Living well to the end:a phenomenological analysis of life in extra care housing

OBJECTIVES: To understand older adults' experiences of moving into extra care housing which offers enrichment activities alongside social and healthcare support. DESIGN: A longitudinal study was conducted which adopted a phenomenological approach to data generation and analysis. METHODS: Semi-structured interviews were conducted in the first 18 months of living in extra care housing. Interpretative phenomenological analysis was used because its commitment to idiography enabled an in-depth analysis of the subjective lived experience of moving into extra care housing. Themes generated inductively were examined against an existential-phenomenological theory of well-being. RESULTS: Learning to live in an extra care community showed negotiating new relationships was not straightforward; maintaining friendships outside the community became more difficult as capacity declined. In springboard for opportunity/confinement, living in extra care provided new opportunities for social engagement and a restored sense of self. Over time horizons began to shrink as incapacities grew. Seeking care illustrated reticence to seek care, due to embarrassment and a sense of duty to one's partner. Becoming aged presented an ontological challenge. Nevertheless, some showed a readiness for death, a sense of homecoming. CONCLUSIONS: An authentic later life was possible but residents required emotional and social support to live through the transition and challenges of becoming aged. Enhancement activities boosted residents' quality of life but the range of activities could be extended to cater better for quieter, smaller scale events within the community; volunteer activity facilitators could be used here. Peer mentoring may help build new relationships and opportunities for interactive stimulation. Acknowledging the importance of feeling-empathic imagination-in caregiving may help staff and residents relate better to each other, thus helping individuals to become ontologically secure and live well to the end.

Evaluation of low vision services on the quality of life of individuals with age-related macular degeneration

Background: Age-related macular degeneration (ARMD) is a major cause of irreversible visual loss in the elderly and a significant threat to their quality of life. Although low vision services often improve the functional outcomes of individuals with macular disease, it remains unclear whether or not they have any impact on quality of life. The principal aim of this study was to determine the effect of a hospital-based low vision clinic on the quality of life of individuals with ARMD. Methods: Forty patients with ARMD attended the low vision clinic at Milton Keynes University Hospital. Quality of life was measured with the vision-specific Low Vision Quality of Life (LVQOL) questionnaire and the general health EuroQol (EQ-5D-5L) questionnaire. Measures were completed at baseline (time zero, T0), and at three- (T3) and six-month (T6) follow-up visits. Results: The near visual acuity of individuals attending the low vision clinic for the first time improved significantly between visits T0 and T3 (p=0.005), reflecting the practiced use of their newly-dispensed low vision aids. As expected, there was no significant change in near acuity over this time period for existing patients. For both new and existing patients, a significant increase in LVQOL score was evident between visits T0 and T3, with a further significant improvement between T3 and T6. Similarly, there was a significant decrease in EQ-5D-5L questionnaire scores between visits T0 and T6. Conclusions: The higher LVQOL scores obtained at the end of the study period (T6) provide evidence that low vision services at Milton Keynes University Hospital served to improve patient quality of life. The reduction in EQ-5D-5L scores over the same time period suggests that low vision services also provide for an improvement in general health-related quality of life. Impact: The findings support the cause of low vision services to improve not only the vision and functional outcomes of individuals with macular disease but also their quality of life. Moreover, the findings suggest that a more efficient allocation of resources at low vision clinics may be possible through the standardisation of patient follow-up frequency.

Valued occupational roles and life satisfaction among south Florida HIV-infected and non-infected homosexual males: An exploratory study

A study was conducted in order to describe and understand the occupational role behavior of gay men with particular interest on understanding the impact of an HIV diagnosis on their roles and life satisfaction. A 137-item questionnaire was developed for this study and distributed through various gay community groups in south Florida. The process resulted in ranked description of 24 valued occupational roles of gay men (n = 80) along with a general understanding of potential shifts that may occur in those roles as a result of becoming infected with HIV. The study concludes that a diagnosis of HIV infection impacts gay men both by altering their value for particular roles and by darkening the images they hold of their future. The study also identified key factors which may contribute to the greater life satisfaction of gay men including greater confidence in personal knowledge of HIV, a more optimistic outlook an life, the use of stronger coping styles, and perceiving stronger social support and lower stress. ^

Late adolescents in transition: The influence of support on post-transition adjustment

Points of transition, when major life roles undergo change, tend to be associated with an increased need for social support. The transition from adolescence to adulthood is ideal for the examination of the effect of normative stress on the development and functioning of social networks. A questionnaire was designed based on the convoy model to assess the influence of personal and situational characteristics on the utilization of support in the prediction of post-transition adjustment. Data were initially collected for a multi-ethnic sample of 741 sophomores and seniors in high school. Surveys were mailed to participants two years later, and one again the following year. The current study is based on data for 310 participants with complete data for all three time periods. A series of hierarchical regressions were conducted to compare three explanatory models of support: main effect, mediation, and moderation. A main effect model of support on post-transition adjustment was confirmed, a mediator model was not confirmed, and a moderator model was marginally confirmed. Family and friend support was related to significantly lower levels of loneliness, particularly for those with less adaptable temperaments. ^

Living positive: Life in community among Puerto Rican men living with HIV in Boston

Negative experiences of stigmatization, discrimination, and rejection are common among people living with HIV in the United States, and particularly when they are also members of a minority group. Some three decades after the first cases of AIDS were identified, people infected with HIV continue to be perceived and characterized negatively. While an HIV/AIDS diagnosis is typically associated with negativity, this study investigates the extent to which collective experiences among HIV-positive people result in healthy responses and positive social adjustment. This study is focused on the ways in which HIV-positive Puerto Rican men in Boston live positive despite being diagnosed with HIV. Rather than wrapping themselves in the social stigma of HIV and the isolation that entails, they participate in processes that affirm themselves and their peers. In so doing, they help generate both healthy and meaningful lives for themselves and others. The study examines the process in which Puerto Rican men living with HIV in Boston participate, promote, and reaffirm an HIV community, la comunidad, as a social entity with a unique culture and identity. This study also investigates how this community influences, supports, and encourages the adoption of positive transformations for living long term with HIV. On the basis of nine months of field research, this qualitative study employed both focus groups and interviews with fifty HIV-positive Puerto Rican men in Boston. These men were recruited, using convenience sampling, from different community-based organizations (CBOs) that provide HIV/AIDS services in Boston. The study finds that HIV-positive Puerto Rican men in Boston build community, not in response to social exclusion, but built on shared positive practices and strategies for living healthy with HIV. These men come together to negotiate and form a unique cultural community expressed in norms, beliefs, and practices that, although centered on HIV, are designed for living healthy. These expressions reaffirm a sense of community in everyday settings and transform the lives of these men with positive behaviors and healthy lifestyles. The findings reveal that this transformation takes place in the context of a community, with the support, encouragement, and at times, policing of others. La comunidad is where the lives of these men are transformed as they learn, adopt, and experience living positive with HIV.

Toward an understanding of how individuals overcome challenges to development: A phenomenological study of an inner -city student's attitude toward academic orientation and life

The purpose of this qualitative case study was to gain an understanding of the phenomenon of academic orientation by seeking the insights into an inner-city Haitian-American middle school student's attitudes and world view toward education and life. A phenomenological approach was used in order to explore the way in which Cindy, a minority student, gives meaning to her lived-experiences in terms of her desire to meet academic expectations and her ability to overcome social adversity and/or other risk factors.^ The study attempted to answer the following two research questions: (1) What provides the focus for Cindy's (the subject's) approach to her school work and/or life? (2) What are the processes that give meaning and direction to academic orientation and life for Cindy? In-depth interviewing was the primary method of data collection. In addition, journal and sketchbook entries and school district records were used and classroom observations made.^ The nature of the study to understand lived-experience facilitated the use of the case study method and a phenomenological method of description. Data analysis was conducted by means of an adapted form of the constant comparative approach. Patterns in the data which emerged were coded and categorized according to underlying generative themes. Phenomenological reflection and analysis were used to grasp the experiential structures of Cindy's experience. The following textural themes were identified and confirmed to be essential themes to Cindy's experience: personal challenge to do her best, personal challenge to want to learn, having a sense of determination, being able to think for self, having a disposition to like self, achieving self-respect through performance, seeing a need to help others, being intrinsically motivated, being an independent learner, attending more to academic pressure and less to peer pressure, having motivational catalysts in her life, learning and support opportunities, and having a self-culture. Using Mahrer's humanistic theory of experiencing, Cindy's development was interpreted in terms of her progression through a sequence of developmental plateaus: externalized self, internalized self, and integrating and actualizing self.^ The findings of this study were that Cindy's desire to meet academic expectations is guided by a meaning construction internal frame of reference. High expectations of self in conjunction with other protective factors found in Cindy's home and school environments were also found to be linked to her educational resilience and success. Cindy's lived-experiences were also found to be related to Mahrer's theory of human development. In addition, it was concluded that "minority" students do not all fit into social categories and labels. ^

Development of an education resource for families and clients navigating through end-of-life care with at-home palliation

Background: Community health nurses (CHNs) play a pivotal role in providing end-of-life care to clients diagnosed with a life-threatening illness. Providing quality end-of-life care is an ethical obligation. Eastern Health’s palliative end-of-life care program (PEOLC) offers nursing care, equipment, services, and support. However, the caregiver’s need for practical information about end-of-life issues is not addressed. Purpose: To develop an educational resource to assist clients and families during end-of-life and to provide a framework for new CHNs in home palliation. Methods: An informal Needs Assessment, a literature review, an environmental scan, and consultations with four CHNs involved with home palliation. Results: An educational resource was developed to address the practical end-of-life issues identified in the literature review and consultations. Conclusion: An improved delivery of care for at-home palliation in the community for clients and families, and a framework for new CHNs.

Modulating membership grades to gain consensus for fuzzy set uncertainty values in a clinical decision support system

This paper deals with a very important issue in any knowledge engineering discipline: the accurate representation and modelling of real life data and its processing by human experts. The work is applied to the GRiST Mental Health Risk Screening Tool for assessing risks associated with mental-health problems. The complexity of risk data and the wide variations in clinicians' expert opinions make it difficult to elicit representations of uncertainty that are an accurate and meaningful consensus. It requires integrating each expert's estimation of a continuous distribution of uncertainty across a range of values. This paper describes an algorithm that generates a consensual distribution at the same time as measuring the consistency of inputs. Hence it provides a measure of the confidence in the particular data item's risk contribution at the input stage and can help give an indication of the quality of subsequent risk predictions. © 2010 IEEE.

The Relationship Between Support Systems and Disease Burden for Families Coping with Sickle Cell Disease in South Africa and Cameroon

Background: Sickle cell disease (SCD) is a debilitating genetic blood disorder that seriously impacts the quality of life of affected individuals and their families. With 85% of cases occurring in sub-Saharan Africa, it is essential to identify the barriers and facilitators of optimal outcomes for people with SCD in this setting. This study focuses on understanding the relationship between support systems and disease outcomes for SCD patients and their families in Cameroon and South Africa.

Methods: This mixed-methods study utilizes surveys and semi-structured interviews to assess the experiences of 29 SCD patients and 28 caregivers of people with SCD across three cities in two African countries: Cape Town, South Africa; Yaoundé, Cameroon; and Limbe, Cameroon.

Results: Patients in Cameroon had less treatment options, a higher frequency of pain crises, and a higher incidence of malaria than patients in South Africa. Social support networks in Cameroon consisted of both family and friends and provided emotional, financial, and physical assistance during pain crises and hospital admissions. In South Africa, patients relied on a strong medical support system and social support primarily from close family members; they were also diagnosed later in life than those in Cameroon.

Conclusions: The strength of medical support systems influences the reliance of SCD patients and their caregivers on social support systems. In Cameroon the health care system does not adequately address all factors of SCD treatment and social networks of family and friends are used to complement the care received. In South Africa, strong medical and social support systems positively affect SCD disease burden for patients and their caregivers. SCD awareness campaigns are necessary to reduce the incidence of SCD and create stronger social support networks through increased community understanding and decreased stigma.

The Life Cycle of Corporate Venture Capital

This paper establishes the life-cycle dynamics of Corporate Venture Capital (CVC) to explore the information acquisition role of CVC investment in the process of corporate innovation. I exploit an identification strategy that allows me to isolate exogenous shocks to a firm's ability to innovate. Using this strategy, I first find that the CVC life cycle typically begins following a period of deteriorated corporate innovation and increasingly valuable external information, lending support to the hypothesis that firms conduct CVC investment to acquire information and innovation knowledge from startups. Building on this analysis, I show that CVCs acquire information by investing in companies with similar technological focus but have a different knowledge base. Following CVC investment, parent firms internalize the newly acquired knowledge into internal R&D and external acquisition decisions. Human capital renewal, such as hiring inventors who can integrate new innovation knowledge, is integral in this step. The CVC life cycle lasts about four years, terminating as innovation in the parent firm rebounds. These findings shed new light on discussions about firm boundaries, managing innovation, and corporate information choices.

Development of Independent Living Skills in Project Panther LIFE Students during the Summer Residential Program

Project Panther LIFE: Panther Learning Is For Everyone is an ongoing collaborative partnership between Florida International University (FIU), Miami-Dade County Public Schools (M-DCPS), and Parent to Parent of Miami, Inc. to develop, implement, support, and expand a non-degree postsecondary transition program for students with intellectual disabilities (ID). In Summer 2014, the program launched its first on-campus three-week Summer Residential Program (SRP) which focused on the development of independent living skills and self-determination skills An overview of the SRP components, program support systems, and benefits of the experience will be given through the perspective of key personnel, partnerships, and students.

“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.

A monster that lives in our lives - experiences of caregivers of people with motor neuron disease and identifying avenues for support.

Background A developing body of evidence has provided valuable insight into the experiences of caregivers of people with motor neuron disease; however, understandings of how best to support caregivers remain limited.

Aim This study sought to understand concepts related to the motor neuron disease caregiver experience which could inform the development of supportive interventions.

Design A qualitative thematic analysis of a one-off semistructured interview with caregivers was undertaken.

Setting/participants Caregivers of people with motor neuron disease were recruited from a progressive neurological diseases clinic in Melbourne, Australia.

Results 15 caregivers participated. Three key themes were identified: (1) The Thief: the experience of loss and grief across varied facets of life; (2) The Labyrinth: finding ways to address ever changing challenges as the disease progressed; (3) Defying fate: being resilient and hopeful as caregivers tried to make the most of the time remaining.

Conclusions Caregivers are in need of more guidance and support to cope with experiences of loss and to adapt to changeable care giving duties associated with disease progression. Therapeutic interventions which target these experiences of loss and change are worth investigation.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.