Experiences of patient-centredness with specialized community-based care: a systematic review and qualitative meta-synthesis.

BACKGROUND: Specialized community-based care (SCBC) endeavours to help patients manage chronic diseases by formalizing the link between primary care providers and other community providers with specialized training. Many types of health care providers and community-based programs are employed in SCBC. Patient-centred care focuses on patients' psychosocial experience of health and illness to ensure that patients' care plans are modelled on their individual values, preferences, spirituality, and expressed needs. OBJECTIVES: To synthesize qualitative research on patient and provider experiences of SCBC interventions and health care delivery models, using the core principles of patient-centredness. DATA SOURCES: This report synthesizes 29 primary qualitative studies on the topic of SCBC interventions for patients with chronic conditions. Included studies were published between 2002 and 2012, and followed adult patients in North America, Europe, Australia, and New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Three core themes emerged from the analysis: patients' health beliefs affect their participation in SCBC interventions;patients' experiences with community-based care differ from their experiences with hospital-based care;patients and providers value the role of nurses differently in community-based chronic disease care. LIMITATIONS: Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across several qualitative studies builds an increasingly robust understanding that is more likely to be transferable. The diversity of interventions that fall under SCBC and the cross-interventional focus of many of the studies mean that findings might not be generalizable to all forms of SCBC or its specific components. CONCLUSIONS: Patients with chronic diseases who participated in SCBC interventions reported greater satisfaction when SCBC helped them better understand their diagnosis, facilitated increased socialization, provided them with a role in managing their own care, and assisted them in overcoming psychological and social barriers. PLAIN LANGUAGE SUMMARY: More and more, to reduce bed shortages in hospitals, health care systems are providing programs called specialized community-based care (SCBC) to patients with chronic diseases. These SCBC programs allow patients with chronic diseases to be managed in the community by linking their family physicians with other community-based health care providers who have specialized training. This report looks at the experiences of patients and health care providers who take part in SCBC programs, focusing on psychological and social factors. This kind of lens is called patient-centred. Three themes came up in our analysis: patients' health beliefs affect how they take part in SCBC interventions; patients' experiences with care in the community differ from their experiences with care in the hospital; patients and providers value the role of nurses differently. The results of this analysis could help those who provide SCBC programs to better meet patients' needs.

How diet modification challenges are magnified in vulnerable or marginalized people with diabetes and heart disease: a systematic review and qualitative meta-synthesis.

BACKGROUND: Diet modification is an important part of self-management for patients with diabetes and/or heart disease (including coronary artery disease, heart failure, and atrial fibrillation). Many health care providers and community-based programs advise lifestyle and diet modification as part of care for people with these conditions. This report synthesizes qualitative information on how patients respond differently to the challenges of diet modification. Qualitative and descriptive evidence can illuminate challenges that may affect the success and equitable impact of dietary modification interventions. OBJECTIVES: To (a) examine the diet modification challenges faced by diabetes and/or heart disease patients; and (b) compare and contrast the challenges faced by patients who are members of vulnerable and nonvulnerable groups as they change their diet in response to clinical recommendations. DATA SOURCES: This report synthesizes 65 primary qualitative studies on the topic of dietary modification challenges encountered by patients with diabetes and/or heart disease. Included papers were published between 2002 and 2012 and studied adult patients in North America, Europe, and Australia/New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Analysis identified 5 types of challenges that are common to both vulnerable and nonvulnerable patients: self-discipline, knowledge, coping with everyday stress, negotiating with family members, and managing the social significance of food. Vulnerable patients may experience additional barriers, many of which can magnify or exacerbate those common challenges. LIMITATIONS: While qualitative insights are robust and often enlightening for understanding experiences and planning services in other settings, they are not intended to be generalizable. The findings of the studies reviewed here--and of this synthesis--do not strictly generalize to the Ontario (or any specific) population. This evidence must be interpreted and applied carefully, in light of expertise and the experiences of the relevant community. CONCLUSIONS: Diet modification is not simply a matter of knowing what to eat and making the rational choice to change dietary practices. Rather, diet and eating practices should be considered as part of the situated lives of patients, requiring an individualized approach that is responsive to the conditions in which each patient is attempting to make a change. Common challenges include self-discipline, knowledge, coping with everyday stress, negotiating with family members, and managing the social significance of food. An individualized approach is particularly important when working with patients who have vulnerabilities. PLAIN LANGUAGE SUMMARY: Health care providers often encourage people with diabetes and/or heart disease to change their diet. They advise people with diabetes to eat less sugar, starch, and fat. They advise people with heart disease to eat less fat and salt. However, many patients find it difficult to change what they eat. This report examines the challenges people may face when making such changes. It also examines the special challenges faced by people who are vulnerable due to other factors, such as poverty, lack of education, and difficulty speaking English. Five themes were common to all people who make diet changes: self-discipline, knowledge, coping with stress, negotiating with family members, and managing the social aspect of food. Members of vulnerable groups also reported other challenges, such as affording fresh fruit and vegetables or understanding English instructions. This report may help health care providers work with patients more effectively to make diet changes.

Chronic disease patients' experiences with accessing health care in rural and remote areas: a systematic review and qualitative meta-synthesis.

BACKGROUND: Rurality can contribute to the vulnerability of people with chronic diseases. Qualitative research can identify a wide range of health care access issues faced by patients living in a remote or rural setting. OBJECTIVE: To systematically review and synthesize qualitative research on the advantages and disadvantages rural patients with chronic diseases face when accessing both rural and distant care. DATA SOURCES: This report synthesizes 12 primary qualitative studies on the topic of access to health care for rural patients with chronic disease. Included studies were published between 2002 and 2012 and followed adult patients in North America, Europe, Australia, and New Zealand. REVIEW METHODS: Qualitative meta-synthesis was used to integrate findings across primary research studies. RESULTS: Three major themes were identified: geography, availability of health care professionals, and rural culture. First, geographic distance from services poses access barriers, worsened by transportation problems or weather conditions. Community supports and rurally located services can help overcome these challenges. Second, the limited availability of health care professionals (coupled with low education or lack of peer support) increases the feeling of vulnerability. When care is available locally, patients appreciate long-term relationships with individual clinicians and care personalized by familiarity with the patient as a person. Finally, patients may feel culturally marginalized in the urban health care context, especially if health literacy is low. A culture of self-reliance and community belonging in rural areas may incline patients to do without distant care and may mitigate feelings of vulnerability. LIMITATIONS: Qualitative research findings are not intended to generalize directly to populations, although meta-synthesis across a number of qualitative studies builds an increasingly robust understanding that is more likely to be transferable. Selected studies focused on the vulnerability experiences of rural dwellers with chronic disease; findings emphasize the patient rather than the provider perspective. CONCLUSIONS: This study corroborates previous knowledge and concerns about access issues in rural and remote areas, such as geographical distance and shortage of health care professionals and services. Unhealthy behaviours and reduced willingness to seek care increase patients' vulnerability. Patients' perspectives also highlight rural culture's potential to either exacerbate or mitigate access issues. PLAIN LANGUAGE SUMMARY: People who live in a rural area may feel more vulnerable--that is, more easily harmed by their health problems or experiences with the health care system. Qualitative research looks at these experiences from the patient's point of view. We found 3 broad concerns in the studies we looked at. The first was geography: needing to travel long distances for health care can make care hard to reach, especially if transportation is difficult or the weather is bad. The second concern was availability of health professionals: rural areas often lack health care services. Patients may also feel powerless in "referral games" between rural and urban providers. People with low education or without others to help them may find navigating care more difficult. When rural services are available, patients like seeing clinicians who have known them for a long time, and like how familiar clinicians treat them as a whole person. The third concern was rural culture: patients may feel like outsiders in city hospitals or clinics. As well, in rural communities, people may share a feeling of self-reliance and community belonging. This may make them more eager to take care of themselves and each other, and less willing to seek distant care. Each of these factors can increase or decrease patient vulnerability, depending on how health services are provided.

The influence of risk estimates obtained from maternal serum screening on amniocentesis rates.

OBJECTIVE: To investigate the influence of Down syndrome risk estimates obtained from maternal serum screening (MSS) on women's choices regarding amniocentesis. METHODS: Women who screened positive for Down syndrome by an Ontario MSS program between 1993 and 1998 were grouped on the basis of their risk estimate and ethnicity. Amniocentesis uptake rates between the groups were compared in order to determine how the MSS risk estimate influenced uptake. RESULTS: Analysis of 16 792 women showed that amniocentesis uptake rates increased as the estimated risk increased. Uptake in women < or = 35 was higher than that for older women (70% vs 60%, p = 0.001). Uptake in Caucasian and Asian women was higher than the uptake in Black women (67% vs 49%, p = 0.001). Women aged 35 years or older were more likely to proceed with amniocentesis if the MSS risk estimate was higher than their age-specific risk. CONCLUSION: The increase in amniocentesis rate paralleled the increase in MSS risk estimate for Down syndrome. Risk-specific amniocentesis rates are higher in women aged less than 35 years. Women aged 35 years or older whose risk estimate by MSS is lower than their age-specific risk are less likely to opt for amniocentesis.

The effect of fetal gender on the false-positive rate of Down syndrome by maternal serum screening.

OBJECTIVES: (1) To further explore if there is a difference in maternal serum levels of alpha-fetoprotein (AFP), human chorionic gonadotrophin (hCG) and estriol (uE3) between fetal genders. (2) To determine if these differences influence false-positive rates of Down syndrome screening in pregnancies with male or female fetuses. METHODS: This is a descriptive study of women screened at the Ontario Maternal Serum Screening program between 1993 and 1995. The women were grouped by fetal gender and ethnicity. Serum levels of the three markers and screening false-positive rates for Down syndrome were compared between fetal genders in women of different ethnicity respectively. RESULTS: Complete data were available for 110 306 pregnancies. In all three ethnic groups, MSAFP levels were significantly decreased and MShCG levels were significantly increased in women with female fetuses. The level of MSuE3 was similar between genders. The difference in false-positive rates of Down syndrome between genders was not statistically significant. CONCLUSIONS: This is the largest study comparing false-positive rates between fetal genders. In contrast to previous studies, the differences in the serum marker levels between fetal genders do not influence the false-positive rates for Down syndrome.

Touch-pad technology: immediate feedback for resident educators in teenage reproductive health.

OBJECTIVE: To describe a program for residents in obstetrics and gynecology to design, research, and present an innovative teaching activity to secondary-school students in reproductive health. METHODS: An interactive 3-hour assembly was held for 285 grade-9 and -10 students. Six residents chose topics that encompassed key areas in adolescent health (menstruation, contraception, risk-taking behaviors, sexuality, and sexually transmitted diseases [STDs]). Each gave an interactive presentation designed to address issues identified through anonymous questions submitted by the students in advance. Touch-pad technology was used throughout the presentations to ascertain the students' knowledge about, and attitudes toward, a range of reproductive health issues. Each resident participant completed a follow-up questionnaire. RESULTS: Touch-pads provided a unique format, allowing teens to respond candidly to sensitive topics anonymously while providing important feedback to resident educators to help them focus their presentations and address areas of greatest need. Resident participants reported that by preparing these presentations, they honed their knowledge about contraception, STDs, and teen sexuality; identified important community resources for teens; and were sensitized to issues unique to teen sexual-health counseling. CONCLUSION: This project provided an opportunity for residents to improve their knowledge of teenage sexuality and to develop skills as teachers, while forging a valuable link between the community and the university.

A report of recurrent anencephaly with trisomy 2p23-2pter: additional evidence for the involvement of 2p24 in neural tube development and evaluation of the role for cytogenetic analysis.

A woman carrying a balanced reciprocal translocation, 46,XX,t(2;5)(p23;p15)pat, was ascertained following the delivery of an anencephalic fetus whose karyotype was 46,XY,5p+. She subsequently had two pregnancies with a similar unbalanced karyotype (trisomy 2p23-2pter and monosomy 5p15-5pter), one of which was also anencephalic. She has three living children, two of whom are balanced translocation carriers. This history raises questions regarding the necessity of cytogenetic assessment of cases identified by ultrasound with 'isolated' neural tube defects. The observation of duplication of the 2p23-2pter region in conjunction with anencephaly also adds to the growing body of evidence suggesting an association of this region and neural tube development.

Piloting an A&E and practice nurse educational exchange.

The accident and emergency (A&E) department acts as an interface between primary and secondary care. Traditionally, general practice has been viewed negatively by A&E nurses. This article explores some of the issues surrounding these views. The need to challenge the traditional view of A&E as simply a department within a hospital and replace it by one that identifies A&E within the broader community context is identified. This change in ethos requires nurses who work in the A&E department to challenge their beliefs about the specialty. There is a need to look at the educational preparation of A&E nurses. A pilot educational exchange scheme, developed to explore ways of improving the relationship between A&E nurses and nurses working in general practice, is described.

The control of the antibody isotype response to recombinant human immunodeficiency virus gp120 antigen by adjuvants.

Both saponin and muramyl dipeptide (MDP) formulated with a squalane-in-water emulsion of large particle size prepared with a vortex mixer were superior to Al(OH)3 as adjuvants for HIV gp120 in mice. All the adjuvants induced IgG1 antibody, but saponin elicited the highest titers of IgG2a. The secretion of interleukin-5 (IL-5) and interferon gamma (IFN gamma) by lymph node cells cultured in vitro with gp120 was studied. All the cultures secreted IL-5, but only those from saponin-immunized mice produced IFN gamma, suggesting that saponin is capable of activating both the Th1 and TH2 T-cell subsets. The titers of neutralizing antibodies were low with both MDP and saponin, and they occurred in mice which were also positive for antibodies against a V3 loop peptide. Glucosaminylmuramyl dipeptide (GMDP) which is less pyrogenic than MDP and a nonpyrogenic analog GMDPA, displayed equivalent adjuvant activity to MDP. The level and isotype composition of antibodies induced by GMDP in combination with squalane emulsions depended on the dimension of the emulsion particles. With a large (2500 nm) particle size the response was confined to IgG1 in Balb/c mice, but when this was reduced to 150 nm by sonication the antibody response was increased and relatively high levels of IgG2a appeared in some mice.

Adjuvanticity and ISCOM formation by structurally diverse saponins.

Adjuvant activity and immunostimulating complex (ISCOM) formation by a series of saponins and glycoalkaloids differing in the structures of their aglycones and sugar chains were examined. The only two saponins apart from Quillaia that were adjuvant-active were Gypsophila and Saponaria, which resemble Quillaia in that they contain saponins with branched sugar chains attached to positions 3 and 28 of the aglycone. Glycoalkaloids with a branched sugar chain lacked adjuvant activity. Saponaria saponins formed irregular ISCOM-like structures, and Gypsophila produced a sheet of joined pore-like structures. The alfalfa hederagenin saponin and Quinoa also formed pore-sheets, despite lacking adjuvanticity.