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Carina Berterö

Linkoping University, Department of Health, Medicine and Caring Sciences, Faculty Member

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The overall objective of my studies is to develop nursing science. There are different ways to accomplish this, for instance through identifying and clarifying the theory and empirics of nursing science
Supervisors: I am and have been a supervisor for 12 PhD students (dissertation) and about 45 master students and about 40 bachelour students

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University of Salerno

University of Hamburg

Université libre de Bruxelles

Isabelle Brault

Université de Montréal

Dag I K Sjoberg

University of Oslo

University of Toronto

Università degli Studi di Cagliari

David J . Malan

Harvard University

Dragos Simandan

Brock University

Virginia Schmied

Western Sydney University

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Papers by Carina Berterö

Guidelines for writing a commentary

International Journal of Qualitative Studies on Health and Well-being, 2016

Does Advoy.com™ help patients with primary immunodeficiency diseases experience that their life situation has improved?

Reciis, Jun 30, 2010

Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more ofte... more Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more often provided at home. We explored the impact of living with a chronic disease, the life situation as well as using Advoy, a new web-based patient diary with messaging function. Twelve adults from Sweden wrote an essay each about their disease and how it is to be an Advoy user. The text was analyzed with directed qualitative content analysis. The respondents stated that they were living on a border; hence their lives were much better after starting their home therapy. Using Advoy made them feel more confident, since the overview and history of their treatment gave them information and understanding about their problems. It was hard to navigate on the Advoy site, and this made some of the respondents frustrated, so they used it only for plain treatment documentation. Improvements are needed in Advoy, in order to enhance self care activities.

Exploring family functioning and ‐ hardiness in families’ experiencing adult intensive care – A cross-sectional study

PLOS ONE, Jul 6, 2023

Being cared for in an intensive care unit affects both the patient being cared for and the family... more Being cared for in an intensive care unit affects both the patient being cared for and the family in various ways. The family is of great importance for the recovery of the former intensivecare patient. The aim is to explore family functioning and family hardiness in families of former intensive care patients. A cross-sectional study using two self-reported questionnaires. Former adult intensive care patients and their family were recruited to participate between December 2017 and June 2019. The data were coded and entered the Statistical Package for the Social Sciences version 25, for analysis. To explore questionnaire data, descriptive and inferential statistical analyses were performed. Scale values were calculated on, both family wise and between the patients and the family members. STROBE checklist was used. Data was collected from 60 families (60 former intensive cared patients and 85 family members) and showed that 50 families scored healthy family functioning and 52 high strengths in hardiness. The data showed small variations between and within families for family functioning and family hardiness, there were only two families scoring low for both family functioning and hardiness. The variation was higher within the families, but there was no significance level.The conclusions were that family functioning and hardiness was, to a large extent, assessed as good by the families. Nevertheless, it is important to help the family obtain information and support. So, the family need to continue to communicate, finding coping abilities and strengths in adopting new strategies to protect the family unit. The family are very important for members' mental and physical recovery as the health of one family member affects the family as a unit.

The lived experience among Somali women of giving birth in Sweden: an interpretive phenomenological study

BMC Pregnancy and Childbirth, May 1, 2020

Background: The health care-seeking behaviour among Somali women is different from Swedish women'... more Background: The health care-seeking behaviour among Somali women is different from Swedish women's behaviour, and this may have consequences for birth giving. The aim of the study was to identify and describe Somali women's lived experience of birth giving in Sweden. Methods: Qualitative individual interviews were conducted in Swedish with seven Somali women. The sample was purposeful, and the snowball sampling method was used. The interviews were digitally recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis. Results: Four themes emerged during the analysis which revealed the Somali women's lived experiences of giving birth in Sweden. a) Being recognised and confirmed as a woman. Somali women consider it important to be confirmed as a woman by the surrounding and professionals during pregnancy and birth giving. b) Communication is important for the women's independence. There is a need to provide a structure for how this information is given and adaptation regarding content and format .c) Something naturally becomes unknown and complicated. Somali women come from a different culture, which affects their lived experiences of pregnancy and birth giving. There is a need for improved and clearer information for these Somali women regarding pregnancy and birth giving in another culture-the Swedish context d) Professional and competent taking care of. The women appreciate if they are treated with competency and professionalism; they do not want to be discriminated. The women feel confidence in health care when they meet competent and professional health care professionals. Conclusions: The findings in the study indicate that reproductive health care for Somali women should be improved with regard to cultural differences and lived experiences, as this affects their experience of pregnancy and childbirth in Sweden. There is a need for both knowledge and understanding in order to provide good quality care for these Somali women, especially those who have been genitally mutilated.

Parental Opinions of Their Child’s Experience in the Legal Process: An Interpretative Analysis

Journal of Child Sexual Abuse, Apr 3, 2014

The aim of this study was to demonstrate how parents of children, who are victims of sexual assau... more The aim of this study was to demonstrate how parents of children, who are victims of sexual assault, experience the legal process, seen from the child's, as well as the parents' perspective. Nine parents, identified in the records of three public prosecution offices in three cities in Sweden, were interviewed. The parents described feelings of shame and guilt over what their children had experienced. They felt stigmatized and had difficulty fulfilling their parental role; perceived a lack of information and support from the professionals involved; experienced a sense of withdrawal from their role as parents, though they felt the professionals who worked with their children were helpful and influential.

To Use or Not to Use – Practitioners’ Perceptions of an Open Web Portal for Young Patients With Diabetes

Journal of Medical Internet Research, Nov 9, 2012

Background: Health care professionals' attitudes can be a significant factor in their acceptance ... more Background: Health care professionals' attitudes can be a significant factor in their acceptance and efficient use of information technology, so they need to have more knowledge about this resource to enhance their participation. Objective: We explored practitioners' perceptions of using an open-access interactive Web portal tailored to young diabetes type 1 patients and their guardians or significant others. The portal offered discussion forums, blog tools, self-care and treatment information, research updates, and news from local practitioners. Methods: Eighteen professionals who were on pediatric diabetes care teams each wrote an essay on their experience using the portal. For their essays, they were asked to describe two situations, focusing on positive and negative user experiences. The essays were analyzed using qualitative content analysis. Results: Based on our analysis of the respondents essays, we identified three categories that describe perceptions of the Web portal. The first category-to use or not to use-included the different perspectives of the practioners; those who questioned the benefits of using the Web portal or showed some resistance to using it. The frequency of use among the practitioners varied greatly. Some practitioners never used it, while others used it on a daily basis and regularly promoted it to their patients. Some respondents in this category reflected on the benefits of contributing actively to online dialogues. In the second categoryinformation center for everyone-practitioners embraced the site as a resource for scientifically sound information and advice. As part of their practice, and as a complement to traditional care, practitioners in this category described sending information through the portal to patients and their significant others. Practitioners felt safe recommending the site because they knew that the information provided was generated by other practitioners. They also assumed that their patients benefited from actively using the Web portal at home: peers brought the site to life by exchanging experiences through the discussion forums. In the third category-developing our practice-practitioners reflected upon the types of information that should be given to patients and how to give it (ie, during in-person appointments or through the Web portal). They perceived meeting with various professionals at other hospitals to update information on the portal and develop content policies as constructive teamwork. Practitioners expressed interest in reading patients' dialogues online to learn more about their views. They also thought about how they could use the portal to adapt more to patients' needs (eg, creating functions so patients could chat with the diabetes nurses and doctors). Conclusions: Practitioners expressed positive perceptions toward a tailored open Web portal. They suggested that future benefits could be derived from systems that integrate factual information and online dialogues between practitioners and patients (ie, exchanging information for everyone's benefit).

Men's experience of their life situation when diagnosed with advanced prostate cancer

European Journal of Oncology Nursing, Sep 1, 2009

Prostate cancer has been a disease of older men but age at diagnosis is falling in Sweden. Fatigu... more Prostate cancer has been a disease of older men but age at diagnosis is falling in Sweden. Fatigue has been regarded as a common symptom of cancer and may compromise quality of life in prostate cancer patients. The overall purpose of this thesis was to identify and describe fatigue and its influence on men's lives when undergoing examinations for suspected prostate cancer and diagnosed with prostate cancer. Further, the purpose was to understand if prostate cancer affects the men's daily lives. The data were collected consecutively at the outpatient clinics of two different hospitals in Sweden. Data from qualitative interviews using the same topics, with modification in paper IV, were analysed by Gadamer´s hermeneutics. Paper I: Eleven men undergoing routine examination for prostate cancer (transrectal ultrasound and biopsy), but diagnosed as having benign disease were interviewed during the spring of 2002. At the time of the prostate cancer examination, the men did not feel fatigue, i.e. not because of the examination; they felt healthy. Paper II: Sixteen men newly (within 2-4 weeks) diagnosed as having localized prostate cancer and with a prostate-specific antigen level of <10 ng/ml and untreated at the time of the interview participated between spring and autumn 2003. Most of the men did not experience fatigue due to the diagnosis but experienced every day fatigue and cancer influenced the men´s daily lives. The men felt healthy. Paper III: Ten men newly (within 2-4 weeks) diagnosed as having advanced prostate cancer PSA of > 100 ng/ml and treated for no more than 2 weeks at the time of the interview participated between autumn 2003 and December 2005. The men did not experience fatigue due to advanced prostate cancer but they experienced normal every day fatigue. The men felt healthy with some dysfunction influencing their daily lives. Paper IV: All 22 men who were still alive since the first interview (in studies II and III) were followed up between May 2005 and November 2007. The men were living with a sense of feeling healthy, even when having lived with prostate cancer for approximately two years; both cancer stage and age had an influence on them. All the men experienced Every Day Fatigue. Conclusions: Personality and anxiety contributed to fatigue when undergoing examination for suspected prostate cancer. Localized prostate cancer affected the men´s emotions and contacts giving them a new perspective on life. Advanced prostate cancer affects men´s lives: they are placed in a new life situation, against their will, and in this new situation, they form a new life perspective. The follow-up study confirmed the men´s view that age influences them, they live with uncertainty but with strengthened self-esteem, finding a balance in a changed life situation. According to the present studies the men felt healthy in spite of prostate cancer. Complementary findings were found about existential thoughts. Health professionals have a unique position to identify the different stages of the men´s adaptation to prostate cancer to guide them towards their individual needs at each stage of their adjustment.

Primary Healthcare Professionals’ Experiences of the Sick Leave Process: A Focus Group Study in Sweden

Journal of Occupational Rehabilitation, Jan 24, 2013

The aim of this study was to explore primary healthcare (PHC) professionals' experiences of the s... more The aim of this study was to explore primary healthcare (PHC) professionals' experiences of the sick leave process. Methods: This is an explorative study using data from four semi-structured focus group discussions with a purposeful sample of PHC professionals in Östergötland County, Sweden. Content analysis with an inductive approach was used in the analysis. Results: Four key themes emerged from the analysis; priority to the sick leave process, handling sickness certifications, collaboration within PHC and with other stakeholders, and work ability assessments. Patients' need for sick leave was handled from each professional group's perspective. Collaboration was considered important, but difficult to achieve and all the competencies available at the PHC centre were not used for work ability assessments. There was insufficient knowledge of patients' work demands and contact with an employer was rare, and the strained relationship with the social insurance officers affected the collaboration. Conclusions: This study highlights the challenges physicians and other PHC professionals face when handling the need for sick leave, especially when encountering patients with symptombased diagnoses, and the influence of non-medical factors. Hindrances to good practice were increased demands, collaboration, and role responsibility. The challenges in the sick leave process concerned both content and consequences related to poor collaboration within PHC and with representatives from various organizations, primarily employers and social insurance officers. Further research on how to develop a professional approach for handling the sick leave process is needed.

The importance of preoperative information for patient participation in colorectal surgery care

Journal of Clinical Nursing, Feb 28, 2013

Aim. This study aims to identify and describe patients' experiences of a preoperative information... more Aim. This study aims to identify and describe patients' experiences of a preoperative information session with a nurse, as part of the Enhanced Recovery After Surgery (ERAS) concept, and its impact on patient participation in their own care. Background. ERAS is a standardized, multimodal treatment program for elective colorectal surgery, leading to faster recovery and shorter hospital stays via inter-professional collaboration. The ERAS concept initiated for patients a week before surgery when the patient receives detailed information about the care process during a meeting with a nurse. Design. The study is a qualitative interpretive study based on interviews. Method. Twelve patients, nine men and three women, were interviewed. The interviews were transcribed verbatim and analysed using interpretive phenomenological analysis (IPA). Results. The analysis identified and formulated five themes: being seen, security, trust, responsibility and participation. All themes are closely related and illustrate positive and negative sides of the patient experience. They hang together and form a complete set of experiences; ERAS-conversation and its impact on patients' participation. Conclusions. The results show that patients feel confirmed in the ERAS-conversation. Healthcare professionals need to be bonding more information call during hospitalization. It is important to confirm the patient in order for them to participate and take responsibility. Reliance on caregivers is important for patients to feel safe and to participate in their own care. This study shows that the ERAS-conversation was experienced as being structured and individually tailored, but the information must apply to the patients throughout the period of care. Relevance to clinical practice. Some shortcomings have been revealed, which should enable improvement in the care of patients. Healthcare professionals need to raise awareness of 3 patients' responsibilities for participation in their own recovery and care. Healthcare professionals and patients need to be aware of each other's responsibilities.

Firm handling; the information exchange interaction by parents in paediatric care - An observational study

International Journal of Caring Sciences, 2011

Background. Information exchange is fundamental in the paediatric care encounter. Health care pro... more Background. Information exchange is fundamental in the paediatric care encounter. Health care professionals need further background knowledge to encounter the parents/guardians from their perspective in their minors' paediatric care. The parents'/guardians' ability to manage the situation is dependent on their receiving optimal information, which is why it is important to study how information is exchanged. Aim. The aim of this study was to identify, describe and conceptualize how parents/guardians resolved their main concern in information exchange with health care professionals in paediatric care situations involving their minors. Methodology. Glaser's grounded theory method was used and all data were analysed using constant comparative analysis. The observational study took place at three paediatric outpatient units at a university hospital and 24 parents/guardians participated. Data sources were field notes from 37 observations of paediatric care situations and five adherent excerpts from the minors' medical records. Grounded theory is a method of conceptualising behaviour, which is why an observational study of parents'/guardians' information exchange and social interaction in the context of nursing care is relevant as research design. Results. Firm handling was revealed as the way the parents/guardians resolved their main concerns when they were exchanging information about their minors' paediatric care. Firm handling is built on five interrelated categories: representative advocating, collaborating, aim sharing, supportive resourcing and minor bypassing. Conclusions. This knowledge suggests possible ways for health care professionals to design paediatric care that supports, facilitates, strengthens and improves the parents'/guardians' firm handling. The key issue is to find ways to support parents/guardians and minors so they can participate in health care encounters according to their preferences. Firm handling gives an opportunity to both reinforce parenthood in paediatric care and invite minors to participate.

Estudo de Métódos mistos de diagnóstico de câncer no pulmão que afetam a qualidade de vida

Reciis, Jul 3, 2008

Impact of Pelvic Pain and Endometriosis on Patient-Reported Outcomes and Experiences of Benign Hysterectomy: A Study from the Swedish National Register for Gynecological Surgery

Journal of Womens Health, May 1, 2018

Background: The study objective was to analyze and compare patient-reported experience measures (... more Background: The study objective was to analyze and compare patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) after hysterectomy in women with and without a preoperative complaint of pelvic pain associated with and without a confirmed diagnosis of endometriosis. Methods Retrospective nationwide register study. Data on 28776 hysterectomies performed on benign indication between 2004 and 2016 were retrieved from the Swedish National Register for Gynecological Surgery. Multivariable logistic regression models were used to compare the PREMs and PROMs items. The results are presented as adjusted odd ratios (aORs) and 95% confidence intervals (CI). Results: Regardless of the occurrence of pelvic pain preoperatively and a diagnosis of endometriosis, one year after surgery the women were satisfied or very satisfied (>90%) with the hysterectomy, and their medical condition was improved or much improved (>95%). The women with a preoperative complaint of pelvic pain and endometriosis more often reported excessively short hospital stays (aOR 1.45, 95%CI; 1.17-1.79), more severe complications after discharge (aOR 2.02, 95%CI; 1.59-2.66) at the eight-week follow-up and at the one-year follow-up (aOR 2.31, 95%CI; 1.57-3.39), and more dissatisfaction with the operation (aOR 1.83, 95%CI; 1.35-2.48) than preoperative pelvic pain-free women without endometriosis at the one-year follow-up. Conclusions: The majority of the women were satisfied after their hysterectomy. The women with pelvic pain and endometriosis were at a higher risk of being dissatisfied. Pelvic pain per se seemed to be the main factor affecting the rating in the PREMs and PROMs, and the endometriosis was a significant contributing factor.

Effects of self‐management education for persons with <scp>Parkinson's</scp> disease and their care partners: A qualitative observational study in clinical care

Nursing & Health Sciences, Apr 28, 2020

Persons with Parkinson's disease and their care partners want support from health care to develop... more Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.

Demanding interaction-given routines: An observational study on leukaemia patients and their nursing staff

International Journal of Nursing Practice, Dec 1, 1996

ABSTRACT

Unexpected enlightening of a “female world”. Male medical students’ experiences of learning and performing the first pelvic examination

Sexual & Reproductive Healthcare, Oct 1, 2012

Objective: To gain a deeper understanding of how undergraduate male medical students experience a... more Objective: To gain a deeper understanding of how undergraduate male medical students experience a pelvic examination learning concept and performing the first pelvic examination (PE) on a professional patient. Study design: A qualitative study. In-depth interviews with 12 male medical students' after their involvement in a learning session about the PE, with professional patients and a supervising gynecologist as instructors. The interviews were analyzed according to the constant comparative method, a variety of content analysis, to acquire a deeper understanding of the students' experiences and the ongoing social processes. Results: The essence of the entire analysis was ''Unexpected enlightening of a 'female world''' and was identified from the three categories; ''Not just any exam'', ''Professional supportive interaction'' and ''Humble awareness''. The male students' most prominent concern was how to establish a professional rapport with the patient in the PE situation. Beneficial active support from the professional patient and the gynecologist assisted the students to overcome inherent barriers and facilitated the examination procedure. The informants gained ''inside information'' from the patients' perspective of being examined leading to a new awareness about an earlier unknown ''female world'' that is what women might go through before and during a PE and an humble understanding of how vulnerable it is to be placed in the examination position. Conclusion: The beneficial PE learning concept promoted an unexpected insight in what a woman might experience during a PE, creating a humble awareness of this vulnerable intimate situation and ideas for how to establish professional rapport.

Social support as described by Swedish people diagnosed with type 2 diabetes mellitus

Primary Health Care Research & Development, 2009

To identify and describe the meaning of support and its impact on the lifesituation of people dia... more To identify and describe the meaning of support and its impact on the lifesituation of people diagnosed with Type 2 diabetes mellitus in relation to gender, age and duration of disease. Background: Social support can buffer the level and effects of stress. Diabetes requires self-care that is demanding and may cause stress. No previous investigations focusing on the perceptions of people with diabetes, concerning the content, need and desire they might have for social support, have been found. Methods: A purposive sample of 40 Swedish adults, 24 men and 16 women, diagnosed with Type 2 diabetes was included. Mixed methods were employed and qualitative data were collected by semi-structured interviews and quantitative data collected using the Norbeck Social Support Questionnaire (NSSQ). Findings: Participants described the meaning of support as mainly concerning informative and emotional support in managing diabetes. Women, independent of the duration of diabetes, experienced support as limited or non-existent when treated outside hospital/specialized care. Some men reported being given informative support and sufficient material support from health care professionals on diagnosis. Respondents considered the need for support individual, differing with regard to gender and age. Men were assumed to need more support and women were considered to have better networks. Younger people were perceived to need more support to learn to live with diabetes. NSSQ measurement showed people with diabetes scoring low figures on total emotional support, total aid and total function. Men scored higher on emotional support, aid and network than women. Conclusions: Diabetes demands knowledge about managing the disease and self-care, which is why informative and emotional support is important to gain control over the situation. Informants had perceived lack of support, particularly during the process of diagnosis of diabetes, in their contact with physicians and with primary health care.

Living With Breast Cancer

Cancer Nursing, Nov 1, 2007

Male breast cancer is a rare condition with scant research into its psychosocial impact. This phe... more Male breast cancer is a rare condition with scant research into its psychosocial impact. This phenomenologic study sought to elicit its lived experience. Following analysis of interview data, 4 key themes emerged: & Living with male breast cancer & Concealment as a strategy for managing the diagnosis & A contested masculinity & Interacting with health services Male breast cancer constitutes a unique lived experience for men that is unparalleled in other disease profiles. The idea of living with a feminized illness was very distressing and stigmatizing for some men. Furthermore, treatment resulted in a profound change to the concept of their embodied selves and constituted a significant change to body image and sexuality. This was reinforced in participants who experienced erectile dysfunction related to tamoxifen therapy. Sadly, some health professionals were unable to offer specific psychosocial support, and participants felt marginalized from the potential benefits of the treatment environment. However, participants adapted to the illness by reasserting and renegotiating masculinity and finding ways to accommodate life with a stigmatizing condition and an altered body image.

Why Do Young Women Continue to Have Sexual Intercourse Despite Pain?

Journal of Adolescent Health, Oct 1, 2008

Many young women suffer from pain and discomfort during sexual intercourse, and an increasing num... more Many young women suffer from pain and discomfort during sexual intercourse, and an increasing number of them seek help for their problems. It seems that some young women continue to have sexual intercourse despite pain. However, their motives are unclear. Methods: A total of 16 women, aged 14 to 20 years, with variable degrees of coital pain were selected at a youth center in a city in southeastern Sweden, to explore why they continued to have sexual intercourse despite pain. The women participated in audiotaped qualitative individual interviews, which were analyzed using the constant comparative method from grounded theory. Results: During the analysis we identified the core category striving to be affirmed in their image of an ideal woman and the categories resignation, sacrifice, and feeling guilt. The perceived ideal women had several distinct characteristics, such as willingness to have sexual intercourse, being perceptive of their partner's sexual needs, and being able to satisfy their partners. Having sexual intercourse per se was considered to be an affirmation of being a normal woman, irrespective of pain or discomfort. Conclusions: These young women's focus on a constructed ideal explains why they continue to have sexual intercourse despite pain. Greater awareness of these beliefs among gynecologists, sexologists, and other healthcare professionals involved in the management of young women with coital pain would be beneficial.

Review for "Stigma and healthcare access among transgender and gender‐diverse people: A qualitative meta‐synthesis

The Phantom of Death Improving Quality of Life

American Journal of Hospice and Palliative Medicine, Jan 12, 2012

The purpose of this study was, using secondary analysis on data collected from previous empirical... more The purpose of this study was, using secondary analysis on data collected from previous empirical studies, to focus on improving the quality of life due to the new possibilities for living after a cancer diagnosis. No matter how long or short the life will be, quality of life in palliative care is about &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;living in the best way&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; until death. The data analysis identified 4 main themes; death as a main concern, reevaluating life, living a normal life with support, and living until death. The key message is that the patients are living until they die. Palliative care should facilitate and support the patients in their new life situation in order to sustain their quality of life. They are still alive--living until death.

Guidelines for writing a commentary

International Journal of Qualitative Studies on Health and Well-being, 2016

Does Advoy.com™ help patients with primary immunodeficiency diseases experience that their life situation has improved?

Reciis, Jun 30, 2010

Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more ofte... more Lifelong immunoglobulin therapy for patients with primary immunodeficiency diseases are more often provided at home. We explored the impact of living with a chronic disease, the life situation as well as using Advoy, a new web-based patient diary with messaging function. Twelve adults from Sweden wrote an essay each about their disease and how it is to be an Advoy user. The text was analyzed with directed qualitative content analysis. The respondents stated that they were living on a border; hence their lives were much better after starting their home therapy. Using Advoy made them feel more confident, since the overview and history of their treatment gave them information and understanding about their problems. It was hard to navigate on the Advoy site, and this made some of the respondents frustrated, so they used it only for plain treatment documentation. Improvements are needed in Advoy, in order to enhance self care activities.

Exploring family functioning and ‐ hardiness in families’ experiencing adult intensive care – A cross-sectional study

PLOS ONE, Jul 6, 2023

Being cared for in an intensive care unit affects both the patient being cared for and the family... more Being cared for in an intensive care unit affects both the patient being cared for and the family in various ways. The family is of great importance for the recovery of the former intensivecare patient. The aim is to explore family functioning and family hardiness in families of former intensive care patients. A cross-sectional study using two self-reported questionnaires. Former adult intensive care patients and their family were recruited to participate between December 2017 and June 2019. The data were coded and entered the Statistical Package for the Social Sciences version 25, for analysis. To explore questionnaire data, descriptive and inferential statistical analyses were performed. Scale values were calculated on, both family wise and between the patients and the family members. STROBE checklist was used. Data was collected from 60 families (60 former intensive cared patients and 85 family members) and showed that 50 families scored healthy family functioning and 52 high strengths in hardiness. The data showed small variations between and within families for family functioning and family hardiness, there were only two families scoring low for both family functioning and hardiness. The variation was higher within the families, but there was no significance level.The conclusions were that family functioning and hardiness was, to a large extent, assessed as good by the families. Nevertheless, it is important to help the family obtain information and support. So, the family need to continue to communicate, finding coping abilities and strengths in adopting new strategies to protect the family unit. The family are very important for members' mental and physical recovery as the health of one family member affects the family as a unit.

The lived experience among Somali women of giving birth in Sweden: an interpretive phenomenological study

BMC Pregnancy and Childbirth, May 1, 2020

Background: The health care-seeking behaviour among Somali women is different from Swedish women'... more Background: The health care-seeking behaviour among Somali women is different from Swedish women's behaviour, and this may have consequences for birth giving. The aim of the study was to identify and describe Somali women's lived experience of birth giving in Sweden. Methods: Qualitative individual interviews were conducted in Swedish with seven Somali women. The sample was purposeful, and the snowball sampling method was used. The interviews were digitally recorded and transcribed verbatim. Data were analysed using interpretative phenomenological analysis. Results: Four themes emerged during the analysis which revealed the Somali women's lived experiences of giving birth in Sweden. a) Being recognised and confirmed as a woman. Somali women consider it important to be confirmed as a woman by the surrounding and professionals during pregnancy and birth giving. b) Communication is important for the women's independence. There is a need to provide a structure for how this information is given and adaptation regarding content and format .c) Something naturally becomes unknown and complicated. Somali women come from a different culture, which affects their lived experiences of pregnancy and birth giving. There is a need for improved and clearer information for these Somali women regarding pregnancy and birth giving in another culture-the Swedish context d) Professional and competent taking care of. The women appreciate if they are treated with competency and professionalism; they do not want to be discriminated. The women feel confidence in health care when they meet competent and professional health care professionals. Conclusions: The findings in the study indicate that reproductive health care for Somali women should be improved with regard to cultural differences and lived experiences, as this affects their experience of pregnancy and childbirth in Sweden. There is a need for both knowledge and understanding in order to provide good quality care for these Somali women, especially those who have been genitally mutilated.

Parental Opinions of Their Child’s Experience in the Legal Process: An Interpretative Analysis

Journal of Child Sexual Abuse, Apr 3, 2014

The aim of this study was to demonstrate how parents of children, who are victims of sexual assau... more The aim of this study was to demonstrate how parents of children, who are victims of sexual assault, experience the legal process, seen from the child's, as well as the parents' perspective. Nine parents, identified in the records of three public prosecution offices in three cities in Sweden, were interviewed. The parents described feelings of shame and guilt over what their children had experienced. They felt stigmatized and had difficulty fulfilling their parental role; perceived a lack of information and support from the professionals involved; experienced a sense of withdrawal from their role as parents, though they felt the professionals who worked with their children were helpful and influential.

To Use or Not to Use – Practitioners’ Perceptions of an Open Web Portal for Young Patients With Diabetes

Journal of Medical Internet Research, Nov 9, 2012

Background: Health care professionals' attitudes can be a significant factor in their acceptance ... more Background: Health care professionals' attitudes can be a significant factor in their acceptance and efficient use of information technology, so they need to have more knowledge about this resource to enhance their participation. Objective: We explored practitioners' perceptions of using an open-access interactive Web portal tailored to young diabetes type 1 patients and their guardians or significant others. The portal offered discussion forums, blog tools, self-care and treatment information, research updates, and news from local practitioners. Methods: Eighteen professionals who were on pediatric diabetes care teams each wrote an essay on their experience using the portal. For their essays, they were asked to describe two situations, focusing on positive and negative user experiences. The essays were analyzed using qualitative content analysis. Results: Based on our analysis of the respondents essays, we identified three categories that describe perceptions of the Web portal. The first category-to use or not to use-included the different perspectives of the practioners; those who questioned the benefits of using the Web portal or showed some resistance to using it. The frequency of use among the practitioners varied greatly. Some practitioners never used it, while others used it on a daily basis and regularly promoted it to their patients. Some respondents in this category reflected on the benefits of contributing actively to online dialogues. In the second categoryinformation center for everyone-practitioners embraced the site as a resource for scientifically sound information and advice. As part of their practice, and as a complement to traditional care, practitioners in this category described sending information through the portal to patients and their significant others. Practitioners felt safe recommending the site because they knew that the information provided was generated by other practitioners. They also assumed that their patients benefited from actively using the Web portal at home: peers brought the site to life by exchanging experiences through the discussion forums. In the third category-developing our practice-practitioners reflected upon the types of information that should be given to patients and how to give it (ie, during in-person appointments or through the Web portal). They perceived meeting with various professionals at other hospitals to update information on the portal and develop content policies as constructive teamwork. Practitioners expressed interest in reading patients' dialogues online to learn more about their views. They also thought about how they could use the portal to adapt more to patients' needs (eg, creating functions so patients could chat with the diabetes nurses and doctors). Conclusions: Practitioners expressed positive perceptions toward a tailored open Web portal. They suggested that future benefits could be derived from systems that integrate factual information and online dialogues between practitioners and patients (ie, exchanging information for everyone's benefit).

Men's experience of their life situation when diagnosed with advanced prostate cancer

European Journal of Oncology Nursing, Sep 1, 2009

Prostate cancer has been a disease of older men but age at diagnosis is falling in Sweden. Fatigu... more Prostate cancer has been a disease of older men but age at diagnosis is falling in Sweden. Fatigue has been regarded as a common symptom of cancer and may compromise quality of life in prostate cancer patients. The overall purpose of this thesis was to identify and describe fatigue and its influence on men's lives when undergoing examinations for suspected prostate cancer and diagnosed with prostate cancer. Further, the purpose was to understand if prostate cancer affects the men's daily lives. The data were collected consecutively at the outpatient clinics of two different hospitals in Sweden. Data from qualitative interviews using the same topics, with modification in paper IV, were analysed by Gadamer´s hermeneutics. Paper I: Eleven men undergoing routine examination for prostate cancer (transrectal ultrasound and biopsy), but diagnosed as having benign disease were interviewed during the spring of 2002. At the time of the prostate cancer examination, the men did not feel fatigue, i.e. not because of the examination; they felt healthy. Paper II: Sixteen men newly (within 2-4 weeks) diagnosed as having localized prostate cancer and with a prostate-specific antigen level of <10 ng/ml and untreated at the time of the interview participated between spring and autumn 2003. Most of the men did not experience fatigue due to the diagnosis but experienced every day fatigue and cancer influenced the men´s daily lives. The men felt healthy. Paper III: Ten men newly (within 2-4 weeks) diagnosed as having advanced prostate cancer PSA of > 100 ng/ml and treated for no more than 2 weeks at the time of the interview participated between autumn 2003 and December 2005. The men did not experience fatigue due to advanced prostate cancer but they experienced normal every day fatigue. The men felt healthy with some dysfunction influencing their daily lives. Paper IV: All 22 men who were still alive since the first interview (in studies II and III) were followed up between May 2005 and November 2007. The men were living with a sense of feeling healthy, even when having lived with prostate cancer for approximately two years; both cancer stage and age had an influence on them. All the men experienced Every Day Fatigue. Conclusions: Personality and anxiety contributed to fatigue when undergoing examination for suspected prostate cancer. Localized prostate cancer affected the men´s emotions and contacts giving them a new perspective on life. Advanced prostate cancer affects men´s lives: they are placed in a new life situation, against their will, and in this new situation, they form a new life perspective. The follow-up study confirmed the men´s view that age influences them, they live with uncertainty but with strengthened self-esteem, finding a balance in a changed life situation. According to the present studies the men felt healthy in spite of prostate cancer. Complementary findings were found about existential thoughts. Health professionals have a unique position to identify the different stages of the men´s adaptation to prostate cancer to guide them towards their individual needs at each stage of their adjustment.

Primary Healthcare Professionals’ Experiences of the Sick Leave Process: A Focus Group Study in Sweden

Journal of Occupational Rehabilitation, Jan 24, 2013

The aim of this study was to explore primary healthcare (PHC) professionals' experiences of the s... more The aim of this study was to explore primary healthcare (PHC) professionals' experiences of the sick leave process. Methods: This is an explorative study using data from four semi-structured focus group discussions with a purposeful sample of PHC professionals in Östergötland County, Sweden. Content analysis with an inductive approach was used in the analysis. Results: Four key themes emerged from the analysis; priority to the sick leave process, handling sickness certifications, collaboration within PHC and with other stakeholders, and work ability assessments. Patients' need for sick leave was handled from each professional group's perspective. Collaboration was considered important, but difficult to achieve and all the competencies available at the PHC centre were not used for work ability assessments. There was insufficient knowledge of patients' work demands and contact with an employer was rare, and the strained relationship with the social insurance officers affected the collaboration. Conclusions: This study highlights the challenges physicians and other PHC professionals face when handling the need for sick leave, especially when encountering patients with symptombased diagnoses, and the influence of non-medical factors. Hindrances to good practice were increased demands, collaboration, and role responsibility. The challenges in the sick leave process concerned both content and consequences related to poor collaboration within PHC and with representatives from various organizations, primarily employers and social insurance officers. Further research on how to develop a professional approach for handling the sick leave process is needed.

The importance of preoperative information for patient participation in colorectal surgery care

Journal of Clinical Nursing, Feb 28, 2013

Aim. This study aims to identify and describe patients' experiences of a preoperative information... more Aim. This study aims to identify and describe patients' experiences of a preoperative information session with a nurse, as part of the Enhanced Recovery After Surgery (ERAS) concept, and its impact on patient participation in their own care. Background. ERAS is a standardized, multimodal treatment program for elective colorectal surgery, leading to faster recovery and shorter hospital stays via inter-professional collaboration. The ERAS concept initiated for patients a week before surgery when the patient receives detailed information about the care process during a meeting with a nurse. Design. The study is a qualitative interpretive study based on interviews. Method. Twelve patients, nine men and three women, were interviewed. The interviews were transcribed verbatim and analysed using interpretive phenomenological analysis (IPA). Results. The analysis identified and formulated five themes: being seen, security, trust, responsibility and participation. All themes are closely related and illustrate positive and negative sides of the patient experience. They hang together and form a complete set of experiences; ERAS-conversation and its impact on patients' participation. Conclusions. The results show that patients feel confirmed in the ERAS-conversation. Healthcare professionals need to be bonding more information call during hospitalization. It is important to confirm the patient in order for them to participate and take responsibility. Reliance on caregivers is important for patients to feel safe and to participate in their own care. This study shows that the ERAS-conversation was experienced as being structured and individually tailored, but the information must apply to the patients throughout the period of care. Relevance to clinical practice. Some shortcomings have been revealed, which should enable improvement in the care of patients. Healthcare professionals need to raise awareness of 3 patients' responsibilities for participation in their own recovery and care. Healthcare professionals and patients need to be aware of each other's responsibilities.

Firm handling; the information exchange interaction by parents in paediatric care - An observational study

International Journal of Caring Sciences, 2011

Background. Information exchange is fundamental in the paediatric care encounter. Health care pro... more Background. Information exchange is fundamental in the paediatric care encounter. Health care professionals need further background knowledge to encounter the parents/guardians from their perspective in their minors' paediatric care. The parents'/guardians' ability to manage the situation is dependent on their receiving optimal information, which is why it is important to study how information is exchanged. Aim. The aim of this study was to identify, describe and conceptualize how parents/guardians resolved their main concern in information exchange with health care professionals in paediatric care situations involving their minors. Methodology. Glaser's grounded theory method was used and all data were analysed using constant comparative analysis. The observational study took place at three paediatric outpatient units at a university hospital and 24 parents/guardians participated. Data sources were field notes from 37 observations of paediatric care situations and five adherent excerpts from the minors' medical records. Grounded theory is a method of conceptualising behaviour, which is why an observational study of parents'/guardians' information exchange and social interaction in the context of nursing care is relevant as research design. Results. Firm handling was revealed as the way the parents/guardians resolved their main concerns when they were exchanging information about their minors' paediatric care. Firm handling is built on five interrelated categories: representative advocating, collaborating, aim sharing, supportive resourcing and minor bypassing. Conclusions. This knowledge suggests possible ways for health care professionals to design paediatric care that supports, facilitates, strengthens and improves the parents'/guardians' firm handling. The key issue is to find ways to support parents/guardians and minors so they can participate in health care encounters according to their preferences. Firm handling gives an opportunity to both reinforce parenthood in paediatric care and invite minors to participate.

Estudo de Métódos mistos de diagnóstico de câncer no pulmão que afetam a qualidade de vida

Reciis, Jul 3, 2008

Impact of Pelvic Pain and Endometriosis on Patient-Reported Outcomes and Experiences of Benign Hysterectomy: A Study from the Swedish National Register for Gynecological Surgery

Journal of Womens Health, May 1, 2018

Background: The study objective was to analyze and compare patient-reported experience measures (... more Background: The study objective was to analyze and compare patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) after hysterectomy in women with and without a preoperative complaint of pelvic pain associated with and without a confirmed diagnosis of endometriosis. Methods Retrospective nationwide register study. Data on 28776 hysterectomies performed on benign indication between 2004 and 2016 were retrieved from the Swedish National Register for Gynecological Surgery. Multivariable logistic regression models were used to compare the PREMs and PROMs items. The results are presented as adjusted odd ratios (aORs) and 95% confidence intervals (CI). Results: Regardless of the occurrence of pelvic pain preoperatively and a diagnosis of endometriosis, one year after surgery the women were satisfied or very satisfied (>90%) with the hysterectomy, and their medical condition was improved or much improved (>95%). The women with a preoperative complaint of pelvic pain and endometriosis more often reported excessively short hospital stays (aOR 1.45, 95%CI; 1.17-1.79), more severe complications after discharge (aOR 2.02, 95%CI; 1.59-2.66) at the eight-week follow-up and at the one-year follow-up (aOR 2.31, 95%CI; 1.57-3.39), and more dissatisfaction with the operation (aOR 1.83, 95%CI; 1.35-2.48) than preoperative pelvic pain-free women without endometriosis at the one-year follow-up. Conclusions: The majority of the women were satisfied after their hysterectomy. The women with pelvic pain and endometriosis were at a higher risk of being dissatisfied. Pelvic pain per se seemed to be the main factor affecting the rating in the PREMs and PROMs, and the endometriosis was a significant contributing factor.

Effects of self‐management education for persons with <scp>Parkinson's</scp> disease and their care partners: A qualitative observational study in clinical care

Nursing & Health Sciences, Apr 28, 2020

Persons with Parkinson's disease and their care partners want support from health care to develop... more Persons with Parkinson's disease and their care partners want support from health care to develop the skills to handle everyday life with the long-term condition. Earlier findings indicate that participants of the self-management program Swedish National Parkinson School experience several benefits of the program. The purpose of this qualitative observational study was to explore if participants had implemented the strategies of self-monitoring included in the program and use them to communicate health care status and needs in clinical encounters. Data were collected 3 to 15 months after participation in the program and analyzed using constant comparative analysis. Three categories were evident: "Self-observation in everyday life," "Self-care activities to promote health," and "Managing emotional impact of Parkinson's Disease." Categories were linked together in a core category that highlight the use of self-management strategies described by participants during clinical encounters. Results confirmed that persons with Parkinson's disease and care partners use the techniques of self-observation in their everyday lives. Observations of effects in clinical care can be a valuable approach to evaluate the outcomes educational interventions and their benefits for individuals and health care.

Demanding interaction-given routines: An observational study on leukaemia patients and their nursing staff

International Journal of Nursing Practice, Dec 1, 1996

ABSTRACT

Unexpected enlightening of a “female world”. Male medical students’ experiences of learning and performing the first pelvic examination

Sexual & Reproductive Healthcare, Oct 1, 2012

Objective: To gain a deeper understanding of how undergraduate male medical students experience a... more Objective: To gain a deeper understanding of how undergraduate male medical students experience a pelvic examination learning concept and performing the first pelvic examination (PE) on a professional patient. Study design: A qualitative study. In-depth interviews with 12 male medical students' after their involvement in a learning session about the PE, with professional patients and a supervising gynecologist as instructors. The interviews were analyzed according to the constant comparative method, a variety of content analysis, to acquire a deeper understanding of the students' experiences and the ongoing social processes. Results: The essence of the entire analysis was ''Unexpected enlightening of a 'female world''' and was identified from the three categories; ''Not just any exam'', ''Professional supportive interaction'' and ''Humble awareness''. The male students' most prominent concern was how to establish a professional rapport with the patient in the PE situation. Beneficial active support from the professional patient and the gynecologist assisted the students to overcome inherent barriers and facilitated the examination procedure. The informants gained ''inside information'' from the patients' perspective of being examined leading to a new awareness about an earlier unknown ''female world'' that is what women might go through before and during a PE and an humble understanding of how vulnerable it is to be placed in the examination position. Conclusion: The beneficial PE learning concept promoted an unexpected insight in what a woman might experience during a PE, creating a humble awareness of this vulnerable intimate situation and ideas for how to establish professional rapport.

Social support as described by Swedish people diagnosed with type 2 diabetes mellitus

Primary Health Care Research & Development, 2009

To identify and describe the meaning of support and its impact on the lifesituation of people dia... more To identify and describe the meaning of support and its impact on the lifesituation of people diagnosed with Type 2 diabetes mellitus in relation to gender, age and duration of disease. Background: Social support can buffer the level and effects of stress. Diabetes requires self-care that is demanding and may cause stress. No previous investigations focusing on the perceptions of people with diabetes, concerning the content, need and desire they might have for social support, have been found. Methods: A purposive sample of 40 Swedish adults, 24 men and 16 women, diagnosed with Type 2 diabetes was included. Mixed methods were employed and qualitative data were collected by semi-structured interviews and quantitative data collected using the Norbeck Social Support Questionnaire (NSSQ). Findings: Participants described the meaning of support as mainly concerning informative and emotional support in managing diabetes. Women, independent of the duration of diabetes, experienced support as limited or non-existent when treated outside hospital/specialized care. Some men reported being given informative support and sufficient material support from health care professionals on diagnosis. Respondents considered the need for support individual, differing with regard to gender and age. Men were assumed to need more support and women were considered to have better networks. Younger people were perceived to need more support to learn to live with diabetes. NSSQ measurement showed people with diabetes scoring low figures on total emotional support, total aid and total function. Men scored higher on emotional support, aid and network than women. Conclusions: Diabetes demands knowledge about managing the disease and self-care, which is why informative and emotional support is important to gain control over the situation. Informants had perceived lack of support, particularly during the process of diagnosis of diabetes, in their contact with physicians and with primary health care.

Living With Breast Cancer

Cancer Nursing, Nov 1, 2007

Male breast cancer is a rare condition with scant research into its psychosocial impact. This phe... more Male breast cancer is a rare condition with scant research into its psychosocial impact. This phenomenologic study sought to elicit its lived experience. Following analysis of interview data, 4 key themes emerged: & Living with male breast cancer & Concealment as a strategy for managing the diagnosis & A contested masculinity & Interacting with health services Male breast cancer constitutes a unique lived experience for men that is unparalleled in other disease profiles. The idea of living with a feminized illness was very distressing and stigmatizing for some men. Furthermore, treatment resulted in a profound change to the concept of their embodied selves and constituted a significant change to body image and sexuality. This was reinforced in participants who experienced erectile dysfunction related to tamoxifen therapy. Sadly, some health professionals were unable to offer specific psychosocial support, and participants felt marginalized from the potential benefits of the treatment environment. However, participants adapted to the illness by reasserting and renegotiating masculinity and finding ways to accommodate life with a stigmatizing condition and an altered body image.

Why Do Young Women Continue to Have Sexual Intercourse Despite Pain?

Journal of Adolescent Health, Oct 1, 2008

Many young women suffer from pain and discomfort during sexual intercourse, and an increasing num... more Many young women suffer from pain and discomfort during sexual intercourse, and an increasing number of them seek help for their problems. It seems that some young women continue to have sexual intercourse despite pain. However, their motives are unclear. Methods: A total of 16 women, aged 14 to 20 years, with variable degrees of coital pain were selected at a youth center in a city in southeastern Sweden, to explore why they continued to have sexual intercourse despite pain. The women participated in audiotaped qualitative individual interviews, which were analyzed using the constant comparative method from grounded theory. Results: During the analysis we identified the core category striving to be affirmed in their image of an ideal woman and the categories resignation, sacrifice, and feeling guilt. The perceived ideal women had several distinct characteristics, such as willingness to have sexual intercourse, being perceptive of their partner's sexual needs, and being able to satisfy their partners. Having sexual intercourse per se was considered to be an affirmation of being a normal woman, irrespective of pain or discomfort. Conclusions: These young women's focus on a constructed ideal explains why they continue to have sexual intercourse despite pain. Greater awareness of these beliefs among gynecologists, sexologists, and other healthcare professionals involved in the management of young women with coital pain would be beneficial.

Review for "Stigma and healthcare access among transgender and gender‐diverse people: A qualitative meta‐synthesis

The Phantom of Death Improving Quality of Life

American Journal of Hospice and Palliative Medicine, Jan 12, 2012

The purpose of this study was, using secondary analysis on data collected from previous empirical... more The purpose of this study was, using secondary analysis on data collected from previous empirical studies, to focus on improving the quality of life due to the new possibilities for living after a cancer diagnosis. No matter how long or short the life will be, quality of life in palliative care is about &amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot;living in the best way&amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;amp;quot; until death. The data analysis identified 4 main themes; death as a main concern, reevaluating life, living a normal life with support, and living until death. The key message is that the patients are living until they die. Palliative care should facilitate and support the patients in their new life situation in order to sustain their quality of life. They are still alive--living until death.