Self-help Associations Research Articles

Secondary fracture prevention/Update osteoporosis guidelines 2023 of the Umbrella Organization Osteology

The S3guidelines on the prophylaxis, diagnostics and treatment of osteoporosis 2023 were completely revised and updated between 2021 and 2023 in accordance with the Association of the Scientific Medical Societies of Germany (AWMF) regulations. The guideline committee consisted of delegates from the 20specialist societies of the Umbrella Organization Osteology (Dachverband Osteologie, DVO) as well as delegates from the German Society of General Medicine and Family Medicine (DEGAM), the German Society for Nephrology (DGfN) and the Federal Self-help Association for Osteoporosis (BfO).The guidelines focus on preventive measures, diagnostic procedures and treatment approaches for osteoporosis in men aged50 years and over and postmenopausal women. The main aim is the optimization of care processes, reduction of fracture incidences and maintenance or improvement of the quality of life and functional capacity of patients affected by fractures. Amajor update to the guidelines includes the introduction of anew risk calculator that can take more risk factors (n = 33) into account and that can estimate the risk of vertebral body and proximal femoral fractures for a3-year period (previously 10years). This results in new thresholds for diagnostics and treatment. The programmed app is currently not yet certified as a medical product and apaper version is therefore currently available for patient care with the planned integration of aweb-based version of the risk calculator. From the perspective of trauma surgery, the recommendations and innovations for manifest osteoporosis are of particular clinical importance. The focus of the DVO guidelines update is therefore on the implementation of secondary fracture prevention in trauma surgery, orthopedic and geriatric traumatology in the clinical and practical daily routine.

Self-help friendliness and cooperation with self-help groups among rehabilitation clinics in Germany (KoReS): a mixed-methods study protocol

IntroductionSelf-help is an important complement to medical rehabilitation for people with chronic diseases and disabilities. It contributes to stabilising rehabilitation success and further coping with disease and disability. Rehabilitation facilities...

Importance of personality disorders in epilepsy

<p>Epilepsy is one of the most common neurological disorders. Therapeutic success shows high variability between patients, at least 20-30% of the cases are drug-resistant. It can highly affect the social status, interpersonal relationships, mental health and the overall quality of life of those affected.<br>Although several studies can be found on the psychiatric diseases associated with epilepsy, only a few researches focus on the occurrence of personality disorders accompanying the latter. The aim of this review is to help clinicians to recognize the signs of personality disorders and to investigate their connection and interaction with epilepsy in the light of current experiences.<br>The researches reviewed in this study confirm that personality disorders and pathological personality traits are common in certain types of epilepsy and they affect many areas of patients&rsquo; lives. These studies draw attention to the importance of a multidisciplinary approach to this neurological disorder and to provide suggestions about the available help options. Considering the high frequency of epilepsy-related pathological personality traits that can have a great impact on the therapeutic cooperation and on the patients&rsquo; quality of life, it important that the neurologist recognizes early the signs of the patient&rsquo;s psychological impairment. Thus they can get involved in organizing the support of both the patient and their environment by including psychiatrists, psychologists, social and self-help associations.<br>As interdisciplinary studies show, epilepsy is a complex disease and besides trying to treat the seizures, it is also important to manage the patient&rsquo;s psychological and social situation. Cooperation, treatment response and quality of life altogether can be significantly improved if our focus is on guiding the patient through the possibilities of assistance by seeing the complexity and the difficulties of their situation.</p>.

Experiencing (Shared) Decision Making: Results from a Qualitative Study of People with Mental Illness and Their Family Members.

(1) Background: There is a fundamental shift in healthcare toward shared decision making (SDM). This study explores SDM from the perspective of individuals affected by mental illness and their family members and investigates factors which promote and hinder the process. (2) Methods: We conducted N = 15 telephone interviews (n = 4 adults affected by mental illness, n = 5 family members, n = 6 both applicable, the majority reporting experiences with affective and anxiety disorders). Data were recorded, transcribed, and analyzed according to procedures established by Mayring. (3) Results: Individuals affected by mental illness and their family members have a strong desire to be involved in treatment decisions and to participate in finding a diagnosis. Often these stakeholders are denied the opportunity to participate; sometimes enabling behaviors impede participation. The stigmatization of mental illnesses is a major barrier. There are also structural barriers to SDM within the healthcare system. Peer support, self-help associations, and psychosocial counseling services are important to empowering individuals and promoting SDM. (4) Conclusions: SDM has the potential to improve the quality of mental healthcare. Barriers can be mitigated and new approaches for interventions in the psychiatric sector have been identified. This study has also shown the importance of understanding SDM as a process that should begin at the diagnostic phase.

Self-help management of patients undergoing chemotherapy: analysis of the online forum of the women’s self-help association against cancer

PurposeThe aim of this study was to examine threads on chemotherapy in the largest German self-help forum regarding content and emotions.MethodsAll threads on the subject of chemotherapy that were published by February 6th, 2022 were included in the category “drug therapy”. A total of 50 threads were analyzed. A quantitative analysis was carried out with regard to content, emotions, number of replies, number of hits, duration of the conversation, duration of access in days, number density of replies, and hits per day.Results16 threads are about side effects and in 18 threads, the emotion is fear. Threads in which the emotion fear was expressed have the highest number of replies at 3367. Shared therapy successes are posted with pleasure and achieved a higher mean value for the duration of conversation with 1374.25 days.ConclusionAn online self-help forum is a very important source of psychosocial support for patients undergoing chemotherapy.

Evaluating a novel treatment for opioid use disorder based on dual-brain psychology and photobiomodulation

Evaluating a novel treatment for opioid use disorder based on dual-brain psychology and photobiomodulation Opioid Use Disorder or opioid addiction is a devastating illness that leads to failed lives, overdoses and other medical catastrophes, family agony, crime, and social dysfunction. Although we have medications such as methadone, buprenorphine and naloxone) and self-help associations (such as Alcoholics Anonymous and Narcotics Anonymous), still the epidemic is only growing with a skyrocketing number of overdose deaths. In this article, Dr. Fredric Schiffer, founder and CEO of MindLight, LLC, looks at treatments for opioid use disorder based on Dual-Brain Psychology and photobiomodulation. Dr. Schiffer is also a part-time assistant professor in psychiatry at Harvard Medical School.

Baro Tumsa's contributions to the Oromo national movement

ABSTRACT The article examines the political and intellectual contributions of Baro Tumsa in forming the Oromo Liberation Front (OLF) and developing the Oromo national movement. After the Haile Selassie government banned the Macha-Tulama Self-Help Association (MTA) in 1967 and killed or imprisoned its prominent leaders and members, Baro played a central role in the Oromo national struggle facilitating the birth of the OLF. This organization has been mobilizing and leading the Oromo society since the 1970s and is becoming a major political force in shaping the future of Oromia and Ethiopia.

Functional recovery priorities and community rehabilitation service preferences of spinal cord injury individuals and caregivers of Chinese ethnicity and cultural background.

IntroductionSpinal cord injury (SCI) causes significant and permanent disability affecting motor, sensory and autonomic functions. We conducted a survey on the priorities of functional recovery and preferences for community rehabilitation services in a cohort of Chinese individuals with SCI as well as the primary caregivers. The study also investigated their views on advanced technology and research.MethodsAn online platform with a self-administered questionnaire was used to collect the opinions of clients that received services from an SCI follow-up clinic, a self-help association, or a non-government organization from 1 September−31 December 2021.ResultsEighty-seven subjects (74 individuals with SCI−48 tetraplegic, 26 paraplegic, and 13 caregivers) responded to the survey. Recovery of arm/hand function was given the highest priority among tetraplegics, followed by upper trunk/body strength and balance, and bladder/bowel function. Sexual function had a significant lower ranking than all priority areas except normal sensation (p < 0.05). Paraplegics viewed bladder/bowel function as the most important area of functional recovery, followed by walking movement, upper trunk/body strength and balance, elimination of chronic pain, and regaining normal sensation. There was no statistically significant difference among the top priority areas (p > 0.05). In contrast to previous studies done in Western populations, the study revealed that sexual function was ranked as the lowest by all 3 groups of respondents (tetraplegics, paraplegics, and caregivers). The majority of participants thought community rehabilitation services were inadequate. Most of the respondents were interested to try advanced technology which would facilitate their daily life and rehabilitation. About half of the individuals with SCI thought advance in technology and research could bring significant improvement in their quality of life in the coming 10 years.ConclusionThis survey is the first study specifically looking into the recovery and rehabilitation priorities of a Chinese population of individuals with SCI. This is also the first study to investigate the priorities of the primary caregivers of SCI individuals. The findings are useful as a reference for planning of future research and provision of rehabilitation services for the SCI community locally and in other parts of China.

Diagnosis of inherited retinal dystrophies. Relevance of molecular genetic testing from the patient's perspective

The diagnostic process of inherited retinal dystrophies (IRD) is impeded by their low prevalence and the variability of the clinical presentations; however, for patients avalid diagnosis is vital for future planning and evaluating the potential of an appropriate early treatment to delay disease progression. Aim of the current study was to outline the patients' journeys until they receive the final diagnosis. This should help uncover diagnostic shortcomings and highlight potential for improvement with respect to the use of genetic diagnostic testing. Data were collected by questionnaires and an online survey conducted by the self-help association PRO RETINA Deutschland e. V. among patients with IRD. Data were analyzed by descriptive statistics. From 15 March to 22 April 2021, 183 questionnaires were completed and 42online interviews conducted. The surveyed population consisted of 48% female patients, mean age was 55years and first symptoms occurred at amean age of 22years. On average about 14years passed from first symptoms until final diagnosis. Only 66% of the patients reported that they had received at least 1 diagnostic genetic testing; less than half of the patients (47%) received genetic counseling. The huge majority of patients (85%) would be interested in gene therapy. From the perspective of affected patients, ashortening of the time to diagnosis, the use of molecular genetic testing and the offer of genetic counseling are important to improve patient care for patients with IRD.

The The Ethiopian Civil Society Organizations Law and its Role for Social Movement in Ethiopia

&#x0D; &#x0D; &#x0D; Civil society organizations (hereinafter called CSOs) are separate entities from the government organizational structure, and they are formed by people who have common needs, interests and values. They are important for organizing social movements at the local and/or international levels. CSOs in Ethiopia have existed as informal community-based organizations and self-help associations. However, formal civil society organization has started to exist with a legal personality recently. In Ethiopia, for a decade and more, as a result of the adoption of the 2009 repressive CSO law, civil society organizations did not entirely take part in their role in the country’s social movements and in the promotion and protection of human rights. However, the said law on several occasions has faced strong criticism from national and international CSOs. Accordingly, recently, in January 2019 the Ethiopian Government amended the preexisting law and enacted a new proclamation, Proclamation 1113/2019. Thus, this paper focuses on the newly promulgated CSO legislation and its role for social movements in Ethiopia, as there are changes made in the system of the CSOs and their activities. Therefore, the paper basically examines the peculiarities of the new Ethiopian CSO law in relation with its role for social movement in Ethiopia. By assessing the positive and the down sides of the new CSO legislation, it investigates the possible contribution of the new Proclamation. It also critically scrutinizes the role of the new CSO law in accelerating and promoting the social movements in Ethiopia.&#x0D; Keywords: Civil Society, CSO, Social Movement, New Proclamation, Ethiopia, NGO.&#x0D; &#x0D; &#x0D;

Experiences of Family Members of Children with Autism

Introduction: Autism spectrum disorder is characterized by the change in the behavior-interaction-communication, with different levels of impairment. Objectives: This study aims to describe the experiences of family members of children with autism and discuss strategies to improve the quality of life of family members. Methods: A descriptive, exploratory study with a qualitative approach was carried out in a self-help association for autism, located in the city of Teresina/PI, Brazil. Data collection took place in September and October 2019 through the application of a semi-structured interview. Eighteen (18) family members of children with autism in the Association of Friends of Autistic Individuals (AMA) participated in the study. Bardin’s content analysis was the technique used for data analysis. Results: The results showed experiences of negative feelings on the part of family members who lived with autistic children, such as frustration and pain, but also positive feelings of affection and dedication and state of neutrality. The daily life of family members involved the experience of difficulties due to the care of the autistic children, in addition to the lack of information regarding different cases of autism. Therefore, it is necessary to include family members and children in support networks with the objective of making them a part of society with the help of the multidisciplinary team. Conclusion: The present research showed that the experiences of family members of children with autism are difficult at first, but with daily learning and interaction, they become rewarding. The study also reinforces the importance of team in the care of autistic children and highlighted the relevance of improving the family’s quality of life, which can also reflect on the quality of care of that individual.

Comparing quality of care using patient-reported outcomes in patients with localized prostate cancer

Abstract Introduction The Prostate Cancer Outcomes (PCO) study, funded by the Movember Foundation, has been recruiting patients in prostate cancer centers in Germany, Austria and Switzerland certified by the German Cancer Society (DKG) since July 2016. It is a joint project of the Federal Prostate Cancer Self-Help Association (BPS), DKG, OnkoZert and meanwhile over 100 participating centers. The aim of the study is to compare the outcome quality between the centers for mutual learning and to use patient-specific evaluations for treatment planning. Materials and Methods The protocol was set up according to the International Consortium for Health Outcomes Measurement (ICHOM) Standard Data Set with patients filling out the EPIC-26 before and at least once (after 12 months) after treatment. The EPIC-26 includes the functional outcome domains 'incontinence', 'irritative / obstructive', 'gastrointestinal', 'sexuality', and 'hormonal “. Questionnaire data are linked to disease and treatment data in the centers. The EPIC-26 domain scores are then analyzed centrally to provide case mix adjusted center comparisons stratified by treatment. Results As of May 2019, 11,303 patients were recruited the PCO study. For 3,953 of them, results of the follow-up survey after 12 months were available for analysis. The results show changes in the scores similar (e.g. an adjusted decrease in the incontinence domain by 15 points for patients receiving radical prostatectomy) to what was known from the international literature 12 months after primary therapy. Results vary significantly between the centers, suggesting differences between providers that warrant improvement interventions. Conclusions The results are used to develop strategies for improvement together with providers and patients and to implement patient-specific evaluations for treatment planning in everyday treatment. Key messages A patient-reported outcome routine was successfully implemented in over 100 prostate cancer units in central Europe adopting the same data infrastructure. Benchmarking results demonstrate meaningfully differences across units that warrant improvement interventions.

Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

BackgroundFinding reliable information on one of more than 7000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources for specific rare diseases, little is known about the use of information sources for different rare diseases, how users rate these information sources based on their experiences, and how the use and importance of these information sources change over time.MethodsFifty-five patients with a variety of rare diseases and 13 close relatives participated in qualitative interviews. For these interviews, a semi-structured guideline was developed, piloted, and revised. Data analysis involved a qualitative content analysis developed by Philipp Mayring.ResultsThe participants considered internet as the most important and widespread information source, especially for early information. Although patients have difficulty dealing with information obtained online, they consider online searching a quick and practical option to gather information. During the course of the disease, personal contact partners, especially self-help associations and specialized doctors, become more important. This is also because information provided online is sometimes insufficiently detailed to answer their information needs, which can be complemented by information from doctors and self-help.ConclusionsPeople rarely use just one type of source, but rather refer to different sources and informants. The source used depends on the type of information sought as well as other person-related factors such as preexisting knowledge and the disease stage. To improve people’s information searching and connect them with medical specialists in rare diseases, a central information portal on rare diseases might be a suitable access point to provide free and quality assured information for patients, caregivers, and physicians. This would allow not only patients but also doctors to find quality assured information on symptoms and therapies as well as patient associations and specialized doctors.

The Cooperative as a Form of Education in the Theory and Practice of the Work of Women’s Organisations in the Second Republic of Poland, as Exemplified by the Women’s Social Self-Help Association

The work of the SSK was integrally and consistently a part of the social and economic life of the 1930s in the Interwar Period in Poland. It was clearly ideologically oriented. By uniting women and promoting their activity the association served a supportive and educational role for hundreds of Polish women and families. Although the scope of the work of the organisation was not particularly broad, through the realisation of the ideas and the implementation of the form of the cooperative, the association contributed to the increase of the level of life of numerous Polish women in its social, economic, and cultural aspects.

Self-help groups and patient participation: current results and projects in the Belgian region of Flanders

In 2018, around 1500 self-help groups existed in the Belgian region of Flanders, dealing with almost 200 different diseases or problems. Most have existed for 25 to 35years, with new initiatives added annually. The first part of this article describes the development of self-help groups and patient participation in Flanders. The second part discusses the legal framework for the participation of patient associations at the micro-, meso-, and macrolevel. The third section describes two current practical examples of patient participation in the health system: the "self-help-friendly hospital" and "the integration of experts by experience in hospitals" with initial interim results. Finally, we discuss development and growth opportunities, as well as needs of self-help groups and patient associations and their support agencies and umbrella associations. More support for self-help groups and increased recognition of their achievements can promote structural forms of cooperation with the professional health system and boost patient participation.

Stigma experienced by families with members with intellectual disabilities in Kinshasa, Democratic Republic of the Congo

Introduction: This article outlines the results of a participatory action research project to (a) understand stigma experienced by family members of people with intellectual disabilities (IDs) in Kinshasa, Democratic Republic of the Congo and (b) identify strategies used by these family members to mitigate or cope with stigma. Methods: We conducted 20 semi-structured interviews with family members of people with ID. Results: All participants in this study discussed experiencing stigma. This stigma was most commonly felt when people directed negative looks, used negative language and names, or refused to touch their family member with ID. Stigma was also directed at the family members as being the ’cause’ of the ID. Family members noted engaging a range of coping mechanisms or strategies to minimise the stigma. Conclusion: Insight from this study could be used to develop interventions benefiting families affected by ID. A sample of suggested interventions include creating opportunities for targeted, local contact with stigmatised persons; reducing or eliminating use of negative and stigmatising names (e.g. kizengi) for people with ID; and promoting self-help and self-advocacy groups for people with ID and their families. Key implications for practice Families of people with intellectual disabilities in Kinshasa, Democratic Republic of the Congo experience personal and family-level stigma Family members use a range of coping strategies, such as referencing religion; educating others; and participating in self-help associations Future interventions might create opportunities for targeted, local contact with stigmatized persons; reduce or eliminate negative and stigmatizing names for people with ID; and promote self-help for people with ID and their families.

Maintenance of Abstinence in Self-Help Groups

To analyse abstinence rates 12 months after alcohol cessation in a sample of French subjects participating in support group meetings. The project was co-designed with support group representatives, and co-investigator roles were delegated to meeting managers. Subjects who had stopped drinking for <3 months were included. An independent investigator evaluated alcohol intake and group attendance every 3 months using a questionnaire, and time to first drink was analysed using survival curves. Overall, 145 participants were included, mean age 47 years. At 1 year, 43% of the 119 who could be evaluated were abstinent. Relapse rates did not differ by gender, withdrawal method, previous stays in a rehabilitation unit or time of first contact with the self-help association. However, participants receiving specialist medical and/or psychological support in addition to attending group meetings had a significantly lower abstinence rate than those who only attended group meetings, although their attendance at group meetings was similar. Self-help associations can participate in rigorous scientific studies. The present results identified a subgroup of individuals with alcohol problems who attended self-help groups, but not traditional care pathways. Having additional specialist support was not associated with better outcome.

English

The paper examines the dynamics of a socio-religious self-help association by looking at the celebration of Maheb&auml;r, a religious-oriented association, in Adi Ei&rsquo;r&auml;, Ethiopia. Maheb&auml;r is an indigenous socio-religious organization of individuals who pledge as members to treat one another as equals. It is dedicated to honor a particular sacred religious figure. Like Equb and Edir, Maheb&auml;r is by far the most important social organization that has partly eased the social, gender and ethnic polarities&nbsp;&nbsp; in the community. The finding shows that Maheb&auml;r is not only a source of fraternity and sorority in the community, but also takes into account the notion of development and gender equality. Maheb&auml;r allows both men and women to form separate organization in order to find support, affirmation, and enjoyment in the comfort of persons of their own gender. Under the umbrella of the socio-religious association, women managed to express themselves freely in a way that they could not display in public. They also pledged to help each other in time of need. Since members are expected to raise funds that will be utilized for the monthly festivity. In the process, Maheb&auml;r incubates the concept of saving and mutual assistance in the community. It plays a key role in generating specific self-help associations and fosters a high degree of generalized reciprocity between members. Maheb&auml;r is a lasting and germane socio-economic organization that contributes to socio-political dynamics in the society. &nbsp; Key words: Maheb&auml;r, reciprocity, feast, Socio-Religious Association.

Gathering Opinions on Depression Information Needs and Preferences: Samples and Opinions in Clinic Versus Web-Based Surveys.

BackgroundThere has been limited research on the information needs and preferences of the public concerning treatment for depression. Very little research is available comparing samples and opinions when recruitment for surveys is done over the Web as opposed to a personal invitation to complete a paper survey.ObjectiveThis study aimed to (1) to explore information needs and preferences among members of the public and (2) compare Clinic and Web samples on sample characteristics and survey findings.MethodsWeb survey participants were recruited with a notice on three self-help association websites (N=280). Clinic survey participants were recruited by a research assistant in the waiting rooms of a family medicine clinic and a walk-in medical clinic (N=238) and completed a paper version of the survey.ResultsThe Clinic and Web samples were similar in age (39.0 years, SD 13.9 vs 40.2 years, SD 12.5, respectively), education, and proportion in full time employment. The Clinic sample was more diverse in demographic characteristics and closer to the demographic characteristics of the region (Winnipeg, Canada) with a higher proportion of males (102/238 [42.9%] vs 45/280 [16.1%]) and nonwhites (Aboriginal, Asian, and black) (69/238 [29.0%] vs 39/280 [13.9%]). The Web sample reported a higher level of emotional distress and had more previous psychological (224/280 [80.0%] vs 83/238 [34.9%]) and pharmacological (202/280 [72.1%] vs 57/238 [23.9%]) treatment. In terms of opinions, most respondents in both settings saw information on a wide range of topics around depression treatment as very important including information about treatment choices, effectiveness of treatment, how long it takes treatment to work, how long treatment continues, what happens when treatment stops, advantages and disadvantages of treatments, and potential side effects. Females, respondents with a white background, and those who had received or felt they would have benefited from therapy in the past saw more information topics as very important. Those who had received or thought they would have benefited in the past from medication treatment saw fewer topics as important. Participants in both groups expressed an interest in receiving information through discussion with a counselor or a physician, through written brochures, or through a recommended website.ConclusionsThe recruitment strategies were helpful in obtaining opinions from members of the public with different concerns and perspectives, and the results from the two methods were complementary. Persons coping with emotional distress and individuals not specifically seeking help for depression would be interested in information to answer a wide range of important questions about depression treatment. The Clinic sample yielded more cultural diversity that is a closer match to the population. The Web sample was less costly to recruit and included persons who were most interested in receiving information.

Use of Psychoactive Medication in Short- and Long-term Abstainers from Alcohol.

To document the use of prescribed psychoactive medicines in France in patients recovering from alcohol use disorders (AUDs). Survey among short- and long-term abstainers attending groups of French self-help associations for AUDs, recording socio-demographic profile, duration of abstinence, prescription of psychoactive medication and attitudes towards that, and whether or not in medical or psychological follow-up for AUD. Five hundred seventy-five abstainers participated. More than a half had stopped drinking for at least 5 years. About 25% of the very long-term abstainers were still in follow-up. Benzodiazepines, then antidepressants, were the most frequently used medication. Prescriptions of medication decreased with length of abstinence; was always higher in women than in men and in those with a medical follow-up. About 45% claimed that they were 'dependent' on their pills. Ten years after having stopping drinking, 19 and 42.1% of men and women, respectively, were still under medication. Cluster analysis of self-opinion on medication showed that in ~30% of the subjects medication seemed to be prescribed for precautionary reasons. Psychoactive medication in France is frequently prescribed for years following alcohol withdrawal. While it is possible that this is over-prescription, and further work in this regard is needed, changes in an on-going treatment for a given patient would need to be cautious. Psychoactive medication in alcohol use disorders often prescribed for long-term abstainers in France. Benzodiazepines and antidepressants are the most frequently prescribed drugs. Prescription is more frequent in women and in those subjects having medical follow-up for their alcohol problem. Over-prescription is discussed.