Volunteering in Palliative Care in France: “A Tough Job”; Patient, Family, Caregiver, and Volunteer Perspectives

This chapter discusses the place of volunteering in palliative care in the context of hospital services in France, and the meaning each actor gives to that presence. Its aim is to go beyond general normative discourse on the role of these volunteers in order to highlight their actions from a little-explored perspective (awkwardness, fears, reticence their activity can create) but one essential to their development. We attempt to understand how (and within what work settings) personnel and volunteers “work” together, and how that lay presence is perceived by patients and families. This research is based on a literature review and individual semi-structured interviews with patients, families, medical personnel, and volunteers in 10 hospitals. In all, 114 persons were interviewed in three work settings: palliative care units, mobile palliative care teams, and traditional services. The analysis highlighted a diversity of perceptions on volunteering, as a function of the type of actors involved and the work setting. It raises the question of the role of nonprofessional actors in hospitals, and of what form volunteering in palliative care should take in France, where volunteers explained they “are there” not “to do”, but just “to be there out of human solidarity”

Information Needs in Palliative Care: Patient and Family Perspectives

International audienc

DÉBAT :

 Martine Berger : L’hypothèse de limiter l’enquête par questionnaires de l’équipe Espace, population, société aux couches moyennes a été pendant un temps envisagée. Nous l’avons finalement écartée. Il faudrait revenir sur cette décision et en tirer les enseignements pour notre propos.  Jacques Brun : La question évoquée permet de mesurer la complexité des interférences entre problèmes de fond et problèmes de méthode, voire de simple technique d’observation et d’analyse, lorsqu’on cherche à é..

DÉBAT :

 Martine Berger : L’hypothèse de limiter l’enquête par questionnaires de l’équipe Espace, population, société aux couches moyennes a été pendant un temps envisagée. Nous l’avons finalement écartée. Il faudrait revenir sur cette décision et en tirer les enseignements pour notre propos.  Jacques Brun : La question évoquée permet de mesurer la complexité des interférences entre problèmes de fond et problèmes de méthode, voire de simple technique d’observation et d’analyse, lorsqu’on cherche à é..

DÉBAT

 Michel Rochefort : Je m’interroge sur la définition du mot « stratégie ». Est-ce que le terme de « stratégie territoriale » recouvre un ensemble d’actions visant à organiser un espace ? À ce moment-là, je pense qu’il faut un temps long parce qu’un espace s’organise toujours sur le long terme. Ce que tu étudies comme stratégie, ce sont les mécanismes de prise de décision économique, soit par l’État, soit par les entrepreneurs privés. Or ces stratégies n’ont pas pour finalité d’organiser l’esp..

DÉBAT

 Michel Rochefort : Je m’interroge sur la définition du mot « stratégie ». Est-ce que le terme de « stratégie territoriale » recouvre un ensemble d’actions visant à organiser un espace ? À ce moment-là, je pense qu’il faut un temps long parce qu’un espace s’organise toujours sur le long terme. Ce que tu étudies comme stratégie, ce sont les mécanismes de prise de décision économique, soit par l’État, soit par les entrepreneurs privés. Or ces stratégies n’ont pas pour finalité d’organiser l’esp..

Genetic Variant in HK1 Is Associated With a Proanemic State and A1C but Not Other Glycemic Control–Related Traits

OBJECTIVE A1C is widely considered the gold standard for monitoring effective blood glucose levels. Recently, a genome-wide association study reported an association between A1C and rs7072268 within HK1 (encoding hexokinase 1), which catalyzes the first step of glycolysis. HK1 deficiency in erythrocytes (red blood cells [RBCs]) causes severe nonspherocytic hemolytic anemia in both humans and mice. RESEARCH DESIGN AND METHODS The contribution of rs7072268 to A1C and the RBC-related traits was assessed in 6,953 nondiabetic European participants. We additionally analyzed the association with hematologic traits in 5,229 nondiabetic European individuals (in whom A1C was not measured) and 1,924 diabetic patients. Glucose control–related markers other than A1C were analyzed in 18,694 nondiabetic European individuals. A type 2 diabetes case-control study included 7,447 French diabetic patients. RESULTS Our study confirms a strong association between the rs7072268–T allele and increased A1C (β = 0.029%; P = 2.22 × 10−7). Surprisingly, despite adequate study power, rs7072268 showed no association with any other markers of glucose control (fasting- and 2-h post-OGTT–related parameters, n = 18,694). In contrast, rs7072268–T allele decreases hemoglobin levels (n = 13,416; β = −0.054 g/dl; P = 3.74 × 10−6) and hematocrit (n = 11,492; β = −0.13%; P = 2.26 × 10−4), suggesting a proanemic effect. The T allele also increases risk for anemia (836 cases; odds ratio 1.13; P = 0.018). CONCLUSIONS HK1 variation, although strongly associated with A1C, does not seem to be involved in blood glucose control. Since HK1 rs7072268 is associated with reduced hemoglobin levels and favors anemia, we propose that HK1 may influence A1C levels through its anemic effect or its effect on glucose metabolism in RBCs. These findings may have implications for type 2 diabetes diagnosis and clinical management because anemia is a frequent complication of the diabetes state

G-allele of Intronic rs10830963 in MTNR1B Confers Increased Risk of Impaired Fasting Glycemia and Type 2 Diabetes Through an Impaired Glucose-Stimulated Insulin Release: Studies Involving 19,605 Europeans

OBJECTIVE Genome-wide association studies have identified several variants within the MTNR1B locus that are associated with fasting plasma glucose (FPG) and type 2 diabetes. We refined the association signal by direct genotyping and examined for associations of the variant displaying the most independent effect on FPG with isolated impaired fasting glycemia (i-IFG), isolated impaired glucose tolerance (i-IGT), type 2 diabetes, and measures of insulin release and peripheral and hepatic insulin sensitivity. RESEARCH DESIGN AND METHODS We examined European-descent participants in the Inter99 study (n = 5,553), in a sample of young healthy Danes (n = 372), in Danish twins (n = 77 elderly and n = 97 young), in additional Danish type 2 diabetic patients (n = 1,626) and control subjects (n = 505), in the Data from the Epidemiological Study on the Insulin Resistance Syndrome (DESIR) study (n = 4,656), in the North Finland Birth Cohort 86 (n = 5,258), and in the Haguenau study (n = 1,461). RESULTS The MTNR1B intronic variant, rs10830963, carried most of the effect on FPG and showed the strongest association with FPG (combined P = 5.3 × 10−31) and type 2 diabetes. The rs10830963 G-allele increased the risk of i-IFG (odds ratio [OR] 1.64, P = 5.5 × 10−11) but not i-IGT. The G-allele was associated with a decreased insulin release after oral and intravenous glucose challenges (P < 0.01) but not after injection of tolbutamide. In elderly twins, the G-allele associated with hepatic insulin resistance (P = 0.017). CONCLUSIONS The G-allele of MTNR1B rs10830963 increases risk of type 2 diabetes through a state of i-IFG and not through i-IGT. The same allele associates with estimates of β-cell dysfunction and hepatic insulin resistance