Family Support Groups Research Articles

Epidemiologic survey of 196 patients with congenital central hypoventilation syndrome.

This study examined the cross-sectional medical and social characteristics of children diagnosed with congenital central hypoventilation syndrome (CCHS). A detailed questionnaire was mailed to all families with a child with CCHS who are affiliated with a family network or support group. The questionnaire response rate was >75% (n=196). Mean age was 10.22 years +/- 6.6 years (SD) (range, 0.4-38 years), with a 1:1 sex ratio. Multisystem involvement was almost universal among the cohort, with Hirschsprung's disease (HD) present in 16.3%; 61.7% of the children had a tracheotomy, but 14.3% were never tracheotomized, with 77 subjects (39.3%) not having a tracheostomy tube at time of survey. Respiratory support approaches varied but clearly reflected the trend towards earlier and more widespread transition to noninvasive ventilatory modalities. Significant developmental problems were noted, but attendance in regular classes occurred in the majority. Significant deficiencies in routine periodic evaluation and management were reported. In addition, the presence of CCHS was associated with a significant financial and psychosocial burden to the families. In conclusion, a comprehensive survey of 196 CCHS children and their families revealed a cross-sectional picture of substantial medical and psychosocial complexities associated with this disorder, and pointed out substantial inadequacies in routine preventive care that appear to impose stress on the families. The emerging trend of earlier transition to noninvasive ventilatory support warrants future studies. Implementation of recommended guidelines for diagnosis and multidisciplinary follow-up of CCHS should ultimately ameliorate the long-term outcome of this lifelong condition.

Primary ciliary dyskinesia (Siewert's/Kartagener's syndrome): respiratory symptoms and psycho-social impact.

BackgroundAlthough the pathophysiological defect in primary ciliary dyskinesia (PCD; Siewert's / Kartagener's syndrome) is now well characterised, there are few studies of the impact of the condition upon health function, particularly in later life. This study assesses the health impact of the condition in a large group of patients. In addition, it assesses the similarity in age of diagnosis, symptoms and problems of those with situs inversus (PCD-SI) and those with situs solitus (PCD-SS).MethodsPostal questionnaire sent to members of the UK Primary Ciliary Dyskinesia Family Support Group. The questionnaire contained the St. George's Respiratory Questionnaire (SGRQ) and the SF-36 questionnaire for assessing health status.Results93 questionnaires were returned, representing a 66% response rate. Replies were received from similar numbers of PCD-SI and PCD-SS. Individuals with PCD-SI did not show a significant tendency to be diagnosed earlier, and neither did they show any difference in their symptoms, or the relationship of symptoms to age. Respiratory symptoms were fairly constant up until the age of about 25, after which there was a slow increase in symptoms, and a decline in health status, patients over the age of 40 being about one and a half standard deviations below the mean on the physical component score of the PCS. Patients diagnosed earlier in life, and hence who had received more treatment for their condition, had better scores on the SGRQ Impact and Activity scores.ConclusionsPCD is a chronic condition which has a progressively greater impact on health in the second half of life, producing significant morbidity and restriction of life style. Early diagnosis, and hence earlier treatment, may improve symptoms and the impact of the condition.

To Lose a Limb

To Lose a Limb

Straight Talk About Your Mental Health

Back to table of contents Previous article Next article Book ReviewsFull AccessStraight Talk About Your Mental HealthJean K. Bouricius, M.S.Jean K. BouriciusSearch for more papers by this author, M.S.Published Online:1 Nov 2003https://doi.org/10.1176/appi.ps.54.11.1551AboutSectionsPDF/EPUB ToolsAdd to favoritesDownload CitationsTrack Citations ShareShare onFacebookTwitterLinked InEmail The title of this book indicates that it is intended for patients with mental illness. However, there are many patients whose symptoms would make it difficult for them to read and understand Straight Talk About Your Mental Health. Hopefully, each patient who needs this information has a relative or a friend who can also read the book and talk with the patient's therapist to learn how best to help the patient. Although some therapists refuse to talk with family members, the book's author, James Morrison, M.D., indicates that, with the patient's permission, he will willingly do so.Morrison lists the responsibilities of the therapist, including recognizing the symptoms of mental disorder and making a diagnosis. Once these tasks have been accomplished, the therapist should present the patient with a plan estimating the time that may be required to achieve the desired improvement as well as the cost of treatment. If it appears that another therapist, with a different specialty, might work better with this particular patient, the therapist should recommend such a specialist.Perhaps the most useful feature of this book is the tables of medications—antidepressants, mood stabilizers, antianxiety drugs, antipsychotic drugs, and drugs for dementia. Both the trade name and the generic name are given for each drug, along with usual dosages and possible interactions with other drugs. Major side effects are described in the chapters about the different classes of drugs.Some side effects seem to be glossed over in this book. For example, the book mentions that lithium dosage may need to be lowered to avoid kidney disease. However, it does not mention that kidney damage does in fact occur among a number of persons who have been taking lithium for many years, which is serious and requires a change from lithium to another mood stabilizer. The side effects of dystonia and akathisia, which can be caused by the older antipsychotics, are also of greater concern than this book implies. Many patients experience the extreme restlessness called akathisia when given drugs such as haloperidol or fluphenazine. Akathisia makes some patients so uncomfortable that they may refuse to continue taking medication.Acute dystonia produces muscle spasms of the upper body that may affect mouth, neck, and eye muscles as well as the arms and hands. Patients may drool and be unable to swallow. Benadryl (diphenhydramine)—the antidote—must be given by injection. Dystonia is a frightening condition to watch and must be absolutely horrible for the patient. Also, the weight gain that almost always accompanies use of olanzapine is extremely difficult to manage. It is understandable that a patient who experiences such side effects may begin to refuse all medication.Substance abuse is often a major problem for persons who have a mental illness. I take issue with Morrison's opinion that marijuana use is not a problem; I believe it can be a serious problem for people with schizophrenia. When the illness is well controlled, the use of marijuana has been observed to induce psychosis again. A 1989 study of 45,000 Swedish conscripts showed that heavy marijuana users were six times as likely as nonusers to develop schizophrenia. This finding suggests some sort of relationship between marijuana use and schizophrenia.However, overall I believe that Straight Talk About Your Mental Health is a worthwhile book.Ms. Bouricius, who lives in Amherst, Massachusetts, is a family member of the Alliance for the Mentally Ill of Western Massachusetts, retired after 14 years as a family support group facilitator and teacher of Family-to-Family classes.by James Morrison, M.D.; New York, Guilford Press, 2002, 359 pages, $35 softcover FiguresReferencesCited byDetailsCited ByNone Volume 54Issue 11 November 2003Pages 1551-1552 Metrics PDF download History Published online 1 November 2003 Published in print 1 November 2003

Military Psychiatrists Key Part Of Trauma-Treatment Team

Back to table of contents Previous article Next article Professional NewsFull AccessMilitary Psychiatrists Key Part Of Trauma-Treatment TeamChristine LehmannChristine LehmannSearch for more papers by this authorPublished Online:19 Sep 2003https://doi.org/10.1176/pn.38.18.0005Wounded U.S. soldiers returning from the war in Iraq are receiving mental health treatment from consultation-liaison psychiatrists at Walter Reed Army Medical Center in Washington, D.C.AP Photo/Gerald HerberteWhen U.S. soldiers are severely injured while stationed in Iraq or Afghanistan, once they are stabilized overseas, they are sent for surgery and rehabilitation to Walter Reed Army Medical Center in Washington, D.C. The teaching hospital has earned a reputation in the military for providing high-quality patient care.Members of the psychiatric consultation-liaison (C-L) service visit the soldiers daily to establish a therapeutic relationship.“We want the soldiers to see us as an ally that they can turn to for help,” Harold Wain, Ph.D., chief of the psychiatric C-L service told Psychiatric News. “We thank the soldiers for serving their country and introduce ourselves as members of the trauma-treatment team. We reassure them that we ask all injured soldiers the same questions.”The average length of stay at Walter Reed is two weeks to one month for most injured soldiers, said Wain. The main types of injuries are shrapnel wounds and severely damaged limbs that require amputation, he said.Wain estimated that more than 200 U.S. soldiers had been treated at Walter Reed from March, when Operation Iraqi Freedom (OIF) began, to last month. That estimate includes about 40 soldiers from the conflict in Afghanistan.Wain uses brief therapeutic interventions with the aim of preventing psychiatric stress disorders three or four months later. He honed this approach after the Pentagon was attacked in 2001. He and Maj. Geoffrey Grammer, M.C., an Army C-L psychiatrist, met with hospitalized civilian patients bedside and asked them about their experiences in a nonconfrontational and supportive manner.“We also used an array of medications and brief interventions including hypnotic and cognitive reframing techniques,” said Wain.“We focus on a person’s positive traits during brief psychotherapy to reinforce their resilience. For example, a soldier whose hand was blown off by a rocket-propelled grenade thought to pick [the hand] up and put in his gas mask for safekeeping so we could later reattach it. Another soldier who came under hostile fire remembered to put a tourniquet around his injured leg bone. Having a sense of humor also helps soldiers cope with their injuries,” said Wain.Walter Reed is receiving between 30 and 40 OIF casualties a week. Many soldiers display symptoms of acute stress disorder including hypervigilance, startle responses, flashbacks, and sleep disturbances, said Wain. The C-L staff explain to injured soldiers that these are normal reactions to a traumatic event and should disappear soon with treatment.“If the symptoms become more frequent or severe, we ask them to contact us, and we can provide a referral to a local psychiatrist. We also call soldiers 30 and 90 days postdischarge to get an update,” Grammer told Psychiatric News.The C-L service has diagnosed a handful of soldiers since March with posttraumatic stress disorder (PTSD). “They had severe injuries and prolonged stays in the intensive care unit,” explained Grammer.He uses hypnotic techniques including visual imagery to augment analgesics for soldiers experiencing uncomfortable physical sensations after their limbs are amputated. “One soldier who experienced ‘phantom limb’ said he felt his toes were crossed and he couldn’t uncross them. I taught him a hypnotic technique that distracted him from that sensation,” said Grammer.Amputees typically have to adjust their daily routines and activities once they return to their communities. “We help them anticipate what chores or athletic activities they can’t perform and suggest alternatives,” said Grammer.He talks frequently with family members who are staying near the hospital. “I ask them about the soldier’s circumstances and how they’re coping. I give them permission to take care of themselves because they can be so focused on their loved one that they forget about their own needs. I also mention the family support group to them to help ensure they can support the soldier’s recovery,” said Grammer.The C-L service also provides support groups for recovering soldiers, in addition to individual counseling. ▪ ISSUES NewArchived

Toward Empowerment: ReVisioning Family Support Groups

ABSTRACT Family support groups (FSG) have been recognized as an important and viable means for responding to the needs of family caregivers. How these groups work, however, is not well understood. The purpose of this qualitative exploratory study was to explore the impact of attending a family support group on the caregiving experience from the perspective of the family member. Personal, semi-structured interviews took place with eleven family members who had participated in at least one FSG. Data was analyzed for themes, using a constant comparative categorizing strategy. This analysis suggests that attending a FSG impacts the caregiving experience in four important ways: helping the family member to construct a self-identity as a ‘caregiver’; promoting a sense of personal competence; fostering the use of formal support groups; and creating a community context within which to experience the caregiving role. Cumulatively, these have the potential to contribute to a sense of empowerment for the family member by helping him or her to reposition the caregiving experience as more than a personal issue and promoting the emergence of a more collective voice.

Information sources and their use by parents of children with ophthalmic disorders.

Parents' input is critical to clinical management in pediatric ophthalmology. The importance of providing parents with appropriate information to enable them to participate effectively is recognized. However, little is known about the range of sources parents use to learn about their child's ophthalmic condition, which sources they find most useful, and how this relates to their understanding. Cross-sectional survey of the parents or usual caregivers of children with diverse ophthalmic disorders, diagnosed at least 1 year earlier, who attended pediatric ophthalmology clinics at Great Ormond Street Hospital, London, during 1 week in August 2001. Eighty-nine percent (n = 58) of parents with eligible children participated. Most parents received information from more than one source, with ophthalmologists (79%) and family practitioners (42%) being the two most frequently reported. Family support groups and voluntary organizations (29%) and the Internet (23%) were less commonly cited than anticipated. Parents reported receiving verbal information much more frequently than written information from professionals working with their children. Although 72% (n = 42) of parents could correctly name their child's diagnosis, only 46% (n = 27) were able to describe correctly the nature and impact of the disorder(s). Ophthalmologists were ranked as the most important source overall. The findings emphasize the key role of ophthalmic professionals in improving parental education directly, as well their responsibilities and opportunities to do so through supporting and shaping information provision through other sources, especially colleagues in primary care and the Internet.

Differences in supporting families of dementia patients and cancer patients: a palliative perspective.

To investigate what staff working in close contact with patients perceive as good support of families in dementia care as compared with support of families in palliative cancer care. During four national courses on dementia care and one national course on palliative cancer care, 316 and 121 participants, respectively, responded to an open-ended question: In your experience, what are the two most important measures for supporting families of dementia patients/severely ill cancer patients? Sixty-one items were coded and allocated into 10 main categories and analysed with both a qualitative and quantitative approach. The dominant items for both staff groups were to listen to the family member and to give information, although listening was significantly more often stressed in the palliative group (P < 0.001). The staff in dementia care stressed significantly more the importance to form support groups for families (P < 0.001), to offer respite care (P < 0.001), to educate families (P < 0.001) and to try to relieve the family's feeling of guilt (P < 0.001). In the palliative staff group, the importance of being available (P < 0.05), creating a sense of security (P < 0.001) and supporting the family after the patients death (P < 0.01) were significantly more focused on. The respondents from the dementia staff group and from the palliative cancer group stressed the importance of supporting family members. However, the type of support needed partly differs because of the different trajectories in dementia compared with severe cancer phases.

Genetics of gastrointestinal and hepatobiliary disorders: Working Group Report of the First World Congress of Pediatric Gastroenterology, Hepatology, and Nutrition.

Genetics of gastrointestinal and hepatobiliary disorders: Working Group Report of the First World Congress of Pediatric Gastroenterology, Hepatology, and Nutrition.

Is 'watchful waiting' a real choice for men with prostate cancer? A qualitative study.

To understand what leads men to choose 'watchful waiting' rather than active treatment for cancer of the prostate. Fifty men with confirmed prostate cancer in England, Wales and Scotland were interviewed about all aspects of their illness, for a Database of Individual Patients' Experience of illness. The sample included men at different stages of diagnosis and with experience of a wide range of treatments. We report here only what men said about their choice of treatment and the decision-making process. Watchful waiting would have been clinically inappropriate for almost half of the men (those with serious urinary symptoms and those with metastatic disease). However, few of the men who might have chosen watchful-waiting remembered this being presented as a serious option. Most in this group chose radical prostatectomy, radiotherapy, brachytherapy or cryosurgery. The few who chose watchful waiting had found doctors who supported their decision, had assessed the evidence from Internet sites, and were concerned about the side-effects and uncertain outcome of treatment. Men who chose watchful waiting, as well as those who opted for treatment, described considerable pressure from family members, doctors or support groups, to seek active treatment. This study helps to explain why some men will not contemplate watchful waiting, and why others may find it difficult to pursue that option. Understanding men's concerns may help clinicians to support men's treatment decisions. Treatment for prostate cancer is highly controversial because no randomized, controlled trials have shown whether or not active intervention increases survival. If trials are not completed it cannot be determined whether active treatments are the best course of action for men with prostate cancer.

MUDANÇAS INDIVIDUAIS E FAMILIARES OCORRIDAS EM PORTADORES DE ARTRITE REUMATÓIDE

O presente trabalho buscou verificar as dificuldades encontradas pelos indivíduos acometidos pela artrite reumatóide e as mudanças individuais e familiares ocorridas durante o processo da doença, bem como explorar o conhecimento do paciente e do cuidador familiar a respeito dessa patologia. É umestudo exploratóriodescritivo de abordagem qualitativa, que utilizou como técnica de coleta de dados a entrevista semi-estruturada. Os dados foram coletados no período de outubro a novembro de 2000, junto aos portadores de artrite reumatóide atendidos no Hospital Universitário de Maringá (HUM) ou participantes do programa Associação Maringaense de Apoio aos Reumáticos (AMAR). Os resultados foram distribuídos em três categorias: mudanças físicas, psicossociais e familiares, e dentro destas categorias os dados foram analisados em subcategorias. Nas mudanças físicas observou-se a presença de dor, limitação da mobilidade e edema; nas mudanças psicossociais, a impossibilidade de trabalhar, sentimentos/ manifestações afetivas pessoais negativas e a superação das dificuldades e, nas mudanças familiares, o apoio e a rejeição familiar.

Poor MH Care for Children Called National Crisis

Poor MH Care for Children Called National Crisis

Autonomy versus coercion: reconciling competing perspectives in community mental health.

Clinicians working in community mental health must currently attempt to reconcile competing practice perspectives: on the one hand consumer-driven approaches, and on the other hand a move to more paternalistic practices, advocated by family support groups, and reflected in assertive treatment programs and legislative initiatives such as community treatment orders. This article reviews these different perspectives, and offers some comments on practice guidelines for those working in this clinically and politically complex environment.

Church-based support groups for African American families coping with mental illness: outreach and outcomes.

To better understand how church-based support groups help African American families of persons with mental illness, this study examined the outreach efforts used to provide information about the support group to congregants as well as the participation outcomes reported by families who attended support group meetings. Results indicate that advertising group information in the church bulletin and families sharing their experiences with other congregants may be effective outreach strategies. Respondents' improved knowledge and morale outcomes suggest that church-based support groups may be a valuable coping resource for African American families of persons with mental illness.

Discussing End-of-Life Issues with Patients: Reflections on Developing an Interviewing Template to Assist First-Year Medical Students

First-year medical students at the University of Ottawa currently use an interview template to work with patients who have chronic illnesses. A second-year medical student (JJ) modified the template to facilitate the discussion of death and end-of-life care by students who may have had little previous experience with such sensitive topics. The modification was accomplished using the following strategies: a systematic literature review on long-term care or nursing home residents' end-of-life needs; participation in a support group for families of dying patients; volunteering in a day hospice program for two months; piloting the template with two palliative care patients, one resident of a long-term care facility, and one family member. The paper summarizes and reflects on the process.

Predicting the extent and stressfulness of problem rumors at home among Army wives of soldiers deployed overseas on a humanitarian mission.

Nearly 500 civilian wives of enlisted soldiers from Fort Drum, New York were surveyed about the extent to which they experienced, as problems, rumors about what was happening in Somalia and when their soldier would return from the Operation Restore Hope deployment to Somalia in 1993. Rumors, as problems, were cited less frequently than loneliness, fears about the soldier's safety, or ignorance of the situation in Somalia but more frequently than problems with communication, finances, or legal issues. The strongest initial predictor of such problems was having communication problems with the soldier. Other significant predictors included length of deployment, soldier's rank, and unit support systems. More frequent use of telephone or regular mail, however, did not appear to reduce such rumors. Stressfulness of rumors appeared to be reduced by good unit leadership, good family support groups, and better emotional adaptability to deployment by spouses, while increased by reliance on surface mail for communication with one's deployed spouse. Subsequent analyses indicated that having fears about the safety of one's soldier or concerns about not knowing what was going on in Somalia were also significantly correlated with rumors as problems. Our results may support hypotheses that rumors serve to fill gaps in official information and justify spouses' anxieties regarding the safety of their deployed soldier.

Electrophysiology study: a comprehensive review

An EPS provides valuable information about cardiac arrhythmias by recording intracardiac electrograms and using programmed stimulation techniques. Although the sequence of study protocols may vary with each institution, an EPS routinely begins with baseline measurement of conduction intervals. Subsequently, clinical arrhythmias are induced either by incremental or decremental pacing and extrastimulus techniques. Nurses must understand the technical and psychosocial aspects of an EPS to ensure adequate care. The primary role of nurses is to maintain a safe environment for the patient in the electrophysiology laboratory (i.e., maintain aseptic techniques and intervene when complications occur). Rapid technological advances and the increasing number of well-educated patients require that nurses be knowledgeable and skilled in providing progressive care, such as developing educational programs and support groups for patients and patients' families.

Normal Queers: Straight Parents Respond to Their Children's “Coming Out”

This article explores how normative understandings of gender, family, and sexuality provide the foundation for stigma, an avenue out of deviance, and the means by which stigma is perpetuated. Using participant‐observation and interview data from a support group for families of lesbian women and gay men, I examine the destigmatizing identity work with which straight parents responded to their children's lesbian and gay identities. The parents' reliance on conventional understandings of gender, sexuality, and parenting invoked and affirmed heteronormative conceptions of normalcy. This redrawing—and not fundamentally challenging—of the lines defining sexual normalcy left intact systemic logics supporting heterosexist sexual hierarchies.

Genetic Medicine: A Logic of Disease

Genetic Medicine: A Logic of Disease

A Study on Family Support, Self-Esteem and Life-Satisfaction in Homeless Persons (The Relationships between Institutionalized Residenis and Noninstitutionalized Residents)

The purpose of this study was to investigate the correlation of family support, self-esteem and life-satisfaction in homeless persons and to provide basic data to help them attain a better quality of life.From Jul. 1 to Oct. 10. 2000, 235 homeless persons, registered at the noninstitutionalized homeless and institutionalized homeless in Seoul, Were accepted as subjects for the study.The instruments used for this study were a Family support scale of Park. Jee Won, life-satisfaction scale of Wood, Wylied Sheafer and Rosenberg's Self-esteem Scale.The reliability of the scales were tested by Cronsbach's Alpha. The collected data Were analyzed by the SPSS program using unpaired t-test and Pearson's Correlation Coefficients.The results were as follows :1. There Was a statistically significantdifference in the level of demographic between family support groups for the homeless at institutionalized residents : age (t =2.23, p=.028). education background (f=5.53, p= 005), present illness(t=1.97, p== .052).emotion statest = 2.94. p= 041).2. There Was a statistically significant difference in the level of demographic between family support groups for the homeless at noninstitutionalized residents : types of disease (t=1.55, p=.161).3. There Was a statistically significant difference in the level of demographic between self-esteem groups for the homeless at institutionalized residents: types of disease (t =3.23. p=.004).4. There Was a statistically significant difference in the level of demographic between self-esteem groups for the homeless at noninstitutionalized residents : use of drugs(t=-3.23 p= .002). types of disease (t =3.23, p=.004).5. There Was a statistically significant difference in the level of demographic between life-satisfaction groups for the homeless at institutionalized residents : education background (t=3.11, p= .048). types of disease(t=3.40, p= .007), emotion states (t = 4.93, p= .004).6. There Was statistically significant difference in the level of demographic between life-satisfaction groups for the homeless at noninstitutionalized residents : smoking (t=-2.31, p= .023 ). types of disease(t=2.07, p= 041), emotion states (t = 2.81. p= .049).7. There was a positive correlation between family support and self-esteem for the institutionalized homeless and it was statistically significant (r= 443. p= .001).8. There was a positive correlation between family support and life- satisfaction for the homeless at institutionalized residents and it was statistically significant (r= 389, p= .001).9. There was a positive correlation between life-satisfaction andself-esteem for the homeless at institutionalized residents and it was statistically significant (r= .217, p= 02).10. There wasn't a correlation family support. self-esteem and life-satisfaction for the homeless at noninstitutionalized residents and it was statistically nonsignificant.