Local Support Groups Research Articles

Resilience in the Storm: Impacts of Changed Daily Lifestyles on Mental Health in Persons with Chronic Illnesses under the COVID-19 Pandemic.

Studies have shown individuals with chronic illnesses tend to experience poorer mental health compared to their counterparts without a chronic illness under the COVID-19 pandemic. The pervasive disruption on daily lifestyles due to social distancing could be a contributing factor. In this study, we collaborated with local patient support groups to explore the psychological adjustment among a group of community-dwelling individuals with chronic illnesses under the COVID-19 pandemic in Hong Kong. We collected responses from 408 adults with one or more chronic illnesses using an online survey. Results show that about one in four participants experienced moderate to high levels of depression (26.0%), anxiety (26.2%) and stress (20.1%) symptoms measured by the Depression, Anxiety and Stress Scale and the World Health Organisation-Five Well-Being Index. While 62.3% (gatherings) to 91.9% (contact with others) of participants reported changes in their daily lifestyles, these changes—both an increase and a decrease—were related to poorer mental health. The relationship was mediated by psychological resilience, measured by the Connor–Davidson Resilience Scale, with an estimate of indirect effect of −0.28 (95% confidence interval −0.44 to −0.10). In light of our findings, we urge social and healthcare professionals to support chronic illness patients to continue their daily lifestyles such as exercises and social contacts as much as possible by educating the public on feasible and practical preventive measures and enhance the psychological resilience of community-dwelling patients with scalable and efficacious psychological interventions.

Patients’ perspectives on factors affecting their involvement in decision-making on oral anticoagulant therapy for stroke prevention in non-valvular atrial fibrillation

Abstract Introduction Acknowledging patients’ preferences and addressing their concerns is thought to improve patients’ satisfaction with consultations, resulting in improved adherence and health benefits [1]. Adherence to oral anticoagulant (OA) therapy in non-valvular atrial fibrillation (NVAF) is crucial to prevent AF-related strokes. Previous research on anticoagulation in NVAF indicated that decision-making was dominated by prescribers, but patients offered several therapy options reported being involved [2]. Identifying the patient’s perspective on factors affecting their involvement could help to deliver more patient-centred care in the management of AF. Aim To explore patients’ perspectives and experiences concerning factors affecting their involvement in decision-making about OA therapy for stroke prevention in NVAF. Methods Semi-structured face-to-face interviews were conducted with patients in three health economies in the North of England between August 2018 and April 2019. An interview topic guide based on narrative review findings [2] was developed and refined by a Patient and Public Involvement (PPI) group to ensure clarity. Theoretical sampling was used to recruit adults (>18 years) diagnosed with NVAF, prescribed OA (vitamin K antagonist or direct oral anticoagulant (DOAC)), and able to give written consent. Up to 30 potential participants were approached by a member of their direct care team (nurse or pharmacist) in secondary and primary care anticoagulation or arrhythmia clinics. PPI members recruited patients from a local patient support group. Data collection continued until data saturation was achieved. Audio recorded interviews were transcribed verbatim and analysed using the Framework method. Results A total of 21 patient with median (IQR) age of 73 years (65–78 years) were interviewed. Eleven patients took DOACs. The median (IQR) time of taking OA was 3 years (4 weeks-7 years), warfarin 7 years (3–9 years) and DOAC 1 year (4 weeks-4 years). Interviews lasted between 15 and 48 minutes (average 27 minutes). Three themes were identified during analysis (Figure 1). Patients described therapy decisions being made by just the clinician, jointly with the clinician, and in few cases by the patient alone. The lack of involvement resulted from patients perceiving that there was only a choice between accepting and refusing the therapy, and clinician’s role was to make decisions. Limited consultation times, lack of continuous relationship with a clinician and knowledge about OAs options discouraged patients from being involved and some patients reported difficulties with the prescribed therapy. Patients that were involved considered safety of therapy options and impact on daily life. Conclusions Limited consultation time, patient’s perception of clinician’s role, quality of patient-clinician relationship, and patients’ awareness of therapy options were main factors influencing the level of patient involvement in the decision-making. Support from both organisation and clinicians (e.g., longer consultations, availability of different therapy options) is needed to facilitate greater patient involvement, which could prevent difficulties encountered by some patients. The main strength of this study was recruitment of participants from three health economies differing in anticoagulation service provision models, which enabled greater insight into potential barriers. However, the sample was lacking ethnic diversity and could have potential of recall bias.

\u201cI just need to be with my family\u201d: resettlement experiences of asylum seeker and refugee survivors of torture

A global migration of individuals fleeing persecution, violence and armed conflict reached almost 60 million world-wide in 2015. This world-wide crisis of displacement reflects people seeking safety across borders and oceans; dangerous journeys that compound the trauma endured by these women, men and children. Refugees/asylum seekers face barriers upon entry to the U.S. The Western New York Center for Survivors (WNYCST) provides care coordination/trauma-informed care to mitigate these challenges. The objective of this study was to explore the resettlement experiences of survivors of torture living in Western New York, who had received services from the WNYCST; identifying challenges, unmet needs, and services that were helpful. Secondarily, we describe the experiences of asylum seekers and legally resettled refugees, who due to their differing legal status, might be expected to have different experiences. Data were collected using semi-structured qualitative interviews.ResultsThree themes emerged: mental health challenges, relating to their experiences in their home country and their separation from family; unmet needs, including lack of a sense of purpose and meaning, difficulty navigating services, and missing connections to community; and coping strategies, including WNYCST assistance with connecting with sources of social support in their new community. WNYCST services were helpful, particularly the assistance and connection with care coordinators and local support groups. This care and outreach helped to mitigate feelings of separation and apartness from their home countries and families.ConclusionsSome refugees/asylum seekers continue to struggle with unmet needs, issues of loss and isolation. If care providers recognize signs of stress early, appropriate interventions can be implemented. Care connections and trauma informed treatment with an emphasis on recreating ties with communities, may be one important factor in ensuring successful integration.

Seven Brief Lessons on Magic 2019

Despite initial appearances, Tyson’s essay is not about “practical magick,” that is, the kind you might come across upon at a book-handler of esoterica, or perhaps at your local Thelemite support-group. It touches on the persistence of belief in occult phenomena well into our so-called “disenchanted” age, and does give hints as to why “magic” has not died down as of yet. But more basically, this is an intervention of philosophical theology, one aimed firstly at the academic culture of materialist reductionism. The upshot of this reductionism, for Tyson, is that “magical meanings and higher purposes are no longer part of practical reality or academic knowledge,” with the result being that we “have cut qualitative and spiritual wisdom off from knowledge and power” (p. ix). In response to this, Tyson offers a brief, albeit suggestive, proposal for an essentially Platonist metaphysics of “non-scientific truths” (p. vii).

'Triadic' shared decision making in mental health: Experiences and expectations of service users, caregivers and clinicians in Germany.

BackgroundShared decision making (SDM) in mental health may contribute to greater patient satisfaction and is sometimes associated with better health outcomes. Here, SDM should not only involve service users and clinicians but also involve the service users' caregivers.AimThis study aimed to achieve better insight into the current SDM patterns of triads of service users, caregivers and clinicians in inpatient mental health care and the three parties' expectations towards the prospects of triadic SDM.DesignThe current research uses data from a representative cross‐sectional study on caregivers in psychiatric inpatient treatment. We analysed data on n = 94 triads of service users, their caregivers and their clinicians.ResultsAll three parties acknowledge caregivers to be of great support to monitor the progress with mental disease. The caregiver's role during consultations is most often described as being an expert, receiving or providing information and supporting service users. However, caregivers at times try to seek support for themselves during caregiver‐clinician interaction, or their behaviour was described as unhelpful. The potential prospects of caregiver involvement are clearly acknowledged despite the low implementation of caregiver involvement in this sample (only in one‐third of the cases).ConclusionTriadic SDM rarely takes place in routine inpatient care. First, there should be a focus on interventions aiming at inviting caregivers to consultations. Only in the second step should a better conceptualisation of triadic SDM be undertaken.Public ContributionEarly results were discussed with a local peer support group for caregivers of individuals living with mental illness.

Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic.

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times. Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England. Semi-structured interviews explored the experiences of people with YOD and LOD and family carers on their access to both health and social care services and community-based services. Transcripts were coded by two researchers and analysed using thematic analysis. Fifteen interviews were conducted with seven people with YOD or LOD and 14 family carers between January and March 2020. Some interviews were conducted only with the person with dementia, because they did not have a family carer, and others were conducted only with the family carer, because the person with dementia was in the severe stages of the condition. Results: Four themes emerged from the interviews: (1) Getting the ball rolling: the process of diagnosis; (2) Balancing the support needs of people with dementia and carers; (3) Barriers to accessing support; and (4) Facilitators to accessing support. Inequities existed for both YOD and LOD, with emerging evidence of unequal experiences in accessing care at the beginning of the COVID-19 pandemic. Discussion: People with YOD and LOD and their carers require better support in accessing services after a diagnosis. Greater understanding of the pathways through which inequalities materialise are needed, especially those that might have been disrupted or exacerbated by the COVID-19 pandemic.

Recommendations for improving follow-up care for patients with mesothelioma: a qualitative study comprising documentary analysis, interviews and consultation meetings

ObjectivesThe study aim was to explore experiences of patients with pleural mesothelioma of follow-up care in three National Health Service (NHS) Trusts to develop recommendations for practice.DesignThe study design was...

Exploring the perspectives of people post-stroke, carers and healthcare professionals to inform the development of an intervention to improve cognitive impairment post-stroke

Background: Stroke is a leading cause of death and disability worldwide. Cognitive impairment is common post-stroke and can result in negative sequalae such as a lower quality of life, increased carer burden and increased healthcare costs. Despite the prevalence and associated burden of post-stroke cognitive impairment, there is uncertainty regarding the optimum intervention to improve cognitive function post-stroke. By exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment, this qualitative study aims to inform the design and development of an intervention to rehabilitate cognitive impairment post-stroke. Methods: A qualitative descriptive approach will be applied, using semi-structured interviews with people post-stroke, carers and healthcare professionals. People post-stroke will be recruited via gatekeepers from a local stroke support group and Headway, a brain injury support service. Carers will be recruited via a gatekeeper from a local carers branch. Healthcare professionals will be recruited via gatekeepers from relevant neurological sites and via Twitter. The final number of participants recruited will be guided by information power. Data will be collectively analysed and synthesised using thematic analysis. The Consolidated Criteria for Reporting Qualitative Studies (COREQ) guidelines will be used to standardize the conduct and reporting of the research. Conclusions: It is anticipated that exploring the perspectives of people post-stroke, carers and healthcare professionals on cognitive impairment post-stroke will inform the development of an evidence-based optimal intervention to rehabilitate cognitive deficits post-stroke. This study was granted ethical approval from the Faculty of Education and Health Sciences Research Ethics Committee at the University of Limerick. Study findings will be disseminated locally through presentations at stroke support groups, as well as internationally through academic conferences and peer-reviewed journals.

Testing and validation of the CIC‐cgQ and CIC‐childQ in paediatric patients and their caregivers

AbstractAre the clean intermittent catheterization (CIC)‐cgQ and the CIC‐childQ feasible and generate valid measures of success performing CIC? CIC is the primary treatment for neurogenic bladder. However, instituting CIC with children can be challenging. Currently there are no validated instruments to measure the abilities of paediatric patients and their caregivers to perform CIC. The purpose of this study was to evaluate the validity and reliability of a modified version of the Intermittent Self Catheterization Questionnaire (ISC‐Q) in children with neurogenic bladder and their caregivers performing CIC. Children with spinal dysraphism, such as myelomeningocele (MMC) may face urologic challenges related to neurogenic bladder including renal compromise, recurrent urinary tract infections, and urinary incontinence due to bladder deterioration. CIC is an important intervention in the management of patients with neurogenic bladder. There are no valid tools currently available to measure the success of CIC in paediatric patients or their caregivers. A non‐experimental, psychometric research design was employed for this pilot study. Data collection was performed using online and paper surveys. The ISC‐Q was modified into two versions for use in the United States, one for caregivers of children on CIC (CIC‐cgQ) and one for paediatric patients on CIC (CIC‐childQ). A convenience sample of subjects was recruited from Spinal Differences Clinic and the local spina bifida support group. Informed consent was embedded in the invitation letter/email with survey completion indicating consent to participate. Criterion related validity was described using known group sum scores along with Cronbach's α for internal reliability. The tools were pilot tested on 15 caregivers and four children. Cronbach's alphas were .84 and .83 for the caregivers and children, respectively. Subjects identified a priori as successful with CIC scored higher than those identified as unsuccessful. The CIC‐cgQ and the CIC‐childQ are valid and reliable measures of the impact of CIC on the lives of caregivers and children. Future studies with larger sample sizes will allow further psychometric testing. This instrument gives researchers the ability to measure the impact of CIC on the lives of children and caregivers.

THE IMPORTANCE OF THE INITIAL POSTPARTUM/ POSTNATAL HOUR AND SKIN-TO-SKIN CONTACT – A TIME FOR CHANGE IN BULGARIA.

INTRODUCTION: This paper explores the practices surrounding skin-to-skin contact of mother and child immediately after birth within Bulgarian maternity wards and describes women`s experiences. It takes into consideration the research of Bulgarian experts in breastfeeding and contemporary recommendations for postnatal care worldwide. Obstetric practices in local maternity wards are reviewed and evidenced by the research findings. The results put into perspective the different experiences that Bulgarian mothers have in local wards, and the authors explore these women`s attitudes towards the routine implementation of skin-to-skin contact in postnatal care. The paper also outlines setbacks for introducing the practice in Bulgarian maternity wards due to the lack of midwife-led care and the importance of specialized care in optimizing health and a better understanding of skin-to-skin care. OBJECTIVES: Purposes of this research are: (1) to explore women’s knowledge about skin-to-skin benefits, including their past experiences with the practice, and (2) to assess their own personal motivation and willingness to engage in the practice themselves. METHODS: The methodology applied includes an online-based anonymous survey that aims to explore parents’ current levels of knowledge and gather their viewpoints regarding the practice. The research has been conducted on social media channels between the 26th of January 2020 and the 26th of February 2020 and includes women from varying local parent support groups: both respondents from a focus group, the area of Ruse, Bulgaria, and respondents from other major Bulgarian cities. The research findings are illustrated herein, and the authors discuss attitudes, as evidenced by the respondents’ opinions, expressed through the survey. RESULTS: A total of 771 cases are included, which come from both groups. The research demonstrates common practices in local hospital wards are inconsistent with WHO recommendations and evidence-based medicine. Skin-to-skin care is practically a non-existent practice within immediate postnatal care, with most mothers separated from their baby during this crucial first hour(s). Almost all the women surveyed are willing to engage in, and embrace, skin-to-skin practices to be introduced as part of the routine within local maternity wards. CONCLUSION: Midwives’ numbers in hospitals are dwindling, and women identify this is a worrying trend for the success of skin-to-skin bonding for new mothers. Evidence-based medical research and parental opinion compel us to rethink current postnatal practices, and therefore it is logical to suggest sustainable and realistic strategies for promoting and implementation of effective guidelines.

What families in the UK use to manage attention-deficit/hyperactivity disorder (ADHD): a survey of resource use

ObjectiveTo identify interventions being used to manage attention-deficit/hyperactivity disorder (ADHD) in the UK.DesignA survey within the Sheffield Treatments for ADHD Research project. A convenience sample of participants in the UK...

Passive suicidal ideation in older adults from 12 European countries

Abstract Background Highest rates of suicide in older adults are a major public health hazard in many industrialized societies. The current study aims to provide an overview of demographic, psycho-social, and health-related risks for suicidal ideation among European older adults. Methods Study builds on secondary data analysis using data drawn from the Survey of Health, Aging and Retirement in Europe (SHARE) wave 7.0. A total sample of 33,719 older adults, aged 65+, were analyzed. Risk factors included socio-demographic variables, psychological distress, and health conditions. Descriptive statistics and ANOVA were used to provide information about prevalence and demographic correlates of passive suicidal ideation. Standardized significant path coefficients were examined between predicting variables and suicidal ideation. Results Suicide ideation was at its highest level among older adults from France, Poland, Spain, Germany, Italy, and Belgium. Highest rates of suicidal ideation were found among widowed, but also married couples, aged between 65 and 70, and older adults living in rural area. Results also reinforced that elderly's suicidal ideation was universally associated with poor health, limited access to activities, a lack of social contact, and worse subjective well-being. The path from depression to suicidal ideation was significant with a larger magnitude. Conclusions Passive suicidal ideation is a critical mental health index. In order to diminish the likelihood of suicide thoughts and acts in older adults, national policy should integrate psychological services in elderly care to help older adults better cope with depressive symptoms and long-term health problems. Local government should foster local support groups for elderly and promote suicide prevention-intervention program for those elderly seeking help.

Systematic Literature Review of Urban Poor Livelihoods in Malaysia

This paper aims to conduct a Systematic Literature Review (SLR) to examine the urban poor livelihood analysis through the lens of Sustainable Livelihood Approach (SLA) in Malaysia. SLA is a widely adopted framework for examining rural livelihoods globally and nationally, however, there are limited studies that have adopted the SLA to examine urban poor household livelihoods. Hence, this paper aims to fill a gap of knowledge on analysing sustainability of urban poor livelihoods in Malaysia. Adopting Transparent Reporting of Systematic Reviews and Meta-Analyses method known as PRISMA, the results of SLR revealed significant urban livelihood themes are financial, human, social and physical capitals. These findings help policymakers and local support groups in improving the current policies and to enhance the quality of life of the urban poor. Keywords: urban poor livelihoods, Malaysia, systematic literature review, Sustainable Livelihood Approach. eISSN: 2398-4287© 2020. The Authors. Published for AMER ABRA cE-Bs by e-International Publishing House, Ltd., UK. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Peer-review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers), ABRA (Association of Behavioural Researchers on Asians) and cE-Bs (Centre for Environment-Behaviour Studies), Faculty of Architecture, Planning & Surveying, Universiti Teknologi MARA, Malaysia. DOI: https://doi.org/10.21834/ebpj.v5i14.2273

Parkinson’s Disease Treatments: Treating Symptoms Through Group Power Movements Or Passive Forced Cycling

INTRODUCTION: Parkinson’s Disease (PD) is a neurodegenerative disease that affects motor and non-motor function due to a loss of dopamine. There are exercise interventions that have been shown to improve PD symptoms, such as passive forced cycling and group fitness classes. Passive forced cycling is a useful, non-invasive treatment for PD, and has been shown to produce similar effects to common PD medications including improvement in motor function, gait, and quality of life. The Group Fitness-Only (GFO) class is based on large body movements in order to slow the progression of PD symptoms. The purpose of this study was to determine if Forced Cycling paired with a group fitness class or the group fitness class alone was better in the symptomatic treatment of PD. METHODS: A total of ten participants diagnosed with stage two or three PD were recruited through a local support group and a medical facility. Each participant was randomly assigned to either GFO or group fitness class paired with Forced Cycling (PFC) exercise groups. Regardless of the group, the participants were asked to attend four 60-minute exercise sessions per week for four weeks. Pre and post data were collected using the MiniBESTest and PROMIS-29 survey. RESULTS: The GFO group improved their Timed Up and Go test (Pretest: 6.51±0.80, Posttest: 5.87±1.03, p = 0.041). The time taken to perform the TUG also improved more for the GFO group when compared to the PFC group’s posttest data (Pretest: 5.87±1.03, Posttest: 8.59±1.74, p = 0.032). Dynamic gait sub-score improved posttest in the PFC group compared to the GFO group (Pretest: 7.8±0.8, Posttest: 9.0±0.0, p = 0.033). Other variables showed improvement but were not statistically significant. CONCLUSION: This pilot study suggests that strength-based group fitness classes are a part of an effective intervention for managing PD symptoms and could be a possible supplemental treatment option for these individuals. In this study, forced cycling showed improvements in managing symptoms of PD, however, only one variable was statistically significant. Future studies with longer interventions and larger sample sizes may yield more significant improvements than this study.

A Community College approach to the Collegiate Recovery Movement

The history of collegiate recovery programs in the United States attempts to connect two competing yet related activities. The First Movement is a treatment renewal movement whose goals are to reconnect treatment to the process of long-term recovery and rebuild relationships between treatment organizations, local communities and local recovery support groups. The Second Movement, the recovery advocacy movement, rose in reaction to the re-stigmatization, de-medicalization and re-criminalization of alcohol and other drug (AOD) problems in the 1980s and 1990s. The goals of this second movement included reaffirming the reality of long-term addiction recovery, by celebrating the legitimacy of multiple pathways of recovery, enhancing the variety, availability and quality of local/ regional treatment and recovery support services, and transforming existing human services into recovery-oriented systems of care. The goal of the above approaches is to integrate a comprehensive social support network both on campus and in the community geared toward: (1) the elimination of stress on college campuses; (2) being attentive regarding environmental factors such as, stigma and discrimination; and (3) increasing employment opportunities (workforce Initiatives).

A web-based survey of reproductive awareness and choices in women with endometriosis

ObjectiveOur aim was to study fertility issues, attitudes towards reproductive techniques and fertility preservation options in women of reproductive age with endometriosis. Study designIn 2018 we conducted a web-based survey on fertility issues in women aged 18–40 years with endometriosis. Participants were recruited via advertisements on social media and local endometriosis support groups. Participants completed a self-developed online questionnaire evaluating the following dimensions: sociodemographic, medical data, parental project, knowledge and attitudes toward endometriosis and fertility, means used to access information, and reproductive choices. ResultsThe majority of women (96 %) worried about the impact of endometriosis on their fertility. Approximately half of them (52 %) reported having received sufficient information concerning the effect of endometriosis on fertility from their doctor, whereas 31 % had discussed fertility issues with their doctor but desired further information. In contrast, only a minority (27 %) of women considered themselves well-informed on fertility preservation options. Information given by specialists on endometriosis and reproduction was considered most useful. Information mediated through patient support groups was also highly rated, whereas information given by the general gynecologist was less highly rated. The majority of women would consider assisted reproductive techniques (74 %) or adoption (70 %) in case of infertility. Interestingly, 72 % of women would undergo oocyte vitrification for fertility preservation, whereas only 37 % would resort to oocyte donation. ConclusionThis is the first survey to address the topic of fertility issues from the patient’s perspective in women with endometriosis. The vast majority of women attach great importance to a discussion about fertility possibilities and only a minority of women consider themselves well-informed. Our results highlight the importance of addressing the issue of fertility in women with endometriosis. Special attention should be given to information and counselling about fertility preservation options since most women consider their knowledge on the topic insufficient. Knowledge and attitudes to counsel endometriosis patients on fertility issues and fertility preservation options should be included in the training curricula of gynecologists. Adequate information on reproductive aging, risk factors for infertility, and reproductive choices, including oocyte vitrification, should be incorporated into follow-up visits for endometriosis patients.

An Examination of the Lived Experience of Attending Twelve-Step Groups for Co-dependency

This research project aimed at obtaining an in-depth analysis of the experiences of self-identified co-dependents, who chose twelve-steps groups as a way for dealing with difficulties identified as co-dependency. Interpretative phenomenological analysis (IPA) was used as the methodology for the research. Eight participants volunteered from local support groups for co-dependency in the UK. Data were collected through 3 in-depth interviews with each participant over a period of 3–6 months. A visual method was used to gain a more in-depth phenomenological perspective. It included photographs, drawings and images chosen by the participants to describe their experiences. The analysis revealed 2 contradicting and complementary themes: (1) representations of the twelve-step group as a helpful tool and (2) representations of the twelve-step group as no longer meaningful. It demonstrated that the participants found their groups useful as an initial pathway for recovery; however, it did not feature as a central aspect in their recovery, as different levels of engagement were described. The results of this study provide a base for developing a more empathic and contextualised understanding of the experience of individuals who attend twelve-step groups for co-dependency, which in turn will enable health professionals to offer support which is relevant to these individuals’ experiences.

‘Sometimes you just need someone to guide you through the maze’ – Improving cardiac care services in the North of England: suggestions from a patient-led project

Cardiomyopathy is a disease of the heart muscle, thought to affect around 160 000 people in the UK. It is often inherited and can be life-changing, with symptoms including tiredness, breathlessness and palpitations. The role of the patient in NHS care is no longer that of a passive recipient of care. There is an expectation that patients will be engaged in their own health, care and treatment. Initiatives exist where patients are encouraged to become involved in the design, planning and delivery of services. A patient-led service improvement project was designed and carried out by members of a local Cardiomyopathy UK support group, in order to capture the experiences of people affected by cardiomyopathy as they journeyed through the healthcare system in the North of England. This has enabled an evaluation of service provision, highlighting examples of good practice and areas for improvement. A total of 21 people, both patients and family members, shared their story through in-depth interviews. The overall picture that emerged was of a group of people deeply affected by a diagnosis of cardiomyopathy, who had experienced both positive and negative aspects of a healthcare system that does not appear to fully understand cardiomyopathy or the impact the condition has on the lives of patients and carers. The project highlighted a need for information and support at key times on a patient's journey through cardiomyopathy—at diagnosis, on discharge from hospital, when dealing with a device, when issues around family screening arise, or when the condition changes in some way. Many respondents had experienced a lack of information and support at these key times and communication between patients and health professionals was sometimes inadequate.

Identity and perceptions of quality of life in Alzheimer's disease

BackgroundWith life expectancy on the rise and the baby boomer generation growing older, Alzheimer's disease (AD) will affect more individuals and families than ever before. Therefore, it is imperative that healthcare providers identify the objective and perceived factors which positively and negatively affect the experience of progressing through AD. AimThe goal of this exploratory qualitative research is to begin to develop an in-depth description of the perceptions related to life satisfaction in early-to mid-AD from the patient and caregiver perspectives. MethodsA convenience sample of four community-dwelling AD patients and caregivers were recruited from a local Alzheimer's Association support group. Semi-structured interviews were conducted together with participants and caregivers. ResultsThe major findings of this study uncovered a process by which 1) changes in activity occur in response to the diagnosis 2) dyads discover new ways in which to mutually adapt and cope and 3) the person with dementia remains meaningfully engaged in their lives with a generally positive perception of quality of life (QoL). ConclusionsThese preliminary findings are a promising line of research and have implications for Alzheimer's patients, their families, and person-centered care. By accounting for individual levels of baseline engagement and taking each patient's perspective into account, nurses have the ability to identify individual changes over time and positively impact the patient's QoL. Further studies with larger and more diverse samples are needed to expand upon this preliminary framework.

Implementation and dissemination of an African American popular opinion model to improve lupus awareness: an academic-community partnership.

Lupus is a chronic, autoimmune disease that disproportionately affects African Americans. We adapted the Centers for Disease Control and Prevention's Popular Opinion Leader model to implement an intervention tailored for African American individuals that leverages an academic-community partnership and community-based social networks to disseminate culturally appropriate lupus education. Academic rheumatologists, social scientists, and researchers in Boston, MA and Chicago, IL partnered with local lupus support groups, community organizations, and churches in neighborhoods with higher proportions of African Americans to develop curriculum and recruit community leaders with and without lupus (Popular Opinion Leaders; POLs). POLs attended four training sessions focused on lupus education, strategies to educate others, and a review of research methods. POLs disseminated information through their social networks and recorded their impact, which was mapped using a geographic information system framework. We trained 18 POLs in greater Boston and 19 in greater Chicago: 97% were African American, 97% were female; and the mean age was 57 years. Fifty-nine percent of Boston POLs and 68% of Chicago POLs had lupus. POLs at both sites engaged members of their social networks and communities in conversations about lupus, health disparities, and the importance of care. Boston POLs documented 97 encounters with 547 community members reached. Chicago POLs documented 124 encounters with 4083 community members reached. An adapted, community-based POL model can be used to disseminate lupus education and increase awareness in African American communities. Further research is needed to determine the degree to which this may begin to reduce disparities in access to care and outcomes.