In sickness and in health: The strains and gains of caring for a chronically ill or disabled spouse.

Objectives To examine the subjective experiences of spousal carers, focusing on positive, negative, and relational aspects of this role. Methods Mixed-methods exploratory study involving questionnaires ( N = 40) and in-depth interviews ( N = 8) with spousal carers in the southwest of England. Results Participants used a combination of negative and positive terms to describe their experiences, with the cared-for spouse's mental acuity, behavior towards the carer, and amount of care required, impacting on carers' subjective experience. Women were more likely to report neglecting their own health because of being a carer ( p = 0.02). The marital relationship itself was highly significant, and many carers took special measures to maintain and develop their marital bonds. Carers adapted to their roles in various ways, with those finding acceptance of their situation and accessing support appearing to cope best with the demands of the role. Discussion This study, though based on a small and geographically restricted sample, offers insight into the positive, negative, and relational experiences of spousal carers. Support that encourages carers to engage in health-promoting activities, and ideally provides opportunities for both partners to be involved in such activities together, may be particularly beneficial.

GPs' explanatory models for irritable bowel syndrome: a mismatch with patient models?

BACKGROUND: Inconsistencies in doctors' views about causes and treatment of irritable bowel syndrome (IBS) lead to frustration for doctors and in doctor-patient interactions. Diagnosis by GPs does not correspond well to established diagnostic criteria. OBJECTIVE: To understand GPs' explanatory models (EMs) and management strategies for IBS. METHODS: Qualitative, semi-structured interviews with 30 GPs (15 from the UK and 15 from The Netherlands). RESULTS: Diagnosing IBS in primary care is a complex process, involving symptoms, tests, history and risk calculation. GPs were uncertain about the aetiology of IBS, but often viewed it as a consequence of disordered bowel activity in response to stress, which was viewed as a function of people's responses to their environment. GPs tend to diagnose IBS by exclusion, rather than with formal diagnostic criteria. They endeavoured to present the IBS diagnosis to their patients in a way that they would accept, fearing that many would not be satisfied with a diagnosis that had no apparent physical cause. GPs focused on managing symptoms and reassuring patients. Many GPs felt that patients needed to take the responsibility for managing their IBS and for minimizing its impact on their daily lives. However, the GPs had limited awareness of the extent to which IBS affected their patients' daily lives. CONCLUSIONS: GPs' diagnostic procedures and EMs for IBS are at odds with patient expectations and current guidelines. Shared discussion of what patients believe to be triggers for symptoms, ways of coping with symptoms and the role of medication may be helpful.

Patients' explanatory models for irritable bowel syndrome: symptoms and treatment more important than explaining aetiology.

BACKGROUND: Irritable bowel syndrome (IBS) is a common condition associated with no certain organic cause, though diet and stress are widely implicated. The condition is frustrating for both sufferers and doctors, and there are problems in diagnosing and treating the condition. Eliciting explanatory models (EMs) is a useful tool for understanding how individuals relate to their illnesses and their expectations for treatment, particularly for illnesses with uncertain aetiology like IBS. OBJECTIVES: To understand the EMs, experiences and expectations for management of patients with IBS. METHODS: Qualitative, semi-structured interviews were conducted with 51 primary care patients (31 in the UK, 20 in The Netherlands) meeting the Rome II diagnostic criteria for IBS. RESULTS: Although IBS often had a significant dampening effect on daily life, IBS patients made great efforts not to allow the condition to take over their lives. Triggers of symptoms were more important to patients than understanding the underlying aetiology of IBS. Diet and stress were both recognized as important triggers, but views about which foods were problematic and the extent to which stress was modifiable were inconsistent. Diagnosis and treatment were often a confusing and frustrating process, and patients often expected more diagnostic tests than they were offered before receiving a diagnosis of IBS. However, the often poor outcome of medical interventions does not, in general, appear to have a negative impact on the patient-doctor relationship. CONCLUSIONS: Clinicians should be aware of the extensive impact of IBS on sufferers' daily life and the frustration that results from repeatedly trying treatments with little effect. Clearly explaining the guidelines for diagnosing IBS and the range of treatment options may help patients to make sense of the diagnostic and treatment processes. The personal EM should be addressed during the consultation with the IBS patient, ensuring that any successive medical interventions match with the patients' disease perception.

Saving lives, preserving livelihoods: understanding risk, decision-making and child health in a food crisis.

The purpose of this paper is to analyse household decision-making regarding resource allocation in the aftermath of a food crisis in rural Niger. International attention had resulted in humanitarian agencies launching emergency nutrition programmes to alleviate persistently high levels of acute child malnutrition. We conducted participant observation, 93 in-depth interviews, 15 focus groups, 44 feeding and illness histories for children under 5, and debriefing sessions with local humanitarian staff. The impetus for this study came from observations of marked intra-household differences in child growth and health status, despite the caregivers' ethos of treating children equally. Egalitarian input, however, does not always result in equal outcomes: vulnerable children become "victims of non-discrimination" through a form of benign neglect engendered by pervasive poverty. The ethos and practices of equal investment in children are rooted in a need to balance the perceived risks to children with the preservation of long-term livelihoods. We discuss the mismatch of views between external interventions, which focus on saving individual children's lives, and local priorities, aimed at spreading risk. This mismatch is rooted in the different ways in which humanitarian agencies and local communities weigh up risks and vulnerabilities in matters of child health.

Restoring confidence in vaccines by explaining vaccine safety monitoring: is a targeted approach needed?

Public trust in childhood vaccines is crucial to achieving adequate immunisation coverage to ensure population-level immunity. However, in the UK, immunisation uptake has been adversely affected by vaccine safety scares, such as those surrounding whooping cough and measles, mumps and rubella (MMR). It is our belief that greater public awareness of safety surveillance schemes may play a key role in improving trust in vaccine safety. Many parents of vaccination-age children are unaware of the procedures in place for postmarketing surveillance of vaccines. Thus, we propose specific steps for generating such awareness, such as assisting parents to report suspected adverse reactions directly to the Medicines and Healthcare products Regulatory Agency (MHRA) via the Yellow Card scheme, providing information about adverse reaction reporting with vaccination information packs, and displaying posters and leaflets to convey the message that patient concerns and experiences are taken seriously by the MHRA and to generate further awareness about the scheme. In addition, healthcare staff should be encouraged to report suspected adverse reactions relating to vaccine products. Unresolved issues about the scientific usefulness of data reported by parents and the potential for these steps to increase parental concern and expectations require further investigation.