Barbro Krevers

Parents of Adolescents with Type 1 Diabetes - Their Views on Information and Communication Needs and Internet Use. A Qualitative Study

Background Little is known about parents’ views on the use of online resources for information, education and support regarding childhood type 1 diabetes (T1DM). Considering the rapidly evolving new communication practices, parents’ perspectives need to be explored. The main purpose of this paper was to explore parents’ perceptions of their information-seeking, Internet use, and social networking online. This applied to their everyday life, including the contexts of T1DM and contact with peers. A second aim was to identify implications for future development of Internet use in this respect. Methodology/Principal Findings Twenty-seven parents of 24 young persons aged 10–17 with T1DM participated in eight focus group interviews during their regular visits to a county hospital. Focus group discussions were video/audio-taped, transcribed and analysed using inductive qualitative content analysis. Self-reported demographic and medical information was also collected. A main theme was Finding things out, including two sub-themes, Trust and Suitability. The latter were key factors affecting parents’ perceptions of online resources. Parents’ choice of information source was related to the situation, previous experiences and knowledge about sources and, most importantly, the level of trust in the source. A constantly present background theme was Life situation, including two sub-themes, Roles and functions and Emotions and needs. Parents’ information-seeking regarding T1DM varied greatly, and was closely associated with their life situation, the adolescents development phases and the disease trajectory. Conclusions/Significance Health practitioners and system developers need to focus on creating trust and suitability for users’ needs. They should understand the children’s diverse needs, which depend on their life situation, on the children’s development, and on the disease trajectory. To enhance trust in online health information and support services, the participation of local practitioners is crucial.

Disabled older people's use of health and social care services and their unmet care needs in six European countries

BACKGROUND The national health and social care systems in Europe remain poorly integrated with regard to the care needs of older persons. The present study examined the range of health and social care services used by older people and their unmet care needs, across six European countries. METHODS Family carers of older people were recruited in six countries via a standard protocol. Those providing care for disabled older people (n = 2629) provided data on the older persons service use over a 6-month period, and their current unmet care needs. An inventory of 21 services common to all six countries was developed. Analyses considered the relationship between older peoples service use and unmet care needs across countries. RESULTS Older people in Greece, Italy and Poland used mostly health-oriented services, used fewer services overall and also demonstrated a higher level of unmet care needs when compared with the other countries. Older people in the United Kingdom, Germany and Sweden used a more balanced profile of socio-medical services. A negative relationship was found between the number of different services used and the number of different areas of unmet care needs across countries. CONCLUSIONS Unmet care needs in older people are particularly high in European countries where social service use is low, and where there is a lack of balance in the use of health and social care services. An expansion of social care services in these countries might be the most effective strategy for reducing unmet needs in disabled older people.

In pursuit of QALY weights for relatives: empirical estimates in relatives caring for older people

This study estimates quality-adjusted life-year (QALY) weights for relatives caring for an older person. The data used are from the Swedish part of the EUROFAMCARE study. A new measure is introduced called the R-QALY weight, defined as the effect on a relative’s QALY weight due to being a relative of a disabled or sick individual. R-QALY weights were created by comparing relatives’ QALY weights with population-based QALY weights. They were also created by comparing with QALY weights reassessed for a hypothetical situation in which the older person needed no care. The results indicate that R-QALY weights are small when compared with population-based weights, but large when compared with QALY weights reassessed for the hypothetical situation. Moreover, R-QALY weights were affected by relatives’ age, sex, and subjective perception of positive and negative aspects of the caregiving situation. These aspects should therefore be taken into account in health economics evaluations using a societal approach.

Long-Term Evaluation of the Ambulatory Geriatric Assessment: A Frailty Intervention Trial (AGe-FIT): Clinical Outcomes and Total Costs After 36 Months

OBJECTIVE To compare the effects of care based on comprehensive geriatric assessment (CGA) as a complement to usual care in an outpatient setting with those of usual care alone. The assessment was performed 36 months after study inclusion. DESIGN Randomized, controlled, assessor-blinded, single-center trial. SETTING A geriatric ambulatory unit in a municipality in the southeast of Sweden. PARTICIPANTS Community-dwelling individuals aged ≥ 75 years who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion. Participants were randomized to the intervention group (IG) or control group (CG). INTERVENTION Participants in the IG received CGA-based care for 24 to 31 months at the geriatric ambulatory unit in addition to usual care. OUTCOME MEASURES Mortality, transfer to nursing home, days in hospital, and total costs of health and social care after 36 months. RESULTS Mean age (SD) of participants was 82.5 (4.9) years. Participants in the IG (n = 208) lived 69 days longer than did those in the CG (n = 174); 27.9% (n = 58) of participants in the IG and 38.5% (n = 67) in the CG died (hazard ratio 1.49, 95% confidence interval 1.05-2.12, P = .026). The mean number of inpatient days was lower in the IG (15.1 [SD 18.4]) than in the CG (21.0 [SD 25.0], P = .01). Mean overall costs during the 36-month period did not differ between the IG and CG (USD 71,905 [SD 85,560] and USD 65,626 [SD 66,338], P = .43). CONCLUSIONS CGA-based care resulted in longer survival and fewer days in hospital, without significantly higher cost, at 3 years after baseline. These findings add to the evidence of CGAs superiority over usual care in outpatient settings. As CGA-based care leads to important positive outcomes, this method should be used more extensively in the treatment of older people to meet their needs.

'The web is not enough, it's a base' - an explorative study of what needs a web-based support system for young carers must meet

The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge – understanding MI, managing the mentally ill person and self-care; communication – shared experiences, advice and feedback, and befriending; and outside involvement – acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.

Support/services among family caregivers of persons with dementia-perceived importance and services received

The aim of this study was to examine what family caregivers of persons with dementia perceive as important types of support/services in relation to experienced negative impact (NI) due to the caregiver situation, and to investigate if caregivers receive the support/services perceived as important.

Daily life for young adults who care for a person with mental illness: a qualitative study

This study describes the daily life and management strategies of young informal carers of family members or friends with mental illness. Twelve young adults (three men and nine women; 16-25 years old) in Sweden were voluntarily recruited between February and May 2008. Data collected through eight individual semi-structured interviews and one focus group interview were analysed using qualitative content analysis. The findings revealed nine subthemes that were further grouped into three main themes: showing concern, providing support and using management strategies. Participants lived in constant readiness for something unexpected to happen to the person they cared for, and their role in the relationship could change quickly from family member or friend to guardian or supervisor. Supporting a friend was considered as large a personal responsibility as supporting a family member. Their management strategies were based on individual capacities and their ability to step aside should the situation become too demanding. These young informal carers need support in caring for the mentally ill. As the internet becomes increasingly fundamental to daily life, support could be provided most effectively through person-centred web sites.

Erfahrungen von pflegenden angehörigen älterer menschen in Europa bei der inanspruchnahme von unterstützungsleistungen: Ausgewählte ergebnisse des projektes EUROFAMCARE

ZusammenfassungIn diesem Beitrag werden ausgewählte Ergebnisse der EUROFAMCARE-Studie zur Nutzung und Erreichbarkeit unterstützender Angebote für pflegende Angehörige präsentiert. Die Untersuchung wurde in sechs europäischen Ländern (Deutschland, Griechenland, Italien, Polen, Schweden und Großbritannien), die unterschiedliche Typen von Wohlfahrtsstaaten repräsentieren, durchgeführt. Mit Hilfe eines gemeinsam entwickelten Erhebungsinstrumentes und gemeinsamer Rekrutierungsstrategien wurden in allen sechs Ländern jeweils rund 1000 pflegende Angehörige älterer Menschen persönlich interviewt. Die dargestellten Ergebnisse zeigen die unterschiedliche Nutzung von Diensten/Angeboten und die Verfügbarkeit von finanziellen Unterstützungsmöglichkeiten in den verschiedenen Ländern. Weiter werden die Erfahrungen der pflegenden Angehörigen, insbesondere hinsichtlich der Kosten von Unterstützungsleistungen und die größten Hilfen bzw. Hindernisse bei der Inanspruchnahme, dargestellt. Schließlich werden die Gründe für eine Nichtinanspruchnahme bestimmter Unterstützungsleistungen, als auch für eine Aufgabe von Unterstützungsleistungen, die eigentlich noch benötigt werden, aufgezeigt. Insbesondere in den nordeuropäischen Ländern zeigt sich einerseits zwar eine höhere Verfügbarkeit von Diensten/Angeboten, die aber andererseits aufgrund ihrer geringe Flexibilität bei deren Anpassung an die Bedürfnisse der Pflegenden und ihrer betreuten Angehörigen z.T. nicht genutzt werden.SummaryThis article presents selected findings of the EUROFAMCARE research project, reporting up-to-date information on the use and accessibility of support services for family carers of older people in six European countries representing different typologies of welfare systems (Germany, Greece, Italy, Poland, Sweden and the UK). Data were collected by means of face-to-face interviews to national samples of about 1000 family carers per country (i.e. 6000 in total), based on a common recruitment and data collection protocol. The reported findings reveal the crossnational usage of different support services – subdivided for comparative reasons in the categories of socio-emotional support, information, respite care, training and assessment services – as well as of available care allowances. The analysis includes the perceived experience of carers in using them, in terms of costs sustained, factors affecting service accessibility – i.e. main obstacles and greatest helps in accessing them – as well as reasons for not using (needed) services or for stopping using (still needed) services. Cross-national differences are relevant, showing a greater availability in Northern European countries, where however higher refusal rates by potential users of available services are recorded, possibly in connection to their lack of flexibility and low customisation.

Erfahrungen von pflegenden Angehörigen älterer Menschen in Europa bei der Inanspruchnahme von Unterstützungsleistungen

ZusammenfassungIn diesem Beitrag werden ausgewählte Ergebnisse der EUROFAMCARE-Studie zur Nutzung und Erreichbarkeit unterstützender Angebote für pflegende Angehörige präsentiert. Die Untersuchung wurde in sechs europäischen Ländern (Deutschland, Griechenland, Italien, Polen, Schweden und Großbritannien), die unterschiedliche Typen von Wohlfahrtsstaaten repräsentieren, durchgeführt. Mit Hilfe eines gemeinsam entwickelten Erhebungsinstrumentes und gemeinsamer Rekrutierungsstrategien wurden in allen sechs Ländern jeweils rund 1000 pflegende Angehörige älterer Menschen persönlich interviewt. Die dargestellten Ergebnisse zeigen die unterschiedliche Nutzung von Diensten/Angeboten und die Verfügbarkeit von finanziellen Unterstützungsmöglichkeiten in den verschiedenen Ländern. Weiter werden die Erfahrungen der pflegenden Angehörigen, insbesondere hinsichtlich der Kosten von Unterstützungsleistungen und die größten Hilfen bzw. Hindernisse bei der Inanspruchnahme, dargestellt. Schließlich werden die Gründe für eine Nichtinanspruchnahme bestimmter Unterstützungsleistungen, als auch für eine Aufgabe von Unterstützungsleistungen, die eigentlich noch benötigt werden, aufgezeigt. Insbesondere in den nordeuropäischen Ländern zeigt sich einerseits zwar eine höhere Verfügbarkeit von Diensten/Angeboten, die aber andererseits aufgrund ihrer geringe Flexibilität bei deren Anpassung an die Bedürfnisse der Pflegenden und ihrer betreuten Angehörigen z.T. nicht genutzt werden.SummaryThis article presents selected findings of the EUROFAMCARE research project, reporting up-to-date information on the use and accessibility of support services for family carers of older people in six European countries representing different typologies of welfare systems (Germany, Greece, Italy, Poland, Sweden and the UK). Data were collected by means of face-to-face interviews to national samples of about 1000 family carers per country (i.e. 6000 in total), based on a common recruitment and data collection protocol. The reported findings reveal the crossnational usage of different support services – subdivided for comparative reasons in the categories of socio-emotional support, information, respite care, training and assessment services – as well as of available care allowances. The analysis includes the perceived experience of carers in using them, in terms of costs sustained, factors affecting service accessibility – i.e. main obstacles and greatest helps in accessing them – as well as reasons for not using (needed) services or for stopping using (still needed) services. Cross-national differences are relevant, showing a greater availability in Northern European countries, where however higher refusal rates by potential users of available services are recorded, possibly in connection to their lack of flexibility and low customisation.

Effectiveness of web-based versus folder support interventions for young informal carers of persons with mental illness: A randomized controlled trial

OBJECTIVE Compare the impact of two interventions, a web-based support and a folder support, for young persons who care for people who suffer from mental illness. METHODS This study was a randomized control trial, following the CONSORT statements, which compared the impact of two interventions. Primary outcome variable was stress, and secondary outcome variables were caring situation, general self-efficacy, well-being, health, and quality of life of young informal carers (N=241). Data were collected in June 2010 to April 2011, with self-assessment questionnaires, comparing the two interventions and also to detect changes. RESULTS The stress levels were high in both groups at baseline, but decreased in the folder group. The folder group had improvement in their caring situation (also different from the web group), general self-efficacy, well-being, and quality of life. The web group showed increase in well-being. CONCLUSION Young informal carers who take on the responsibility for people close to them; suffer consequences on their own health. They live in a life-situation characterized by high stress and low well-being. This signals a need for support. PRACTICE IMPLICATIONS The non-significant differences show that each intervention can be effective, and that it depends upon the individuals preferences. This highlights the importance of adopting person-centered approach, in which young persons can themselves choose support strategy.