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  • 1.
    Arestedt, Liselott
    et al.
    Linnaeus Univ, Sweden.
    Martinsson, Caroline
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Hjelm, Carina
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Hjärt- och Medicincentrum, Thorax-kärlkliniken i Östergötland.
    Uhlin, Fredrik
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för läkemedelsforskning. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Hjärt- och Medicincentrum, Njurmedicinska kliniken US. Tallinn Univ Technol, Estonia.
    Eldh, Ann Catrine
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Uppsala Univ, Sweden.
    Patient participation in dialysis care-A qualitative study of patients and health professionals perspectivesIngår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background and objective End-stage renal disease (ESRD) affects a multitude of aspects in the patients daily life, often entailing their own involvement in various aspects of the treatment. Although patient participation is a core health-care value, what the concept signifies is not yet fully known. The purpose of this paper is to conceptualize patient participation in dialysis care, depicting patients and health-care professionals perspectives. Design This explorative study employed qualitative interviews and content analysis. Setting and participants Seven focus group discussions engaging 42 key informants were performed, including patients, staff and managers with experience of dialysis care. Results In dialysis care, patient participation connotes a sharing of information and knowledge, the learning of and planning of care, including partaking in shared decisions with regards to treatment and management, and being involved in the management of ones own health-care treatment and/or self-care activities. Although these attributes were illustrated by all stakeholders, their significance varied: patients suggested that their preferences regarding primary aspects of participation vary, while staff considered patients performance of dialysis to be the ultimate form of participation. Further, while patients considered multiple ways to execute participation, staff suggested that aspects such as sharing information were a route to, rather than actual, involvement. Conclusions Without a common understanding to denote the idea of patient participation, staff and patients are exposed to a potential deficit in terms of facilitating patient participation in everyday encounters of dialysis treatment. Further studies and means to serve a mutual understanding are needed.

  • 2.
    Broqvist, Mari
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Hälsouniversitetet.
    Garpenby, Peter
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för hälso- och sjukvårdsanalys. Linköpings universitet, Hälsouniversitetet.
    To accept, or not to accept, that is the question: citizen reactions to rationing2014Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 17, nr 1, s. 82-92Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background  The publicly financed health service in Sweden has come under increasing pressure, forcing policy makers to consider restrictions. Objective  To describe different perceptions of rationing, in particular, what citizens themselves believe influences their acceptance of having to stand aside for others in a public health service. Design  Qualitative interviews, analysed by phenomenography, describing perceptions by different categories. Setting and participants  Purposeful sample of 14 Swedish citizens, based on demographic criteria and attitudes towards allocation in health care. Results  Participants expressed high awareness of limitations in public resources and the necessity of rationing. Acceptance of rationing could increase or decrease, depending on one's (i) awareness that healthcare resources are limited, (ii) endorsement of universal health care, (iii) knowledge and acceptance of the principles guiding rationing and (iv) knowledge about alternatives to public health services. Conclusions  This study suggests that decision makers should be more explicit in describing the dilemma of resource limitations in a publicly funded healthcare system. Openness enables citizens to gain the insight to make informed decisions, i.e. to use public services or to 'opt out' of the public sector solution if they consider rationing decisions unacceptable.

  • 3.
    Eldh, Ann Catrine
    et al.
    FoU Seniorium, Danderyd; Örebro universitet, Hälsovetenskapliga institutionen.
    Ekman, Inger
    Institutionen för vårdvetenskap och hälsa, Sahlgrenska akademin, Göteborg.
    Ehnfors, Margareta
    Örebro universitet, Institutionen för vårdvetenskap och omsorg.
    Considering patient non-participation in health care.2008Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 11, nr 3, s. 263-71Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    OBJECTIVE: The aim of this study was to depict patient non-participation as described by a diverse group with recent experiences of being patients.

    BACKGROUND: Patient participation is regarded as a primary condition for optimal quality of care, suggesting that non-participation should be avoided. A common understanding of the concept of patient non-participation is needed. A discrepancy in definitions of patient non-participation has been found in health-care interactions, health-care classifications and health-care research, and little is known of what patient non-participation represents to patients.

    STUDY DESIGN: A survey consisting of closed-ended and open-ended questions was administered to persons that had recently been patients to gather respondents' descriptions of what they considered as patient non-participation. Qualitative content analysis was used to analyse free-text descriptions, and descriptive statistics were used for the close-ended alternatives.

    FINDINGS: Lacking information (e.g. not being provided with appropriate information) and lacking recognition (e.g. not being listened to and/or lacking recognition as an individual with individual needs and concerns) were significant aspects of patient non-participation. Furthermore, non-participation encompassed facing organization-centred, as opposed to patient-centred, health care as well as feeling insecure in health care interactions.

    CONCLUSION: The findings provide input for a better understanding of what patients experience as non-participation. Organising for the caregivers to be able to thoroughly listen to the patients' illness narratives would easily reduce the risk of patient's experiencing what is described as non-participation and would provide a sound base for patient learning needs.

  • 4.
    Eldh, Ann Catrine
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; School of Education, Health and Social Studies, Dalarna University, Falun, Sweden.
    Luhr, Kristina
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden; Family Medicine Research Centre, Örebro County Council, Örebro, Sweden.
    Ehnfors, Margareta
    School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
    The development and initial validation of a clinical tool for patients' preferences on patient participation--The 4Ps.2015Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, nr 6, s. 2522-35Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    AIMS: To report on the development and initial testing of a clinical tool, The Patient Preferences for Patient Participation tool (The 4Ps), which will allow patients to depict, prioritize, and evaluate their participation in health care.

    BACKGROUND: While patient participation is vital for high quality health care, a common definition incorporating all stakeholders' experience is pending. In order to support participation in health care, a tool for determining patients' preferences on participation is proposed, including opportunities to evaluate participation while considering patient preferences.

    METHODS: Exploratory mixed methods studies informed the development of the tool, and descriptive design guided its initial testing. The 4Ps tool was tested with 21 Swedish researcher experts (REs) and patient experts (PEs) with experience of patient participation. Individual Think Aloud interviews were employed to capture experiences of content, response process, and acceptability.

    RESULTS: 'The 4Ps' included three sections for the patient to depict, prioritize, and evaluate participation using 12 items corresponding to 'Having Dialogue', 'Sharing Knowledge', 'Planning', and 'Managing Self-care'. The REs and PEs considered 'The 4Ps' comprehensible, and that all items corresponded to the concept of patient participation. The tool was perceived to facilitate patient participation whilst requiring amendments to content and layout.

    CONCLUSIONS: A tool like The 4Ps provides opportunities for patients to depict participation, and thus supports communication and collaboration. Further patient evaluation is needed to understand the conditions for patient participation. While The 4Ps is promising, revision and testing in clinical practice is required.

  • 5.
    Mattisson, Marie
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Johnson, Christina
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Börjeson, Sussanne
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Centrum för kirurgi, ortopedi och cancervård, Onkologiska kliniken US.
    Arestedt, Kristofer
    Linnaeus Univ, Sweden; Kalmar Cty Council, Sweden.
    Lindberg, Malou
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för samhällsmedicin. Linköpings universitet, Medicinska fakulteten. Region Östergötland, Närsjukvården i västra Östergötland, Forsknings- och utvecklingsenheten för Närsjukvården i Östergötland.
    Development and content validation of the Telenursing Interaction and Satisfaction Questionnaire (TISQ)2019Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Caller satisfaction with telephone advice nursing (TAN) is generally high, and the interaction is essential. However, a valid questionnaire exploring caller satisfaction in TAN with focus on perceived interaction is lacking. Objective To develop and assess content validity and test-retest reliability of a theoretically anchored questionnaire, the Telenursing Interaction and Satisfaction Questionnaire (TISQ), that explores caller satisfaction in TAN by focusing on perceived interaction between the caller and the telenurse. Methods The study was performed in three stages. First, variables relevant for patient satisfaction in health care were identified through a literature search. Variables were then structured according to the Interaction Model of Client Health Behavior (IMCHB), which provided theoretical guidance. Items relevant for a TAN context were developed through consensus discussions. Then, evaluation and refinement were performed through cognitive interviews with callers and expert ratings of the Content Validity Index (CVI). Finally, test-retest reliability of items was evaluated in a sample of 109 individuals using intraclass correlation coefficients (ICC). Results The TISQ consists of 60 items. Twenty items cover perceived interaction in terms of health information, affective support, decisional control and professional/technical competence. Five items cover satisfaction with interaction and five items overall satisfaction. Remaining items reflect singularity of the caller and descriptive items of the call. The TISQ was found to exhibit good content validity, and test-retest reliability was moderate to good (ICC = 0.39-0.84). Conclusions The items in the TISQ form a comprehensive and theoretically anchored questionnaire with satisfactory content validity and test-retest reliability.

  • 6.
    Näsström, Lena
    et al.
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Hälsouniversitetet.
    Idvall, Ewa
    Department of Care Science, Malmö University, Sweden.
    Strömberg, Anna
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Hälsouniversitetet. Östergötlands Läns Landsting, Hjärt- och Medicincentrum, Kardiologiska kliniken US.
    Heart failure patients’ descriptions of participation in structured home care2015Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, nr 5, s. 1384-1396Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background

    To strengthen the patient's position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self-care is an important part of disease management and participation is crucial to succeed with this.

    Objective

    To examine how heart failure patients receiving structured home care described participation in the care.

    Design

    Qualitative study.

    Setting and participants

    Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis.

    Results

    Five categories with associated subcategories describing participation in care were identified: communication between patients and health-care professionals (HCPs) including time and space for dialogue and exchange of care-related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self-care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions.

    Conclusions

    Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient's own preferences to influence care and the health-care professional's actions and values and the organization of care. Barriers to participation could depend on the health-care organization, lack of continuity and confidence in HCPs.

  • 7.
    van de Bovenkamp, Hester
    et al.
    Erasmus University Rotterdam.
    Zuiderent-Jerak, Teun
    Erasmus University Rotterdam.
    An empirical study of patient participation in guideline development: exploring the potential for articulating patient knowledge in evidence-based epistemic settings2015Ingår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625, Vol. 18, nr 5, s. 942-955Artikel i tidskrift (Refereegranskat)
    Abstract [en]

    Background Patient participation on both the individual and the collective level attracts broad attention from policy makers and researchers. Participation is expected to make decision making more democratic and increase the quality of decisions, but empirical evidence for this remains wanting.

    Objective To study why problems arise in participation practice and to think critically about the consequence for future participation practices. We contribute to this discussion by looking at patient participation in guideline development.

    Methods Dutch guidelines (n = 62) were analysed extended version of the AGREE instrument. In addition, semi-structured interviews were conducted with actors involved in guideline development (n = 25).

    Results The guidelines analysed generally scored low on the item of patient participation. The interviews provided us with important information on why this is the case. Although some respondents point out the added value of participation, many report on difficulties in the participation practice. Patient experiences sit uncomfortably with the EBM structure of guideline development. Moreover, patients who develop epistemic credibility needed to participate in evidence-based guideline development lose credibility as representatives for ‘true’ patients.

    Discussion and conclusions We conclude that other options may increase the quality of care for patients by paying attention to their (individual) experiences. It will mean that patients are not present at every decision-making table in health care, which may produce a more elegant version of democratic patienthood; a version that neither produces tokenistic practices of direct participation nor that denies patients the chance to contribute to matters where this may be truly meaningful. 

  • 8. Årestedt, L.
    et al.
    Martinsson, Caroline
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Hjelm, Carina
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten.
    Uhlin, F.
    Eldh, Ann Catrine
    Linköpings universitet, Institutionen för medicin och hälsa, Avdelningen för omvårdnad. Linköpings universitet, Medicinska fakulteten. Linköpings universitet, Institutionen för samhälls- och välfärdsstudier, Avdelningen för omvårdnad.
    Patient participation in dialysis care: a qualitative study of patients’ and health professionals’ perspectivesIngår i: Health Expectations, ISSN 1369-6513, E-ISSN 1369-7625Artikel i tidskrift (Refereegranskat)
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