Agneta Anderzén-Carlsson

Fathers’ Everyday Experiences of Having an Adult Child who Suffers From Long-Term Mental Illness

The purpose of this study is to describe the everyday life experiences of fathers of adult children who have various forms of long-term mental illness. Ten fathers were interviewed. Content analysis revealed one main theme: Maintaining a strong façade while balancing on a thin line, and two sub-themes: (1) A constant struggle and (2) A feeling of powerlessness. The fathers demonstrated great engagement and good will to participate in their childs life. A sense of powerlessness and frustration at not having or being allowed freedom of action emerged. Cooperation between children, parents, the care service providers, and the authorities could increase the parents’ abilities to provide adequate support to the child as well as helping them to understand and make the incomprehensible manageable.

Interprofessional ethics rounds concerning dialysis patients: staff’s ethical reflections before and after rounds

Objective: To evaluate whether ethics rounds stimulated ethical reflection. Methods: Philosopher-ethicist-led interprofessional team ethics rounds concerning dialysis patient care problems were applied at three Swedish hospitals. The philosophers were instructed to stimulate ethical reflection and promote mutual understanding between professions but not to offer solutions. Questionnaires directly before and after rounds were answered by 194 respondents. The analyses were primarily content analysis with Boyd’s framework but were also statistical in nature. Findings: Seventy-six per cent of the respondents reported a moderate to high rating regarding new insights on ethical problem identification, but the ethics rounds did not seem to stimulate the ethical reflection that the respondents had expected (p<0.001). Dominant new insights did not seem to fit into traditional normative ethics but were instead interpreted as hermeneutic ethics. This was illustrated in the extended perspective on the patient and increased awareness of relations to other professions. Regarding insights into how to solve ethical problems, the request for further interprofessional dialogue dominated both before and after rounds. Conclusion: The findings show the need for interprofessional reflective ethical practice but a balance between ethical reflection and problem solving is suggested if known patients are discussed. Further research is needed to explore the most effective leadership for reflective ethical practice.

Medical Yoga for Patients with Stress-Related Symptoms and Diagnoses in Primary Health Care: A Randomized Controlled Trial

An increasing number of patients are suffering from stress-related symptoms and diagnoses. The purpose of this study was to evaluate the medical yoga treatment in patients with stress-related symptoms and diagnoses in primary health care. A randomized controlled study was performed at a primary health care centre in Sweden from March to June, 2011. Patients were randomly allocated to a control group receiving standard care or a yoga group treated with medical yoga for 1 hour, once a week, over a 12-week period in addition to the standard care. A total of 37 men and women, mean age of 53 ± 12 years were included. General stress level (measured using Perceived Stress Scale (PSS)), burnout (Shirom-Melamed Burnout Questionnaire (SMBQ)), anxiety and depression (Hospital Anxiety and Depression Scale (HADS)), insomnia severity (Insomnia Severity Index (ISI)), pain (visual analogue scale (VAS)), and overall health status (Euro Quality of Life VAS (EQ-VAS)) were measured before and after 12 weeks. Patients assigned to the Yoga group showed significantly greater improvements on measures of general stress level (P < 0.000), anxiety (P < 0.019), and overall health status (P < 0.018) compared to controls. Treatment with medical yoga is effective in reducing levels of stress and anxiety in patients with stress-related symptoms in primary health care.

Parental experiences of providing skin-to-skin care to their newborn infant—Part 2: A qualitative meta-synthesis

Aim To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants. Background SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified. Design The present meta-synthesis was guided by the methodology described by Paterson and co-workers. Data sources Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers. Review methods The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper. Results When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child. Conclusion The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.Aim To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants. Background SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified. Design The present meta-synthesis was guided by the methodology described by Paterson and co-workers. Data sources Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers. Review methods The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper. Results When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child. Conclusion The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.Aim To synthesize and interpret qualitative research findings focusing on parental experiences of skin-to-skin care (SSC) for newborn infants. Background SSC induces many benefits for newborn infants and their parents. Three meta-analyses have been conducted on physiological outcomes, but no previous qualitative meta-synthesis on parental experiences of SSC has been identified. Design The present meta-synthesis was guided by the methodology described by Paterson and co-workers. Data sources Four databases were searched, without year or language limitations, up until December 2013. Manual searches were also performed. The searches and subsequent quality appraisal resulted in the inclusion of 29 original qualitative papers from 9 countries, reporting experiences from 401 mothers and 94 fathers. Review methods The meta-synthesis entails a meta-data analysis, analysis of meta-method, and meta-theory in the included primary studies. Based on the three analyses, the meta-synthesis represents a new interpretation of a phenomenon. The results of the meta-data analysis have been presented as a qualitative systematic review in a separate paper. Results When synthesizing and interpreting the findings from the included analyses, a theoretical model of Becoming a parent under unfamiliar circumstances emerged. Providing SSC seems to be a restorative as well as an energy-draining experience. A supportive environment has been described as facilitating the restorative experience, whereas obstacles in the environment seem to make the provision of SSC energy-draining for parents. When the process is experienced as positive, it facilitates the growth of parental self-esteem and makes the parents ready to assume full responsibility for their child. Conclusion The results show that SSC can be interpreted not only as a family-including and important health care intervention but also in terms of actually becoming a parent. The process of becoming a parent in this specific situation is influenced by external factors in three different levels; family and friends, community, and society at large. The descriptions of providing SSC are similar to what has previously been described as the natural process of becoming a mother or a father.

Parental experiences of providing skin-to-skin care to their newborn infant : Part 1: A qualitative systematic review

Aim To describe parental experiences of providing skin-to-skin care (SSC) to their newborn infants. Background SSC care for newborn infants has been reported to have positive physiological and psychological benefits to the infants and their parents. No systematic review regarding parental experiences has been identified. Design In this first part of a meta-study, the findings of a systematic literature review on parental experience of SSC care are presented. Data sources Four databases were searched, without year or language limitations, up until December 2013. Manual searches were performed in reference lists and in a bibliography of the topic. Review methods After a quality-appraisal process, data from the original articles were extracted and analysed using qualitative content analysis. Results The systematic and manual searches led to the inclusion of 29 original qualitative papers from nine countries, reporting experiences from 401 mothers and 94 fathers. Two themes that characterized the provision of SSC emerged: a restoring experience and an energy-draining experience. Conclusion This review has added scientific and systematic knowledge about parental experiences of providing SSC. Further research about fathers’ experiences is recommended.

Medical yoga: Another way of being in the world—A phenomenological study from the perspective of persons suffering from stress-related symptoms

The prevalence of stress-related illness has grown in recent years. Many of these patients seek help in primary health care. Yoga can reduce stress and thus complements pharmacological therapy in medical practice. To our knowledge, no studies have investigated patients’ experiences of yoga treatment in a primary health care setting or, specifically, the experiences of yoga when suffering from stress-related illness. Thus, the aim of the present study was to explore the meaning of participating in medical yoga as a complementary treatment for stress-related symptoms and diagnosis in a primary health care setting. This study has a descriptive phenomenological design and took place at a primary health care centre in Sweden during 2011. Five women and one man (43–51 years) participated. They were recruited from the intervention group (n=18) in a randomized control trial, in which they had participated in a medical yoga group in addition to standard care for 12 weeks. Data were collected by means of qualitative interviews, and a phenomenological data analysis was conducted. The essential meaning of the medical yoga experience was that the medical yoga was not an endpoint of recovery but the start of a process towards an increased sense of wholeness. It was described as a way of alleviating suffering, and it provided the participants with a tool for dealing with their stress and current situation on a practical level. It led to greater self-awareness and self-esteem, which in turn had an implicit impact on their lifeworld. In phenomenological terms, this can be summarized as Another way of being in the world, encompassing a perception of deepened identity. From a philosophical perspective, due to using the body in a new way (yoga), the participants had learnt to see things differently, which enriched and recast their perception of themselves and their lives.

The experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the next of kin's perspective: a qualitative study.

Background: Pulmonary rehabilitation increases functional capacity and quality of life and decrease exacerbations in patients with chronic obstructive pulmonary disease (COPD), but there is little knowledge of how it influences their next of kin. Aims: To describe the experience of a multidisciplinary programme of pulmonary rehabilitation in primary health care from the perspective of the next of kin. Methods: A descriptive qualitative study was undertaken as part of a longitudinal study comprising a multidisciplinary programme for patients with COPD where the next of kin were invited to one session. Semi-structured interviews were conducted with 20 next of kin and analysed by qualitative content analysis. Results: One main theme emerged — Life still remains overshadowed by illness. There were three sub-themes: a sense of deepened understanding; a sense of personal vulerability; and a sense of relief of burden. Conclusions: The next of kins life was still overshadowed by illness, despite the multidisciplinary programme. Although experiencing positive outcomes two years after the programme, the next of kin expressed a need for more support. This study has shown that next of kin could benefit from their own participation and/or that of the patient in a multidisciplinary programme of pulmonary rehabilitation. We believe that next of kin should be offered primary health care support for the sake of their own health, but also in order to manage their informal caregiver role. The experiences described here could form a basis for further development of interventions for next of kin of patients with COPD.

Finding a wider horizon : experiences of being a next-of-kin of a person suffering from colorectal cancer as told after having participated in a psychoeducational program

AIM The aim of this study was twofold: first, to describe the experience of being the next-of-kin of a person suffering from colorectal cancer (CRC), and second, to describe how a psychoeducational program (PEP) might contribute to the next-of-kins life experience. Psychosocial interventions for next-of-kin to cancer patients are effective in improving quality of life issues, although there are conflicting results in previous studies. Most studies have evaluated the effects of PEP for mixed cancer groups but there is little knowledge about how next-of-kin to a person treated for CRC describe their experience of life and their experience of participating in a PEP. METHODS The study used a qualitative descriptive design. Individual, open-ended interviews with each of the 18 next-of-kin, of persons receiving treatment for CRC, who participated in a PEP. Data were analyzed using content analysis. RESULTS Based on the experiences described by the next-of-kin to a person treated for CRC, the subtheme; Facing a personal challenge was developed. From their described experiences of participating in a PEP, the subtheme Obtaining New Insights and Perspectives emerged. One main theme was finally identified; Finding a Wider Horizon. The study illuminates the importance of integrating the next-of-kin/family in the colorectal cancer care. CONCLUSION The findings from this study can be used to plan future interventions for next-of-kin to patients with CRC as it offers possibilities to understand the next-of-kins situation and experience from participating in a PEP.

CHARGE Syndrome—A Five Case Study of the Syndrome Characteristics and Health Care Consumption During the First Year in Life

CHARGE syndrome is characterized by impaired vision and hearing, as well as physical malformations. The aim of this study is to describe the characteristics of the malformations and the health care consumption during the first year, in a Swedish sample having CHARGE syndrome. Three of the five individuals fulfilled all the traditional criteria for a clinical diagnosis of CHARGE syndrome. All infants were hospitalized from 26 to 230 days, subjected to 10-34 different diagnostic procedures and prescribed 10-28 different medications during their first year. Coordinated and individually adapted care is urged, as these infants and their families are in of need multiple health care contacts.

Experiences of parenting a child with medical complexity in need of acute hospital care

Parents of children with medical complexity have described being responsible for providing advanced care for the child. When the child is acutely ill, they must rely on the health-care services during short or long periods of hospitalization. The purpose of this study was to describe parental experiences of caring for their child with medical complexity during hospitalization for acute deterioration, specifically focussing on parental needs and their experiences of the attitudes of staff. Data were gathered through individual interviews and analyzed using qualitative content analysis. The care period can be interpreted as a balancing act between acting as a caregiver and being in need of care. The parents needed skilled staff who could relieve them of medical responsibility, but they wanted to be involved in the care and in the decisions taken. They needed support, including relief, in order to meet their own needs and to be able to take care of their children. It was important that the child was treated with respect in order for the parent to trust the staff. An approach where staff view parents and children as a single unit, as recipients of care, would probably make the situation easier for these parents and children.