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1.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618
2.  Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11 
PLoS Medicine  2009;6(8):e1000121.
Holly Prigerson and colleagues tested the psychometric validity of criteria for prolonged grief disorder (PGD) to enhance the detection and care of bereaved individuals at heightened risk of persistent distress and dysfunction.
Background
Bereavement is a universal experience, and its association with excess morbidity and mortality is well established. Nevertheless, grief becomes a serious health concern for a relative few. For such individuals, intense grief persists, is distressing and disabling, and may meet criteria as a distinct mental disorder. At present, grief is not recognized as a mental disorder in the DSM-IV or ICD-10. The goal of this study was to determine the psychometric validity of criteria for prolonged grief disorder (PGD) to enhance the detection and potential treatment of bereaved individuals at heightened risk of persistent distress and dysfunction.
Methods and Findings
A total of 291 bereaved respondents were interviewed three times, grouped as 0–6, 6–12, and 12–24 mo post-loss. Item response theory (IRT) analyses derived the most informative, unbiased PGD symptoms. Combinatoric analyses identified the most sensitive and specific PGD algorithm that was then tested to evaluate its psychometric validity. Criteria require reactions to a significant loss that involve the experience of yearning (e.g., physical or emotional suffering as a result of the desired, but unfulfilled, reunion with the deceased) and at least five of the following nine symptoms experienced at least daily or to a disabling degree: feeling emotionally numb, stunned, or that life is meaningless; experiencing mistrust; bitterness over the loss; difficulty accepting the loss; identity confusion; avoidance of the reality of the loss; or difficulty moving on with life. Symptoms must be present at sufficiently high levels at least six mo from the death and be associated with functional impairment.
Conclusions
The criteria set for PGD appear able to identify bereaved persons at heightened risk for enduring distress and dysfunction. The results support the psychometric validity of the criteria for PGD that we propose for inclusion in DSM-V and ICD-11.
Please see later in the article for Editors' Summary
Editors' Summary
Background
Virtually everyone loses someone they love during their lifetime. Grief is an unavoidable and normal reaction to this loss. After the death of a loved one, bereaved people may feel sadness, anger, guilt, anxiety, and despair. They may think constantly about the deceased person and about the events that led up to the person's death. They often have physical reactions to their loss—problems sleeping, for example—and they may become ill. Socially, they may find it difficult to return to work or to see friends and family. For most people, these painful emotions and thoughts gradually diminish, usually within 6 months or so of the death. But for a few people, the normal grief reaction lingers and becomes increasingly debilitating. Experts call this complicated grief or prolonged grief disorder (PGD). Characteristically, people with PGD have intrusive thoughts and images of the deceased person and a painful yearning for his or her presence. They may also deny their loss, feel desperately lonely and adrift, and want to die themselves.
Why Was This Study Done?
PGD is not currently recognized as a mental disorder although it meets the requirements for one given in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) and in the World Health Organization's International Statistical Classification of Diseases and Related Health Problems, 10thEdition (ICD-10). Before PGD can be recognized as a mental disorder (and included in DSM-V and ICD-11), bereavement and mental-health experts need to agree on standardized criteria for PGD. Such criteria would be useful because they would allow researchers and clinicians to identify risk factors for PGD and to find ways to prevent PGD. They would also help to ensure that people with PGD get appropriate treatments such as psychotherapy to help them change their way of thinking about their loss and re-engage with the world. Recently, a panel of experts agreed on a consensus list of symptoms for PGD. In this study, the researchers undertake a field trial to develop and evaluate algorithms (sets of rules) for diagnosing PGD based on these symptoms.
What Did the Researchers Do and Find?
The researchers used “item response theory” (IRT) to derive the most informative PGD symptoms from structured interviews of nearly 300 people who had recently lost a close family member. These interviews contained questions about the consensus list of symptoms; each participant was interviewed two or three times during the two years after their spouse's death. The researchers then used “combinatoric” analysis to identify the most sensitive and specific algorithm for the diagnosis of PGD. This algorithm specifies that a bereaved person with PGD must experience yearning (physical or emotional suffering because of an unfulfilled desire for reunion with the deceased) and at least five of nine additional symptoms. These symptoms (which include emotional numbness, feeling that life is meaningless, and avoidance of the reality of the loss) must persist for at least 6 months after the bereavement and must be associated with functional impairment. Finally, the researchers show that individuals given a diagnosis of PGD 6–12 months after a death have a higher subsequent risk of mental health and functional impairment than people not diagnosed with PGD.
What Do These Findings Mean?
These findings validate a set of symptoms and a diagnostic algorithm for PGD. Because most of the study participants were elderly women who had lost their husband, further validation is needed to check that these symptoms and algorithm also apply to other types of bereaved people such as individuals who have lost a child. For now, though, these findings support the inclusion of PGD in DSM-V and ICD-11 as a recognized mental disorder. Furthermore, the availability of a standardized way to diagnose PGD will help clinicians identify the minority of people who fail to adjust successfully to the loss of a loved one. Hopefully, by identifying these people and helping them to avoid the onset of PGD (perhaps by providing psychotherapy soon after a death) and/or providing better treatment for PGD, it should now be possible to reduce the considerable personal and societal costs associated with prolonged grief.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000121.
This study is further discussed in a PLoS Medicine Perspective by Stephen Workman
The Dana Farber Cancer Institute has a page describing its Center for Psycho-oncology and Palliative Care Research
The UK Royal College of Psychiatrists has a leaflet on bereavement (in English, Welsh, Urdu, and Chinese)
The US National Cancer Institute also has information about coping with bereavement for patients and health professionals (in English and Spanish)
MedlinePlus has links to other information about bereavement (in English and Spanish)
The Journal of the American Medical Association has a patient page on abnormal grief
Harvard Medical School provides a short family health guide about complicated grief
Information on DSM-IV and ICD-10 is available
doi:10.1371/journal.pmed.1000121
PMCID: PMC2711304  PMID: 19652695
3.  A qualitative investigation of the roles and perspectives of older patients with advanced cancer and their family caregivers in managing pain in the home 
BMC Palliative Care  2014;13:39.
Background
Pain in advanced cancer is complex and multifaceted. In older patients comorbidities and age-related functional decline add to the difficulties in managing cancer pain. The current emphasis on care in the community, and preference by patients with life-limiting disease to receive care in the home, has meant that patients and their family caregivers have become increasingly responsible for the day-to-day management of cancer pain. An appreciation of patients’ and caregivers’ roles and perspectives managing pain is, therefore, fundamental to addressing cancer pain in this setting. Consequently, we sought to explore and describe their perspectives and roles.
Methods
A qualitative descriptive approach was used. Semi-structured interviews were conducted with a purposeful sample of patient- family caregiver dyads. Participants included 18 patients aged 65 years and over, with advanced cancer, receiving palliative care at home, and 15 family caregivers. The interview data were analysed using thematic analyses. Strategies were used to establish rigour.
Results
Two main themes were identified. The first theme, "Communicating the pain", represented pain assessment and incorporated four subthemes in which participants described: their roles in pain assessment, the identification and expression of pain, and the communication of pain between patients and caregivers. The second theme, "Finding a solution", comprised of four subthemes that reflected participants’ roles and approaches in controlling pain; as well as their beliefs about cancer pain control, experience with side effects, and perspectives on the goals of treatment.
Conclusions
The findings support other studies in identifying knowledge and attitudinal barriers to pain control; while adding to the literature by highlighting practical and relational barriers faced by older patients and their family caregivers. Health care professionals can do much to address the barriers identified by: correcting misconceptions regarding cancer pain, facilitating the communication of pain within dyads, and ensuring that patients and family caregivers have the knowledge, skills, and ability to assess and implement pain treatment strategies. This support needs to be individually tailored to meet the ongoing needs of both members of the dyad so that the shared goals of pain management are accomplished.
doi:10.1186/1472-684X-13-39
PMCID: PMC4137110  PMID: 25140119
Cancer; Pain; Palliative care; Family caregivers; Aging
4.  Eurocan plus report: feasibility study for coordination of national cancer research activities 
Summary
The EUROCAN+PLUS Project, called for by the European Parliament, was launched in October 2005 as a feasibility study for coordination of national cancer research activities in Europe. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people, the largest Europe–wide consultation ever conducted in the field of cancer research.
Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
It is essential to include the patients’ voice in the establishment of priority areas in cancer research at the present time. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community is evident. A top priority should be the development of translational research (in its widest form), leading to the development of effective and innovative cancer treatments and preventive strategies. Translational research ranges from bench–to–bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
The EUROCAN+PLUS Project recommends the creation of a small, permanent and independent European Cancer Initiative (ECI). This should be a model structure and was widely supported at both General Assemblies of the project. The ECI should assume responsibility for stimulating innovative cancer research and facilitating processes, becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ organizations, European institutions, Member States, industry and small and medium enterprises (SMEs), putting into practice solutions aimed at alleviating barriers to collaboration and coordination of cancer research activities in the European Union, and dealing with legal and regulatory issues. The development of an effective ECI will require time, but this entity should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co–operation between comprehensive cancer centres and basic research laboratories throughout Europe and (3) networking between funding bodies at the European level.
The European Parliament and its instruments have had a major influence in cancer control in Europe, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
Executive Summary
Cancer is one of the biggest public health crises facing Europe in the 21st century—one for which Europe is currently not prepared nor preparing itself. Cancer is a major cause of death in Europe with two million casualties and three million new cases diagnosed annually, and the situation is set to worsen as the population ages.
These facts led the European Parliament, through the Research Directorate-General of the European Commission, to call for initiatives for better coordination of cancer research efforts in the European Union. The EUROCAN+PLUS Project was launched in October 2005 as a feasibility study for coordination of national cancer research activities. Over the course of the next two years, the Project process organized over 60 large meetings and countless smaller meetings that gathered in total over a thousand people. In this respect, the Project became the largest Europe-wide consultation ever conducted in the field of cancer research, implicating researchers, cancer centres and hospitals, administrators, healthcare professionals, funding agencies, industry, patients’ organizations and patients.
The Project first identified barriers impeding research and collaboration in research in Europe. Despite a strong tradition in biomedical science in Europe, fragmentation and lack of sustainability remain the formidable challenges for implementing innovative cancer research and cancer care improvement. There is an enormous duplication of research effort in the Member States, which wastes time, wastes money and severely limits the total intellectual concentration on the wide cancer problem. There is a striking lack of communication between some of the biggest actors on the European scene, and there are palpable tensions between funders and those researchers seeking funds.
In addition, there is a shortage of leadership, a multiplicity of institutions each focusing on its own agenda, sub–optimal contact with industry, inadequate training, non–existent career paths, low personnel mobility in research especially among clinicians and inefficient funding—all conspiring against efficient collaboration in cancer care and research. European cancer research today does not have a functional translational research continuum, that is the process that exploits biomedical research innovations and converts them into prevention methods, diagnostic tools and therapies. Moreover, epidemiological research is not integrated with other types of cancer research, and the implementation of the European Directives on Clinical Trials 1 and on Personal Data Protection 2 has further slowed the innovation process in Europe. Furthermore, large inequalities in health and research exist between the EU–15 and the New Member States.
The picture is not entirely bleak, however, as the European cancer research scene presents several strengths, such as excellent basic research and clinical research and innovative etiological research that should be better exploited.
When considering recommendations, several priority dimensions had to be retained. It is essential that proposals include actions and recommendations that can benefit all Member States of the European Union and not just States with the elite centres. It is also essential to have a broader patient orientation to help provide the knowledge to establish cancer control possibilities when we exhaust what can be achieved by the implementation of current knowledge. It is vital that the actions proposed can contribute to the Lisbon Strategy to make Europe more innovative and competitive in (cancer) research.
The Project participants identified six areas for which consensus solutions should be implemented in order to obtain better coordination of cancer research activities. The required solutions are as follows. The proactive management of innovation, detection, facilitation of collaborations and maintenance of healthy competition within the European cancer research community.The establishment of an exchange portal of information for health professionals, patients and policy makers.The provision of guidance for translational and clinical research including the establishment of a translational research platform involving comprehensive cancer centres and cancer research centres.The coordination of calls and financial management of cancer research projects.The construction of a ‘one–stop shop’ as a contact interface between the industry, small and medium enterprises, scientists and other stakeholders.The support of greater involvement of healthcare professionals in translational research and multidisciplinary training.
In the course of the EUROCAN+PLUS consultative process, several key collaborative projects emerged between the various groups and institutes engaged in the consultation. There was a collaboration network established with Europe’s leading Comprehensive Cancer Centres; funding was awarded for a closer collaboration of Owners of Cancer Registries in Europe (EUROCOURSE); there was funding received from FP7 for an extensive network of leading Biological Resource Centres in Europe (BBMRI); a Working Group identified the special needs of Central, Eastern and South–eastern Europe and proposed a remedy (‘Warsaw Declaration’), and the concept of developing a one–stop shop for dealing with academia and industry including the Innovative Medicines Initiative (IMI) was discussed in detail.
Several other dimensions currently lacking were identified. There is an absolute necessity to include the patients’ voice in the establishment of priority areas in cancer research at the present time. It was a salutary lesson when it was recognized that all that is known about the quality of life of the cancer patient comes from the experience of a tiny proportion of cancer patients included in a few clinical trials. The necessity to have dialogue between funders and scientists to establish the best mechanisms to meet the needs of the entire community was evident. A top priority should be the development of translational research (in its widest form) and the development of effective and innovative cancer treatments and preventative strategies in the European Union. Translational research ranges from bench-to-bedside innovative cancer therapies and extends to include bringing about changes in population behaviours when a risk factor is established.
Having taken note of the barriers and the solutions and having examined relevant examples of existing European organizations in the field, it was agreed during the General Assembly of 19 November 2007 that the EUROCAN+PLUS Project had to recommend the creation of a small, permanent and neutral ECI. This should be a model structure and was widely supported at both General Assemblies of the project. The proposal is based on the successful model of the European Molecular Biology Organisation (EMBO), and its principal aims include providing a forum where researchers from all backgrounds and from all countries can meet with members of other specialities including patients, nurses, clinicians, funders and scientific administrators to develop priority programmes to make Europe more competitive in research and more focused on the cancer patient.
The ECI should assume responsibility for: stimulating innovative cancer research and facilitating processes;becoming the common voice of the cancer research community and serving as an interface between the cancer research community and European citizens, patients’ and organizations;European institutions, Member States, industry and small and medium enterprises;putting into practice the aforementioned solutions aimed at alleviating barriers and coordinating cancer research activities in the EU;dealing with legal and regulatory issues.
Solutions implemented through the ECI will lead to better coordination and collaboration throughout Europe, more efficient use of resources, an increase in Europe’s attractiveness to the biomedical industry and better quality of cancer research and education of health professionals.
The Project considered that European legal instruments currently available were inadequate for addressing many aspects of the barriers identified and for the implementation of effective, lasting solutions. Therefore, the legal environment that could shelter an idea like the ECI remains to be defined but should be done so as a priority. In this context, the initiative of the European Commission for a new legal entity for research infrastructure might be a step in this direction. The development of an effective ECI will require time, but this should be established immediately. As an initial step, coordination efforts should be directed towards the creation of a platform on translational research that could encompass: (1) coordination between basic, clinical and epidemiological research; (2) formal agreements of co-operation between comprehensive cancer centres and basic research laboratories throughout Europe; (3) networking between funding bodies at the European level. Another topic deserving immediate attention is the creation of a European database on cancer research projects and cancer research facilities.
Despite enormous progress in cancer control in Europe during the past two decades, there was an increase of 300,000 in the number of new cases of cancer diagnosed between 2004 and 2006. The European Parliament and its instruments have had a major influence in cancer control, notably in tobacco control and in the implementation of effective population–based screening. To make further progress there is a need for novelty and innovation in cancer research and prevention in Europe, and having a platform such as the ECI, where those involved in all aspects of cancer research can meet, discuss and interact, is a decisive development for Europe.
doi:10.3332/ecancer.2011.84
PMCID: PMC3234055  PMID: 22274749
5.  Hope and connection: the experience of family caregivers of persons with dementia living in a long term care facility 
BMC Geriatrics  2013;13:112.
Background
Hope is a psychosocial resource that is essential for the psychological, spiritual, and physical well-being of family members caring for persons with dementia. A significant positive relationship has been found between hope and well-being in family caregivers of persons with dementia living in the community. However, the hope experience of family caregivers of persons living with dementia in long-term care (LTC) facilities has not been explored. The purpose of this study was to explore the hope experience of family caregivers of persons with dementia living in a LTC facility.
Methods
Twenty-three open-ended face to face interviews were conducted with 13 family caregivers of residents with dementia in a LTC facility. Family was broadly defined to include relatives and friends. Seven of these participants also reflected on their hope in diaries over a two week period. Interview transcripts and journal texts were analyzed using Thorne’s interpretive description approach.
Results
The over-arching theme was “hope and connection”. Participants lost hope and felt despair when they perceived they were unable to connect with their family member in the LTC facility. They regained their hope when a connection could be made. Several sub-themes were identified including: accepting where we are, living life in the moment, believing in something, standing together, and balancing dual worlds.
Conclusions
Hope was important and essential for family caregivers of persons with dementia residing in a LTC facility. The overarching theme of “hope and connection” underscores the importance of maintaining relationships and connection between family members and the person in LTC. Given the paucity of hope research conducted within this population, the study findings provide a foundation for future research.
doi:10.1186/1471-2318-13-112
PMCID: PMC4015868  PMID: 24138640
Hope; Connection; Caregivers; Dementia
6.  Real-world experience with colorectal cancer chemotherapies: patient web forum analysis 
ecancermedicalscience  2013;7:361.
Background
In contrast to clinical trials, patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums.
Methods
This was a systematic cross-sectional qualitative analysis. Two active CRC web forums were identified based on four criteria: active for ≥five years, >12,000 total posts, >20 individuals currently browsing, and ≥10 new posts/day. All relevant threads (set of messages focusing on a topic) relating to treatment posted in July and December 2010 and February to March 2011 were reviewed and coded using MaxQDA software. A content analysis was performed identifying key themes.
Results
The threads included 1522 posts by 264 individuals. Demographics were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean patient age was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common themes were side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, and emotional distress (23.9%). The posters came to the online forums to have an emotional outlet, share experience, and seek advice. The emotional impacts primarily exemplified resilience and positive coping strategies. Formal knowledge regarding the likelihood of treatment response, magnitude of benefit, or side effects was lacking, which lead to uncertainty and anxiety. However, patients expressed appreciation for the availability of treatment options and the hope they provide.
Conclusion
Online CRC communities provide patients with convenient and valuable emotional support and disease information. CRC and treatments may have profound impacts beyond efficacy and toxicity. Systematic information and decision tools may help to minimise uncertainties and help patients manage expectations and emotional distress.
doi:10.3332/ecancer.2013.361
PMCID: PMC3796446  PMID: 24143155
colorectal cancer; internet; chemotherapy; social media
7.  Transnational Tobacco Company Interests in Smokeless Tobacco in Europe: Analysis of Internal Industry Documents and Contemporary Industry Materials 
PLoS Medicine  2013;10(9):e1001506.
In light lobbying by transnational tobacco companies to remove the European Union ban on the sale of snus (a smokeless tobacco product), Silvy Peeters and Anna Gilmore explore the motivation behind tobacco companies' interests in smokeless tobacco products in Europe.
Please see later in the article for the Editors' Summary
Background
European Union (EU) legislation bans the sale of snus, a smokeless tobacco (SLT) which is considerably less harmful than smoking, in all EU countries other than Sweden. To inform the current review of this legislation, this paper aims to explore transnational tobacco company (TTC) interests in SLT and pure nicotine in Europe from the 1970s to the present, comparing them with TTCs' public claims of support for harm reduction.
Methods and Results
Internal tobacco industry documents (in total 416 documents dating from 1971 to 2009), obtained via searching the online Legacy Tobacco Documents Library, were analysed using a hermeneutic approach. This library comprises documents obtained via litigation in the US and does not include documents from Imperial Tobacco, Japan Tobacco International, or Swedish Match. To help overcome this limitation and provide more recent data, we triangulated our documentary findings with contemporary documentation including TTC investor presentations. The analysis demonstrates that British American Tobacco explored SLT opportunities in Europe from 1971 driven by regulatory threats and health concerns, both likely to impact cigarette sales negatively, and the potential to create a new form of tobacco use among those no longer interested in taking up smoking. Young people were a key target. TTCs did not, however, make SLT investments until 2002, a time when EU cigarette volumes started declining, smoke-free legislation was being introduced, and public health became interested in harm reduction. All TTCs have now invested in snus (and recently in pure nicotine), yet both early and recent snus test markets appear to have failed, and little evidence was found in TTCs' corporate materials that snus is central to their business strategy.
Conclusions
There is clear evidence that BAT's early interest in introducing SLT in Europe was based on the potential for creating an alternative form of tobacco use in light of declining cigarette sales and social restrictions on smoking, with young people a key target. We conclude that by investing in snus, and recently nicotine, TTCs have eliminated competition between cigarettes and lower-risk products, thus helping maintain the current market balance in favour of (highly profitable) cigarettes while ensuring TTCs' long-term future should cigarette sales decline further and profit margins be eroded.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Every year, about 5 million people die from cancer, heart disease, and other tobacco-related diseases. In recent years, to reduce this growing loss of life, international and national bodies have drawn up various tobacco control conventions and directives. For example, the European Union (EU) Directives on tobacco control call for member states to ban tobacco advertising, promotion, and sponsorship and to adopt taxation policies aimed at reducing tobacco consumption. The 2001 EU Tobacco Products Directive also bans the sale of snus, a form of smokeless tobacco (SLT), in all EU countries except Sweden. Snus, which originated in Sweden in the early 19th century, is a moist tobacco product that is placed under the upper lip. Although snus is considerably less harmful than smoking, the sale of snus was banned in the EU in 1992 because of fears that it might cause cancer and was being marketed to young people. When Sweden joined the EU in 1994, exemption from the ban was made a condition of the membership treaty.
Why Was This Study Done?
Transnational tobacco companies (TTCs) have been investing in European snus manufacturers since 2002 and more recently in pure nicotine products, and it has been suggested that, faced with declining cigarette markets in Europe and elsewhere, TTCs are preparing for a “post-cigarette era”. Since 2008, TTCs have been lobbying EU member states and the European Commission to remove the ban on snus sales, arguing that public health would be improved if governments allowed potentially reduced-harm products like snus onto the market. At the end of 2012, however, the European Commission proposed that the ban on snus sales should be continued. Here, to help inform this controversial policy debate, the researchers explore the interest of TTCs in SLT and pure nicotine in Europe from the 1970s to the present by examining internal tobacco documents and compare these interests with public claims of support for harm reduction made by TTCs.
What Did the Researchers Do and Find?
By searching the Legacy Tobacco Documents Library (internal tobacco industry documents released following US litigation cases), the researchers identified 416 documents that detail the historical interest of TTCs in SLT and pure nicotine and their efforts to enter European markets, and to influence national and EU public-health policy. The researchers analyzed these documents using a “hermeneutic” approach—methodical reading and re-reading of the documents to identify themes and sub-themes. Finally, they used TTC investor presentations and other documents to confirm these themes and to provide recent data on TTC investment in SLT. British American Tobacco (BAT) explored the opportunities for marketing SLT products in Europe from 1971 onwards. This exploration was driven by regulatory threats and health concerns, both of which were likely to impact tobacco sales, and by the potential to create a new form of tobacco use among people no longer interested in taking up smoking. TTCs did not begin to invest in SLT, however, until 2002, a time when EU cigarette sale volumes started to decline, smoke-free legislation was being introduced, and tobacco harm reduction first became a major public-health issue. All the TTCs have now invested in snus even though snus test markets appear to have failed and even though there is little evidence in corporate materials that snus is central to the business strategy of TTCs.
What Do These Findings Mean?
These findings suggest that BAT's early interest in SLT in Europe was driven by business concerns and was based on the potential for creating an alternative form of tobacco use among people—particularly young people—who would no longer take up smoking because of health concerns. They also suggest that TTC investments in snus were defensive—by buying up snus manufacturers and more recently nicotine producers, TTCs have eliminated competition between cigarettes and lower-risk products, thereby helping to maintain the current market balance in favor of cigarettes while ensuring the long-term future of TTCs should cigarette sales decline further. Although these findings are limited by the possibility that some relevant documents may have been omitted from this analysis, they nevertheless raise the concern that, if TTC investment in SLT continues, competition between cigarettes and SLT will reduce the potential for harm reduction to benefit public health. Legalization of snus sales in the European Union may therefore have considerably less benefit than envisaged.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001506.
The World Health Organization provides information about the dangers of tobacco (in several languages) and about the Framework Convention on Tobacco Control, an international treaty for tobacco control; for information about the tobacco industry's influence on policy, see the 2009 World Health Organization report Tobacco interference with tobacco control
Details of European Union legislation on the manufacture, presentation, and sale of tobacco products is available (in several languages)
Wikipedia has pages on tobacco harm reduction and on snus (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
The Legacy Tobacco Documents Library is a searchable public database of tobacco company internal documents detailing their advertising, manufacturing, marketing, sales, and scientific activities
The UK Centre for Tobacco Control Studies is a network of UK universities that undertakes original research, policy development, advocacy, and teaching and training in the field of tobacco control
SmokeFree, a website provided by the UK National Health Service, offers advice on quitting smoking and includes personal stories from people who have stopped smoking
Smokefree.gov, from the US National Cancer Institute, offers online tools and resources to help people quit smoking
TobaccoTactics.org, an online resource managed by the University of Bath, provides up-to-date information on the tobacco industry and their tactics to influence tobacco regulation
doi:10.1371/journal.pmed.1001506
PMCID: PMC3769209  PMID: 24058299
8.  Health-related quality of life in family members of patients with an advanced cancer diagnosis: A one-year prospective study 
Background
Receiving a cancer diagnosis affects family members as well as the person diagnosed. Family members often provide support for the sick person in daily life out of duty and love, and may not always think of their own vulnerability to illness. To individualise support for them, family members who are most at risk for becoming ill must be identified.
The aim of this study was to investigate health-related quality of life (HRQOL) in family members of patients with advanced lung or gastrointestinal cancer 3 to 15 months after diagnosis.
Methods
Data on mental and physical dimensions of HRQOL were collected from family members of these patients in this prospective quantitative study. Five assessments using the Short Form 36 Health Survey (SF-36) and EuroQol (EQ-5D) were conducted during a 1-year period starting 3 months after diagnosis. Thirty-six family members completed the study, i.e. participated in all five data collections.
Results
No statistically significant changes in physical or mental HRQOL within the study group appeared over the 1-year follow-up. Compared with norm-based scores, family members had significantly poorer mental HRQOL scores throughout the year as measured by the SF-36. Family members also scored statistically significantly worse on the EQ-5D VAS in all five assessments compared to the norm-based score. Findings showed that older family members and partners were at higher risk for decreased physical HRQOL throughout the 1-year period, and younger family members were at higher risk for poorer mental HRQOL.
Conclusions
It is well known that ill health is associated with poor HRQOL. By identifying family members with poor HRQOL, those at risk of ill health can be identified and supported. Future large-scale research that verifies our findings is needed before making recommendations for individualised support and creating interventions best tailored to family members at risk for illness.
doi:10.1186/1477-7525-10-89
PMCID: PMC3489687  PMID: 22846452
Family member; Advanced cancer; Health-related quality of life; Mental health dimension; Physical health dimension
9.  Practising family medicine for adults with intellectual disabilities 
Canadian Family Physician  2014;60(7):e356-e361.
Abstract
Objective
To explore the perspectives of adults with intellectual disabilities (IDs) on helpful interactions with their family physicians.
Design
Exploratory, qualitative study.
Setting
Vancouver, BC.
Participants
Purposive sample of 11 community-dwelling adults with IDs.
Methods
In-depth, semistructured interviews were conducted face to face with participants. Interviews were audiorecorded and transcribed verbatim. Research team members read the transcripts, which were then coded into categories and subcategories and discussed at collective analysis meetings. The main study themes were generated through this iterative, collective process.
Main findings
Two themes about helpful interactions were identified: helping patients understand and helping patients navigate the health care system. The first theme reflected helpful ways of communicating with patients with IDs. These approaches focused on plain-language communication and other strategies developed jointly by the patients and their physicians. The second theme reflected ways in which the family physicians helped adults with IDs manage their health needs despite the complex constraints of their socioeconomic situations.
Conclusion
Adults with IDs want to play an active role in managing their health as they age, and helpful interactions with family physicians make this possible.
PMCID: PMC4096281  PMID: 25022654
10.  Exploration of transitional life events in individuals with Friedreich ataxia: Implications for genetic counseling 
Abstract
Background
Human development is a process of change, adaptation and growth. Throughout this process, transitional events mark important points in time when one's life course is significantly altered. This study captures transitional life events brought about or altered by Friedreich ataxia, a progressive chronic illness leading to disability, and the impact of these events on an affected individual's life course.
Methods
Forty-two adults with Friedreich ataxia (18-65y) were interviewed regarding their perceptions of transitional life events. Data from the interviews were coded and analyzed thematically using an iterative process.
Results
Identified transitions were either a direct outcome of Friedreich ataxia, or a developmental event altered by having the condition. Specifically, an awareness of symptoms, fear of falling and changes in mobility status were the most salient themes from the experience of living with Friedreich ataxia. Developmental events primarily influenced by the condition were one's relationships and life's work.
Conclusions
Friedreich ataxia increased the complexity and magnitude of transitional events for study participants. Transitional events commonly represented significant loss and presented challenges to self-esteem and identity. Findings from this study help alert professionals of potentially challenging times in patients' lives, which are influenced by chronic illness or disability. Implications for developmental counseling approaches are suggested for genetic counseling.
Background
Human development can be described in terms of key transitional events, or significant times of change. Transitional events initiate shifts in the meaning or direction of life and require the individual to develop skills or utilize coping strategies to adapt to a novel situation [1,2]. A successful transition has been defined as the development of a sense of mastery over the changed event [3].
Transitions can be influenced by a variety of factors including one's stage of development, such as graduation from high school, historical events, including war, and idiosyncratic factors, such as health status [4,5]. Of particular interest in the present study are transitional life events, brought about or altered by progressive chronic illness and disability, and the impact of these events on the lives of affected individuals.
It has been recognized that the clinical characteristics of a chronic illness or disability may alter the course and timing of many developmentally-related transitional events [6]. For example, conditions associated with a shortened lifespan may cause an individual to pursue a career with a shorter course of training [6]. Specific medical manifestations may also promote a lifestyle incongruent with developmental needs [6,7]. For example, an adolescent with a disability may have difficulty achieving autonomy because of his/her physical dependence on others.
In addition to the aforementioned effects of chronic illness and disability on developmentally-related transitional events, a growing body of literature has described disease-related transitional events: those changes that are a direct result of chronic illness and disability. Diagnosis has received attention as being a key disease-related transitional event [8,9]. Studies have also noted other disease transitions related to illness trajectory [10], as the clinical features of the disease may require the individual to make specific adaptations. Disease-related events have also been described in terms of accompanying psychological processes, such as one's awareness of differences brought about by illness [11].
While disease-related events are seemingly significant, the patient's perception of the events is varied. Some events may be perceived as positive experiences for the individual. For example, a diagnosis may end years of uncertainty. Some individuals may perceive these transitional events as insignificant, as they have accommodated to the continual change brought about by a chronic disease [12,13].
The aforementioned impact of disability and chronic illness on transitional events may create psychological stress. Developed by Lazarus and Folkman, the Transitional Model of Stress and Coping describes the process of adaptation to a health condition [14]. This model purports that individuals first appraise a stressor and then utilize a variety of coping strategies in order to meet the stressor's demands [14]. Thus, in the context of chronic illness, the ability of the individual to cope successfully with the stress of a health threat contributes to the process of overall adaptation to the condition.
The process of adaptation can be more complex when the chronic illness or disability is progressive. Each transition brought about or altered by the disability may also represent additional loss, including the loss of future plans, freedom in social life and the ability to participate in hobbies [15]. These losses may be accompanied by grief, uncertainty, and a continual need for adaptation [16,17].
Friedreich ataxia (FRDA) is one example of a progressive disorder, leading to adolescent and adult onset disability. To better understand patients' perceptions of key transitional events and the factors perceived to facilitate progression through these events, individuals with FRDA were interviewed.
FRDA is a rare, progressive, neurodegenerative disorder affecting approximately one in 30,000 people in the United States [18]. It equally affects both men and women. Individuals with FRDA experience progressive muscle weakness and loss of coordination in the arms and legs. For most patients, ataxia leads to motor incapacitation and full-time use of a wheelchair, commonly by the late teens or early twenties. Other complications such as vision and hearing impairment, dysarthria, scoliosis, diabetes mellitus and hypertrophic cardiomyopathy may occur [19,20]. Cardiomyopathy and respiratory difficulties often lead to premature death at an average age of 37 years [21]. Currently, there are no treatments or cures for FRDA. Little is known about the specific psychological or psychosocial effects of the condition.
FRDA is an autosomal recessive condition. The typical molecular basis of Friedreich ataxia is the expansion of a GAA trinucleotide repeat in both copies of the FXN gene [22]. Age of onset usually occurs in late childhood or early adolescence. However, the availability of genetic testing has identified affected individuals with an adult form of the condition. This late-onset form is thought to represent approximately 10-15% of the total FRDA population [23].
Health care providers of individuals with progressive, neurodegenerative disorders can help facilitate their patients' progression through transitional events. Data suggest that improvements should be made in the care of these individuals. Shaw et al. [24] found that individualized care that helps to prepare patients for transition is beneficial. Beisecker et al. [25] found that patients desire not only physical care from their providers, but also emotional and psychosocial support.
Genetic counselors have an important opportunity to help patients with neuromuscular disorders progress through transitional events, as several of these conditions have a genetic etiology. Genetic counselors in pediatric and adult settings often develop long-term relationships with patients, due to follow-up care. This extended relationship is becoming increasingly common as genetic counselors move into various medical sub-specialties, such as neurology, ophthalmology, oncology and cardiology.
The role of the genetic counselor in addressing the psychosocial needs of patients has been advocated, but rarely framed in the context of developmental events [26]. Data suggest that patients may not expect a genetic counselor to address psychosocial needs [27]. In a survey of genetic counseling patients, Wertz [28] found a majority of respondents understood genetic conditions to have a moderate to serious effect on family life and finances, while almost half perceived there to be an effect on the spouse, quality of life, and the relationship between home and work. However, these topics were reportedly not discussed within genetic counseling sessions [27,28]. Overall, there is limited information about the experiences of transitional life events in FRDA, as well as a lack of recommendations for genetic counselors and other health care providers to assist patients through these events.
Our study investigated perceptions of patients with Friedreich ataxia to 1) identify key transitional events and specific needs associated with events; 2) describe perception of factors to facilitate progression through the identified events; and 3) explore the actual or potential role of the health care provider in facilitating adaptation to the identified events. Data were used to make suggestions for developmental genetic counseling approaches in the context of ongoing care of clients with hereditary, progressive, neurodegenerative conditions.
doi:10.1186/1744-9081-6-65
PMCID: PMC2987979  PMID: 20979606
11.  Cancer-related pain in older adults receiving palliative care: Patient and family caregiver perspectives on the experience of pain 
BACKGROUND:
Despite an emphasis on pain management in palliative care, pain continues to be a common problem for individuals with advanced cancer. Many of those affected are older due to the disproportionate incidence of cancer in this age group. There remains little understanding of how older patients and their family caregivers perceive patients’ cancer-related pain, despite its significance for pain management in the home setting.
OBJECTIVES:
To explore and describe the cancer pain perceptions and experiences of older adults with advanced cancer and their family caregivers.
METHODS:
A qualitative descriptive approach was used to describe and interpret data collected from semistructured interviews with 18 patients (≥65 years of age) with advanced cancer receiving palliative care at home and their family caregivers.
RESULTS:
The main category ‘Experiencing cancer pain’ incorporated three themes. The theme ‘Feeling cancer pain’ included the sensory aspects of the pain, its origin and meanings attributed to the pain. A second theme, ‘Reacting to cancer pain’, included patients’ and family caregivers’ behavioural, cognitive (ie, attitudes, beliefs and control) and emotional responses to the pain. A third theme, ‘Living with cancer pain’ incorporated individual and social-relational changes that resulted from living with cancer pain.
CONCLUSIONS:
The findings provide an awareness of cancer pain experienced by older patients and their family caregivers within the wider context of ongoing relationships, increased patient morbidity and other losses common in the aged.
PMCID: PMC3917792  PMID: 23957019
Aging; Cancer; Caregiver; Pain; Palliative; Relationship
12.  Bereavement in the Context of Serious Mental Illness 
Objective
This study examined whether the situational factors that contribute to severe grief in the general population predicted the severity of grief in a sample of persons who had diagnoses of serious mental illness.
Method
Research participants who had a diagnosis of a serious mental illness and who reported the death of a close friend or family member during a five-year service evaluation project were asked to detail the circumstances that surrounded the death and to rate how the death affected their lives. Key research measures included the self-rated measurement of the impact of the death, the self-rated measurement of the duration of the reported grief, and scores on a psychiatric symptom assessment in the six months after the death. A regression analysis tested the cumulative count of four situational factors—residing with the close friend or family member at the time of the death, the suddenness of the death, having low social support, and having concurrent stressors—as a predictor of severe and prolonged grief.
Results
In the sample of 148 individuals with serious mental illness, 33 (22 percent) reported the death of a close friend or family member as a significant life event that resulted in relatively acute and brief grief (15 individuals, or 10 percent) or severe and prolonged grief (18 individuals, or 12 percent). The regression analysis confirmed that the more situational factors that occurred at the time of the death, the more severe the grief reaction was, irrespective of psychiatric symptomatology.
Conclusions
Mental health services for persons with serious mental illness should begin to incorporate preparation for parental death and bereavement counseling as essential services, and such interventions should approach bereavement as a normal rather than a pathological response to interpersonal loss.
PMCID: PMC2759894  PMID: 15067155
13.  Complexity in Non-Pharmacological Caregiving Activities at the End of Life: An International Qualitative Study 
PLoS Medicine  2012;9(2):e1001173.
In a qualitative study reported by Olav Lindqvist and colleagues, the range of nonpharmacological caregiving activities used in the last days of a patient's life are described.
Background
In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life.
Methods and Findings
Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings.
Conclusions
Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
End-of-life care is a major public health issue, yet despite the inevitability of death, issues related to death and dying are often taboo, and, if mentioned, are often referred to as “palliative care.” There are detailed definitions of palliative care, but in essence, the purpose of palliative care is to relieve any suffering in patients who are dying from progressive illness and to provide the best possible quality of life for both the patient and his or her family. In order to achieve this aim, both pharmacological and non-pharmacological management is necessary, with the latter taking a central role. Recently, a European Commission Seventh Framework Programme project, OPCARE9, aimed to improve the care of dying patients in Europe and beyond by optimizing research and clinical care for patients with cancer in the last days of their life, especially regarding well-being and comfort as death becomes imminent.
Why Was This Study Done?
There is now a growing literature base in non-pharmacological management at the end of an individual's life, particularly in relation to psychological, ethical, and communication issues as well as family-focused and culturally appropriate care. Despite this progress, there is currently little systematic knowledge in how health workers use such non-pharmacological approaches in their efforts to maximize well-being and comfort in patients experiencing their very last days of life. Therefore, in order to advance knowledge in this important clinical area, in this study the researchers reviewed and identified the variety of non-pharmacological caregiving activities performed by different professionals in the last days and hours of life for patients with cancer (and their families) in palliative care settings in the countries that participated in OPCARE9.
What Did the Researchers Do and Find?
The researchers modified an anthropological approach to collect relevant information in participating European countries—Germany, Italy, the Netherlands, Slovenia, Sweden, Switzerland, and the UK—and Argentina and New Zealand. Staff in palliative care settings generated a list of non-pharmacological caregiving activities after discussion about which interventions and activities they carried out with patients and families during the last days of life. This preliminary list of statements was added to if staff performed a new activity when in contact with patients or the patients' family during the last days of life. The researchers then used computer-assisted qualitative data analysis to code the statements.
Using this methodology, the researchers analyzed 914 statements of caregiving activities from 16 different facilities in nine countries. The greatest number of activities described some type of caregiving for an individual carried out through contact with his or her body, such as attending to diverse bodily needs (such as cleaning and moisturizing) while maintaining comfort and dignity. Listening, talking with, and understanding (particularly between professionals and the family) was the next most frequent activity, followed by creating an esthetical, safe, and pleasing environment for the dying person and his or her family, and necessary “backstage” activities, such as organizing paperwork or care plans. Other common activities included observing and assessing, which were often described as being carried out simultaneously with other interventions; just being present (described as increasingly important close to death); performing rituals surrounding death and dying (usually directed to families); guiding and facilitating (encompassing support in a compassionate manner); and finally, giving oral and written information and advice (usually to families).
What Do These Findings Mean?
These findings show that providing for fundamental human needs close to death is complex and sophisticated but ultimately integrated into a common theme of caregiving. This study also identifies a number of areas needing further investigation, such as enhancing the sensory and general environment for the patient and family. Finally, this study suggests that developing a greater level of detail, such as improved terminology for end-of-life care, would enhance appreciation of the nuances and complexity present in non-pharmacological care provision during the last days of life, with potential benefit for clinical practice, teaching, and research.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001173.
The OPCARE9 website details more information about this end-of-life care initiative
The World Health Organization website defines palliative care, and Wikipedia gives more information (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
NHS Choices also provides information about end-of-life care
doi:10.1371/journal.pmed.1001173
PMCID: PMC3279347  PMID: 22347815
14.  Explaining Adherence Success in Sub-Saharan Africa: An Ethnographic Study 
PLoS Medicine  2009;6(1):e1000011.
Background
Individuals living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of prescribed doses of antiretroviral therapy (ART). This number exceeds the levels of adherence observed in North America and dispels early scale-up concerns that adherence would be inadequate in settings of extreme poverty. This paper offers an explanation and theoretical model of ART adherence success based on the results of an ethnographic study in three sub-Saharan African countries.
Methods and Findings
Determinants of ART adherence for HIV-infected persons in sub-Saharan Africa were examined with ethnographic research methods. 414 in-person interviews were carried out with 252 persons taking ART, their treatment partners, and health care professionals at HIV treatment sites in Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda. 136 field observations of clinic activities were also conducted. Data were examined using category construction and interpretive approaches to analysis. Findings indicate that individuals taking ART routinely overcome economic obstacles to ART adherence through a number of deliberate strategies aimed at prioritizing adherence: borrowing and “begging” transport funds, making “impossible choices” to allocate resources in favor of treatment, and “doing without.” Prioritization of adherence is accomplished through resources and help made available by treatment partners, other family members and friends, and health care providers. Helpers expect adherence and make their expectations known, creating a responsibility on the part of patients to adhere. Patients adhere to promote good will on the part of helpers, thereby ensuring help will be available when future needs arise.
Conclusion
Adherence success in sub-Saharan Africa can be explained as a means of fulfilling social responsibilities and thus preserving social capital in essential relationships.
Using ethnographic data from Nigeria, Tanzania, and Uganda, Norma Ware and colleagues examine why levels of adherence to HIV/AIDS drugs are so much higher in sub-Saharan Africa than in North America.
Editors' Summary
Background.
The acquired immunodeficiency syndrome (AIDS) epidemic has killed more than 25 million people since 1981, and about 30 million people (22 million in sub-Saharan Africa alone) are currently infected with the human immunodeficiency virus (HIV), which causes AIDS. HIV destroys immune system cells, leaving infected individuals susceptible to other infections. Early in the AIDS epidemic, most HIV-infected individuals died within ten years but in 1996, combination antiretroviral therapy (ART)—a mixture of powerful drugs—was developed. For HIV-infected people living in affluent, developed countries, HIV/AIDS became a chronic disease, but for the millions of infected people living in low- and middle-income countries, HIV/AIDS remained a death sentence—ART was simply too expensive. In 2003, this situation was declared a global health emergency. Today, through the concerted efforts of governments, international organizations, and funding bodies, nearly one-third of the people in developing and transitional countries who are in immediate need of life-saving ART receive free, reliable supplies of the drugs they need.
Why Was This Study Done?
For ART to work, it must be taken regularly. If drug doses are missed, the virus can rebound and resistance to ART is more likely to develop. In poor countries, even though free antiretroviral drugs are increasingly available, many obstacles to good adherence to ART remain. These include economic obstacles (for example, the cost of traveling to clinics and the loss of earning associated with clinic attendance), and social, cultural, and behavioral barriers. Some patients fear disclosure, for example. Others receive conflicting messages about the benefits of ART. However, despite worries that the scale-up of ART provision in developing countries would be dogged by inadequate adherence, people living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of their prescribed doses of ART, a better level of adherence than in North America. In this study, the researchers investigate why ART adherence is so high in sub-Saharan Africa by analyzing qualitative data from an ethnographic study done in Nigeria, Tanzania, and Uganda. Qualitative data are often used to address “how” and “why” research questions: ethnography is a comprehensive qualitative approach to describing and explaining human behavior and culture.
What Did the Researchers Do and Find?
For their study, the researchers interviewed 158 patients, 45 treatment partners (lay-people who help HIV-positive people keep to their treatment), and 49 health care workers. Patients were asked about their experiences of ART and about the help they received from their treatment partners; partners were asked about the type of help they gave and about their feelings about this help; health care workers were asked to describe a typical clinic visit and to indicate how adherence was discussed. From these interviews and observations of clinic sessions, the researchers identified several strategies used by patients and their treatment partners to overcome economic obstacles to ART adherence. These included borrowing and “begging” funds to pay for travel to clinics and making “impossible choices” to prioritize adherence, and “doing without.” The researchers' analysis also indicates that the prioritization of adherence to ART reflects the importance of relationships as a resource for managing economic hardship. So, for example, they found that treatment partners and health care workers expected patients to adhere to ART (which, by improving patients' health, improves their ability to support themselves and their families) and made their expectations known, thereby creating a responsibility among patients to adhere. Patients, in turn, adhered to their treatment to promote good will from their helpers and thus ensure their continuing help.
What Do These Findings Mean?
The findings offer a possible explanation of adherence success in sub-Saharan Africa. The high level of adherence to ART can be explained as a means of fulfilling social responsibilities. Adherence, the researchers suggest, not only improves personal health (the main driver for ART adherence in resource-rich environments) but also preserves “social capital” in essential relationships. In other words, in sub-Saharan Africa, adherence to treatment may protect the relationships that individuals living in extreme poverty rely on to help them survive.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000011.
This study is further discussed in a PLoS Medicine Perspective by Agnes Binagwaho and Niloo Ratnayake
Information is available from the US National Institute of Allergy and Infectious Diseases on HIV infection and AIDS
HIV InSite has comprehensive information on all aspects of HIV/AIDS, including an article about to antiretroviral therapy
Information is available from Avert, an international AIDS charity, on HIV and AIDS in Africa (including detailed information on HIV/AIDS in Nigeria and Uganda) and on providing AIDS drug treatment for millions
The World Health Organization provides information about universal access to HIV treatment (in several languages)
The US Centers for Disease Control and Prevention also provides information on global efforts to deal with the HIV/AIDS pandemic
doi:10.1371/journal.pmed.1000011
PMCID: PMC2631046  PMID: 19175285
15.  Identifying the Factors That Facilitate or Hinder Advance Planning by Persons With Dementia 
We performed semistructured interviews with 30 family members of patients with advanced dementia to identify the factors that facilitate or hinder advance planning by persons with dementia. All interviews were analyzed using qualitative data analysis techniques. The majority (77%) of family members reported that their relative had some form of written advance directive, and at least half reported previous discussions about health care preferences (57%), living situation or placement issues (50%), and finances or estate planning (60%) with the patient. Family members reported some themes that prompted planning and others that were barriers to planning. Events that most often triggered planning were medical, living situation, or financial issues associated with a friend or family member of the patient (57%). Barriers to planning included both passive and active avoidance. The most common form of passive avoidance was not realizing the importance of planning until it was too late to have the discussion (63%). The most common form of active avoidance was avoiding the discussion (53%). These data suggest potentially remediable strategies to address barriers to advance planning discussions.
doi:10.1097/WAD.0b013e318169d669
PMCID: PMC2666935  PMID: 18580595
advance care planning; Alzheimer disease; decision making; advance directives
16.  Family Diabetes Matters: A View from the Other Side 
ABSTRACT
BACKGROUND
Typically, chronic disease self-management happens in a family context, and for African American adults living with diabetes, family seems to matter in self-management processes. Many qualitative studies describe family diabetes interactions from the perspective of adults living with diabetes, but we have not heard from family members.
OBJECTIVE
To explore patient and family perspectives on family interactions around diabetes.
DESIGN
Qualitative study using focus group methodology.
PARTICIPANTS & APPROACH
We conducted eight audiotaped focus groups among African Americans (four with patients with diabetes and four with family members not diagnosed with diabetes), with a focus on topics of family communication, conflict, and support. The digital files were transcribed verbatim, coded, and analyzed using qualitative data analysis software. Directed content analysis and grounded theory approaches guided the interpretation of code summaries.
RESULTS
Focus groups included 67 participants (81 % female, mean age 64 years). Family members primarily included spouses, siblings, and adult children/grandchildren. For patients with diabetes, central issues included shifting family roles to accommodate diabetes and conflicts stemming from family advice-giving. Family members described discomfort with the perceived need to police or “stand over” the diabetic family member, not wanting to “throw diabetes in their [relative’s] face,” perceiving their communications as unhelpful, and confusion about their role in diabetes care. These concepts generated an emergent theme of “family diabetes silence.”
CONCLUSION
Diabetes silence, role adjustments, and conflict appear to be important aspects to address in family-centered diabetes self-management interventions. Contextual data gathered through formative research can inform such family-centered intervention development.
Electronic supplementary material
The online version of this article (doi:10.1007/s11606-012-2230-2) contains supplementary material, which is available to authorized users.
doi:10.1007/s11606-012-2230-2
PMCID: PMC3579978  PMID: 23054922
family interactions; type 2 diabetes; qualitative research; African Americans
17.  Why Do Women Not Use Antenatal Services in Low- and Middle-Income Countries? A Meta-Synthesis of Qualitative Studies 
PLoS Medicine  2013;10(1):e1001373.
In a synthesis of 21 qualitative studies representing the views of more than 1,230 women from 15 countries, Kenneth Finlayson and Soo Downe examine the reasons why many women in low- and middle-income countries do not receive adequate antenatal care.
Background
Almost 50% of women in low- and middle-income countries (LMICs) don't receive adequate antenatal care. Women's views can offer important insights into this problem. Qualitative studies exploring inadequate use of antenatal services have been undertaken in a range of countries, but the findings are not easily transferable. We aimed to inform the development of future antenatal care programmes through a synthesis of findings in all relevant qualitative studies.
Methods and Findings
Using a predetermined search strategy, we identified robust qualitative studies reporting on the views and experiences of women in LMICs who received inadequate antenatal care. We used meta-ethnographic techniques to generate themes and a line-of-argument synthesis. We derived policy-relevant hypotheses from the findings. We included 21 papers representing the views of more than 1,230 women from 15 countries. Three key themes were identified: “pregnancy as socially risky and physiologically healthy”, “resource use and survival in conditions of extreme poverty”, and “not getting it right the first time”. The line-of-argument synthesis describes a dissonance between programme design and cultural contexts that may restrict access and discourage return visits. We hypothesize that centralised, risk-focused antenatal care programmes may be at odds with the resources, beliefs, and experiences of pregnant women who underuse antenatal services.
Conclusions
Our findings suggest that there may be a misalignment between current antenatal care provision and the social and cultural context of some women in LMICs. Antenatal care provision that is theoretically and contextually at odds with local contextual beliefs and experiences is likely to be underused, especially when attendance generates increased personal risks of lost family resources or physical danger during travel, when the promised care is not delivered because of resource constraints, and when women experience covert or overt abuse in care settings.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Although maternal deaths worldwide have almost halved since 1990, according to the latest figures, every day roughly 800 women and adolescent girls still die from the complications of pregnancy or childbirth: in 2010, 287,000 women died during or following pregnancy and childbirth, with almost all of these deaths (99%) occurring in low-resource settings. Most maternal deaths are avoidable, as the interventions to prevent or manage the most common complications (severe bleeding, infections, high blood pressure during pregnancy, and unsafe abortion) are well known. Furthermore, many of these complications can be prevented, detected, or treated during antenatal care visits with trained health workers.
Why Was This Study Done?
The World Health Organization (WHO) recommends a minimum of four antenatal visits per pregnancy, but according to WHO figures, between 2005 and 2010 only 53% of pregnant women worldwide attended the recommended four antenatal visits; in low-income countries, this figure was a disappointing 36%. Unfortunately, despite huge international efforts to promote and provide antenatal care, there has been little improvement in these statistics over the past decade. It is therefore important to investigate the reasons for poor antenatal attendance and to seek the views of users of antenatal care. In this study, the researchers combined studies from low- and middle-income countries (LMICs) that included women's views on antenatal care in a meta-synthesis of qualitative studies (qualitative research uses techniques, such as structured interviews, to gather an in-depth understanding of human behaviour, and a meta-synthesis combines and interprets information across studies, contexts, and populations).
What Did the Researchers Do and Find?
The researchers searched several medical, sociological, and psychological databases to find appropriate qualitative studies published between January 1980 and February 2012 that explored the antenatal care experiences, attitudes, and beliefs of women from LMICs who had chosen to access antenatal care late (after 12 weeks' gestation), infrequently (less than four times), or not at all. The researchers included 21 studies (out of the 2,997 initially identified) in their synthesis, representing the views of 1,239 women from 15 countries (Bangladesh, Benin, Cambodia, Gambia, India, Indonesia, Kenya, Lebanon, Mexico, Mozambique, Nepal, Pakistan, South Africa, Tanzania, and Uganda) who were either interviewed directly or gave their opinion as part of a focus group.
The researchers identified three main themes. The first theme reflects women's views that pregnancy is a healthy state and so saw little reason to visit health professionals when they perceived no risk to their well-being—the researchers called this theme, “pregnancy as socially contingent and physiologically healthy.” The second theme relates to women's limited financial resources, so that even when antenatal care was offered free of charge, the cost of transport to get there, the loss of earnings associated with the visit, and the possibility of having to pay for medicines meant that women were unable to attend—the researchers called this theme “resource use and survival in conditions of extreme poverty.” The third theme the researchers identified related to women's views that the antenatal services were inadequate and that the benefits of attending did not outweigh any potential harms. For example, pregnant women who initially recognized the benefits of antenatal care were often disappointed by the lack of resources they found when they got there and, consequently, decided not to return. The researchers called this theme “not getting it right the first time.”
What Do These Findings Mean?
These findings suggest that there may be a misalignment between the principles that underpin the provision of antenatal care and the beliefs and socio-economic contexts of pregnant women in LMICs, meaning that even high-quality antenatal care may not be used by some pregnant women unless their views and concerns are addressed. The themes identified in this meta-synthesis could provide the basis for a new approach to the design and delivery of antenatal care that takes local beliefs and values and resource availability into account. Such programs might help ensure that antenatal care meets pregnant women's expectations and treats them appropriately so that they want to regularly attend antenatal care.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001373.
Wikipedia describes antenatal care (note that Wikipedia is a free online encyclopedia that anyone can edit)
The World Health Organization has a wealth of information relating to pregnancy, including antenatal care
The UK National Institute for Health and Clinical Excellence has evidence-based guidelines on antenatal care
The White Ribbon Alliance for Safe Motherhood has a series of web pages and links relating to respectful maternity care in LMICs
International Federation of Gynecology and Obstetrics is an international organization with connections to various maternity initiatives in LMICs
International Confederation of Midwives has details of the Millennium Development Goals relating to maternity care
doi:10.1371/journal.pmed.1001373
PMCID: PMC3551970  PMID: 23349622
18.  Discussions of “code status” on a family practice teaching ward: What barriers do family physicians face? 
Background
Patients want physicians to ascertain their wishes related to resuscitation, yet such discussions of “code status” are often delayed in the hospital setting, which compromises patient autonomy. Few studies have examined family physicians' views on this topic. Our objectives were to explore the experiences of family physicians and family practice residents in establishing code status with their patients who had been admitted to hospital and to identify barriers to these discussions.
Methods
Semistructured, in-depth interviews were conducted with 5 family physicians and 5 family practice residents admitting patients to a family practice teaching ward in a university-affiliated urban tertiary care hospital. Interview transcripts were analysed inductively, and grounded theory was used to identify conceptual categories and recurring themes. Key findings were validated by means of member checking with participants, consensus meetings of the research team and consultation with qualitative researchers.
Results
Barriers to code-status discussions included personal discomfort with confronting mortality, fear of damaging the doctor–patient relationship or harming the patient by raising the topic of death, limited time to establish trust, and difficulty in managing complex family dynamics. In spite of these challenges, family physicians and residents viewed discussions of resuscitation as a significant part of their role.
Interpretation
Family physicians and residents need to develop personal awareness about difficulties in confronting mortality, enhance their communication strategies for broaching the topic of code status in the context of a trusting doctor–patient relationship and sharpen their skills in understanding and managing family dynamics related to end-of-life decisions. Awareness of the barriers to code-status discussions can inform research, education and hospital policy. Consultation with patients is needed to develop effective communication strategies.
PMCID: PMC80314  PMID: 11107460
19.  Case managers for older persons with multi-morbidity and their everyday work – a focused ethnography 
Background
Modern-day health systems are complex, making it difficult to assure continuity of care for older persons with multi-morbidity. One way of intervening in a health system that is leading to fragmented care is by utilising Case Management (CM). CM aims to improve co-ordination of healthcare and social services. To better understand and advance the development of CM, there is a need for additional research that provides rich descriptions of CM in practice. This knowledge is important as there could be unknown mechanisms, contextual or interpersonal, that contribute to the success or failure of a CM intervention. Furthermore, the CM intervention in this study is conducted in the context of the Swedish health system, which prior to this intervention was unfamiliar with this kind of coordinative service. The aim of this study was to explore the everyday work undertaken by case managers within a CM intervention, with a focus on their experiences.
Methods
The study design was qualitative and inductive, utilising a focused ethnographic approach. Data collection consisted of participant observations with field notes as well as a group interview and individual interviews with nine case managers, conducted in 2012/2013. The interviews were recorded, transcribed verbatim and subjected to thematic analysis.
Results
An overarching theme emerged from the data: Challenging current professional identity, with three sub-themes. The sub-themes were 1) Adjusting to familiar work in an unfamiliar role; 2) Striving to improve the health system through a new role; 3) Trust is vital to advocacy.
Conclusions
Findings from this study shed some light on the complexity of CM for older persons with multi-morbidity, as seen from the perspective of case managers. The findings illustrate how their everyday work as case managers represents a challenge to their current professional identity. These findings could help to understand and promote the development of CM models aimed at a population of older persons with complex health needs.
doi:10.1186/1472-6963-13-496
PMCID: PMC3893533  PMID: 24279695
Case manager; Case management; Continuity of care; Ethnography; Focused ethnography; Intervention; Multi-morbidity; Older persons; Thematic analysis
20.  Frequency of Substance Abuse Among Adolescents 
Materia Socio-Medica  2013;25(4):265-269.
Introduction:
Drug addiction is one of the most prominent problems in many countries in transition, including Bosnia and Herzegovina. Age limit of drug addiction is shifted to the younger age groups, especially is troubling the increase in number of injection drug users. Our study was aimed to investigate the habits, attitudes and practices related to drug use among young people from the area of Sarajevo city. We can still feel the effects of the war, among which are the most important life without closest relatives, banishment and various types of war and post-war trauma.
Goals:
To determine the frequency of substance abuse among adolescents; Identify potentially relevant biological, psychological and socio economic characteristics of the adolescents; To explore adolescents attitudes towards drug use; Examine the general level of knowledge of adolescents about drugs and their effects.
Material and Methods:
The study was conducted on randomized sample of 502 students in two primary and three secondary schools in Sarajevo and Gracanica. To study used survey method. Survey instrument was a self-made questionnaire with the research variables. The obtained data were processed by a computer and statistically correlated. The study is of combined, retrospective, prospective and transversal type.
Results:
To the question “How many times have you consumed cannabis in the last 30 days” about 6% of the respondents have tried once or twice, while 1.5% use it daily, ecstasy have tried one or two times 2.25%, while 0.5% have daily use. Based on the obtained results it can be concluded that students at schools in Sarajevo consumed drugs 50% more than the children in Gracanica. Analyzing the age at which the subjects consumed the drug for the first time, we came to the conclusion that in the third year of high school only 8% of adolescents have tried any drugs before they turned 15 years. This percentage among eighth graders is about three times higher.
Conclusion:
Presented research results clearly suggest a strong contamination of the living environment of young people with different types of psychoactive substances. Offer of drugs is extensive and distribution network covers all the places where young people visits, including schools. It is clear that today’s teenagers sooner or later hear about drugs, see, get in touch with a “junkie” and have a chance to take the drugs if they want to. From our research, we found that the following factors: Marital status of parents, employment of parents, the number of family members, type of school and satisfaction with oneself are not crucial for the eventual drug use among young people. While, the biological status of the parents, educational status of parents, financial status of parents, the tendency of parents tobacco and alcohol use, adolescents’ attitude to parents, the harmony of relationships between parents, school performance, positive attitude toward the so-called light drugs, represent significant risk factors for adolescent populations.
doi:10.5455/msm.2013.25.265-269
PMCID: PMC3914750  PMID: 24511272
Drug use; adolescence; risk and protective factors; Bosnia and Herzegovina.
21.  Family therapy sessions with refugee families; a qualitative study 
Background
Due to the armed conflicts in the Balkans in the 1990s many families escaped to other countries. The main goal of this study was to explore in more detail the complexity of various family members’ experiences and perceptions from their life before the war, during the war and the escape, and during their new life in Sweden. There is insufficient knowledge of refugee families’ perceptions, experiences and needs, and especially of the complexity of family perspectives and family systems. This study focused on three families from Bosnia and Herzegovina who came to Sweden and were granted permanent residence permits. The families had at least one child between 5 and 12 years old.
Method
Family therapy sessions were videotaped and verbatim transcriptions were made. Nine family therapy sessions were analysed using a qualitative method with directed content analysis.
Results
Three main categories and ten subcategories were found - 1. Everyday life at home, with two subcategories: The family, Work and School/preschool; 2. The influence of war on everyday life, with three subcategories: The war, The escape, Reflections; 3. The new life, with five subcategories: Employment, Health, Relatives and friends, Limited future, Transition to the new life.
Conclusions
Health care and social welfare professionals need to find out what kind of lives refugee families have lived before coming to a new country, in order to determine individual needs of support. In this study the families had lived ordinary lives in their country of origin, and after experiencing a war situation they escaped to a new country and started a new life. They had thoughts of a limited future but also hopes of getting jobs and taking care of themselves and their families. When analysing each person’s point of view one must seek an all-embracing picture of a family and its complexity to tie together the family narrative. To offer refugee families meetings with family-oriented professionals to provide the opportunity to create a family narrative is recommended for the health and social welfare sector. Using this knowledge by emphasizing the salutogenic perspectives facilitates support to refugee families and individuals. This kind of support can help refugee families to adapt to a new system of society and recapture a sense of coherence, including all three components that lead to coherence: comprehensibility, manageability and meaningfulness. More studies are needed to further investigate the thoughts, experiences and needs of various refugee families and how refugee receiving societies can give the most effective support.
doi:10.1186/1752-1505-7-7
PMCID: PMC3617022  PMID: 23537380
Migration; Refugee children; Family therapy; Qualitative method
22.  Hereditary Gastrointestinal Cancer Syndromes 
Gastrointestinal Cancer Research : GCR  2011;4(4 Suppl 1):S9-S17.
ABSTRACT
The rapid growth of molecular genetics and its attendant germline mutation discoveries has enabled identification of persons who are at an inordinately high cancer risk and, therefore, ideal candidates for prevention. However, one must fully appreciate the extensive genotypic and phenotypic heterogeneity that exists in hereditary cancer. Once the causative germline mutation has been identified in a patient, high-risk members of the family can be similarly tested and identified and provided highly targeted surveillance and management opportunities. DNA testing can change the individual's presumed risk status and affect decision making by patients and their physicians regarding surveillance and management. Our purpose is to describe familial/hereditary cancers of the gastrointestinal tract, including familial Barrett's esophagus, hereditary diffuse gastric cancer, gastrointestinal stromal tumors, familial adenomatous polyposis and desmoid tumors, Lynch syndrome, small bowel cancer, and familial pancreatic cancer. We use our discussion of Lynch syndrome as a model for diagnostic and clinical translation strategies for all hereditary gastrointestinal tract cancers, which clearly can then be extended to cancer of all anatomic sites. Highly pertinent questions from the patient's perspective include the following: What kind of counseling will be provided to a patient with a Lynch syndrome mutation, and should that counseling be mandatory? Does the proband have the responsibility to inform relatives about the familial mutation, even if the relatives do not want to know whether they carry it? Is the patient is responsible for notifying family members that a parent or sibling has Lynch syndrome? Can notification be forced and, if so, under what circumstances? These questions point out the need for criteria regarding which family members to inform and how to inform them.
PMCID: PMC3283002  PMID: 22368732
23.  Barriers and facilitating factors for disease self-management: a qualitative analysis of perceptions of patients receiving care for type 2 diabetes and/or hypertension in San José, Costa Rica and Tuxtla Gutiérrez, Mexico 
BMC Family Practice  2013;14:131.
Background
The burden of cardiovascular disease is growing in the Mesoamerican region. Patients’ disease self-management is an important contributor to control of cardiovascular disease. Few studies have explored factors that facilitate and inhibit disease self-management in patients with type 2 diabetes and hypertension in urban settings in the region. This article presents patients’ perceptions of barriers and facilitating factors to disease self-management, and offers considerations for health care professionals in how to support them.
Methods
In 2011, 12 focus groups were conducted with a total of 70 adults with type 2 diabetes and/or hypertension who attended urban public health centers in San José, Costa Rica and Tuxtla Gutiérrez, Chiapas, Mexico. Focus group discussions were transcribed and coded using a content analysis approach to identify themes. Themes were organized using the trans-theoretical model, and other themes that transcend the individual level were also considered.
Results
Patients were at different stages in their readiness-to-change, and barriers and facilitating factors are presented for each stage. Barriers to disease self-management included: not accepting the disease, lack of information about symptoms, vertical communication between providers and patients, difficulty negotiating work and health care commitments, perception of healthy food as expensive or not filling, difficulty adhering to treatment and weight loss plans, additional health complications, and health care becoming monotonous. Factors facilitating disease self-management included: a family member’s positive experience, sense of urgency, accessible health care services and guidance from providers, inclusive communication, and family and community support.
Financial difficulty, gender roles, differences by disease type, faith, and implications for families and their support were identified as cross-cutting themes that may add an additional layer of complexity to disease management at any stage. These factors also relate to the broader family and societal context in which patients live.
Conclusions
People living with type 2 diabetes and hypertension present different barriers and facilitating factors for disease self-management, in part based on their readiness-to-change and also due to the broader context in which they live. Primary care providers can work with individuals to support self-management taking into consideration these different factors and the unique situation of each patient.
doi:10.1186/1471-2296-14-131
PMCID: PMC3846574  PMID: 24007205
Cardiovascular health; Trans-theoretical model; Health promotion; Primary care
24.  Fulfillment of Work–Life Balance From the Organizational Perspective: A Case Study 
Journal of Athletic Training  2013;48(5):668-677.
Context:
Researchers studying work–life balance have examined policy development and implementation to create a family-friendly work environment from an individualistic perspective rather than from a cohort of employees working under the same supervisor.
Objective:
To investigate what factors influence work–life balance within the National Collegiate Athletic Association (NCAA) Division I clinical setting from the perspective of an athletic training staff.
Design:
Qualitative study.
Setting:
Web-based management system.
Patients or Other Participants:
Eight athletic trainers (5 men, 3 women; age = 38 ± 7 years) in the NCAA Division I setting.
Data Collection and Analysis:
Participants responded to a series of questions by journaling their thoughts and experiences. We included data-source triangulation, multiple-analyst triangulation, and peer review to establish data credibility. We analyzed the data via a grounded theory approach.
Results:
Three themes emerged from the data. Family-oriented and supportive work environment was described as a workplace that fosters and encourages work–life balance through professionally and personally shared goals. Nonwork outlets included activities, such as exercise and personal hobbies, that provide time away from the role of the athletic trainer. Individualistic strategies reflected that although the athletic training staff must work together and support one another, each staff member must have his or her own personal strategies to manage personal and professional responsibilities.
Conclusions:
The foundation for a successful work environment in the NCAA Division I clinical setting potentially can center on the management style of the supervisor, especially one who promotes teamwork among his or her staff members. Although a family-friendly work environment is necessary for work–life balance, each member of the athletic training staff must have personal strategies in place to fully achieve a balance.
doi:10.4085/1062-6050-48.3.24
PMCID: PMC3784369  PMID: 24067152
quality of life; support network; rejuvenation
25.  Safety threats and opportunities to improve interfacility care transitions: insights from patients and family members 
Aim
To explore patients’ and family members’ perspectives on how safety threats are detected and managed across care transitions and strategies that improve care transitions from acute care hospitals to complex continuing care and rehabilitation health care organizations.
Background
Poorly executed care transitions can result in additional health care spending due to adverse outcomes and delays as patients wait to transfer from acute care to facilities providing different levels of care. Patients and their families play an integral role in ensuring they receive safe care, as they are the one constant in care transitions processes. However, patients’ and family members’ perspectives on how safety threats are detected and managed across care transitions from health care facility to health care facility remain poorly understood.
Methods
This qualitative study used semistructured interviews with patients (15) and family members (seven) who were transferred from an acute care hospital to a complex continuing care/rehabilitation care facility. Data were analyzed using a directed content analytical approach.
Results
Our results revealed three key overarching themes in the perceptions: lacking information, getting “funneled through” too soon, and difficulty adjusting to the shift from total care to almost self-care. Several patients and families described their expectations and experiences associated with their interfacility care transitions as being uninformed about their transfer or that transfer happened too early. In addition, study participants identified the need for having a coordinated approach to care transitions that engages patients and family members.
Conclusion
Study findings provide patients’ and family members’ perspectives on key safety threats and how to improve care transitions. Of particular importance is the need for patients and family members to play a more active role in their care transition planning and self-care management.
doi:10.2147/PPA.S36797
PMCID: PMC3468168  PMID: 23055704
safety threats; patient and family perspectives; care transitions

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