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1.  Person-centred web-based support - development through a Swedish multi-case study 
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 development of person-centred care. In summary, the main intention of the project outlined here is to contribute with both a synthesis of results on meta-level from four cases and a substantial contribution to the field person-centred care.
doi:10.1186/1472-6947-13-119
PMCID: PMC4015484  PMID: 24139057
Internet; Learning; Long-term illness; Person-centred care; Web-based support
2.  Breastfeeding and its impact on daily life in women with type 1 diabetes during the first six months after childbirth: a prospective cohort study 
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.
doi:10.1186/1746-4358-7-20
PMCID: PMC3547744  PMID: 23259843
3.  Web-based information for pregnant women and new mothers with type 1 diabetes- a description of the development process 
Background
This paper describes the process of developing specifically designed web-based maternity information for women with type 1 diabetes.
Methods
A participatory design was used and the information was evaluated in seven stages by researchers, professional experts and users. All steps of the development process were noted in an online logbook.
Results
The information developed gradually and its contents were reviewed by nurse-midwives, nurses and physicians specializing in different key areas including diabetes care, paediatrics, obstetrics and breastfeeding, a clinical dietician and mothers with type 1 diabetes. The draft was reviewed in regard to its cultural suitability and the information material was adjusted to meet quality criterions. Finally, the text was adapted for a lay audience.
Conclusions
Using participatory design required time and resources, however; it proved a functional way of producing appropriate information for the target group.
doi:10.1186/1472-6947-12-134
PMCID: PMC3519759  PMID: 23167552
Information; Pregnancy; Type 1 diabetes; Support; Website; Participatory design
4.  Father for the first time - development and validation of a questionnaire to assess fathers’ experiences of first childbirth (FTFQ) 
Background
A father’s experience of the birth of his first child is important not only for his birth-giving partner but also for the father himself, his relationship with the mother and the newborn. No validated questionnaire assessing first-time fathers' experiences during childbirth is currently available. Hence, the aim of this study was to develop and validate an instrument to assess first-time fathers’ experiences of childbirth.
Method
Domains and items were initially derived from interviews with first-time fathers, and supplemented by a literature search and a focus group interview with midwives. The comprehensibility, comprehension and relevance of the items were evaluated by four paternity research experts and a preliminary questionnaire was pilot tested in eight first-time fathers. A revised questionnaire was completed by 200 first-time fathers (response rate = 81%) Exploratory factor analysis using principal component analysis with varimax rotation was performed and multitrait scaling analysis was used to test scaling assumptions. External validity was assessed by means of known-groups analysis.
Results
Factor analysis yielded four factors comprising 22 items and accounting 48% of the variance. The domains found were Worry, Information, Emotional support and Acceptance. Multitrait analysis confirmed the convergent and discriminant validity of the domains; however, Cronbach’s alpha did not meet conventional reliability standards in two domains. The questionnaire was sensitive to differences between groups of fathers hypothesized to differ on important socio demographic or clinical variables.
Conclusions
The questionnaire adequately measures important dimensions of first-time fathers’ childbirth experience and may be used to assess aspects of fathers’ experiences during childbirth. To obtain the FTFQ and permission for its use, please contact the corresponding author.
doi:10.1186/1471-2393-12-35
PMCID: PMC3523014  PMID: 22594834
Fathers; Childbirth; Questionnaire; Validity; Reliability
5.  Breastfeeding in Women With Type 1 Diabetes 
Diabetes Care  2011;34(2):296-301.
OBJECTIVE
To identify predictive factors for initiation and maintenance of breastfeeding with a focus on mothers with type 1 diabetes.
RESEARCH DESIGN AND METHODS
This is a prospective observation survey, using a case-control design, comparing the outcomes of 108 mothers with type 1 diabetes with 104 mothers without diabetes that were matched for parity and gestational age. Mother and infant outcomes were collected from medical records and through telephone interviews 2 and 6 months after delivery. Predictive factors were calculated by logistic regression analyses.
RESULTS
Mothers with diabetes were less likely to partly or exclusively breastfeed their children at 2 months (OR 0.42 [95% CI 0.18–0.96], P = 0.041) and 6 months (0.50 [0.27–0.90], P = 0.022) than mothers without diabetes. On multivariable analysis, type 1 diabetes did not remain an independent predictive factor. Instead, higher education level and breastfeeding at discharge from hospital were predictive factors for breastfeeding at 2 months postpartum. These variables as well as delivery >37 weeks and early breastfeeding predicted breastfeeding 6 months postpartum.
CONCLUSIONS
Factors associated with maternal diabetes, such as problems with establishing breastfeeding in the early postpartum period, affects the likelihood of long-term breastfeeding.
doi:10.2337/dc10-1916
PMCID: PMC3024337  PMID: 21270187
6.  Internet use, needs and expectations of web-based information and communication in childbearing women with type 1 diabetes 
Background
In the childbearing period women use the internet both to seek information and as an important source of communication. For women with type 1 diabetes, pregnancy and early motherhood constitute a more complex situation than for women in general. This implies need for support from various professionals and a way of bridging any discontinuity in care would be to develop a website providing complementary social support and information. The objective of this study was to explore internet use, needs, and expectations regarding web-based information and communication in childbearing women with type 1 diabetes.
Methods
Data were collected via a web-based survey with an explorative and descriptive design, in which 105 of 139 eligible mothers with type 1 diabetes and recent childbearing experience participated. The data were analyzed with descriptive and analytical statistics, and open answers with a directed content analysis.
Results
Of the 105 women, 22% never used the internet to search for information concerning pregnancy, childbirth, and parenthood. 12% searched for information every day, 29% one or more times a week, and 38% one or more times a month. Of the women 44% declared themselves to be passive participants on social websites, and 45% to be active participants. 45% had specific expectations of web-based support directed towards childbearing, especially those with higher educational level (P = .01). Expectations of instrumental and informational support included an expert-controlled website with reliable, updated, and information focused on childbearing and diabetes, improved access to diabetes care professionals and alternative ways to communicate and to receive childbearing-related support. The women also asked for online technical devices to manage the frequent monitoring of blood glucose during pregnancy. Informal, emotional, and appraisal support from women in similar situations was suggested as a way to provide an arena for belonging instead of creating feelings of alienation.
Conclusions
Our results add important knowledge about the web-based needs of women with type 1 diabetes in relation to childbearing. This user directed study indicates specific areas of development for the provision of effective web-based support that includes facilities for reliable information, interactive support and social networking in this population.
doi:10.1186/1472-6947-11-49
PMCID: PMC3141376  PMID: 21736713
7.  Extraordinary exposed in early motherhood - a qualitative study exploring experiences of mothers with type 1 diabetes 
BMC Women's Health  2011;11:10.
Background
Women with type 1 diabetes face several challenges during pregnancy, childbirth and in relation to breastfeeding. It is therefore of utmost importance to consider their need for specific support, early postpartum as well as in daily life after discharge from maternity care. Few studies have investigated these aspects of healthcare. The aim of this study was to explore experiences after childbirth regarding breastfeeding, glycemic control, support and well-being in women with type 1 diabetes.
Methods
A hermeneutic reflective life world research approach was used in this qualitative study. Data was gathered through audio-recorded focus group discussions and individual interviews with 23 women with type 1 diabetes, 6-24 months after childbirth. After verbatim transcription, the text was analyzed in order to identify themes of meaning and a conclusive interpretation of the explored phenomenon.
Results
Experiences of extraordinary exposure challenged the women with type 1 diabetes in their transition to early motherhood. The exposure included a struggle with breastfeeding, although with a driving force to succeed. Everyday life was filled with uncertainty and unpredictability related to one's own unstable glycemic control and the women down-prioritized their own needs in favor of the child. A feeling of being disconnected from professional care further contributed to the experiences of extraordinary exposure.
Conclusion
In early motherhood women with type 1 diabetes have a great need for support in managing daily life postpartum, which requires contemporary approaches to overlap insufficient linkage between health care professionals in maternity and child health care, and diabetes care.
doi:10.1186/1472-6874-11-10
PMCID: PMC3079679  PMID: 21473755
8.  Severe male infertility after failed ICSI treatment-a phenomenological study of men's experiences 
Background
Male-factor infertility underlies approximately 30% of infertility in couples seeking treatment; of which 10% is due to azoospermia. The development of assisted reproductive technology (ART), enabling the use of epididymal or testicular sperm for fertilization of the partner's oocytes, has made biological fatherhood possible for men with obstructive azoospermia. There is limited knowledge of men's experience of their own infertility. The aim of this study was to describe men's experiences of obstructive azoospermia infertility.
Methods
Eight men with obstructive azoospermia, who had terminated Swedish public health system ART treatment two years previously without subsequent childbirth, were interviewed using a descriptive phenomenological method.
Results
The essence of the phenomenon is expressed with a metaphor: climbing a mountain step by step with the aim of reaching the top, i.e. having a child and thus a family with a child. Four constituents are included (1) inadequacy followed by a feeling of redress (2) marginalisation, (3) chivalry (4) extension of life and starting a family as driving forces.
Conclusions
Knowledge of men's experiences of their own infertility is important as a supporting measure to increase the quality of care of infertile couples. By adopting this facet of gender perspective in fertility treatment guidelines, care can hopefully be optimized.
doi:10.1186/1742-4755-8-4
PMCID: PMC3039538  PMID: 21294868
9.  Childbirth experience questionnaire (CEQ): development and evaluation of a multidimensional instrument 
Background
Negative experiences of first childbirth increase risks for maternal postpartum depression and may negatively affect mothers' attitudes toward future pregnancies and choice of delivery method. Postpartum questionnaires assessing mothers' childbirth experiences are needed to aid in identifying mothers in need of support and counselling and in isolating areas of labour and birth management and care potentially in need of improvement. The aim of this study was to develop and evaluate a questionnaire for assessing different aspects of first-time mothers' childbirth experiences.
Methods
Childbirth domains were derived from literature searches, discussions with experienced midwives and interviews with first-time mothers. A draft version of the Childbirth Experience Questionnaire (CEQ) was pilot tested for face validity among 25 primiparous women. The revised questionnaire was mailed one month postpartum to 1177 primiparous women with a normal pregnancy and spontaneous onset of active labor and 920 returned evaluable questionnaires. Exploratory factor analysis using principal components analysis and promax rotation was performed to identify dimensions of the childbirth experience. Multitrait scaling analysis was performed to test scaling assumptions and reliability of scales. Discriminant validity was assessed by comparing scores from subgroups known to differ in childbirth experiences.
Results
Factor analysis of the 22 item questionnaire yielded four factors accounting for 54% of the variance. The dimensions were labelled Own capacity, Professional support, Perceived safety, and Participation. Multitrait scaling analysis confirmed the fit of the four-dimensional model and scaling success was achieved in all four sub-scales. The questionnaire showed good sensitivity with dimensions discriminating well between groups hypothesized to differ in experience of childbirth.
Conclusion
The CEQ measures important dimensions of the first childbirth experience and may be used to measure different aspects of maternal satisfaction with labour and birth.
doi:10.1186/1471-2393-10-81
PMCID: PMC3008689  PMID: 21143961
10.  Experiences of professional support during pregnancy and childbirth – a qualitative study of women with type 1 diabetes 
Background
Women with type 1 diabetes are at high risk of complications during both pregnancy and childbirth. Stringent monitoring of blood sugar is required in order to improve the chance of giving birth to a healthy child; however, this increases the incidence of severe hypoglycaemia. The aim of this study was to explore the need for and experience of professional support during pregnancy and childbirth among women with type 1 diabetes.
Methods
The study has a lifeworld research approach. Six focus groups and four individual interviews were conducted with 23 women, 6–24 months after delivery. The participants were encouraged to narrate their experiences of pregnancy and childbirth in relation to glycaemic control, well-being and provided care. Data analysis was directed towards discovering qualitative meanings by identifying and clustering meaning units in the text. Further analysis identified eight themes of meaning, classified under pregnancy or childbirth, forming a basis for a final whole interpretation of the explored phenomenon.
Results
The women felt worry about jeopardizing the baby's health and this was sometimes made worse by care providers' manner and lack of competence and support. The increased attention from care providers during pregnancy was experienced as related to the health of the unborn child; not the mothers. Women who during pregnancy received care in a disconnected diabetes organisation were forced to act as messengers between different care providers.
Conclusion
Clarity in terms of defining responsibilities is necessary during pregnancy and childbirth, both among care providers and between the woman and the care provider. Furthermore, a decision must be made concerning how to delegate, transfer or share diabetes responsibility during labour between the care providers and the parents-to-be.
doi:10.1186/1471-2393-9-27
PMCID: PMC2725032  PMID: 19575789
11.  Postpartum consultation: Occurrence, requirements and expectations 
Background
As a matter of routine, midwives in Sweden have spoken with women about their experiences of labour in a so-called 'postpartum consultation'. However, the possibility of offering women this kind of consultation today is reduced due to shortage of both time and resources. The aim of this study was to explore the occurrence, women's requirements of, and experiences of a postpartum consultation, and to identify expectations from women who wanted but did not have a consultation with the midwife assisting during labour.
Methods
All Swedish speaking women who gave birth to a live born child at a University Hospital in western Sweden were consecutively included for a phone interview over a three-week period. An additional phone interview was conducted with the women who did not have a postpartum consultation, but who wanted to talk with the midwife assisting during labour. Data from the interviews were analysed using qualitative content analysis.
Results
Of the 150 interviewed women, 56% (n = 84) had a postpartum consultation of which 61.9% (n = 52) had this with the midwife assisting during labour. Twenty of the 28 women who did not have a consultation with anyone still desired to talk with the midwife assisting during labour. Of these, 19 were interviewed. The content the women wanted to talk about was summarized in four categories: to understand the course of events during labour; to put into words, feelings about undignified management; to describe own behaviour and feelings, and to describe own fear.
Conclusion
The survey shows that the frequency of postpartum consultation is decreasing, that the majority of women who give birth today still require it, but only about half of them receive it. It is crucial to develop a plan for these consultations that meets both the women's needs and the organization within current maternity care.
doi:10.1186/1471-2393-8-29
PMCID: PMC2496898  PMID: 18651967
12.  Conditions for parents' participation in the care of their child in neonatal intensive care – a field study 
BMC Pediatrics  2008;8:3.
Background
To promote participation by parents in the care of their child in neonatal intensive care units (NICU), health professionals need better understanding of what facilitates and what obstructs participation. The aim was to elucidate conditions for parents' participation in the care of their child in NICUs.
Methods
A field study with a hermeneutic lifeworld approach was used and data were collected at two NICUs through participative observations and interviews with representatives of management, staff and parents.
Results
The results point to a number of contradictions in the way parents were offered the opportunity to participate in neonatal intensive care. Management and staff both had good ambitions to develop ideal care that promoted parent participation. However, the care including the conditions for parental participation was driven by the terms of the staff, routines focusing on the medical-technical care and environment, and budgetary constraints.
Conclusion
The result shows that tangible strategies need to be developed in NICUs aimed at optimising conditions for parents to be present and involved in the care of their child.
doi:10.1186/1471-2431-8-3
PMCID: PMC2259343  PMID: 18215259

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