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Background: Midwives have the responsibility to strengthen normal birth and promote breastfeeding; this challenge also includes women with chronic illness, such as diabetes type 1. Due to a constant struggle to achieve normoglycemia normal pregnancy related processes may be neglected in pregnant women with type 1 diabetes. The medical risks during pregnancy and labor might increase stress, anxiety and feelings of hopelessness. Aim: To describe the design of a woman-centered web-support for pregnant women and new mothers with type 1 diabetes in order to strengthen wellbeing. Method: A web-support has been developed using participatory design. A research project management group had the responsibility of steering the project forward. Different stakeholders including, midwifery, medical, nursing and target group expertise participated in the development. The web-support is implemented through a randomized controlled trial. Result: The developed web-support consists of three parts: 1) Specific information about pregnancy, childbirth, and early motherhood in relation to type 1 diabetes, where the challenge is to balance the core values of normal childbearing with diabetes related issues. 2) A self-care diary, including a device for documenting and evaluating blood glucose levels, insulin doses, food intake and physical activities. This enables the woman to keep in control of her own health. 3) A forum for peer support through communication between women and mothers in pregnancy and early motherhood. This enables sharing of similar experiences and of strategies to handle daily life. Clinical relevance By addressing diabetes related health risks and problems in a manner that still emphasizes the normality of being pregnant, giving birth and breastfeeding, a balance between focusing on potential risks and the joy of childbearing, birth and motherhood could be achieved., Modiab-Web

Background: Women with type 1 diabetes face particular demands in their lives in relation to childbearing. During pregnancy, in order to optimize the probability of giving birth to a healthy child, their blood glucose levels need to be as normal as possible. After childbirth, they experience a 'double stress': in addition to the ordinary challenges they face as new mothers, they also need to focus on getting their blood glucose levels normal. To improve self-management of diabetes and overall well-being in women with type 1 diabetes, a person-centered web-based support was designed to be tested in a randomized controlled trial (RCT) to be used during pregnancy and early motherhood. This protocol outlines the design of this RCT, which will evaluate the effectiveness of the specially designed web-based support for mothers with type 1 diabetes in Sweden. Methods: The study is designed as an RCT. The web support consists of three parts: 1) evidence-based information, 2) a self-care diary, and 3) communication with peers. The primary outcome is general well-being evaluated with the Well-Being Questionnaire short version (W-BQ12) and diabetes management evaluated with the Diabetes Empowerment Scale, short version (SWE-DES). Women attending six hospital-based antenatal care centers in Sweden are invited to participate. The inclusion period is November 2011 to late 2014. The allocation of participants to web support (intervention group) and to usual care (control group) is equal (1:1). In total, 68 participants in each group will be needed to reach a statistical power of 80% with significance level 0.05. Discussion: The web support is expected to strengthen the women's personal capacity and autonomy during pregnancy, breastfeeding, and early motherhood, leading to optimal well-being and diabetes management., Funding Agencies:Center for Person-Centered Care at the University of Gothenburg (GPCC), SwedenSwedish Diabetes AssociationHealth & Medical Care Committee of the Regional Executive Board, Region Västra GötalandInstitute of Health and Care SciencesSahlgrenska Academy at the University of Gothenburg, Sweden, MODIAB-Web

Gothenburg Center for Person-Centred Care

Objective. The aim of this study was to provide a critical understanding of the role of theories and their compatibility with a person-centered approach in the design and evaluation of web-based support for the management of chronic illness. Methods. Exploration of web-based support research projects focusing on four cases: (1) preschool children aged 4–6 with bladder dysfunction and urogenital malformation; (2) young adults aged 16–25 living with mental illness; (3) women with type 1 diabetes who are pregnant or in early motherhood; and (4) women who have undergone surgery for breast cancer. Data comprised interviews with research leaders and documented plans. Analysis was performed by means of a cross-case methodology. Results. The used theories concerned design, learning, health and well-being, or transition. All web support products had been developed using a participatory design (PD). Fundamental to the technology design and evaluation of outcomes were theories focusing on learning and on health and well-being. All theories were compatible with a person-centered approach. However, a notable exception was the relatively collective character of PD and Communities of Practice. Conclusion. Our results illustrate multifaceted ways for theories to be used in the design and evaluation of web-based support., Göteborg Center för person-Centrerad Vård

Background Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare this project captures persons’ needs and expectations in order to develop highly usable web recourses. The purpose of this paper is to outline a multi-case research project focused on the development and evaluation of person-centred web-based support for people with long-term illness. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care. The project aims to contribute to the ongoing development of web-based supports in health care and to the emerging field of person-centred care. Methods/Design The research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and urogenital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementation, and analysis. This, we argue, will lead to a synthesis of results on a meta-level not yet described. Discussion To allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people’s experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Person-centred web-based support is a new area and few studies focus on how web-based interventions can contribute to the develo

Objective to examine midwives' responses to a changed approach in the initial encounters with women and their partners in the labour ward. Design as part of a local project to improve hospital based childbirth care, Action Research (AR) was undertaken with midwives. To establish their beliefs, practices, and responses to change during the first cycle, 37 out of 57 midwives were interviewed. Data analysis was guided by interpretative description. Setting a labour ward in western Sweden. Findings two themes emerged: ‘Glancing beyond routines’ describes how the changed care approach enabled ‘valuing the idea’ and ‘acquiring extended space to create a lingering presence’. The theme ‘being confined to inherent routines’ expresses ‘resistance to the need for change’ and a ‘feeling of pressure to change’. Key conclusions the AR study design enabled the midwives to reflect on their routines and to transform tacit use-in-action to reflection-in-action. Midwives who persisted in being confined to inherent routines felt pressured by the change process. Others felt that the AR process granted them official licence to create chronological and emotional space in which they could ‘be’ and not just ‘do’. Implications for practice to a greater or lesser extent, midwives in this setting had integrated relatively impersonal system-wide technocratic norms of childbirth into their belief systems and behaviours. The data suggest that a whole-system shift is necessary to enable caring, behaviours based on the formation of positive relationships to become the key driver of the first encounter on the labour ward.

Background: Pregnancy and early motherhood are extraordinarily demanding periods for women with type 1 diabetes, who therefore need optimal support. This article describes the process of developing person-centered Web-based support for women with type 1 diabetes during the period of pregnancy through early motherhood. Important aspects of perrsoncenteredness are a broader scope of medicine, viewing the patient as a person, shared decision-making to accomplish a therapeutic alliance, and the role of documentation. Materials and Methods: A participatory design was used in the development process to capture the target group’s knowledge, experiences, and needs, and a systematic process map for Web-based support was used to describe the process. Results: Content and layout in the Web support were developed collaboratively by project managers, advisory and scientific reference groups, technical producers, and representatives for the target group. Based on needs assessment and evidence synthesis, three main components of complementary Web-based support were identified: (1) specific information about pregnancy, childbirth, and early motherhood in relation to type 1 diabetes; (2) a self-care diary, including a device for documenting and evaluating blood glucose levels, insulin doses, food intake, physical activities, and overall well-being; and (3) a forum for communication between women with type 1 diabetes in the childbearing period. Conclusions: Using a perspective of person-centered care, a participatory design and the process map were fruitful for developing person-centered Web support for self-care and self-learning. The developed Web support product will be evaluated in a randomized controlled trial and further developed based on this result., Funding Agency:University of Gothenburg Centre for Person-Centred Care Inger Hultman Foundation The Region Västra Götaland, Modiab-Web

MODIAB-WEB

MODIAB-WEB

Background: Women with type 1 diabetes have a demanding life situation during the period of pregnancy and early motherhood. There is a need to develop person-centered models of care for women with type 1 diabetes in relation to pregnancy and early motherhood. People, who share a concern for something, learn together as they regularly interact. For example, people learn from each other as they discuss experiences, treatment and self-management issues in daily life. To empower women during with type 1 diabetes during pregnancy and in early motherhood, a website promoting self-management through a social and learning community has been developed. Objectives: To describe the design and content of a specially designed person-centered web support for women with type 1 diabetes during the period of pregnancy through early motherhood. This web-based support aims at improving the women’s self-management of diabetes and overall well-being. Methods: The web-based support has been developed through a participatory design involving different stakeholders such as health care professionals, mothers with type 1 diabetes, web designers and researchers. The project is under evaluation in a randomized controlled trial. Women with type 1 diabetes are randomized in early pregnancy to either usual care or web-based support in addition to usual care. All study participants are followed from baseline in early pregnancy to six months after childbirth. Results: The developed person-centered web-basedsupport consists of three complementary parts: 1) specific information about pregnancy, childbirth and early motherhood in relation to type 1 diabetes; 2) a self-care diary including a device for documenting and evaluating blood glucose levels, insulin doses, food intake, physical activities and overall well-being; and 3) a forum for communication between women with type 1 diabetes in the childbearing period. The support is developed for computer and mobile use. Conclusions: This website for self, Modiab-Web

Background: E-health solutions are increasingly being developed to meet patients’ preferences and promote their participation in healthcare. Few studies have explored the participatory design process from the perspective of person-centeredness, including how it becomes materialized in technology. This paper explores how applied participatory approaches and the design of 4 web-based interventions directed towards long-term illness correspond to key areas of person-centeredness. Methods: Data were collected during 2009 to 2012, from 4 Swedish research projects. The analysis followed an inductive approach involving a step-wise cross-case analysis. The purpose was to create shared knowledge and understanding of each separate case and to generate relevant categories. Results: A number of question areas describe the dialogue with the case participants. Results of the dialogue are categorized into 4 support areas: psychological/emotional, personal, information and technical. Person-centeredness becomes visible in the participatory design process as the approach promotes the development of a holistic view of the person and the illness and a partnership between patients and carers. The use of communication technology exemplifies concrete materialization of person-centeredness in the design of the web-based supports. The purpose of the web supports and the shaping of the actual use of the functionalities are more abstract forms of materialization. Conclusions: Our results contribute to a central development area within eHealth involving increased opportunities for patients to contribute actively in real time, obtaining access to information and sometimes interacting with carers. However, neither participatory approaches nor technology for online information and communication, can guarantee person-centeredness in isolation.

Introduction: The abstract outlines a research project that aims to develop and evaluate a person-centred model of web-based learning and support for people with long-term illness. Departing from the widespread use of the internet in modern society and the emerging use of web applications in healthcare the multi-case project captures persons’ needs and expectations in order to develop highly usable web recourses. To support the underlying idea to move beyond the illness, we approach the development of web support from the perspective of the emergent area of person-centred care (PCC). Methods: The research design uses a meta-analytical approach through its focus on synthesizing experiences from four Swedish regional and national cases of design and use of web-based support in long-term illness. The cases include children (bladder dysfunction and uro-genital malformation), young adults (living close to persons with mental illness), and two different cases of adults (women with breast cancer and childbearing women with type 1 diabetes). All of the cases are ongoing, though in different stages of design, implementa-tion, and analysis. An inductive approach characterizes the analysis of the results of the cases. By means of a step-wise analysis a shared knowledge and understanding of each separate case is created followed by the development of central categories (such as types of needs and expectations, types of theories, conceptual framework, etc). Results: To allow valid comparisons between the four cases we explore and problematize them in relation to four main aspects: 1) The use of people’s experiences and needs; 2) The role of use of theories in the design of person-centred web-based supports; 3) The evaluation of the effects of health outcomes for the informants involved and 4) The development of a generic person-centred model for learning and social support for people with long-term illness and their significant others. Discussion and Conclusion: Person-centred w

Background: For mothers with diabetes, breastfeeding is a great challenge due to their struggle with potentially unstable blood glucose levels. This paper explores breastfeeding attitudes and impact of breastfeeding on the daily life of mothers with type 1 diabetes compared with non-diabetic mothers.Methods: We performed a prospective cohort study of 108 mothers with type 1 diabetes and a reference group of 104 mothers in the west of Sweden. Data were collected through medical records and structured telephone interviews at 2 and 6 months after childbirth.Results: Women in both the diabetes group and the reference group had high levels of confidence (84% and 93% respectively) in their breastfeeding capacity before childbirth, and 90% assessed breastfeeding as a positive and an important experience during the six months of follow-up. About 80% assessed breastfeeding as influencing daily life 'very much' or 'quite a lot' at 2 months as did 60% at 6 months, with no difference between the groups. In mothers with diabetes, the impact of breastfeeding on the priority of other duties decreased over time, as did feelings of time pressure and negative effects on patterns of sleep. Compared to the reference group, mothers with diabetes at 6 months remained more affected by disruptions in daily life and they felt more worried about their health both at 2 and 6 months after childbirth. For the reference group mothers' sensitivity to unexpected disruptions in daily routines decreased between 2 and 6 months after childbirth, and they expressed a greater need to organize their time than mothers with diabetes.Conclusion: Mothers with diabetes type 1 express more worry for own health and are more sensitive to distruptions. To balance their everyday life and to reduce the risk of stress and illhealth they are therefor, compared to other mothers, likely to need additional professional and peer support. © 2012 Berg et al.; licensee BioMed Central Ltd.

This work was supported by the University of Gothenburg Centre for Person-Centred Care (GPCC).

BACKGROUND: For women and their partners, the first meeting with professional staff on the labour ward is important. This initial encounter is a short but sensitive meeting. It may be particularly crucial for first time parents, most of whom have no prior experience of the birth environment. The objective of this study was to explore the meaning of first time mothers' and their partners' first encounter with midwives and other maternity care staff when they arrive on a hospital labour ward. METHOD: A hermeneutic, reflective lifeworld research approach was chosen to identify patterns of meanings, comprehension and explanations. Participants from Western Sweden were interviewed in the postnatal period; 37 individually, and 28 in focus groups. RESULTS: Four themes were identified: 'timing it right ', 'waiting to be informed', 'being in an inferior position', and 'facing reality with a mosaic of emotions'. The final interpretation of the phenomenon is captured as 'waiting for permission to enter the labour ward world'. CONCLUSION: The findings demonstrate the parents' efforts trying to determine the appropriateness of arrival to the labour ward. An asymmetric power relationship was expressed in the obedient acceptance of the waiting for attention in an unfamiliar situation. These findings suggest that the labour ward entry process is not parent centred. As entry to the labour ward sets the tone for the rest of the birth, this period in the labour process needs more attention in future research and practice from the maternity care professionals perspective.

Livskvalite fem år efter adoption, lyckad eller misslyckad IVF behandling, Komplikationerunder de reproductiva åren

Objective. To describe quality of life in men and women who had terminated in vitro fertilization (IVF) within the public health system 4-5.5 years previously, and for whom treatment did not result in childbirth. Design. Cross-sectional study. Setting. Reproductive Unit, Sahlgrenska University Hospital, Gothenburg, Sweden. Sample. Four hundred pairs were invited to participate, 71% accepted and 68% completed questionnaires. Methods. Questionnaire study. Study subgroups were compared with a control group with children and with each other. Main outcome measure. Psychological General Well-Being (PGWB), Sense of Coherence (SOC), experience of infertility, demographic-socio-economic and health characteristics were measured. Results. Surprisingly, 76.7% had or lived together with children; 39.6% had biological children, 34.8% had adopted and 3.7% were parents to both biological and adopted children. No differences were found between the study and the control groups, except in SOC which scored lower in the study group. The study group with children had a higher PGWB index than the 23.3% without children and the controls. SOC scored higher in the subgroup with than those without children. Infertility was still a central issue in the subgroup without children. Conclusion. Despite having undergone unsuccessful IVF within the public health system, more than 75% lived with children 4-5.5 years later. This subgroup had a better quality of life, compared to those without children. Additional IVF treatment may result in increased quality of life.