A snapshot of the lives of women with polycystic ovary syndrome:a photovoice investigation

Polycystic ovary syndrome affects 6  percent of women. Symptoms include hirsutism, acne, and infertility. This research explores the impact of polycystic ovary syndrome on women's lives using photovoice. Nine participants photographed objects related to their quality of life and made diary entries explaining each photograph. Three themes emerged from thematic analysis of the diaries: control (of symptoms and polycystic ovary syndrome controlling their lives), perception (of self, others, and their situation), and support (from relationships, health care systems, and education). These findings illuminate positive aspects of living with polycystic ovary syndrome and the role pets and social networking sites play in providing support for women with polycystic ovary syndrome.

Older adults with AMD as co-designers of an assistive mobile application

In the UK, 20% of people aged 75 years and over are living with sight loss and age-related macular degeneration (AMD) is the most common cause of sight loss in the UK, impacting nearly 10% of those over 80; regrettably, these fgures are expected to increase in coming decades as the population ages (RNIB, 2012). This paper reports on the authors' design activities conducted for the purpose of informing the development of an assistive self-monitoring, ability-reactive technology (SMART) for older adults with AMD. The authors refect on their experience of adopting and adapting the PICTIVE (Plastic Interface for Collaborative Technology Initiatives through Video Exploration) participatory design approach (Muller, 1992) to support effective design with and for their special needs user group, refect on participants' views of being part of the process, and discuss the design themes identifed via their PD activities.

Understanding the IT-related attitudes and needs of persons with age-related macular degeneration:a case study

In the UK, 20 per cent of people aged 75 years and over are living with sight loss; this percentage is expected to increase as the population ages (RNIB, 2011). Age-Related Macular Degeneration (AMD) is the UK’s leading cause of severe visual impairment amongst the elderly. It accounts for 16,000 blind/partial sight registrations per year and is the leading cause of blindness among people aged 55 years and older in western countries (Bressler, 2004). Our ultimate goal is to develop an assistive mobile application to support accurate and convenient diet data collection on which basis to then provide customised dietary advice and recommendations in order to help support individuals with AMD to mitigate their ongoing risk and retard the progression of the disease. In this paper, we focus on our knowledge elicitation activities conducted to help us achieve a deep and relevant understanding of our target user group. We report on qualitative findings from focus groups and observational studies with persons with AMD and interviews with domain experts which enable us to fully appreciate the impact that technology may have on our intended users as well as to inform the design and structure of our proposed mobile assistive application.

Learning to live with Parkinson’s disease in the family unit:an interpretative phenomenological analysis of well-being

We investigated family members’ lived experience of Parkinson’s disease (PD) aiming to investigate opportunities for well-being. A lifeworld-led approach to healthcare was adopted. Interpretative phenomenological analysis was used to explore in-depth interviews with people living with PD and their partners. The analysis generated four themes: It’s more than just an illness revealed the existential challenge of diagnosis; Like a bird with a broken wing emphasizing the need to adapt to increasing immobility through embodied agency; Being together with PD exploring the kinship within couples and belonging experienced through support groups; and Carpe diem! illuminated the significance of time and fractured future orientation created by diagnosis. Findings were interpreted using an existential-phenomenological theory of well-being. We highlighted how partners shared the impact of PD in their own ontological challenges. Further research with different types of families and in different situations is required to identify services required to facilitate the process of learning to live with PD. Care and support for the family unit needs to provide emotional support to manage threats to identity and agency alongside problem-solving for bodily changes. Adopting a lifeworld-led healthcare approach would increase opportunities for well-being within the PD illness journey.

Working adult students' perspectives on persisting in college

The purpose of this study was to describe and explain working adult undergraduate students' perspectives on persistence in college in order to address the applicability of retention theory to a specific group of college students. Retention of college students is a major concern in higher education where persistence rates have continued to decline for the last 16 years and changing student demographics have influenced enrollment patterns. ^ A qualitative research design was used. Data were collected through in-depth semi-structured interviews with nine working adult undergraduate students. The participants were selected to include diversity in age, race/ethnicity, family roles, career/work levels, college majors, and educational histories. ^ Triangulation was performed on data from the interviews, participant data forms, and a research journal. Open and axial coding were used to generate emerging themes. Member checking was used to verify the interpretation of the participants' perspectives. A peer reviewer corroborated the data analysis. Three major themes emerged from the data which explained how the students stayed motivated, engaged in learning, and managed the institutional aspects of college. ^ Five conclusions were drawn from the findings of this study. First, working adult students described their core experience of college as both positive and negative, creating tensions and often conflicts that influenced their persistence. Second, persistence factors associated with working adult students included personal aspects, such as having clear career/life goals, self management skills, and supportive relationships; learning aspects, such as interactive teaching methods, connections to prior learning, and relevance to career/life goals; and institutional aspects, such as customer service orientation of staff, flexibility of policies and procedures, and convenient access to information. Third, current retention theory was applicable to working adult students. However, working adult students described their experience of academic and social integration differently from that of traditional college students found in the literature. Fourth, findings from this study supported the developmental components of the Adult Persistence in Learning model (MacKinnon-Slaney, 1994). Finally, the study findings indicated a clearly active role required of the institution in the persistence of working adult students by providing flexibility and accessibility in procedures and services. ^

The effects of American Sign Language on general self-efficacy and anxiety among mothers in a residential rehabilitation facility for drug addiction and substance abuse

Globally, approximately 208 million people aged 15 and older used illicit drugs at least once in the last 12 months; 2 billion consumed alcohol and tobacco consumption affected 25% (World Drug Report, 2008). In the United States, 20.1 million (8.0%) people aged 12 and older were illicit drug users, 129 million (51.6%) abused alcohol and 70.9 million (28.4%) used tobacco (SAMHSA/OAS, 2008).Usually considered a problem specific to men (Lynch, 2002), 5.2% of pregnant women aged 15 to 44 are also illicit drug and substance abusers (SAMHSA/OAS, 2007). During pregnancy, illicit drugs and substance abuse (ID/SA) can significantly affect a woman and her infant contributing to developmental and communication delays for the infant and influencing parenting abilities (Budden, 1996; March of Dimes, 2006b; Rossetti, 2000). Feelings of guilt and shame and stressful experiences influence approaches to parenting (Ashley, Marsden, & Brady, 2003; Brazelton, & Greenspan, 2000; Ehrmin, 2000; Johnson, & Rosen, 1990; Kelley, 1998; Rossetti, 2000; Velez et al., 2004; Zickler, 1999). Parenthood is an expanded role that can be a trying time for those lacking a sense of self-efficacy and creates a high vulnerability to stress (Bandura, 1994). Residential treatment programs for ID/SA mothers and their children provide an excellent opportunity for effective interventions (Finkelstein, 1994; Social Care Institute for Excellence, 2005). This experimental study evaluated whether teaching American Sign Language (ASL) to mothers living with their infants/children at an ID/SA residential treatment program increased the mothers’ self-efficacy and decreased their anxiety. Quantitative data were collected using the General Self-Efficacy Scale and the State-Trait Anxiety Inventory showing there was both a significant increase in self efficacy and decrease in anxiety for the mothers. This research adds to the knowledge base concerning ID/SA mothers’ caring for their infants/children. By providing a simple low cost program, easily incorporated into existing rehabilitation curricula, the study helps educators and healthcare providers better understand the needs of the ID/SA mothers. This study supports Bandura’s theory that parents who are secure in their efficacy can navigate through the various phases of their child’s development and are less vulnerable to stress (Bandura, 1994).

Qualidade de vida de pessoas com estomias intestinais

Ostomy is an open surgical origin, when it is necessary to deviate temporarily or permanently, the normal transit of food and / or deletions. The patient with ostomy disposal is faced with changes in their physiology, also emerging on the need to care collection bag. This study aimed to analyze the quality of life (QOL) of people living with ostomy Intestinal (EI), who attended the Pediatric and Adult Rehabilitation Center of Rio Grande do Norte (CRI / CRA-RN). It is an analytical study with cross-sectional design and quantitative approach, accomplished with 89 people who had EI. The study was approved by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), CAAE: 19866413.3.0000.5537. Held data collection in the period January-March 2015 using two instruments: an adapted general questionnaire covering socio-demographic, clinical and self-care and a specific instrument for assessing QOL of people with stoma titled as City of Hope Quality of Life - Ostomy Questionnaire (COH-QOL-Q), validated and adapted to Portuguese in 2010, composed of four areas, namely: Welfare Body (BEF), Welfare Psychological (BEP), Welfare (BES ) and Spiritual Well-Being (BEE). The collected data were entered into a database in Microsoft Excel 2007 spreadsheet application and processed in computerized software for descriptive and inferential analysis. The results showed that 83.1% had a colostomy and ileostomy 16.9%. Sociodemographic characteristics prevailed in males (57.3%), over 50 (57.3%), mulatto (46.1%), with presence of companion / a (57.3%), retired / beneficiaries (50.5%), monthly income above the minimum wage (68.5%) and who have studied up to elementary school (67.4%). Regarding clinical aspects, it was observed that the main cause that led to the making of the stoma was the neoplasm (59.6%) followed by trauma (21.3%). The sample showed people with stoma for more than six months (79.8%) of permanently (57.3%), in use sink equipment piece drainable (68.5%) of flat base (82.0%). With respect to self-care, 93.3% emptied and washed the bag alone (care related to hygiene) and 75.3% fixed the new exchange on the skin during the exchange (care related to the stock). Patients with more than six months of ostomy and had no partner (a) had higher averages of self-care related hygiene and purse. The average of respondents QoL scores was 68.90% for General QOL; 68.03% for the BEF; 68.38% for the BEP; 66.46% for BES and 75.41% for BEE. Among the aspects that influenced QOL included: physical strength, pain, suffering and gases (physical domain); appearance, care of the stoma and adaptation to new condition (psychological domain); isolation, interference in personal relationships and social activities (social domain) and going to church or synagogue, spiritual activities and positive change after ostomy (spiritual realm). Based on these results, it is concluded that this was a predominantly adult sample / elderly (between 50 and 70 years), with low education and the cause motivating the stoma, neoplasms. However, such findings did not pass at low percentage levels on the self-care capacity to deliver even at low QOL scores.

Qualidade de vida de pessoas com estomias intestinais

Ostomy is an open surgical origin, when it is necessary to deviate temporarily or permanently, the normal transit of food and / or deletions. The patient with ostomy disposal is faced with changes in their physiology, also emerging on the need to care collection bag. This study aimed to analyze the quality of life (QOL) of people living with ostomy Intestinal (EI), who attended the Pediatric and Adult Rehabilitation Center of Rio Grande do Norte (CRI / CRA-RN). It is an analytical study with cross-sectional design and quantitative approach, accomplished with 89 people who had EI. The study was approved by the Ethics Committee of the Federal University of Rio Grande do Norte (CEP / UFRN), CAAE: 19866413.3.0000.5537. Held data collection in the period January-March 2015 using two instruments: an adapted general questionnaire covering socio-demographic, clinical and self-care and a specific instrument for assessing QOL of people with stoma titled as City of Hope Quality of Life - Ostomy Questionnaire (COH-QOL-Q), validated and adapted to Portuguese in 2010, composed of four areas, namely: Welfare Body (BEF), Welfare Psychological (BEP), Welfare (BES ) and Spiritual Well-Being (BEE). The collected data were entered into a database in Microsoft Excel 2007 spreadsheet application and processed in computerized software for descriptive and inferential analysis. The results showed that 83.1% had a colostomy and ileostomy 16.9%. Sociodemographic characteristics prevailed in males (57.3%), over 50 (57.3%), mulatto (46.1%), with presence of companion / a (57.3%), retired / beneficiaries (50.5%), monthly income above the minimum wage (68.5%) and who have studied up to elementary school (67.4%). Regarding clinical aspects, it was observed that the main cause that led to the making of the stoma was the neoplasm (59.6%) followed by trauma (21.3%). The sample showed people with stoma for more than six months (79.8%) of permanently (57.3%), in use sink equipment piece drainable (68.5%) of flat base (82.0%). With respect to self-care, 93.3% emptied and washed the bag alone (care related to hygiene) and 75.3% fixed the new exchange on the skin during the exchange (care related to the stock). Patients with more than six months of ostomy and had no partner (a) had higher averages of self-care related hygiene and purse. The average of respondents QoL scores was 68.90% for General QOL; 68.03% for the BEF; 68.38% for the BEP; 66.46% for BES and 75.41% for BEE. Among the aspects that influenced QOL included: physical strength, pain, suffering and gases (physical domain); appearance, care of the stoma and adaptation to new condition (psychological domain); isolation, interference in personal relationships and social activities (social domain) and going to church or synagogue, spiritual activities and positive change after ostomy (spiritual realm). Based on these results, it is concluded that this was a predominantly adult sample / elderly (between 50 and 70 years), with low education and the cause motivating the stoma, neoplasms. However, such findings did not pass at low percentage levels on the self-care capacity to deliver even at low QOL scores.

Experiences of Internalized and Enacted Stigma among Women with Obstetric Fistula in Tanzania

Background: Obstetric fistula is the development of a necrosis between the bladder and the vagina and/or the bladder and the rectum as a result of prolonged obstructed labor, resulting in urinary or fecal incontinence. In Tanzania surgical repair for obstetric fistula is provided freely by the government but it is estimated that there are over 25,000 women living with an untreated fistula. These women experience high degrees of psycho-social stresses exacerbated by the stigma surrounding their condition. There is a dire need to explore stigma within this population in order to better understand its impact, as stigma affects both treatment seeking behavior as well as long term recovery of those who access surgical repair.

Study Aims: This study aims to understand the experiences of stigma among women with obstetric fistulas by examining both internalized and enacted stigma, and by identifying pertinent correlates of internalized stigma.

Methods: This mixed-methods study utilized both quantitative and qualitative data collected in two related studies at a single hospital in Moshi, Tanzania. All study participants were women receiving surgical repair for an obstetric fistula. In the quantitative portion, cross-sectional survey data were collected from 52 patients. The primary outcome was fistula-related stigma, measured using an adaptation of the HASI-P stigma scale, which included constructs of both internalized and enacted stigma. In the qualitative portion, 45 patients participated in a semi-structured in-depth interview, which explored topics such as stressors caused by the fistula, coping mechanisms, and available support. The transcripts were analyzed using analytic memos and an iterative process of thematic coding using the framework of content analysis.

Results: Expressions of internalized stigma were common in the sample, with a median score of 2.1 on a scale of 0 – 3. Internalized was significantly correlated with negative religious coping, social participation, impact of incontinence and enacted stigma. Qualitative analysis was consistent and demonstrated widespread themes of shame and embarrassment. Experiences of enacted stigma were not as common (median score of 0), although some items, like those pertaining to mockery and blame, were endorsed by up to 25% of the study sample. Themes of anticipated stigma (isolation and non-disclosure due to the possibility of stigmatization) were also evident in the qualitative sample and may explain the low enacted stigma scores observed.

Conclusion: In this sample of women receiving surgical repair for an obstetric fistula, stigma was evident, with internalized stigma resulting in psychological impacts for patients. Experiences of both anticipated and enacted stigma were also observed. There is a need to explore interventions that would decrease stigma while also increasing support for these women, as stigma may be a barrier towards accessing surgical repair and reintegration following surgery.

Keywords: Tanzania, obstetric fistula, stigma, maternal health

The Impact of Marijuana Use on Memory in Patients with HIV/AIDS

The most robust neurocognitive effect of marijuana use is memory impairment. Memory deficits are also high among persons living with HIV/AIDS, and marijuana use among this population is disproportionately common. Yet research examining neurocognitive outcomes resulting from co-occurring marijuana and HIV is virtually non-existent. The primary aim of this case-controlled study was to identify patterns of neurocognitive impairment among HIV patients who used marijuana compared to HIV patients who did not use drugs by comparing the groups on domain T-scores. Participants included 32 current marijuana users and 37 non-drug users. A comprehensive battery assessed substance use and neurocognitive functioning. Among the full sample, marijuana users performed significantly worse on verbal memory tasks compared to non-drug users and significantly better on attention/working memory tasks. A secondary aim of this study was to test whether the effect of marijuana use on memory was moderated by HIV disease progression, but these models were not significant. This study also examined whether the effect of marijuana use was differentially affected by marijuana use characteristics, finding that earlier age of initiation was associated with worse memory performance. These findings have important clinical implications, particularly given increased legalization of this drug to manage HIV infection.

The geographies of encounter: investigating the spatiality and construction of 'meaningful' encounters with difference through the experiences of international students at University College Cork, Ireland

The purpose of this research is to investigate how international students negotiate encounters with Irish students and construct ‘meaning’ from those encounters in the spaces of the university and city. As cities are increasingly characterised by a multiplexity of diversity, the issue of living with difference is becoming more and more pertinent. In the wake of escalating socio-spatial polarisation, inter-cultural tension, racism, and xenophobia, the geographies of encounter seek to untangle the interactions that occur in the quotidian activities and spaces of everyday life to determine whether such encounters might reduce prejudice, antipathy and indifference and establish common social bonds (Amin 2002; Valentine 2008). Thus far, the literature has investigated a number of sites of encounter; public space, the home, neighbourhoods, schools, sports clubs, public transport, cafes and libraries (Wilson 2011; Schuermans 2013; Hemming 2011; Neal and Vincent 2011; Mayblin, Valentine and Anderrson 2015; Laurier and Philo 2006; Valentine and Sadgrove 2013; Harris, Valentine and Piekut 2014; Fincher and Iveson 2008). While these spaces produce a range of outcomes, the literature remains frustrated by a lack of clarity of what constitutes a ‘meaningful’ encounter and how such encounters might be planned for. Drawing on survey and interview data with full-time international students at University College Cork, Ireland, this study contributes to understanding how encounters are shaped by the construction and reproduction of particular identities in particular spaces, imbuing spaces with uneven power frameworks that produce diverse outcomes. Rather than identifying a singular ‘meaningful’ outcome of encounter as a potential panacea to the issues of exclusion and oppression, the contention here is to recognise a range of outcomes that are created by individuals in a range of ways. To define one outcome of encounter as ‘meaningful’ is to overlook the scale of intensity of diverse interactions and the multiplicity of ways in which people learn to live with difference.

“Considering there’s supposedly nothing wrong with me, it’s not a life”: Women’s Narratives of Distress, Visiting Herbalists, and Being Well in the 21st Century

Distress can have a profoundly negative impact on the well-being of women (who are the main receivers of treatment for distress). Distress also poses a huge financial problem for the United Kingdom, the cost of which is predicted to reach over £26bn by 2026. A growing body of research has shown that various medicinal plants have potential to treat different aspects of distress. However, there is little research investigating the patient experience of western herbal practice (WHP), and none investigating women’s experiences of WHP for distress. In response, this longitudinal study utilised interviews with twenty-six women who were visiting herbalists for distress across the south-east of The United Kingdom to elicit their stories of distress, as well as their experiences of WHP. The narratives were analysed from a constructionist standpoint, using inductive thematic analysis. The participants’ narratives highlighted the profound impact of everyday distress, whilst feelings associated with distress (anxiety, low mood, isolation, shame and guilt) were frequently communicated via the use of metaphors. These negative feelings, often combined with unsuccessful biomedical encounters, frequently led to the women feeling desperate when first visiting a herbalist. The participants’ experiences of WHP showed that an accessible practitioner and good therapeutic relationship combined with flexible herbal treatment, allowed women with diverse stories of distress to overcome feelings of desperation. Ongoing support allowed the women to feel like they had a safety net as they journeyed from a place of distress, back into the wider world. These findings were supported by more unusual negative accounts, which showed how the herbal therapeutic process could be unsuccessful if elements were missing. This research is of significance as it helps to deepen our understanding of women’s experiences of distress – particularly perceptions of stigma which surround feelings of shame (linked to an inability to cope) and guilt (linked to the perceived impact of distress on others). The research also has relevance for WHP, as it highlights which positive aspects of WHP are of particular importance to women patients who are living with distress.

Music therapy, in tuning at the end of life

In this article music therapy is presented as a helpful tool to support the persons (and their relatives) living at the end of their life and, also, as a non pharmacological and complementary therapy in an integral and holistic medicine. What we report here comes from the direct experience, nourished after many years of interventions and reflections in oncology and palliative care units. We’re talking about silence, music, therapy, models and techniques. We will read and feel therapeutic sessions… but above all, we’re talking about life, conscience and love.

Mental Health and Morbidity of Caregivers and Co-Residents of individuals with Dementia: A Quasi-Experimental Design

Objectives: To determine if providing informal care to a co-resident with dementia symptoms places an additional risk on the likelihood of poor mental health or mortality compared to co-resident non-caregivers.
Design: A quasi-experimental design of caregiving and non-caregiving co-residents of individuals with dementia symptoms, providing a natural comparator for the additive effects of caregiving on top of living with an individual with dementia symptoms. 
Methods: Census records, providing information on household structure, intensity of caregiving, presence of dementia symptoms and self-reported mental health, were linked to mortality records over the following 33 months. Multi-level regression models were constructed to determine the risk of poor mental health and death in co-resident caregivers of individuals with dementia symptoms compared to co-resident non-caregivers, adjusting for the clustering of individuals within households.
Results: The cohort consisted of 10,982 co-residents (55.1% caregivers), with 12.1% of non-caregivers reporting poor mental health compared to 8.4% of intense caregivers (>20 hours of care per week). During follow-up the cohort experienced 560 deaths (245 to caregivers). Overall, caregiving co-residents were at no greater risk of poor mental health but had lower mortality risk than non-caregiving co-residents (ORadj=0.93, 95% CI 0.79, 1.10 and ORadj=0.67, 95% CI 0.56, 0.81, respectively); this lower mortality risk was also seen amongst the most intensive caregivers (ORadj=0.65, 95% CI 0.53, 0.79).
Conclusion: Caregiving poses no additional risk to mental health over and above the risk associated with merely living with someone with dementia, and is associated with a lower mortality risk compared to non-caregiving co-residents.

Patients' experiences of support for learning to live with diabetes to promote health and well-being : A lifeworld phenomenological study

Learning to live with diabetes in such a way that the new conditions will be a normal and natural part of life imposes requirements on the person living with diabetes. Previous studies have shown that there is no clear picture of what and how the learning that would allow persons to incorporate the illness into their everyday life will be supported. The aim of this study is to describe the phenomenon of support for learning to live with diabetes to promote health and well-being, from the patient's perspective. Data were collected by interviews with patients living with type 1 or type 2 diabetes. The interviews were analysed using a reflective lifeworld approach. The results show that reflection plays a central role for patients with diabetes in achieving a new understanding of the health process, and awareness of their own responsibility was found to be the key factor for such a reflection. The constituents are responsibility creating curiosity and willpower, openness enabling support, technology verifying bodily feelings, a permissive climate providing for participation and exchanging experiences with others. The study concludes that the challenge for caregivers is to create interactions in an open learning climate that initiates and supports reflection to promote health and well-being.