What is important for you? A qualitative interview study of living with diabetes and experiences of diabetes care to establish a basis for a tailored Patient-Reported Outcome Measure for the Swedish National Diabetes Register

OBJECTIVES: There is a growing emphasis on the perspective of individuals living with diabetes and the need for a more person-centred diabetes care. At present, the Swedish National Diabetes Register (NDR) lacks patient-reported outcome measures (PROMs) based on the perspective of the patient. As a basis for a new PROM, the aim of this study was to describe important aspects in life for adult individuals with diabetes. DESIGN: Semistructured qualitative interviews analysed using content analysis. SETTING: Hospital-based outpatient clinics and primary healthcare clinics in Sweden. PARTICIPANTS: 29 adults with type 1 diabetes mellitus (DM) (n=15) and type 2 DM (n=14). INCLUSION CRITERIA: Swedish adults (≥18 years) living with type 1 DM or type 2 DM (duration ≥5 years) able to describe their situation in Swedish. Purposive sampling generated heterogeneous characteristics. RESULTS: To live a good life with diabetes is demanding for the individual, but experienced barriers can be eased by support from others in the personal sphere, and by professional support from diabetes care. Diabetes care was a crucial resource to nurture the individual's ability and knowledge to manage diabetes, and to facilitate life with diabetes by supplying support, guidance, medical treatment and technical devices tailored to individual needs. The analysis resulted in the overarching theme 'To live a good life with diabetes' constituting the two main categories 'How I feel and how things are going with my diabetes' and 'Support from diabetes care in managing diabetes' including five different categories. CONCLUSIONS: Common aspects were identified including the experience of living with diabetes and support from diabetes care. These will be used to establish a basis for a tailored PROM for the NDR.

After work : en longitudinell studie i arbetsmiljöns långsiktiga inverkan på sambandet mellan socioekonomisk position och äldres ohälsa

After Work. The long-term effects of work environment on the association between adult socioeconomic position and ill health among the elderly The aim of this study is to analyse the long-term effects of work environment on the association between adult socioeconomic position (SEP) and six ill health outcomes among the elderly. Data was drawn from the longitudinal Level of Living and the SWEOLD-surveys. The individuals are followed from 1968 to 1992 and from 1981 to 2002 and 2004, combining baseline information regarding SEP and work environment during the period of occupational activity with the ill health outcomes from the follow-up studies. Strongest effects where revealed when controlling for the physical work environment on the association between both measures of SEP and two of the ill health outcomes: musculoskeleta lpain and physical performance. The psychological work environment, however, explained very small parts of the associations. The results, even controlled for SEP, exposed strong direct relations between ill health and psychological work environment and rather strong relations to physical work environment. As socioeconomic position indicates a particular structural position within society it may determine the likelihood of health damaging exposures during the period of occupational activity. This study shows that the effect of work environment significantly affects ill health among the elderly. Hence, the results indicate the importance of taking measures in improving work environment during the labour-market participation period, especially since policy-makers attempt to convince workers to stay longer in the workforce.

Living on the edge : Social exclusion and the receipt of informal care in older people

Older people have been identified as being at risk of social exclusion. However, despite the fact that care is commonly required in later life and the majority of that care provided by informal carers, a connection between social exclusion and informal care-receipt has rarely been considered. The aim of this study was to examine how informal care-receipt is related to social exclusion. A face-to-face questionnaire survey on social exclusion and informal care-receipt was carried out among older people (n=1255) living in Barnsley, United Kingdom. Multivariable analyses examined the association between social exclusion and categories of informal care-receipt: care receiver; assurance receiver; non-receiver with no need; non-receiver with need. Compared to being a non-receiver with no need participants were more likely to be a care receiver or assurance receiver if they had higher levels of social exclusion. The highest level of social exclusion, however, was found in non-receivers with need. Despite a lack of informal care and support, formal practical support and personal care was also low in this latter group. Findings are discussed in relation to the conceptualisation of care-receipt and how contact with medical services could be an opportunity for identification and appropriate referral of non-receivers with need.