Support interventions to reduce psychological distress in families experiencing stillbirth in high income countries: A systematic review.

BACKGROUND: Previous research indicates disparities in the care of bereaved parents and siblings following a stillbirth in the family. The aim of this systematic review was to assess the effects of interventions aimed at reducing psychological distress among parents or siblings in high-income countries after experiencing a stillbirth. METHODS: The databases CINAHL, Medline, PsycInfo, Cochrane Library, and EMBASE were searched in August 2022. RESULTS: Four intervention studies from the United States (US), the United Kingdom (UK), Finland, and Australia, met the inclusion criteria. The interventions comprised a perinatal grief support team; a perinatal counselling service; a grief support program; and a support package including contacts with peer supporters and health care staff. No studies of interventions for siblings were found. The results could not be synthesised due to disparities in interventions and outcome measures. The risk of bias was assessed as high in all four studies and the certainty for all outcomes was rated as very low. CONCLUSION: More controlled trials with rigorous methods are needed to evaluate the effect of bereavement support interventions in parents and siblings after stillbirth. Future studies should include a core outcome set to make them more comparable. Most of the studies in this review were assessed to have an overall high risk of bias, mainly due to problems with missing outcome data; thus, future studies could specifically target this problem.

Care and support when a baby is stillborn: A systematic review and an interpretive meta-synthesis of qualitative studies in high-income countries.

INTRODUCTION: Approximately 2 million babies are stillborn annually worldwide, most in low- and middle-income countries. Present review studies of the parental and healthcare providers' experiences of stillbirth often include a variety of settings, which may skew the findings as the available resources can vary considerably. In high-income countries, the prevalence of stillbirth is low, and support programs are often initiated immediately when a baby with no signs of life is detected. There is limited knowledge about what matters to parents, siblings, and healthcare providers when a baby is stillborn in high-income countries. OBJECTIVES: This systematic review and interpretive meta-synthesis aim to identify important aspects of care and support for parents, siblings, and healthcare professionals in high-income countries from the diagnosis of stillbirth throughout the birth and postpartum period. METHODS: A systematic review and qualitative meta-synthesis were conducted to gain a deeper and broader understanding of the available knowledge about treatment and support when stillbirth occurred. Relevant papers were identified by systematically searching international electronic databases and citation tracking. The quality of the included studies was assessed, and the data was interpreted and synthesised using Gadamer's hermeneutics. The review protocol, including qualitative and quantitative study approaches, was registered on PROSPERO (CRD42022306655). RESULTS: Sixteen studies were identified and included in the qualitative meta-synthesis. Experiences of care and support were interpreted and identified as four fusions. First, Personification is of central importance and stresses the need to acknowledge the baby as a unique person. The parents became parents even though their baby was born dead: The staff should also be recognised as the individuals they are with their personal histories. Second, the personification is reinforced by a respectful attitude where the parents are confirmed in their grief; the baby is treated the same way a live baby would be. Healthcare professionals need enough time to process their experiences before caring for other families giving birth. Third, Existential issues about life and death become intensely tangible for everyone involved, and they often feel lonely and vulnerable. Healthcare professionals also reflect on the thin line between life and death and often question their performance, especially when lacking collegial and organisational support. Finally, the fusion Stigmatisation focused on how parents, siblings, and healthcare professionals experienced stigma expressed as a sense of loneliness, vulnerability, and being deviant and marginalised when a baby died before or during birth. GRADE CERQual ratings for the four fusions ranged from moderate to high confidence. CONCLUSIONS: The profound experiences synthesised in the fusions of this meta-synthesis showed the complex impacts the birth of a baby with no signs of life had on everyone involved. These fusions can be addressed and supported by applying person-centred care to all individuals involved. Hence, grief may be facilitated for parents and siblings, and healthcare professionals may be provided with good conditions in their professional practice. Furthermore, continuing education and support to healthcare professionals may facilitate them to provide compassionate care and support to affected parents and siblings. The fusions should also be considered when implementing national recommendations, guidelines, and clinical practice.

Exploring family functioning and - hardiness in families' experiencing adult intensive care - A cross-sectional study.

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 intensive-care 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.

Women's lived experiences of sex hormones and life-related to bariatric surgery: an interpretative qualitative study.

OBJECTIVES: The study aimed to explore the lived experiences of women with severe obesity before and after undergoing bariatric surgery with a special focus on possible effects of changed sex hormone levels. DESIGN: A qualitative interview study with transcribed text analysis based on Gadamer's hermeneutics. SETTING: Regional hospital and outpatient bariatric clinic in central Sweden. PARTICIPANTS: Ten women (age 23-38 years) having undergone Roux-en-Y gastric bypass surgery between 2016 and 2019 were interviewed. RESULTS: The transcribed interviews were analysed according to Gadamer's hermeneutics. Text horizons, interpreter horizons and fact horizons were derived and formed the fusions 'Recognition of unhealthy body weight', 'Dealing with other people's opinions and society's norms', 'Life has changed in a positive way' and 'Accepting inner self and bodily changes'. CONCLUSION: Women highlighted weight and body size in their responses. The study provided a deeper understanding of the situation of women living with obesity and pros and cons of having undergone bariatric surgery. Experiences of changes in sex hormones and fertility were discussed but not central to the informants. Participants emphasised the need to be prepared and properly supported in dealing with changes in life after bariatric surgery and subsequent weight loss.

Motivation and Life Circumstances Affecting Living Habits Prior to Gastrointestinal Cancer Surgery- An Interpretative Phenomenological Analysis.

The aim was to explore the patient's experiences to get insights into their living habits prior to gastrointestinal cancer surgery. An interpretative phenomenological analysis (IPA) approach was used. Six in-depth interviews with participants recruited from a hospital in southeast Sweden. The IPA analysis identified 3 themes: The influence of the cancer diagnosis on awareness and motivation, Life circumstances affecting living habits, and Activities bringing mental strength. The participants expressed their motivation level and circumstances in life. Various types of activities and support promoted physical and mental health. Motivation level and circumstances in life both influence living habits. Various kinds of activities and support promote patients' physical and mental health. Nurses need to investigate patients' experiences when developing person-centered support to achieve health-promoting behavior prior to cancer surgery.

Chronic obstructive pulmonary diseasés impact on the affected person and next of kin: A mixed methods study.

OBJECTIVES: Severe chronic obstructive pulmonary disease affects and changes the lives of both affected persons and next of kin. There is a need for support and a sense of coherence to manage the life situation and minimize the symptom and caregiver burden. The aim of this study was to diverge or converge views of symptom burden, caregiver burden, the need for support, and sense of coherence in persons with chronic obstructive pulmonary disease and their next of kin to gain a deeper and broader knowledge and understanding. METHODS: A mixed methods study with data from interviews and four validated questionnaires from persons affected by chronic obstructive pulmonary disease in GOLD stages III and IV and their next of kin. RESULTS: Questionnaires from 112 persons affected by chronic obstructive pulmonary disease, and 71 next of kin, together with 25 and 21 interviews, show that; there is a difference between estimated symptoms and caregiver burden and experiences expressed in their own words. There is also a defect regarding meaningfulness, comprehensibility, and manageability affecting daily life. Symptoms and caregiver burden, together with the sense of coherence, strengthen the need for support. DISCUSSION: The complexity of the life situation leads to a need for supportive interventions to strengthen internal and external resources.

The experience of caregiver burden when being next of kin to a person with severe chronic obstructive pulmonary disease: A qualitative study.

BACKGROUND: Chronic obstructive pulmonary disease (COPD) is an inflammatory and irreversible lung disease. For next of kin caregiver burden can be a consequence of the situation of being close to a person affected by a chronic disease and in need of help. When there is an imbalance between stressors and resources to cope with the situation, caregiver burden emerges. Knowledge is sparse about how the caregiver burden is experienced by the next of kin. Therefore, the aim of this study is to identify and describe the caregiver burden experienced by next of kin of persons with severe COPD. METHOD: Qualitative interviews with 21 next of kin were conducted. Thematic analysis was used in accordance with the six steps of Braun and Clarke. RESULTS: The next of kin experience caregiver burden as 1) changed roles in daily life 2) putting life on hold 3) to stand aside. The next of kin are in need of support to manage daily life. CONCLUSIONS: The caregiver burden affect the next of kin physically and emotionally. To prevent advance consequences, person-centered care can be used to support the next of kin in the situation.

Family functioning of families experiencing intensive care and the specific impact of the COVID-19 pandemic: A grounded theory study.

OBJECTIVES: In order to provide a deeper understanding of family functioning, the aim of this study was to identify, describe and conceptualise the family functioning of families where a formerly critically ill family member had stayed at the intensive care unit, with the impact of a pandemic. RESEARCH METHODOLOGY/DESIGN: The study has a grounded theory design including interviews with eight families. SETTING: Former adult intensive care patients cared for Covid-19 infection and their family. Eight patients and twelve family members from three different intensive care units. MAIN OUTCOME MEASURES: The results presented are grounded in data and identified in the core category "Existential issues" and the categories "Value considerateness; Anxiety and insecurity in life; Insight into the unpredictability of life." FINDINGS: The core category could be found in all data and its relationship and impact on the categories and each other. The core is a theoretical construction, whereas the family functioning of families where a formerly critically ill family member had stayed at the intensive care unit was identified, described, and conceptualised. Being able to talk repeatedly about existential issues and the anxiety and insecurity in life, with people that have similar experiences helps the patient and their family to consider and gain insight into the unpredictability of life, and thereby better cope with changes in life. CONCLUSION: There is awareness about the love that exists within the family. A willing to supporting each other in the family even if the critical illness made the family anxious and afraid. IMPLICATIONS FOR CLINICAL PRACTICE: Even if the pandemic Covid-19 led to restrictions inhibiting family focused nursing, it is important to confirm the family as a part of the caring of the ICU patient. The patients are not alone, their family are fighting together for the future.

Development of trauma team cognition can be explained by "split vision": A grounded theory study.

The aim of this study was to explore interaction of interprofessional hospital trauma teams. A theory about how team cognition is developed through a dynamical process was established using grounded theory methodology. Video recordings of in-real-life resuscitations performed in the emergency ward of a Scandinavian mid-size urban hospital were collected and eligible for inclusion using theoretical sampling. By analyzing interactions during seven trauma resuscitations, the theory that trauma teams perform patient assessment and resuscitation by alternating between two process modes, the two main categories "team positioning" and "sensitivity to the patient," was generated. The core category "working with split vision" explicates how the teams interplay between the two modes to coordinate team focus with an emergent mental model of the specific situation. Split vision ensures that deeper aspects of the team, such as culture, knowledge, empathy, and patient needs are absorbed to continuously adapt team positioning and create precision in care for the specific patient.

Creating theory: Encouragement for using creativity and deduction in qualitative nursing research.

Texts about theory in nursing often refer to theory construction by using inductive methods in a rigid way. In this paper, it is instead argued that theories are created, which is in line with most philosophers of science. Theory creation is regarded as a creative process that does not follow a specific method or logic. As in any creative endeavour, the inspiration for theory creation can come from many sources, including previous research and existing theory. The main idea put forward is that deductive qualitative research approaches should play a key role in theory creation. Furthermore, there is a need to differentiate between theory creation and theory justification. A model that emphasizes the creative aspects of theory creation and theory justification using qualitative approaches is presented. The model suggests that knowledge development is a deductive trial-and-error process where theory creation is followed by testing. Scientific theory creation and justification are presented as an iterative process that is deductive in that a testable hypothesis is derived from the theory. If the hypothesis is falsified, then the theory needs modification or might be altogether wrong. Several factors can block the creative process, both in theory development and in finding ways to test a theory in the justification phase. Some of these blockers are the idea of 'building blocks' and the inductive view of science often brought forward in nursing. Other blockers include striving for consensus and adherence to existing nursing philosophies and existing theories. Research and knowledge development are creative processes, and following predefined methods is not enough to ensure scientific rigour in qualitative nursing research.

Dental clinicians recognizing signs of dental anxiety: a grounded theory study.

INTRODUCTION AND OBJECTIVE: There is a knowledge gap in how dental clinicians recognise dental anxiety. The aim of this study was to identify, describe and generate concepts regarding this process. MATERIALS AND METHODS: Eleven semi-structured interviews were conducted with dental clinicians from the public dental service of Östergötland, Sweden. Purposive and theoretical sampling was used. Theoretical saturation was reached after eight interviews. The interviews were audio-recorded and transcribed verbatim. Classical grounded theory was used to inductively analyse data by constant comparative analysis. RESULTS: The core category was identified as; 'the clinical eye', clinicians noticing behaviours possibly due to dental anxiety based on their knowledge, experiences, or intuition. The core category comprises the five categories: Sympathetic activation, Patient-reported anxiety, Controlling behaviours, Avoidance and Accomplishment. Initially there is usually uncertainty about whether a behaviour is due to dental anxiety or part of a patient's normal behaviour. To gain additional certainty, clinicians need to recognise a stressor as something in the dental setting by observing a change in behaviour, for better or for worse, in the anticipation, presence or removal of the stressor. CONCLUSIONS: Clinicians identify patients as dentally anxious if their behaviour changes with exposure to a stressor.

Incidence of self-reported pelvic pain and risk factors for pain 1 year after benign hysterectomy: A register study from the Swedish National Quality Registry for Gynecological Surgery.

INTRODUCTION: The primary aim of this study was to determine the incidence of patient-reported pain 1 year after hysterectomy for benign gynecological conditions in relation to occurrence of preoperative pain. The secondary aim was to analyze clinical risk factors for pain 1 year after the hysterectomy in women with and without preoperatively reported pelvic/lower abdominal pain. MATERIAL AND METHODS: This was a historical cohort study using data from the Swedish National Quality Registry for Gynecological Surgery on 16 694 benign hysterectomies. Data were analyzed using multivariable logistic regression models. RESULTS: One year after surgery, 22.4% of women with preoperative pain reported pelvic pain and 7.8% reported de novo pelvic pain. For those with preoperative pain younger age (adjusted odds ratio [aOR] 1.75, 95% confidence interval [CI] 1.38-2.23 and aOR 1.21, 95% CI 1.10-1.34 for women aged <35 and 35-44 years, respectively), not being gainfully employed (aOR 1.43, 95% CI 1.26-1.63), pelvic pain as the main symptom leading to hysterectomy (aOR 1.51, 95% CI 1.19-1.90), endometriosis (aOR 1.18, 95% CI 1.06-1.31), and laparoscopic hysterectomy (aOR 1.30, 95% CI 1.07-1.58), were clinically relevant independent risk factors for pelvic/lower abdominal pain 1 year after surgery, as were postoperative complications within 8 weeks after discharge. Meanwhile, clinically relevant independent risk factors for reporting de novo pain 1 year after surgery were younger age (aOR 2.05, 95% CI 1.08-3.86 and aOR 1.29, 95% CI 1.04-1.60 for women aged <35 and 35-44 years, respectively), and postoperative complications within 8 weeks after discharge. CONCLUSIONS: The incidence of pelvic pain and de novo pain 1 year after hysterectomy was relatively high. Women with and without reported preoperative pelvic/lower abdominal pain represented clinically different populations. The risk factors for pelvic pain seemed to differ in these two populations. The differences in risk factors could be taken into consideration in the preoperative counseling and in the decision-making concerning method of hysterectomy, provided that large well-designed studies confirm these risk factors.

Postmenopausal women's experiences of a resistance training intervention against vasomotor symptoms: a qualitative study.

INTRODUCTION: Resistance training may be an effective intervention to improve menopausal symptoms and increase women's quality of life. However, most postmenopausal women do not perform regular resistance training. The purpose of this study was to explore postmenopausal women's experiences of participation in a resistance-training intervention to find barriers and motivators for the training. METHODS: Fifteen postmenopausal women with low physical activity, who participated in a randomized controlled trial evaluating the effect of a resistance-training program on vasomotor symptoms and health-related outcomes, were consecutively recruited to this qualitative study. After completion of the 15-week resistance-training program, they took part in individual semi-structured interviews, followed by a telephone interview 1 year later. All interviews were transcribed verbatim and thematic analysis was used to analyse the data. RESULTS: The analysis generated three themes that were involved at different time points. These were: "Trigger-Hopes of symptom relief", "An evolving motivation as a driving force for change" and "Finding new triggers". Accountability, and continuous professional and emotional support, were factors that fueled the women's motivation to perform regular resistance training during the study. Resistance training improved general well-being and most women experienced improvement in vasomotor symptoms. The women's motivation changed from being driven by a wish to improve bothersome symptoms, into a wish to achieve feelings of well-being and enjoyment. The change was seen regardless of effects of the intervention on vasomotor symptoms. CONCLUSION: This first qualitative evaluation of physical exercise as an intervention to treat vasomotor symptoms in postmenopausal women, found that the symptoms acted as a motivational trigger to initiate resistance training in low-active women. The motivation to exercise changed during the intervention from a wish to ameliorate symptoms into something the women did for enjoyment and well-being in general. This change in motivating factors may have contributed to a behavior change since all participants had increased their physical activity after 1 year regardless of effects on VMS. Trial registration The trial was preregistered at ClinicalTrials.gov; www. CLINICALTRIALS: gov , ID: NCT01987778 , date of first registration: 19/11/2013.

Experiences of Symptoms and Impact on Daily Life and Health in Hepatocellular Carcinoma Patients: A Meta-synthesis of Qualitative Research.

BACKGROUND: The incidence of hepatocellular cancer (HCC) has continually increased. To achieve optimal supportive cancer care for HCC patients, it is important to consider patients' experiences and preferences. OBJECTIVE: This meta-synthesis aims to critically interpret how patients with HCC experience symptoms and the impact of the disease on daily life and health. METHODS: Searches were performed in the following bibliographic databases: PubMed, CINAHL, Web of Science, Scopus, PsycINFO, and Cochrane Library. In addition, searches were performed using Open Gray to identify relevant studies in the gray literature. The search was limited to studies published in English from 2009 to 2019. Five studies (124 participants) were identified, appraised, and ultimately interpreted and synthesized. RESULTS: Receiving an HCC diagnosis was overwhelming and affected the patients' entire lives. Three themes were identified based on the meta-synthesis: (1) disrupted life, (2) living with uncertainty, and (3) a changed body. Patients with HCC experience disrupted lives because of the cancer's effect on health and multidimensional symptoms. CONCLUSION: Available research on the experiences of HCC patients is limited. This meta-synthesis of available studies shows that being given a diagnosis of HCC is an overwhelming event. Our study findings show that an HCC diagnosis affected the individual's entire life. IMPLICATIONS FOR PRACTICE: It is important to identify the patients' physical, psychological, social, and existential needs during the investigation of their condition, during any curative treatment, and at the palliative stage of the disease.

Family health conversations versus support group conversations when a family member has been critically ill: A mixed methods study.

Introduction: When a family member has been critically ill and cared for at an intensive care unit the individual family member as well as the family system are affected and in need of support. The aim of this study was to compare and contrast the responses from 2 different types of follow-up interventions for families of critically ill persons, focusing on individual hopes, health-related quality of life, family functioning and ability to cope with challenges. Method: Adult family members from 3 hospitals attended 1 of 2 interventions 2 months after intensive care. The family health conversation included the family. The support group conversation included just family members and not the patient who had experienced intensive care. Data were collected via self-reported questionnaires and follow-up interviews with family members. Quantitative and qualitative data were first analyzed separately, and the results were then integrated through mixed methods analysis. Results: A total of 38 family members took part in the interventions. Family members in the 2 intervention groups talked about how they had more hope for the future, and about how talking within the family and the group had helped them justify their feelings, which empowered them in the transition toward a healthier quality of life. Comparisons of the interventions show a higher significance of family function and hope in the family health conversation. Discussion: The article illustrates a disparity between how family members function and the needs they have for follow-up. We discuss what kind of follow-up these persons need. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Women's experiences of an enhanced recovery after surgery program: A qualitative study.

The Enhanced Recovery After Surgery Program aims to transfer much of the responsibility for postoperative recovery to the patient and their next of kin. The aim of the study was to identify and describe women's experiences of care within this program in relation to gynecological abdominal surgery. A qualitative approach was used where 16 women were interviewed within 1 to 2 weeks of their surgery. A thematic analysis focusing on interpretation of latent content was performed. Three themes were identified: Empowerment, Self-care, and Participation. Empowerment represents aspects of the recovery program that strengthen self-efficacy, such as being seen, being given information, and continuity of care. Self-care identifies the practical implications of empowerment, namely internal resources, knowledge, and external resources. These two themes were identified as separate but interlinked through the theme Participation. Preoperative information, postoperative encouragement, and follow-up empowered the women in their recovery. Early discharge from hospital was beneficial for recovery if accompanied by social support and sufficient self-care ability. A desire for a person-centered approach in the preoperative meeting and in postoperative care was identified.

Transmasculine Persons' Experiences of Encounters with Health Care Professionals Within Reproductive, Perinatal, and Sexual Health in Sweden: A Qualitative Interview Study.

Purpose: Transmasculine persons may experience stigma, which increases the risk of psychological distress. They may need reproductive, perinatal, and sexual health care; however, qualitative studies addressing transgender individuals' experiences are scarce. This study aimed at interpreting and describing the experiences of transmasculine persons in encounters with health care professionals (HCPs) within reproductive, perinatal, and sexual health care. Methods: Nine qualitative semi-structured online interviews were conducted via email with transmasculine persons, and data were analyzed by using Braun and Clarke's thematic analysis. Results: Two themes were identified. The first theme is normalization and confirmation of the gender identity. This theme comprises the knowledge and experience that these transmasculine persons are facing. The verbal approach from the HCPs was important as well as could be addressed with a non-binary approach. The second theme is Respect in an especially exposed situation. This theme shows the great importance of being involved in the care and at the same time being met with openness and empathy. There must be good prospects of being able to preserve dignity. Conclusion: Transmasculine persons are in an exposed position in reproductive, perinatal, and sexual health care. The encounters in health care could be negatively affected if HCPs show inadequate knowledge or express gender stereotypical attitudes. A good encounter is characterized by respect, preserved integrity, involvement in the care, and an open attitude toward gender variations.

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

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.

Self-Management Education for Persons with Parkinson's Disease and Their Care Partners: A Quasi-Experimental Case-Control Study in Clinical Practice.

BACKGROUND: Parkinson's disease is a neurodegenerative condition with both physical and mental consequences that affect many aspects of everyday life. Persons with Parkinson's disease and their care partners want guidance from healthcare services in order to develop skills to adjust to life with a long-term condition. The Swedish National Parkinson School is a dyadic self-management programme to support both persons with Parkinson's disease and care partners. OBJECTIVE: To assess the outcomes of the Swedish National Parkinson School as reported by participants. DESIGN: A quasi-experimental case-control study in clinical care using self-reported questionnaires. Participants. Swedish National Parkinson School was offered by health care professionals working in clinical care. Participants in the programme were also asked to participate in the study. A matched control group was recruited for a comparison of findings. In total, 92 persons with Parkinson's disease and 55 care partners were included. Settings. Five Swedish geriatric and neurologic outpatient clinics. METHOD: Data were collected during 2015-2017, before and after participation in the National Parkinson School or before and after seven weeks of standard care. Outcomes were assessed using generic and Parkinson's specific questionnaires. Descriptive statistics were used to describe baseline characteristics. Mann-Whitney U and Chi2 tests were used to test for between-group differences and within-group differences were tested by the Wilcoxon signed-ranks test. RESULTS: Improvements regarding health status, constructive attitudes and approaches, and skill and technique acquisition were found after the intervention among persons with Parkinson's disease. No changes were found among care partners. CONCLUSION: The findings indicate that the Swedish National Parkinson School may improve health status and self-management among persons with Parkinson's disease, but further studies are needed to better understand the effects of the programme.

Effects of self-management education for persons with Parkinson's disease and their care partners: A qualitative observational study in clinical care.

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.