Family Support Groups Research Articles

Post-traumatic stress disorder - are we doing all we can? A UK national-based survey

Post-traumatic stress disorder (PTSD) is a well-recognised complication in patients discharged from the ICU. ICU clinics have been recommended to treat physical and psychosocial problems post discharge, with guidelines issued by the Department of Health UK [1]. Recent evidence has advocated the use of patient diaries to reduce the incidence of new-onset PTSD [2]. Family support groups may also play a pivotal role [3]. We performed a national survey via the Intensive Care Society (ICS) to determine the provision of follow-up clinics, patient diary services and family support groups.

Musculoskeletal anomalies in a large cohort of boys with 49, XXXXY

49, XXXXY is a rare aneuploidy and variant of Klinefelter syndrome, occurring in 1 per 80,000-100,000 live births. We present a cohort of 40 affected males, focusing on musculoskeletal problems. Subjects were participants in an annual 49er family support group meeting. Children were examined in a multidisciplinary clinic by a pediatric neurologist and geneticist, a pediatric orthopedist, a neurodevelopmentalist, and two physical therapists. The patient data were collected from this clinic from 2004 to 2012. All patients were required to have karyotypes that confirmed the presence of XXXXY. There was a high prevalence of musculoskeletal disorders, particularly hypotonia (34 patients [85%]), radioulnar synostosis (30 [75%]), pes planus (26 [65%]), asymmetric hip rotation (27 [67.5%]), and clinodactyly (24 [60%]). Other, less common lower-extremity disorders, included, 5 patients (12.5%) with unilateral club foot, 5 boys (12.5%) with pes cavus, 10 patients (25%) genu valgum and 2 children with genu varus (5%). To our knowledge, this is the first large cohort of boys with 49, XXXXY that focuses on musculoskeletal disorders. There was an increased incidence of hypotonia, clubfoot, avascular necrosis of the femoral head, radioulnar synostosis, and pes planus compared to the normative population. Boys with 49, XXXXY would benefit from multidisciplinary evaluations, particularly from pediatric orthopedists, physical therapists, neurologists, and geneticists for appropriate medical care.

Veterinarian challenges to providing a multi-agency response to farm animal welfare problems in Ireland: responding to the human factor.

In 2012, the authors undertook a study of the challenges facing government and private veterinarians in responding to the human element of farm animal welfare incidents (i.e. the personal problems and difficulties of farmers that can result in farm animal neglect). This paper reports their findings and examines the role of veterinarians in responding to the difficulties of farmers. It also looks at their experiences of attempting to build a multi-agency approach involving veterinary and human support services. This paper builds on a study whereby the authors considered how social, health and attitudinal factors, as well as mental health problems, contribute to farm animal welfare incidents in Ireland. An early warning system involving relevant agencies is in place to identify and prevent farm animal welfare problems before they become critical. The literature provides examples of private veterinarians combining with support services where there are indicators of animal and human abuse. Yet there are no research examples of government or private veterinarians linking with support services to resolve farm animal welfare cases where there are social, health, and/or mental health difficulties with the herd owner. Four focus groups were conducted with government veterinarians (n = 18) and three with private veterinarians (n = 12). Government veterinarians made contact with support services to seek advice on how best to respond to the human element of farm animal welfare incidents, and/or to seek support for the herd owner. Contact between government and private veterinarians was driven by the former. Communication between agencies was influenced by individual efforts and personal contacts. Formal structures and guidelines, perceived professional capabilities in determining herd owner needs, and client confidentiality concerns among support services and private veterinarians were less influential. The fear of losing clients and the financial implications of this were also cited by private veterinarians. Family, neighbours and local support groups assisted in reaching an on-farm solution. The paper concludes with the requirements for a multi-agency approach in Ireland: the provision of tailored information and guidelines targeting government and private veterinarians and support services, and a comprehensive structure for relationship-building, planning, and cross-reporting between all the relevant agencies.

Use of Alzheimer family support group by community-residing caregivers

This paper describes the author’s experience as a new co-facilitator for an Alzheimer’s Disease Family Support Group and reviews the preliminary phase of group practice and the dynamics of the beginning phase of co-facilitating the Alzheimer’s Family Support Group. The paper reviews the needs that Alzheimer Support Group would meet, purpose of the group, agency and sponsorship support for Alzheimer Support Group, recruitment, group composition, group timing and structure, leadership of group, orientation of group members, content of group meetings, group sessions, and anticipated obstacles, and concludes with the importance of empowerment-oriented social workers who share the message that change is possible with others who are struggling, while working side-by-side with them to achieve changes and provide a new beginning – a new path for caregivers – a path of self discovery. As Alzheimer’s disease progresses caregivers and loved ones of people with the disease are often challenged on a daily basis – emotionally, mentally, and physically. Being with other people in similar situations encourages group members to share information, exchange coping skills, give and receive mutual support, vent their frustrations and share their success stories. Caregiving for a person with cognitive impairments can be a very difficult task, but knowing that you are ‘all in the same boat’ provides the life preserver to the caregiver – giving nourishment to the soul.

Defining Treatment as Usual for Attenuated Psychosis Syndrome: A Survey of Community Practitioners

Schizophrenia and related disorders are often preceded by attenuated psychosis symptoms, sometimes referred to as attenuated psychosis syndrome, but little is known about practitioners' current practices with regard to this population. This survey of clinical psychologists, psychiatrists, and general practitioners explored treatment as usual of attenuated psychosis syndrome. In 2008, a total of 1,500 practitioners were mailed surveys containing vignettes describing individuals with full, attenuated, and no psychotic symptoms and a checklist of possible interventions. Practitioners were asked to select interventions that would help or harm the individual. The responses (N=293, 20%) suggested that practitioners treated attenuated psychosis syndrome similarly to full-threshold psychosis. The use of antipsychotic medications to treat attenuated symptoms was endorsed by 69% of practitioners. Family support groups and family involvement were endorsed by 58% and 49% of respondents, respectively. Further development and dissemination of practice guidelines may help providers treat attenuated psychosis syndrome.

Predicting attendance at dementia family support groups.

This longitudinal study examined the predictors of dementia family caregivers' self-reported attendance at support group meetings over 6 months. First-time attendees were contacted by telephone after their first meeting and assessed for (a) perceptions of similarity between themselves and other members, (b) depressive symptoms, and (c) perceptions of social support from the facilitator and other members. Participants (N = 70) were recontacted 6 months later to obtain self-reports of attendance patterns. Self-reported attendance at any meeting during this follow-up period was predicted by perceived similarity in care recipient's stage of dementia and perceived support from group members as assessed at the first interview. Greater perceived support from group members and fewer depressive symptoms at time 1 predicted a higher frequency of support group attendance over the follow-up period. Results have implications for orienting new support group members as well as training and supporting group facilitators.

CILIA2012: Cilia in development and disease

In May 2012, around 270 researchers from 20 different countries participated in the CILIA2012 conference held at the UCL Institute of Child Health, in London. This was the first international scientific conference devoted to Cilia in Development and Disease co-organised with the Ciliopathy Alliance, a consortium of ciliopathy patient organisations. These proceedings provide an almost complete account of the scientific content of the meeting and contribute to describing the current state of cilia research during an exciting period for this rapidly expanding field. The last decade has seen spectacular and rapid advances in our understanding of the ubiquity and central role for cilia in developmental processes, and our insight into the molecular basis of numerous diseases that have emerged as 'ciliopathies'. In recognition of the broad sweep of interests amongst the conference delegates and within the field, the conference sessions covered five mains subject areas. These with the keynote speakers who presented in each session were: (1) Clinical and novel aspects of ciliopathies (Heymut Omran, University of Munster, Germany and Friedhelm Hildebrandt, University of Michigan, USA); (2) Structure and function of cilia (Brad Yoder, University of Alabama, USA and Greg Pazour, University of Massachusetts, USA); (3) Cilia and development (Kathryn Anderson, Sloan-Kettering Institute, USA and Jeremy Reiter, University of California San Francisco, USA); (4) Cilia and disease (Enza Maria Valente University of Messina, Italy, and Nicholas Katsanis, Duke University, USA); (5) Translational therapy and ciliotherapeutics (Peter Jackson, Genentech and Rachel Giles, University Medical Center Utrecht, Netherlands). A concentrated schedule of talks and posters chosen from the submitted abstracts was assembled by the organising committee which included significant unpublished data. Thirty-nine oral presentations were given, and 139 posters presented in total, covering many different diseases, numerous model organism systems, and including studies of almost all organs in the body. The plenary speaker was John Wallingford, (University of Texas at Austin, USA) who spoke on 'Planar cell polarity, cilia and human disease'. The scientific congress was preceded by a public engagement event that provided a unique opportunity for clinical and scientific researchers to meet with patients and relatives who suffer from ciliopathies, and other organisations working in their support. Joseph Gleeson (University of California San Diego, USA) gave the keynote talk at this event 'Translating gene discoveries for patient benefit'. Information stands were well attended by participants, organised by a number of groups including EuroWABB, Polycystic Kidney Disease Charity, Primary Ciliary Dyskinesia Family Support Group, Laurence Moon Bardet Biedl Society, Joubert Syndrome in the UK, Kidney Research UK, Deafness Research UK and the Genetic Alliance/Rare Disease UK.

A Review of Interventions for Substance Use Among Homeless Youth

This review summarizes existing evidence on interventions to address substance use problems among homeless youth. Fifteen studies met the inclusion criteria of the review. The quality of included studies was analyzed using explicit and well-validated criteria. Interventions evaluated ranged from individual-focused therapies such as brief motivational intervention, community reinforcement approach, and knowledge and skills training, to broader interventions such as family therapy, support groups, and shelter-based health care and housing programs. Participants reported improvements in substance use outcomes over time in most of the studies. However, the superiority of a specific intervention is difficult to determine because of the heterogeneity of the interventions and the few studies conducted on each intervention. Implications for practice and research are discussed.

Psychological impact on caregivers traumatized by the violent behavior of a family member with schizophrenia

BackgroundA combination of factors such as substance abuse problems, medication noncompliance, and insufficient insight are generally known to increase the risk of violent behavior. However, little is known regarding the psychological impact on caregivers who are traumatized by the violent behavior of a family member with schizophrenia. Therefore, we carried out an investigation to measure this impact. MethodA questionnaire was given to 116 caregivers of individuals with schizophrenia in family support groups in Seoul and Daegu, Korea. Their responses were then evaluated using the 22-item version of the Impact of Event Scale-Revised (IES-R), the 8-item short version of the Zarit Caregiver Burden Interview (ZBI-8), and the 15-item version of the Mental Illness and Disorder Understanding Scale (MIDUS). ResultsThe mean (SD) IES-R score was 26.69 (17.83) (range, 1–84). Multiple regression analysis showed that the psychological impact of traumatic experiences was significantly associated with the following factors: medical non-adherence (P<0.01), living without the patient (P<0.01), and caregiver burden (P<0.05). ConclusionOur results from the present study suggest that even when family caregivers live apart from the patient, they still experience the harmful psychological impact of trauma from the patient's violent behavior. The psychological impact continued as a result of the huge caregiver burden and the medication non-adherence of the family member with schizophrenia in spite of receiving long-term treatment and multiple hospitalizations. The present findings suggest the need for improved community-based service for preventive long-term care, including medication adherence, for outpatients with schizophrenia instead of multiple hospitalizations.

Familiares de pessoas diagnosticadas com transtornos alimentares: participação em atendimento grupal

O discurso biomédico com foco no diagnóstico frequentemente tem sido utilizado como recurso exclusivo para informar a assistência aos familiares de pessoas diagnosticadas com anorexia nervosa e bulimia nervosa. Este estudo buscou compreender como essas famílias constroem justificativas para participação em um grupo de apoio no contexto de tratamento dos transtornos alimentares. Uma sessão desse grupo, que abordava a temática de nosso interesse, foi analisada com apoio do discurso construcionista social. A análise empreendida destacou os sentidos coproduzidos sobre a ausência de alguns familiares no grupo, a diminuição de frequência de participação dos pais, a função desse grupo no tratamento, a periodicidade ideal de participação da família e a possibilidade de familiares e coordenadores do grupo coconstruírem o espaço conversacional.

Lessons Learned in Developing a Culturally Adapted Intervention for African-American Families Coping with Parental Cancer

Prior clinical research supports the effectiveness of cancer support groups for cancer patients and their families, yet African-American families continue to be underrepresented in cancer support groups and in cancer clinical research studies. In order to fill this gap, we developed and evaluated a culturally adapted family support group for African-American families coping with parental cancer. We encountered unexpected challenges in overcoming barriers to recruitment, partnering with oncology providers, and building trust with the African-American community and African-American families coping with parental cancer. We describe actions taken during the two phases of this study and lessons learned along the way about recruiting and engaging African-American families in cancer support group studies, partnering with oncology providers, networking with the African-American community, and the importance of demonstrating cultural sensitivity to overcome the understandable historical legacy of mistrust.

Resources, Roadblocks and Turning Points: A Qualitative Study of American Indian/ Alaska Native Adults with Type 2 Diabetes

Type 2 diabetes is a worldwide health problem that has reached epidemic proportions in some communities. Alaska Native and American Indian (AN/AI) people are disproportionately diagnosed with type 2 diabetes and incidence is increasing in many Alaska communities. Developing effective interventions requires understanding the social and psychological factors that impact effective management of diabetes, yet little is known about these factors in AN/AI communities. The objective of this study was to explore perceived psychosocial needs and barriers to management of diabetes among AN/AI adults with type 2 diabetes receiving care at the Alaska Native Primary Care Center (ANPCC) to inform programmatic efforts and potential future research. We conducted three focus groups and five interviews with 13 AN/AI adults with type 2 diabetes. Interview and focus group questions elicited perceived factors that affect management of diabetes, with a focus on the psychological, social and spiritual impacts of diabetes. Data were transcribed, coded and analyzed using thematic analysis. Key themes that emerged from these data included resources and roadblocks, as well as turning points in the trajectory of diabetes. Resources are factors with a perceived positive impact on management of diabetes, including: (1) knowledge and education about diabetes, (2) social support from other people with diabetes, (3) spirituality, and (4) self-efficacy. Roadblocks are factors with a perceived negative impact on management of diabetes and include: (1) self-reported lack of knowledge about nutrition and diet, (2) social difficulties caused by dietary restrictions, and (3) co-morbid medical conditions. Finally, turning points are experiences described by participants as having transformed roadblocks in resources and thus facilitating improvement in the management of diabetes. Future programmatic interventions to improve management of diabetes with this population should focus on improving dietary education and social support opportunities for newly-diagnosed individuals. Also, educational and support opportunities for family members and friends of individuals with diabetes should also be offered to facilitate understanding and support of their loved ones' management of diabetes, especially with regard to dietary restrictions in social settings. Efforts should also focus on strengthening newly-diagnosed individuals' self-efficacy and providing ongoing support as individuals progressively adjust to the illness over time and make behavioral changes. Future research with this population should explore the effects of family support groups and the possibility of Web-based or other alternative interventions for improving psychosocial health and management of diabetes efforts.

Facilitating HIV testing, care and treatment for orphans and vulnerable children aged five years and younger through community‐based early childhood development playcentres in rural Zimbabwe

IntroductionEarly diagnosis of children living with HIV is a prerequisite for accessing timely paediatric HIV care and treatment services and for optimizing treatment outcomes. Testing of HIV-exposed infants at 6 weeks and later is part of the national prevention of mother to child transmission (PMTCT) of HIV programme in Zimbabwe, but many opportunities to test infants and children are being missed. Early childhood development (ECD) playcentres can act as an entry point providing multiple health and social services for orphans and vulnerable children (OVC) under 5 years, including facilitating access to HIV treatment and care.MethodsSixteen rural community-based, community-run ECD playcentres were established to provide health, nutritional and psychosocial support for OVC aged 5 years and younger exposed to or living with HIV, coupled with family support groups (FSGs) for their families/caregivers. These centres were located in close proximity to health centres giving access to nurse-led monitoring of 697 OVC and their caregivers. Community mobilisers identified OVC within the community, supported their registration process and followed up defaulters. Records profiling each child's attendance, development and health status (including illness episodes), vaccinations and HIV status were compiled at the playcentres and regularly reviewed, updated and acted upon by nurse supervisors. Through FSGs, community cadres and a range of officers from local services established linkages and built the capacity of parents/caregivers and communities to provide protection, aid psychosocial development and facilitate referral for treatment and support.ResultsAvailable data as of September 2011 for 16 rural centres indicate that 58.8% (n=410) of the 697 children attending the centres were tested for HIV; 18% (n=74) tested positive and were initiated on antibiotic prophylaxis. All those deemed eligible for antiretroviral therapy were commenced on treatment and adherence was monitored.ConclusionsThis community-based playcentre model strengthens comprehensive care (improving emotional, cognitive and physical development) for OVC younger than 5 years and provides opportunities for caregivers to access testing, care and treatment for children exposed to, affected by and infected with HIV in a secure and supportive environment. More research is required to evaluate barriers to counselling and testing of young children and the long-term impact of playcentres upon specific health and developmental outcomes.

Ophthalmologic findings in Aicardi syndrome

Aicardi syndrome is a rare X-linked disorder that has been characterized classically by agenesis of the corpus callosum, seizures, and the finding of chorioretinal lacunae. This triad has been augmented more recently by central nervous system and ocular findings. The goal of this study was to determine how frequently other ophthalmologic findings are associated with Aicardi syndrome. A single ophthalmologist recorded the ocular and adnexal findings of 40 girls with this disorder at the annual meeting of an Aicardi syndrome family support group. For each subject, the examiner performed facial anthropometrics, portable biomicroscopy, and, where feasible, indirect ophthalmoscopy. The most common findings were chorioretinal lacunae in 66 (88%) of 75 eyes and optic nerve abnormalities in 61 (81%) of 75 eyes. Other less common findings included persistent pupillary membrane in 4 (5%) of 79 eyes and anterior synechiae in 1 of 79 eyes (1%). Although the ophthalmic hallmark and defining feature of Aicardi syndrome is the cluster of distinctive chorioretinal lacunae surrounding the optic nerve(s), the spectrum of ocular, papillary, and retinal anomalies varies widely, from nearly normal to dysplasia of the optic nerve and to severe microphthalmos.

The emerging microdeletion and microduplication syndromes: the importance of a diagnosis for both professionals and families

Background and aims Thousands of babies are born each year with errors in the make-up of their chromosomes which can affect their development, learning and behaviour although the effects are variable. These changes frequently constitute a chromosome imbalance: extra or missing chromosome material. Until recently these chromosome aberrations were detected by microscopic karyotype analysis and submicroscopic deletions and duplications were missed. Molecular techniques such as microarray-based comparative genomic hybridisation (arrayCGH) can today identify previously undetectable microdeletions and microduplications, some causing new syndromes. ArrayCGH offers families greater hope of a genetic diagnosis for their child despite the limitations of all genetic tests. The diagnosis of a new syndrome can alert both clinicians and families to future health problems and ensure appropriate screening is in place. Additionally, arrayCGH usually identifies the missing or duplicated genes, potentially improving counselling. Methods Unique is a world-leading support group for families with a rare chromosome disorder (RCD). At November 2011, Unique has over 8,600 member families, representing more than 11,000 individuals. As diagnoses of RCDs increase, membership of Unique is also increasing. Results ArrayCGH offers clinicians faced with a child with non-specific developmental delay, cognitive impairment or challenging behaviour a 20 percent diagnostic rate (compared to 7 percent with karyotype analysis). This has led to a rise of over 100 percent in new members joining Unique annually in the period 2008 to 2010 (the period that arrayCGH was rolled out). For the 870 members joining Unique in November 2010-October 2011 arrayCGH was the most common genetic test used to diagnose their genetic disorder. Many are unique disorders, not previously reported in the medical literature. In response to this, Unique has produced 19 new medically-verified guides on microdeletions and microduplications. Information guides are compiled from the medical literature; from Unique9s database and other publicly available databases; and from detailed surveys completed by member families. Conclusion The rapid increase in diagnosis of RCD made possible by arrayCGH has led to a steep rise in membership of Unique. We continue to publish new information guides in response to this, including newly-emerging microdeletion and microduplication syndromes.

Family Support Groups: An Integral Part of Patient Care

Family Support Groups: An Integral Part of Patient Care

Predicting facilitators' behaviors during Alzheimer's family support group meetings.

A social ecological model was used to predict facilitators' behaviors observed during Alzheimer's Association sponsored family support group meetings (N = 66). Information about group leaders was obtained via individual telephone interview prior to the observation of their support group by trained raters. Family dementia caregivers (N = 296) provided basic demographic and caregiving-related information at the end of the observed meeting. Caregiver- and group-level variables predicted ratings of observed leader support during support group meetings. The addition of leader characteristics such as years of experience or professional roles did not significantly contribute to the model. This study lends credence to ecological models emphasizing the influence of social context. Recommendations are made for facilitator training and management of Alzheimer's Association sponsored support group meetings.

Clinical Social Work Practice with Former System Youth with Mental Health Needs: Perspective of Those in Need

The purpose of this study is to describe the types of programs and mental health services former system youth with mental health histories would be inclined to engage in to manage their mental health difficulties, along with the factors that might hinder them from engaging in these services. A series of closed and open-ended questions on potential programs and services were asked, as part of a larger study. Participants were former system youth; specifically 18–30 year olds who were diagnosed with a mood disorder and were involved with public mental health and social services (e.g., public welfare, child welfare, juvenile justice) during childhood. Responses to the open-ended questions were categorized and percentages are reported from the yes/no items. Eighty-three percent and 76% reported that they would be enticed to come to a support group and panel discussion on mood disorders, respectively, while only 46% reported that they would attend a family support group. Talking with others who have had similar experiences, material possessions and creative expression were the most common responses regarding what would entice them to get involved. Further, peer disrespect, transportation, and daycare were common barriers to potential participation. As the field continues to build knowledge on system-wide strategies to improve agency-based mental health care for transitioning youth and young adults, new evidence-based approaches may benefit from listening to the specific needs, preferences, and suggestions of these youth themselves.

An experimental study on the effectiveness of a mutual support group for family caregivers of a relative with dementia in mainland China

When caring for an older relative with dementia, family members experience considerable distress and burden. Literature reviews show that supportive group interventions for these caregivers have significant positive effects on improving their distress and quality of life, but not consistent and conclusive. Limited research is found in Asian populations. This study tested the effectiveness of a 12-session bi-weekly mutual support group program for Chinese family caregivers of a relative with dementia in Hong Kong, when compared with standard family support service. An experimental study with pre- and post-test, parallel groups design was conducted. A randomized sample of 78 family caregivers, 39 in each of the experimental and control groups, from one regional dementia care center participated in the study. A protocol was specifically designed by an advanced practice nurse to guide the mutual support group process and the facilitator and peer leader training, based on evidence from the literature on family support group intervention in Western countries. The results of ANOVA tests indicated that the mutual support group participants had significantly greater improvements in distress levels and quality of life than the control group. There were only mild changes in the demands for mental health services in both groups at post-test. These findings support the effectiveness of mutual support groups to offer psychosocial support to Chinese family caregivers in dementia care beyond routine community mental health care.

A Molecular, Genetic, and Diagnostic Spotlight on Fanconi Anemia

A Molecular, Genetic, and Diagnostic Spotlight on Fanconi Anemia