndrome in the classic sense, because not all polio survivors develop all the same symptoms. Commonly described symptoms include joint and muscular pain, unaccustomed fatigue or decreased stamina in daily activities, cold intolerance, worsening respiratory problems, and, most

Poliomyelitis: the battle continues

In 1979, Larry Schneider, a poliomyelitis survivor from Tucson, Ariz, wrote a letter to the editor of the<i>Rehabilitation Gazette</i>regarding the recent onset of pain, inexplicable fatigue, and a sense of progressing weakness 30 years after the onset of polio.¹He asked whether other polio survivors had noticed comparable symptoms. The subsequent flood of correspondence to editor Gini Lauri so astounded her that she called together a network of medical specialists and polio survivors for the First International Post-Polio Symposium in Chicago, Ill, in 1981. The ensuing presentations and discussions defined the scope of the problem of postpolio sequelae. Most in attendance agreed that postpolio-related problems were not truly a syndrome in the classic sense, because not all polio survivors develop all the same symptoms. Commonly described symptoms include joint and muscular pain, unaccustomed fatigue or decreased stamina in daily activities, cold intolerance, worsening respiratory problems, and, most