ObjectivesUp to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement. MethodsThe participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patients death. ResultsThe model selection chose 4 demographic and 4 preloss variables: family members nervousness and stress, the patients sense of security during palliative care, family members sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members continuing bond - internalized and continuing bond - externalized. Significance of resultsHow family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

Introduction: Health care systems around the world are struggling with limited resources, in relation to the prevailing health care need. An accessible primary care is an important part of the solution for how to provide affordable care for the population and reduce pressure on the overall health care system such as unnecessary hospital stays and associated costs. As primary care constitutes an important first line of healthcare, the task of prioritising and deciding what to do and for whom lies in practice, primarily with the primary care professionals. Thus, the decisions and behaviour of primary care professionals have a central role in achieving good and equal health in the population. The aim of this study is to explore how primary health care professionals handle situations with limited resources and enhance our knowledge of priorities in practice. Methods: Semi-structured interviews with 14 health care professionals (7 nurses, 7 physicians) working in Swedish primary care were interviewed. Data were analysed inductively with content analysis. Findings: Three main categories were found: Influx of patients; Structural conditions; and Actions. Each category illustrates an important aspect for what primary care professionals do to achieve good and equal care. The influx of patients concerned what the professionals handled in terms of patients healthcare needs and patient behaviour. Structural conditions consisted of policies and goals set for primary care, competence availability, technical systems, and organisational culture. To handle situations due to limited resources, professionals performed different actions: matching health care needs with professionals competency, defining care needs to suit booking systems appointments, giving care at the inappropriate health care level, rearranging workhours, and passing on the decision making. Conclusion: Priorities in primary care are not, "one fits all " solution. Our study shows that priorities in primary care comprise of ongoing daily processes that are adapted to the situation, context of patient influx, and structural conditions. Healthcare professionals actions for how influx of patients is handled in relation to limited resources, are created, and shaped within this context which also sets the boundaries for their actions.

Municipalities and regions in Sweeden are mainly publicly financed and have limited resources. These resources must be allocated primarily to what is considered to be most important. For this, there should be an established routine that is transparent and that is perceived as reasonable and fair by those concerned. Linking a process for structured prioritisation with the regular management system has many advantages, which are addressed in this report.

For healthcare, there are since many years ethical principles that should guide decisions about priorities, expressed in law after a decision by the Swedish Parliament. Corresponding guidance does not exist for other welfare areas. However, these principles have been shown to be applicable in other welfare sectors as well, which was also what the investigation that preceded the parliamentary decision suggested.

The purpose of this report is to present a model for priority setting in municipalities – with processes and tools for resource allocation in an overall management process, which can include many different administrative areas with their units and political bodies.

The report describes the ethical principles for prioritisation on which the model is based, common concepts used in resource management, quality of evidence, tools and processes for creating structured horisontal priorities that apply to many different areas. The tools can be used in various stages in the work with priority setting and can contribute to create clear decision-making basis. The structure of the tools contributes to a number of important questions that should be asked and answered before decisions on resource allocation are made. The report describes processes, steps and activities that can be integrated and become routines in a management process. The report also addresses what may be important to consider when an organisation wants to undertake priority setting in a structural manner.

The report is primarily aimed at civil servants, politicians, and operational managers in municipalities, but the content may also be relevant to regional authorities and different kinds of units that are part of a municipality or a region.

In Sweden, efforts to govern end-of-life care through policies have been ongoing since the 1970s. The aim of this study is to analyse how policy narratives on palliative care in Sweden have been formulated and have changed over time since the 1970s up to 2018. We have analysed 65 different policy-documents. After having analysed the empirical material, three policy episodes were identified. In Episode 1, focus was on the need for norms, standards and a psychological end-of-life care with the main goal of solving the alleged deficiencies within end-of-life care in hospital settings. Episode 2 was characterised by an emphasis on prioritising end-of-life care and dying at home, and on the fact that the hospice care philosophy should serve as inspiration. In Episode 3, the need for a palliative care philosophy that transcended all palliative care and the importance of systematic follow-ups and indicators was endorsed. Furthermore, human value and freedom of choice were emphasised. In conclusion, the increase of policy-documents produced by the welfare-state illustrate that death and dying have become matters of public concern and responsibility. Furthermore, significant shifts in policy narratives display how notions of good palliative care change, which in turn may affect both the practice and the content of care at the end of life.

Background: Priority setting in healthcare that aims to achieve a fair and efficient allocation of limited resources is a worldwide challenge. Sweden has developed a sophisticated approach. Still, there is a need for a more detailed insight on how measures permeate clinical life. This study aimed to assess physicians views regarding (1) impact of scarce resources on patient care, (2) clinical decision-making, and (3) the ethical platform and national guidelines for healthcare by the National Board of Health and Welfare (NBHW). Methods: An online cross-sectional questionnaire was sent to two groups in Sweden, 2016 and 2017. Group 1 represented 331 physicians from different departments at one University hospital and group 2 consisted of 923 members of the Society of Cardiology. Results: Overall, a 26% (328/1254) response rate was achieved, 49% in group 1 (162/331), 18% in group 2 (166/923). Scarcity of resources was perceived by 59% more often than at least once per month, whilst 60% felt less than well-prepared to address this issue. Guidelines in general had a lot of influence and 19% perceived them as limiting decision-making. 86% professed to be mostly independent in decision-making. 36% knew the ethical platform well and very well and 64% NBHWs national guidelines. 57% expressed a wish for further knowledge and training regarding the ethical platform and 51% for support in applying NBHWs national guidelines. Conclusion: There was a need for more support to deal with scarcity of resources and for increased knowledge about the ethical platform and NBHWs national guidelines. Independence in clinical decision-making was perceived as high and guidelines in general as important. Priority setting as one potential pathway to fair and transparent decision-making should be highlighted more in Swedish clinical settings, with special emphasis on the ethical platform.

Background: It is crucial to provide care based on individual needs. Swedish health care is obliged to give care on equal conditions for the entire population. The person with the greatest need should be given the most care, and the health care system should strive to be cost-efficient. Medical and technical advances have been significant during the last decades and the recent Covid-19 pandemic has caused a shift in health care, from in-person visits to virtual visits. The majority of pregnant women with a low risk assessment have an uncomplicated antenatal course without adverse events. These women probably receive excessive and unnecessary antenatal care. This study will investigate if an antenatal care program for healthy pregnant women with a low risk for adverse outcomes could be safely monitored with fewer in-person visits to a midwife, and with some of them replaced by virtual visits.

Methods: This is a non-inferiority trial where a stepped wedge cluster randomized controlled design will be used. Data collection includes register data and questionnaires that concern antenatal, obstetric and neonatal outcomes, patient- and caregiver-reported experiences, healthcare-economy, and implementation aspects. The modified antenatal care (MAC) study is performed in parts of the southeast of Sweden, which has approximately 8200 childbirths annually. At the start of the study, all antenatal care centers included in the study will use the same standard antenatal care (SAC) program. In the MAC program the in-person visits to a midwife will be reduced to four instead of eight, with two additional virtual meetings compared with the SAC program.

Discussion: This presented study protocol is informed by research knowledge. The protocol is expected to provide a good structure for future studies on changed antenatal care programs that introduce virtual visits for healthy pregnant women with a low risk for adverse outcomes, without risking quality, safety, and increased costs.

Objective To investigate the treatment decision-making process after an anterior cruciate ligament (ACL) injury from patients, orthopaedic surgeons and physiotherapists perspectives. Methods The study is a part of the NACOX study, which is designed to describe the natural corollaries after ACL injury. For the present study, a subgroup 101 patients were included. Patients, their orthopaedic surgeons and their physiotherapists, answered a Shared Decision-Making Process (SDMP) questionnaire, when treatment decision for ACL reconstruction surgery (ACLR) or non-reconstruction (non-ACLR) was taken. The SDMP questionnaire covers four topics: " informed patient", " to be heard", " involvement" and " agreement". Results Most (75-98%) patients considered their needs met in terms of being heard and agreement with the treatment decision. However, fewer in the non-ACLR group compared to the ACLR group reported satisfaction with information from the orthopaedic surgeon (67% and 79%), or for their own involvement in the treatment decision process (67% and 97%). Conclusion and practice implications Most patients and caregivers considered that patients needs to be informed, heard and involved, and to agree with the decision about the treatment process, were fulfilled to a high extent. However, patients where a non-ACLR decision was taken experienced being involved in the treatment decision to a lower extent. This implies that the non-ACLR treatment decision process needs further clarification, especially from the patient involvement perspective.

Sammanfattande synpunkter från deltagande regioner

I projektet beskrev deltagarna hur prioritering och resursfördelning går till i respektive region idag och hur de skulle vilja utveckla arbetet framöver.

Deltagarna beskrev ett antal viktiga förutsättningar för att på ett systematiskt sätt, med utgångspunkt från befolkningens hälsa och behov av hälso- och sjukvård, kunna prioritera och fördela resurser till de med störst behov.

• Ett tydligt uppdrag från politiken att leverera strukturerade underlag som underlättar diskussion och beslut om prioriteringar.
• En tydlig mottagare av underlag och analyser med uppdrag att agera vidare utifrån dessa.
• Ett strukturerat arbetssätt och tydliga roller för både förtroendevalda och tjänstepersoner.
• Skapa förutsättningar i organisationen för att genomföra hela processen.
• En god dialog mellan förtroendevalda, tjänstepersoner och vårdprofession.
• En gemensam förståelse för vad som ska uppnås med prioriteringarna.
• Behovsanalyser både avseende bredd (stora grupper) och djup (specifika tillstånd).
• Beskrivning av utfallet av hälso- och sjukvårdens åtgärder i form av hälsovinster i befolkningen samt kostnaderna för att åstadkomma dessa hälsovinster.
• Beslut om prioriteringar som grundas på fakta och framtagna underlag.
• Uppföljning av beslutade prioriteringar genom dialog på flera nivåer (politik, tjänsteperson, vårdprofession, patient och befolkning).

För att få genomslag för politiska prioriteringar i en hel region har förtroendevalda i fullmäktige, styrelser och nämnder ett särskilt ansvar.

Regiondirektör, hälso- och sjukvårdsdirektör, ekonomidirektör och budgetchef behöver vara engagerade och tjänstepersoner med kompetens från hälso- och sjukvård, regional utveckling, ekonomi och analys behöver bilda ett tvärprofessionellt team.

Det är nödvändigt att säkra en gemensam förståelse för behovet av politiska prioriteringar i verksamheterna och hos befolkningen.

In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve“good palliative care”. The aim of this study has been to analyse how experts make sense of the development and the currentstate of palliative care. Departing from this aim, focus has been on identifying how personal experiences of ‘the self’ areintertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliativecare. Twelve qualitative interviews were conducted. Four scripts were identifed after analysing the empirical material: 1.script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain defnitions. The fndings of this studyillustrate how experts in complex ways intertwine experiences of ‘the self’ with meta-levels concepts in order to make senseof the feld of palliative care. The participants did not endorse one “right way” of “good” deaths. Instead, palliative care wasconsidered to be located in a complex state where the historical development, consisting of both desirable ideals, death denialsand lack of guidelines, and more recent developments of strives towards universal concepts, “improvement” and increasedbureaucracy altogether played a signifcant role for how palliative care has developed and is organised and conducted today.

Objectives To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients and family caregivers unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.

In 2013, Motala Municipality started a long-term development of systematic priority setting. Its vision was to increase the possibility of fulfilling politically prioritised goals for the municipality. During the years 2013-2015, tools and working methods for prioritisation were developed for decisions at the political management level, as has been described in a previous report. The present report describes development work during the years 2016-2018.

The purpose of this report is to describe and analyse how tools and routines for priority setting have been implemented and have become established in the management system at Motala Municipality, in all fields of responsibility.

Through action research, the authors have both studied and provided support in the municipality’s development work. Data have been collected from observation, documents, surveys, dialogues, and e-mails. The information has been analysed both descriptively and from perspectives of improvement and implementation.

The work with priority setting in Motala Municipality has been developed in improvement cycles and has been implemented at the same time. This has been conducted in close collaboration between officials, managers, politicians, and the authors. Through this, joint learning and knowledge have been developed, both in the organisation and in the research field. The implementation has included activities to create common knowledge and awareness of principles and key concepts related to prioritisation, rationing and efficiency, as well as how these can be used in structured factual data in the management and distribution of resources. These facts have been central starting points for discussions and decisions on prioritisation and resource allocation. An important source of information has been analyses of the ongoing work at the units in the municipality, based on the goals and quality indicators of each unit, in the municipality’s quality system.

The prioritisation work has led to new working routines being integrated into the municipality’s planning, follow-up, and budget processes. Motala Municipality now has approved routines that are used for systematic priority setting in its management system. This gives the municipality the conditions required to discuss and set priorities in a conscious manner and on a sound basis when allocating resources, in both difficult and good times.

Study Design: Qualitative descriptive. Introduction: Dupuytren's disease (DD) is a chronic hand condition causing impairment in hand function. Research describing persons' experiences of living with DD is limited. Understanding the subjective experience of illness is valuable for planning and implementing health-care services. Purpose of the Study: To explore experiences among men living with an impaired hand function due to DD and the consequences of the disease for daily activities. Methods: Interviews were conducted with 21 men before surgery. The model of the patient evaluation process guided data collection. Data were analyzed using problem-driven content analysis. Results: Participants described DD as a chronic disease caused by heredity, previous injury, hard work, or aging. DD was, according to the participants, an uncomfortable and sometimes painful condition, causing a feeling of constant stiffness in the affected hand. DD could cause participants to have fear of hurting the hand, feelings of shame or embarrassment, and a sense of being old. Participants handled the deteriorating hand function by avoiding or refraining from activities, adapting their performance, or performing activities with less quality. The ideal hand function was seen as being able to use the hands without effort. Discussion: The diverse experiences of DD and if the hand is experienced as something that causes distress can be understood further using body-self dialectic and Gadow's states of embodiment, as well as the process of adapting and learning to live with the functional limitations. Conclusions: A clinical implication for hand therapy is to acknowledge patients' individual experiences and support self-modifications and development of new skills.

Background This study aimed to identify factors associated with health-related quality of life (HRQoL) and the burden on the relatives of older people with multi-morbidity. Methods A secondary analysis of baseline data from 296 dyads, including older patients with multimorbidity and their relatives, which were previously collected in a randomized study. The analysis was conducted to select correlated independent variables to enter a final linear regression analysis of two models with different endpoints: the relatives HRQoL (EQ5D index) and burden (COPE index: Negative impact scale). Results Sixteen variables correlated with the relatives HRQoL, and 15 with the relatives burden. Both the HRQoL and burden correlated with both patient and relative variables. A high HRQoL was associated with relatives working/studying. A high burden was associated with caring for an older person with changed behaviour. A low burden was associated with the relatives high scores on positive values of caring, quality of support and HRQoL. Conclusion Older persons and their relatives should be considered as a unit in the development of support of older people in order to increase the health and quality of life of both groups. To support and protect relatives from a high burden, potential measures could include improving the relatives HRQoL and strengthening their ability to find positive values in care and strengthening reliable and good support from others. The relatives HRQoL explained the variation in the burden. However, the burden did not explain the variation in the HRQoL, which suggests that the relatives HRQoL is not so readily affected by their burden, whereas the relatives HRQoL can influence their burden. The variables used in the regression analyses where chosen to reflect important aspects of the relatives and older persons situations. The final models explained 38% of the variation in the relatives burden but only 10% of the variation in their HRQoL. This could be important to consider when choosing outcome assessments in future studies.

Background To achieve good and equal oral health in children, interdisciplinary preventive oral health actions, directed toward disadvantaged areas, can be an important means. Staff play a crucial role in the implementation of these actions. The aim of the present study was to analyze circumstances of importance for conducting an interdisciplinary public preventive oral health project for children, directed toward parents in areas with low socioeconomic status from the interdisciplinary perspective of the involved staff. Method The present study consisted of a qualitative content analysis with an inductive approach, based on interviews with interdisciplinary staff who had participated in a public preventive oral health project directed toward parents in areas with low socioeconomic status. The interviews were analyzed using text-driven analysis. Results The main category concerned the staff members prerequisites and understanding necessary to perform their tasks in interdisciplinary public preventive oral health project. To have the right prerequisites and understanding regarding the oral health project enabled staff to be committed, able and willing to perform in it. Important aspects of this are to have knowledge, motivation and to experience a supportive professional context, to have good leadership and for certain resources to fulfilled. A crucial aspect was to reach the targeted mothers. Conclusions For interdisciplinary cooperation in preventive oral health care to be achieved, it is essential for the involved disciplines and professions to embrace a common view on the projects aim, their duties, and oral health, from the leadership to the individual level. Staff require competent leadership but also allocated time and adapted method support to be successful in this context. When allocating preventive health actions directed at low SES areas, it is important to acknowledge the risk of stigmatization and for staff to understand that families might be facing social challenges that prevent them from taking part in health-promoting actions. An important conclusion is that to be able to reach people, it is important for both those who design preventive programs for oral health and the staff who administer them to have sufficient knowledge about the target group.

Background Despite evidence that family members support to each other can be of importance to its members, there are limited studies of factors related to family members sense of such support during palliative care. Aim Based on the family systems approach, we evaluated which factors were associated with family members sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. Design A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. Methods Generalised linear models were used to evaluate individual factors related to family members sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. Results Nineteen variables were identified that were significantly associated with the family members sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. Conclusions Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.

BackgroundIt has been recognised that more evidence about important aspects of family members sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members sense of security during palliative care, and iii) to evaluate if family members sense of security during ongoing palliative care predicts well-being during bereavement.MethodsBetween September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patients death (70%). They answered a single question regarding the family members sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link).ResultsSixteen variables were positively related to family members sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members perceived quality of life. Moreover, the family members sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patients death, e.g. psychological well-being, complicated grief symptoms, health related quality of life.ConclusionsThe findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

BackgroundThe prevalence of multimorbidity is increasing worldwide, and older people with multimorbidity are frequent users of health care services. Since multimorbidity has a significant negative impact on Health-related Quality of Life (HrQoL) and is more common in older age it would be expected that factors related to HrQoL in this group might have been thoroughly researched, but this is not the case. Furthermore, it is important to look at old people living at home, considering the shift from residential to home-based care. Therefore, we aim to investigate factors that are related to HrQoL in older people with multimorbidity and high health care consumption, living at home.MethodsThis is a secondary analysis of a RCT study conducted in a municipality in south-eastern Sweden. The study had a longitudinal design with a two-year follow-up period assessing HrQoL, symptom burden, activities of daily living, physical activity and depression.ResultsIn total, 238 older people with multimorbidity and high health care consumption, living at home were included (mean age 82, 52% female). A multiple linear regression model including symptom burden, activities of daily living and depression as independent variables explained 64% of the HrQoL. Higher symptom burden, lower ability in activities of daily living and a higher degree of depression were negatively related to HrQoL. Depression at baseline and a change in symptom burden over a two-year period explained 28% of the change in HrQoL over a two-year period variability. A higher degree of depression at baseline and negative change in higher symptom burden were related to a decrease in HrQoL over a two-year period.ConclusionIn order to facilitate better delivery of appropriate health care to older people with high health care consumption living at home it is important to assess HrQoL, and HrQoL over time. Symptom burden, activities of daily living, depression and change in symptom burden over time are important indicators for HrQoL.Trial registrationClinicaltrials.gov identifier: NCT01446757, the trial was registered prospectively with the date of trial registration October 5(th), 2011.

PURPOSE: To explore and describe clients' needs during a surgical intervention process for Dupuytren's disease.

MATERIALS AND METHODS: Design: Interview study with 21 men undergoing surgical intervention for Dupuytren's disease. Qualitative content analysis was performed with the model of Patient Evaluation Process as a theoretical framework.

RESULTS: The primary reason for seeking medical care was to receive an intervention to improve hand function. The need for knowledge was evident during the care process, and was connected to involvement in decision-making. During surgery and rehabilitation, participants needed support with pain relief, a sense of security, support for self-care, or sick leave. There was also a need for participation in the evaluation and improvement of care. Clients' life situations contributed to the occurrence of needs or were a resource for handling them. Depending on patient character, clients handled their perceived needs differently.

CONCLUSIONS: Clients' needs during a surgical intervention process include needs for improvement of hand function, knowledge, and support during treatment, and participation in evaluation. Clients' needs change during the care process and can be influenced by their life situation or their character. The identified needs ought to be included in quality assessments from the carers' perspective, to ensure that important needs of the clients are met by the surgical intervention process. Communication and interaction between client and health care provider is a key aspect of fulfilling clients' needs. Implications for rehabilitation Patients have need for knowledge throughout the care process: about the disease, risk factors, treatment options, practical and medical information related to the treatment and recovery, and about the care process as a whole. Need for knowledge is closely connected to patients' experience of being involved in decision making. Patients need support with both general human and specific medical issues during surgery and rehabilitation. Patients' needs change during the care process and can be influenced by the patient's life situation or character. From the carers' perspective, the identified needs ought to be included in quality assessments to ensure that important needs of the clients are met by the surgical intervention process.

Objectives Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period. Methods Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyads status at follow-up. Results Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change. Discussion The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

The importance for governments of establishing ethical principles and criteria for priority setting in line with social values, has been emphasised. The risk of such criteria not being operationalised and instead replaced by de-contextualised priority-setting tools, has been noted. The aim of this article was to compare whether citizenś views are in line with how a criterion derived from parliamentary-decided ethical principles have been interpreted into a framework for evaluating severity levels, in resource allocation situations in Sweden. Interviews were conducted with 15 citizens and analysed by directed content analysis. The results showed that the multi-factorial aspects that participants considered as relevant for evaluating severity, were similar to those used by professionals in the Severity Framework, but added some refinements on what to consider when taking these aspects into account. Findings of similarities, such as in our study, could have the potential to strengthen the internal legitimacy among professionals, to use such a priority-setting tool, and enable politicians to communicate the justifiability of how severity is decided. The study also disclosed new aspects regarding severity, of which some are ethically disputed, implying that our results also reveal the need for ongoing ethical discussions in publicly-funded healthcare systems.

Background: In order to improve attendance at exercise-based cardiac rehabilitation (CR), a greater insight into patients perspectives is necessary. The aim of the study was to explore aspects that influence patients attendance at exercise-based CR after acute coronary artery disease (CAD) and the role of the physiotherapist in patients attendance at exercise-based CR. Methods: A total of 16 informants, (5 women; median age 64.5, range 47-79 years), diagnosed with CAD, were included in the study at the Cardiology Department, Linkping University Hospital, Sweden. Qualitative interviews were conducted and analysed according to inductive content analysis. Results: Four main categories were identified: (i) previous experience of exercise, (ii) needs in the acute phase, (iii) important prerequisites for attending exercise-based CR and (iv) future ambitions. The categories demonstrate that there are connections between the past, the present and the future, in terms of attitudes to facilitators, barriers and the use of strategies for managing exercise. An overall theme, defined as existential thoughts, had a major impact on the patients attitudes to attending exercise-based CR. The interaction and meetings with the physiotherapists in the acute phase were described as important factors for attending exercise-based CR. Moreover, informants could feel that the physiotherapists supported them in learning the right level of effort during exercise and reducing the fear of exercise. Conclusions: This study adds to previous knowledge of barriers and facilitators for exercise-based CR that patients with CAD get existential thoughts both related to exercise during the rehabilitation process and for future attitudes to exercise. This knowledge might necessitate greater attention to the physiotherapist-patient interaction. To be able to tailor exercise-based CR for patients, physiotherapists need to be aware of patients past experiences of exercise and previous phases of the rehabilitation process as these are important for how patients perceive their need and ability of exercise.

Motala municipality is the first municipality which has, systematically, taken on priority setting and resource allocation within all its administrative areas, based on the ethical principles and guidelines for priority settings applicable to health care. The work comprises development of a tool for priority setting, adapted to a municipal context, and using it in systematic setting of priorities combined with political goals and visions. The intention is that the setting of priorities will be developed into a sustainable routine, integrated into the existing budget process.

The purpose of this report is to describe the first stage of the development work with the associated work processes, and to analyse it from an improvement and implementation perspective. The report spans the years 2013-2015.

The involvement of the National Centre for Priority Setting in Health Care in Motala municipality has meant that we, by so called action research, have studied the development of the priority-setting work, while giving support to the municipality and participating in the development of tools and processes. Data collection was undertaken through observations, documents, surveys and contacts of varying kinds.

In Motala municipality the priority setting process and its tools were developed in close collaboration with the actors involved, those who would become the users. Priority setting has been integrated into the municipality’s existing management system and routines. The development has taken place gradually in small improvement cycles. In this way, knowledge and learning was built up within the organisation and the work has been characterised by long-term sustainability.

Motala municipality’s development of tools and processes for priority setting shows that it is possible to be guided by national ethical principles for priority setting within health care, and it is feasible to combine this with political goals and visions. It has also been possible to include all the administrations of the municipality in the setting of priorities, in an open, systematic process linked to regular budgeting.

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. (c) 2016 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

Numera framhålls det ofta att patienter och medborgare ska ta ett aktivt ansvar för sin hälsa och att patienter ska vara aktiva parter i hälso- och sjukvård. Det har inte alltid varit så, synen på patienter och deras ställning i hälso- och sjukvård har genomgått och genomgår en ständig förändring. Denna förändring avspeglar skeenden i samhället i stort när det gäller synen på individens inflytande, självbestämmande och ansvar. För att förstå vår nutid behöver vi känna till och förstå vår dåtid brukar det sägas. Det mottot har även bäring på vår förståelse av samspelet mellan hälso- och sjukvården och patienter. Vi behöver känna till förändringarna som synen på patienter har genomgått eftersom vården möter och ska tillgodose vårdbehov hos människor i alla åldrar, inte minst de som snart är ett sekel gamla. De som varit med länge kan ha andra förväntningar på vad det innebär att vara patient än de som är unga idag.

Purpose To explore patients’ perspectives on surgical intervention for Dupuytren’s disease (DD), focusing on patients’ appraisal of results, involving previous experiences, expectations and patient characters.

Method The participants were 21 men, mean age 66 years, scheduled for DD surgery. Qualitative interviews were conducted 2–4 weeks before surgery and 6–8 months after surgery. The model of the Patient Evaluation Process was used as theoretical framework. Data were analyzed using problem-driven content analysis.

Results Five categories are described: previous experiences, expectations before surgery, appraisal of results, expectations of the future and patient character. Previous experiences influenced participants’ expectations, and these were used along with other aspects as references for appraisal of results. Participants’ appraisal of results concerned perceived changes in hand function, care process, competency and organization, and could vary in relation to patient character. The appraisal of results influenced participants’ expectations of future hand function, health and care.

Conclusions Patients’ appraisal of results involved multidimensional reasoning reflecting on hand function, interaction with staff and organizational matters. Thus, it is not enough to evaluate results after DD surgery only by health outcomes as this provides only a limited perspective. Rather, evaluation of results should also cover process and structure aspects of care.

Implications for Rehabilitation

• To improve health care services, it is important to be aware of the role played by patient’s previous experiences, expectations as well as staff and organizational aspects of care.
• Knowledge about patients’ experience and view of the results from surgery and rehabilitation should be established by assessment of care effects on health as well as structure and process aspects of care.
• Evaluation of structure and process aspects of care can be done by using questions about if the patient felt listened to, received clear information and explanations, was included in decision-making, and their view of waiting time or continuity of care.
• Improving health care services means not only providing the best treatment method available but also developing individualized care by ensuring good interaction with the patient, providing accurate information, and working to improve the structure of the care process.
• Before treatment, health care providers should have a dialogue with the patient and consider previous experiences and expectations in order to ensure the patient has balanced expectations of the outcome.

This study compared the caring situation, health, self-efficacy, and stress of young (16-25) informal carers (YICs) supporting a family member with mental illness with that of YICs supporting a friend. A sample of 225 carers, assigned to a family group (n = 97) or a friend group (n = 128) completed the questionnaire. It was found that the family group experiences a lower level of support and friends experienced a lower positive value of caring. No other differences in health, general self-efficacy and stress were found. YICs endure different social situations, which is why further study of the needs of YICs, especially those supporting friends, is urgently needed.

OBJECTIVES: To examine costs and effects of care based on comprehensive geriatric assessment (CGA) provided by an ambulatory geriatric care unit (AGU) in addition to usual care.

DESIGN: Assessor-blinded, single-center randomized controlled trial.

SETTING: AGU in an acute hospital in southeastern Sweden.

PARTICIPANTS: Community-dwelling individuals aged 75 years or older 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 and randomized to the intervention group (IG; n = 208) or control group (CG; n = 174). Mean age (SD) was 82.5 (4.9) years.

INTERVENTION: Participants in the IG received CGA-based care at the AGU in addition to usual care.

OUTCOME MEASURES: The primary outcome was number of hospitalizations. Secondary outcomes were days in hospital and nursing home, mortality, cost of public health and social care, participant' sense of security in care, and health-related quality of life (HRQoL).

RESULTS: Baseline characteristics did not differ between groups. The number of hospitalizations did not differ between the IG (2.1) and CG (2.4), but the number of inpatient days was lower in the IG (11.1 vs 15.2; P = .035). The IG showed trends of reduced mortality (hazard ratio 1.51; 95% confidence interval [CI] 0.988-2.310; P = .057) and an increased sense of security in care interaction. No difference in HRQoL was observed. Costs for the IG and CG were 33,371£ (39,947£) and 30,490£ (31,568£; P = .432).

CONCLUSIONS AND RELEVANCE: This study of CGA-based care was performed in an ambulatory care setting, in contrast to the greater part of studies of the effects of CGA, which have been conducted in hospital settings. This study confirms the superiority of this type of care to elderly people in terms of days in hospital and sense of security in care interaction and that a shift to more accessible care for older people with multimorbidity is possible without increasing costs. This study can aid the planning of future interventions for older people.

TRIAL REGISTRATION: clinicaltrials.gov identifier: NCT01446757.

Study design: Prospective cohort study. Introduction: The evidence of the relationship between functional recovery and impairment after surgery and hand therapy are inconsistent. Purpose of the study: To explore factors that were most related to functional recovery as measured by DASH in patients with Dupuytrens disease. Methods: Eighty-one patients undergoing surgery and hand therapy were consecutively recruited. Functional recovery was measured by the Disability of the Arm, Shoulder and Hand (DASH) questionnaire. Explanatory variables: range of motion of the finger joints, five questions regarding safety and social issues of hand function, and health-related quality of life (Euroqol). Results: The three variables "need to take special precautions", "avoid using the hand in social context", and health-related quality of life (EQ-5D index) explained 62.1% of the variance in DASH, where the first variable had the greatest relative effect. Discussion: Safety and social issues of hand function and quality of life had an evident association with functional recovery. Level of evidence: IV.

Vårt syfte med denna rapport är att öka kunskapen om vad medborgare tillfrågats om i forskningsstudier avseende prioritering och ransonering inom hälso- och sjukvård. Avsikten är också att belysa studiernas syfte och tillvägagångssätt för att genom det få information om i vilken grad det finns tillförlitlig, överförbar och generaliserbar kunskap om vad medborgare tänker, anser och vill i dessa frågor. En sådan översikt kan visa på eventuella kunskapsluckor och därigenom belysa behov av framtida studier.

Vi utgick från en metod för översiktsstudier och utvecklade sökord, granskningsstruktur och inklusions- och exklusionskriterier. I sökningen användes en kombination av sökord i tre databaser för internationella vetenskapliga tidskrifter. I granskning av artiklarna kategoriserades de utifrån vad medborgare hade blivit tillfrågad om, åtta frågeområden kunde identifieras.

Denna rapport bygger på ett delresultat och omfattar artiklar inom tre frågeområden: öppenhet, prioriteringsprocesser och beslutsfattare. Av dem handlar fyra studier om öppenhet, tre om prioriteringsprocessen och nitton om beslutsfattare. De kommer från nio olika länder, varav de flesta från Europa, och är publicerade från 1993 till 2013. Studierna baseras på både kvalitativ och kvantitativa metoder av olika slag.

Sammantaget gav vår artikelöversikt relativt få artiklar inom de tre frågeområden som ingår i rapporten och det finns även en del metodbrister i dessa studier t.ex. i urval och frågornas precisering. Det råder därmed osäkerhet om vad medborgare tänker, anser och vill när det gäller öppenhet, prioriteringsprocesser och beslutsfattare. Några exempel på kunskapsbrister som vår artikelöversikt pekar på är att kunskapen om svenska medborgares syn på dessa tre frågeområden är bristfällig och kunskap om hur medborgarnas åsikter förändras över tid saknas. Det råder även brist på kunskap om det finns skillnader mellan medborgare från olika länder inklusive Sverige, och deras syn på dessa tre frågeområden om prioritering och ransonering samt om deras syn skiljer sig åt i relation till välfärdssystem, demokratiska system, auktoritetskultur, grad av tillit, trygghet, etc.

Andra kunskapsbrister gäller vilka faktorer som kan ha betydelse för medborgares syn när det gäller dessa tre frågeområden samt vad sådana faktorer i så fall skulle få för konsekvenser t.ex. för hur frågor ska ställas till medborgare, hur beslut beskrivs, hur beslutsprocesser ska gå till och öppenheten kring beslut.

Det saknas även kunskap om involvering av medborgare verkligen leder till det som ofta framhålls som motiv för att involvera dem t.ex. bättre beslut, ökad legitimitet i beslut och större acceptans och tillit hos medborgare och/eller att de uppskattar detta som en demokratisk handling. Det saknas också kunskap om och problematisering av hur medborgares åsikter ska vägas mot andra gruppers synpunkter t.ex. i relation till politiker som är utsedda genom demokratiska val.

Dessa kunskapsbrister kan vara utgångspunkter för framtida intressanta och viktiga studier där medborgare tillfrågas om hur de ser på öppenhet,prioriteringsprocesser och beslutsfattare. Det kan ge betydelsefull kunskap om vilken roll medborgare och andra aktörer kan och bör ha i relation till prioritering och ransonering, vilka aktiviteter som bör genomföras och vilka konsekvenser det kan ge.

Background:

Non-communicable diseases are a leading cause of death and can largely be prevented by healthy lifestyles. Health care organizations are encouraged to integrate healthy lifestyle promotion in routine care. This study evaluates the impact of a team initiative on healthy lifestyle promotion in primary care.

Methods: A quasi-experimental, cross-sectional design compared three intervention centres that had implemented lifestyle teams with three control centres that used a traditional model of care. Outcomes were defined using the RE-AIM framework: reach, the proportion of patients receiving lifestyle promotion; effectiveness, self-reported attitudes and competency among staff; adoption, proportion of staff reporting regular practice of lifestyle promotion; implementation, fidelity to the original lifestyle team protocol. Data collection methods included a patient questionnaire (n = 888), a staff questionnaire (n = 120) and structured interviews with all practice managers and, where applicable, team managers (n = 8). The chi square test and problem-driven content analysis was used to analyse the questionnaire and interview data, respectively.

Results:Reach: patients at control centres (48%, n = 211) received lifestyle promotion significantly more often compared with patients at intervention centres (41%, n = 169). Effectiveness: intervention staff was significantly more positive towards the effectiveness of lifestyle promotion, shared competency and how lifestyle promotion was prioritized at their centre. Adoption: 47% of staff at intervention centres and 58% at control centres reported that they asked patients about their lifestyle on a daily basis. Implementation: all intervention centres had implemented multi-professional teams and team managers and held regular meetings but struggled to implement in-house referral structures for lifestyle promotion, which was used consistently among staff.

Conclusions:Intervention centres did not show higher rates than control centres on reach of patients or adoption among staff at this stage. All intervention centres struggled to implement working referral structures for lifestyle promotion. Intervention centres were more positive on effectiveness outcomes, attitudes and competency among staff, however. Thus, lifestyle teams may facilitate lifestyle promotion practice in terms of increased responsiveness among staff, illustrated by positive attitudes and perceptions of shared competency. More research is needed on lifestyle promotion referral structures in primary care regarding their configuration and implementation.

Background: Globally, the population is ageing and lives with several chronic diseases for decades. A high symptom burden is associated with a high use of healthcare, admissions to nursing homes, and reduced quality of life. The aims of this study were to describe the multidimensional symptom profile and symptom burden in community-dwelling older people with multimorbidity, and to describe factors related to symptom burden. Methods: A cross-sectional study including 378 community-dwelling people greater than= 75 years, who had been hospitalized greater than= 3 times during the previous year, had greater than= 3 diagnoses in their medical records. The Memorial Symptom Assessment Scale was used to assess the prevalence, frequency, severity, distress and symptom burden of 31 symptoms. A multiple linear regression was performed to identify factors related to total symptom burden. Results: The mean number of symptoms per participant was 8.5 (4.6), and the mean total symptom burden score was 0.62 (0.41). Pain was the symptom with the highest prevalence, frequency, severity and distress. Half of the study group reported the prevalence of lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score. Conclusion: The older community-dwelling people with multimorbidity in this study suffered from a high symptom burden with a high prevalence of pain. Persons with poor vision, likelihood of depression, and diseases of the digestive system are at risk of a higher total symptom burden and might need age-specific standardized guidelines for appropriate management.

CONTEXT: Relatives' sense of security in their family members' palliative home care is important, and a valid and reliable instrument is needed to measure this.

OBJECTIVES: The aim of this article is to report the development, structure, and psychometric properties of a new instrument, the Sense of Security in Care-Relatives' Evaluation (SEC-R), in palliative home care.

METHODS: Instrument development was based on a previous study and review of the literature; 213 relatives (55% women) of patients in palliative home care were recruited (response rate 73%) and participated in a structured interview based on a questionnaire. Principal component analysis (PCA) was used to identify subscales. The construction was tested in correlation with other scales and questions representing concepts expected to be related to sense of security in care.

RESULTS: The PCA resulted in three subscales, namely care interaction, mastery and patient situation, which had an explained variance of 53%. Internal consistency of the subscales ranged from 0.76 to 0.78. The final instrument comprises 17 items. The scales were associated with the quality-of-care process and the relatives' situation, perceived health, quality of life, stress, general sense of security, and general sense of security in care.

CONCLUSION: The SEC-R provides a three-component assessment of palliative home care settings using valid and reliable scales associated with other concepts. The SEC-R is a manageable means of assessment that may contribute to quality-of-care measures and to further research on relatives' sense of security in care.

Background: Primary care is increasingly being encouraged to integrate healthy lifestyle promotion in routine care. However, implementation has been suboptimal. Coordinated care could facilitate lifestyle promotion practice but more empirical knowledge is needed about the implementation process of coordinated care initiatives. This study aimed to evaluate the implementation of a coordinated healthy lifestyle promotion initiative in a primary care setting.

Methods: A mixed method, convergent, parallel design was used. Three primary care centres took part in a two-year research project. Data collection methods included individual interviews, document data and questionnaires. The General Theory of Implementation was used as a framework in the analysis to integrate the data sources.

Results: Multi-disciplinary teams were implemented in the centres although the role of the teams as a resource for coordinated lifestyle promotion was not fully embedded at the centres. Embedding of the teams was challenged by differences among the staff, patients and team members on resources, commitment, social norms and roles.

Conclusions: The study highlights the importance of identifying and engaging key stakeholders early in an implementation process. The findings showed how the development phase influenced the implementation and embedding processes, which add aspects to the General Theory of Implementation.

Participatory design (PD) projects involve prospective users as co-designers in a process where the design object emerges through several iterations. However, the result of such a process can only partly anticipate how the future real users will use the designed object. For this reason, its actual use needs to be investigated. The present study investigated the relationship between intended use and real use in two web-based health support systems in order to explore the conditions for redesign. The dependency between intended use and real use was found to be weak. Rather, the real use was dependent on 1) the context of use and 2) the needs or interest of the users. We conclude that redesign should be based on continuous use of web metrics collected in natural settings and by involving users on a recurring basis. While a web health portal must have an agenda it is important to adapt thing design to use design, why redesign in essence will become an adaptation to user needs

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 wellbeing. 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.

PURPOSE:

To describe changes in joint motion, sensibility, and scar pliability and to investigate the patients' expectations, self-reported recovery, and satisfaction with hand function, disability, and quality of life after surgery and hand therapy for Dupuytren disease.

METHODS:

This prospective cohort study collected measurements before surgery and 3, 6, and 12 months after surgery and hand therapy. Ninety patients with total active extension deficits of 60° or more from Dupuytren contracture were included. Outcomes measures were range of motion; sensibility; scar pliability; self-reported outcomes on expectations, recovery, and satisfaction with hand function; Disabilities of the Arm, Shoulder, and Hand scores; safety and social issues of hand function; physical activity habits; and quality of life with the Euroqol.

RESULTS:

The extension deficit decreased, and there was a transient decrease in active finger flexion during the first year after surgery. Sensibility remained unaffected. Generally, patients with surgery on multiple fingers had worse scar pliability. The majority of the patients had their expectations met, and at 6 months, 32% considered hand function as fully recovered, and 73% were satisfied with their hand function. Fear of hurting the hand and worry about not trusting the hand function were of greatest concern among safety and social issues. The Disability of the Arm, Shoulder, and Hand score and the Euroqol improved over time.

CONCLUSIONS:

After surgery and hand therapy, disability decreased independent of single or multiple operated fingers. The total active finger extension improved enough for the patients to reach a functional range of motion despite an impairment of active finger flexion still present 12 months after treatment.

Objectives: To explore and theorize how patients perceive, interpret, and reactin healthy lifestyle promotion situations in primary care and to investigate patients role in implementation of lifestyle promotion illustrated by typologies. Methods: Grounded theory was used to assess qualitative interview data from 22 patients with varied experience of healthy lifestyle promotion. Data were analyzed by constant comparative analysis. Results: A substantive theory of being healthy emerged from the data. The theory highlights the processes that are important for implementation before, during, and after lifestyle promotion. Three interconnected categories emerged from the data: conditions for being healthy, managing being healthy, and interactions about being healthy; these formed the core category: being healthy. A typology proposed four patient trajectories on being healthy: resigned, receivers, coworkers, and leaders. Conclusion: Patients coproduced the implementation of lifestyle promotion through the degree of transparency, which was a result of patients expectations and situation appraisals. Practice implications: Different approaches are needed during lifestyle promotion depending on a variety of patient-related factors. The typology could guide practitioners in their lifestyle promotion practice.

Background: Integration of lifestyle promotion in routine primary care has been suboptimal. Coordinated care models (e.g. screening, brief advice and referral to in-house specialized staff) could facilitate lifestyle promotion practice; they have been shown to increase the quality of services and reduce costs in other areas of care. This study evaluates the long-term impact of a coordinated lifestyle promotion intervention with a multidisciplinary team approach in a primary care setting. Methods: A quasi-experimental, cross-sectional design was used to compare three intervention centres using a coordinated care model and three control centres using a traditional model of lifestyle promotion care. Outcomes were inspired by using the RE-AIM framework: reach, the proportion of patients receiving lifestyle promotion; effectiveness, self-reported attitudes and competency among staff; adoption, proportion of staff reporting daily practice of lifestyle promotion and referral; and implementation, of the coordinated care model. The impact was investigated after 3 and 5 years. Data collection involved a patient questionnaire (intervention, n = 433-497; control, n = 455-497), a staff questionnaire (intervention, n = 77-76; control, n = 43-56) and structured interviews with managers (n = 8). The X-2 test or Fisher exact test with adjustment for clustering by centre was used for the analysis. Problem-driven content analysis was used to analyse the interview data. Results: The findings were consistent over time. Intervention centres did not show higher rates for reach of patients or adoption among staff at the 3- or 5-year follow-up. Some conceptual differences between intervention and control staff remained over time in that the intervention staff were more positive on two of eight effectiveness outcomes (one attitude and one competency item) compared with control staff. The Lifestyle team protocol, which included structural opportunities for coordinated care, was implemented at all intervention centres. Lifestyle teams were perceived to have an important role at the centres in driving the lifestyle promotion work forward and being a forum for knowledge exchange. However, resources to refer patients to specialized staff were used inconsistently. Conclusions: The Lifestyle teams may have offered opportunities for lifestyle promotion practice and contributed to enabling conditions at centre level but had limited impact on lifestyle promotion practices.

CONTEXT:

Having a sense of security is vitally important to patients who have a limited life expectancy.

OBJECTIVES:

We sought to identify the factors associated with patients' sense of security during the palliative care period.

METHODS:

We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link).

RESULTS:

Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model.

CONCLUSION:

These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.

OBJECTIVE: Mutual support within the family is of great importance to maintain its proper functioning. The study aim, which was based on a family system approach, was to evaluate which variables are associated with patients' sense of support within the family in the palliative care context.

METHODS: We recruited 174 adult patients (65% of those eligible) from six palliative home care units, who had non-curable disease with an expected short-term survival, such as disseminated cancer or non-malignant diagnosis. The relationship between the endpoint and individual factors were evaluated in a stepwise model-building procedure using generalised linear model (ordinal multinomial distribution and logit link).

RESULTS: The respondents' ratings of their sense of support within the family ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation 1.06). Patients who less frequently sensed family support experienced more often stress, worry about their private economy, lower self-efficacy, lower sense of security with palliative care provided (lower ratings on subscales of care interaction, mastery and prevailed own identity), more often anxiety, less often perceived general well-being for closest ones and less often sense of support from more distant family members. In the model building, three variables were selected to predict the patients' sense of support within the family.

CONCLUSIONS: The dying patients' sense of support within the family related to several factors, and these may help the palliative care teams to identify patients at risk and to alleviate suffering, for example, through supporting the closest family members.

ObjectiveThe aim of this paper is to report the development, construction, and psychometric properties of the new instrument Sense of Security in Care - Patients Evaluation (SEC-P) in palliative home care. MethodsThe preliminary instrument was based on a review of the literature and an analysis of qualitative interviews with patients about their sense of security. To test the instrument, 161 patients (58% women) in palliative home care were recruited and participated in a structured interview based on a comprehensive questionnaire (response rate 73%). We used principal component analysis to identify subscales and tested the construction in correlation with other scales and questions representing concepts that we expected to be related to sense of security in care. ResultsThe principal component analysis resulted in three subscales: Care Interaction, Identity, and Mastery, built on a total of 15 items. The component solution had an explained variance of 55%. Internal consistency of the subscales ranged from 0.84 to 0.69. Inter-scale correlations varied between 0.40 and 0.59. The scales were associated to varying degrees with the quality of the care process, perceived health, quality of life, stress, and general sense of security. ConclusionsThe developed SEC-P provides a three-component assessment of palliative home care settings using valid and reliable scales. The scales were associated with other concepts in ways that were expected. The SEC-P is a manageable means of assessment that can be used to improve quality of care and in research focusing on patients sense of security in care.

This paper examines differences in work restrictions of midlife family carers of older people in terms of prevalence, gender and explanatory variables, in six European countries: Germany, Greece, Italy, Poland, Sweden and the United Kingdom. A sample of 2,897 carers aged 45-64 was extracted from the EUROFAMCARE (Services for Supporting Family Carers of Older People in Europe: Characteristics, Coverage and Usage) European project database, in order to analyse four possible work restrictions experienced in connection with the activity of care-giving: the reduction of working hours; giving up working; difficulties in career developments and forced occasional work. The results show that work restrictions are experienced differently between countries especially by women: they are reported to a higher degree in the United Kingdom, Germany and Greece, less so in Italy, and seldom in Poland and Sweden. Gender differences within countries are not so marked. Country differences are explained in the light of the different welfare regimes characterising the countries under investigation, in order to elucidate how policy makers may act to improve working carers conditions through appropriate policies.

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.

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.

Purpose: The aim of this study was to examine relatives' perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives perceiving it to be of low significance. Method: A total of 47 relatives of PwDs within the Swedish Technology and Dementia project were interviewed telephonically using a modified version of the Patient perspective on Care and Rehabilitation process instrument. A total of 46 participants were divided into two groups depending on whether they valued the intervention to be of great significance (GS group; N = 33) or of some/no significance (SNS group; N = 13). Results: Several aspects of the intervention were perceived as highly important, e.g. being shown consideration and respect, and having somewhere to turn. The results indicate that relatives in the GS group perceived certain aspects of the intervention process as highly fulfilled to a larger extent than did relatives in the SNS group. Conclusions: This study illustrates how process evaluations can be used to increase the understanding and to identify improvement aspects of interventions.

The aim of this study was to explore how young (16-25 year old) informal carers of a person with a mental illness experience and use support. In a mixed method approach, we interviewed 12 young carers, and 241 completed a self-administered questionnaire. While the young carers strive to maintain control, their main support seems to be others in their lives, who often define the situation differently. The carers said web-support, counseling, and group counseling might be helpful, yet very few had any professional support. Young carers are greatly in need of support and it should be provided.