Repackaging Prostate Cancer Support Group Research Findings: An e-KT Case Study

n the context of psychosocial oncology research, disseminating study findings to a range of knowledge “end-users” can advance the well-being of diverse patient subgroups and their families. This article details how findings drawn from a study of prostate cancer support groups were repackaged in a knowledge translation website—www.prostatecancerhelpyourself.ubc.ca—using Web 2.0 features. Detailed are five lessons learned from developing the website: the importance of pitching a winning but feasible idea, keeping a focus on interactivity and minimizing text, negotiating with the supplier, building in formal pretests or a pilot test with end-users, and completing formative evaluations based on data collected through Google™ and YouTube™ Analytics. The details are shared to guide the e-knowledge translation efforts of other psychosocial oncology researchers and clinicians.

Sibling peer support group for young people with a sibling using drugs: a pilot study

Siblings of young people abusing drugs are at particular risk for drug abuse and other health compromising behaviors. A Sibling Peer Support Group was developed by the Centre for Adolescent Health (Melbourne, Australia) for young people aged 13 to 18 years with a problematic drug user in their family. Groups aimed to provide support and information, promote harm minimization, and reduce the sense of isolation. The project emanated from the recognized need for specific support for adolescent siblings of problematic drug users. Evaluation of two pilot groups indicated positive benefits for group members, who reported feeling better informed, more supported, and having a reduced sense of isolation. Parents reported that their adolescent attending the group demonstrated improved communication with, and greater understanding and tolerance of, the family member using drugs. Promising indicators at a community level were manifested in enthusiastic collaboration among schools, police and local service agencies, and the organization of a local drug forum. There appeared to be little evidence that the groups inadvertently encouraged drug use. Recruitment of young people into groups was the major challenge for the project, but among drug and alcohol and family organizations there was support for the concept of a Sibling Peer Support Group. A new model to overcome the challenge of recruitment is proposed.

Symptoms, ill-health and quality of life of the members of a Porton Down veterans' support group

Background There has been a Human Volunteer Programme at the British chemical weapons research facility at Porton Down since the First World War, in which some of the participants were exposed to chemical warfare agents.

Aim To identify any striking specific morbidity patterns in members of the Porton Down Veterans Support Group (PDVSG).

Methods A self-completed postal questionnaire was prepared including health immediately after the visits to Porton Down, subsequent diagnoses and hospital admissions, symptoms in, and after, the first 5 years after the visits, fatigue symptoms and current quality of life, measured using the SF-36.

Results Responses were received from 289 of 436 (66%). Results reported here relate to 269 male respondents of mean age 66.8 years. Sixty-six per cent reported their first visit to Porton Down in the 1950s. The most common diagnoses or hospital admissions reported were diseases of the circulatory system. In the first 5 years after their visits the most common symptoms were headache, irritability or outbursts of anger and feeling un-refreshed after sleep. In the later period, most common symptoms were fatigue, feeling un-refreshed after sleep and sleeping difficulties. Sixty-five per cent met the definition for a case of ‘fatigue’. Current quality of life dimensions were consistently lower than age-specific estimates from general population samples.

Conclusions Members of the PDVSG responding to this survey reported poorer quality of life than the general population. Despite there being no clear pattern of specific morbidities, we cannot rule out ill-health being potentially associated with past experience at Porton Down

Everyone Has Their Scars: Meaning Making In a Burn Survivor Support Group.

In the Burn Care literature, there is little on the lived experiences of burn support group members, the perceived benefits of burn support groups for the members, and even less on the meaning the survivors make of the support they receive. In order to provide effective services and to meet the psychosocial needs of burn survivors, it is important to understand the influence a support group has on its members as well as the personal experiences of those individuals who attend these groups. The purpose of this study was to explore the meaning that burn survivors make in a burn survivor support group. A non-random, purposeful convenience sample of six self-identified burn survivors was interviewed using a guided in-depth interview technique to explore their experiences in the support group. Key informant interviews and group observations served to triangulate the data collected in the individual interviews. The experiences of the group's members coalesced around five main themes: acceptance of self, perspective change, value of community, reciprocity, and structural meaning making components. The findings demonstrated the overall positive impact the support group had on psychosocial recovery. Additionally, analysis suggested that the meaning making process experience included Post Traumatic Growth and highlighted the importance of community in psychosocial recovery. Burn survivors reported unique growth opportunities that allowed them to integrate their injury into their identity within an encouraging and safe environment. Certain factors, such as improving group attendance, were addressed and both survivors and support staff generated suggestions for reaching others in need of support.

Report - United States, Bureau of Indian Affairs, Planning Support Group.

Mode of access: Internet.

Effectiveness of a mutual support group for families of patients with schizophrenia

Aim. This paper reports a study to examine the effectiveness of a 12-session mutual support group for Chinese families caring for a relative with schizophrenia compared with a psycho-educational group and routine family support services in Hong Kong. Background. Schizophrenia is a disruptive and distressing illness for patients and their families. With the current trend of community care for mental illness, there is evidence that family intervention reduces patient relapse and re-hospitalization, satisfies the health needs of families and enhances their coping capabilities. Methods. A randomized controlled trial was conducted from May 2002 to June 2003 with 96 Chinese families of a relative with schizophrenia selected from two psychiatric outpatient clinics in Hong Kong. Families were randomly assigned to receive mutual support (n = 32), psycho-education (n = 33) or standard care only (n = 31). The interventions were delivered at outpatient clinics over a 6-month period. Pre- and post- (1 week and 6 months) testing took place and families' functioning, mental health service utilization, patients' level of functioning and duration of re-hospitalization were measured. Results. At both post-test periods, family caregivers and patients in the mutual support group reported statistically significant improvements on family and patients' level of functioning, when compared with their counterparts in the psycho-education and standard care groups. Conclusions. The findings support the use of mutual support groups as an effective modality of family intervention in a Chinese population caring for a family member with schizophrenia to improve both family and patient functioning.

Social support in cyberspace: A content analysis of communication within a Huntington’s Disease online support group

Objective: Huntington’s Disease (HD) is an inherited disorder, characterised by a progressive degeneration of the brain. Due to the nature of the symptoms, the genetic element of the disease and the fact that there is no cure, HD patients and those in their support network often experience considerable stress and anxiety. With an expansion in Internet access, individuals affected by HD have new opportunities for information retrieval and social support. The aim of this study is to examine the provision of social support in messages posted to a HD online support group bulletin board. Methods: In total, 1313 messages were content analysed using a modified version of the Social Support Behaviour Code developed by Cutrona & Suhr (1992). Results: The analysis indicates that group members most frequently offered informational (56.2%) and emotional support (51.9%) followed by network support (48.4%) with esteem support (21.7%) and tangible assistance (9.8%) least frequently offered. Conclusion: This study suggests that exchanging informational and emotional support represents a key function of this online group. Practice implications: Online support groups provide a unique opportunity for health professionals to learn about the experiences and views of individuals affected by HD and explore where and why gaps may exist between evidence-based medicine and consumer behaviour and expectations.

Beyond statistical procedures for predictive modelling: Data mining algorithms and support for university research at QUT

In a seminal data mining article, Leo Breiman [1] argued that to develop effective predictive classification and regression models, we need to move away from the sole dependency on statistical algorithms and embrace a wider toolkit of modeling algorithms that include data mining procedures. Nevertheless, many researchers still rely solely on statistical procedures when undertaking data modeling tasks; the sole reliance on these procedures has lead to the development of irrelevant theory and questionable research conclusions ([1], p.199). We will outline initiatives that the HPC & Research Support group is undertaking to engage researchers with data mining tools and techniques; including a new range of seminars, workshops, and one-on-one consultations covering data mining algorithms, the relationship between data mining and the research cycle, and limitations and problems with these new algorithms. Organisational limitations and restrictions to these initiatives are also discussed.