Publikationer från Sophiahemmets Högskola
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Manual therapists during the COVID-19 pandemic in Sweden : The CAMP Cohort Study
No full textBackground: The COVID-19 pandemic posed unprecedented challenges to healthcare systems worldwide, with most research and media focus placed on acute care settings. However, healthcare professionals working outside hospital environments, such as manual therapists, also faced challenges amidst the pandemic. Considering manual therapists work in close contact with their patients during treatment, the pandemic potentially posed work environmental, and infection control challenges. Further, the pandemic posed potential threats to the therapists’ individual health directly through infection risk, and indirectly through occupational stress, disruptions in routines and social activities, and the stressors related to the pandemic at large. Most manual therapists in Sweden are private practitioners in the form owner operated businesses, working outside of the conventional healthcare – and may suffer economic hardship due to patient cancellations considering public health recommendations of social distancing. Overall aim and methods: This thesis investigated the impact of the COVID-19 pandemic on manual therapists in Sweden, including chiropractors and naprapaths, in terms of their health, lifestyle, work environment, and business. The research is based on the CAMP cohort, a nationwide study of 816 manual therapists (46% women, mean age 44 SD 11) who were followed through four web-based surveys conducted between November 2020 and November 2021. Five sub studies form the basis of this thesis. Study I-V: In study I, the aim was to describe the prevalence of psychological distress, and musculoskeletal pain, as well as factors associated with these health problems. The study was of crosssectional design, and used data from the baseline survey collected in November 2020, during the second wave of the COVID-19 pandemic in Sweden. The sample was based on 762 participants with valid data on psychological distress, and musculoskeletal pain. The vast majority had no/normal levels of psychological distress symptoms. Nonetheless, musculoskeletal pain problems were highly prevalent in the sample. Pain was most commonly reported in the neck, low back, upper back, and shoulders. Activity-limiting pain were most prevalent in the low back, and wrists/hands. Business owners with a reduced revenue, those residing in a municipality with a high spread of infection, and those reporting clinical disruptions due to the pandemic had higher levels psychological distress. In study II, the aim was to assess the one-year trajectories of psychological distress, and of spinal pain intensity, and whether participant characteristics were associated with trajectory membership. The study was of cohort design, using psychological distress, and spinal pain intensity data from all four time-points over the one-year period. The study sample was 775 for psychological distress trajectories, and 779 for spinal pain intensity trajectories. The vast majority of participants had no or minimal symptoms of psychological distress, stable throughout the study. Whilst most of the participants also reported no/low spinal pain intensity during the one year period, a quarter reported fluctuating or moderate-stable pain intensity levels. Those reporting with impaired sleep, inadequate physical activity, and maladaptive coping had a higher probability of worse spinal pain trajectories. In study III, the aim was to assess changes in health, lifestyle, and psychological factors, and potential differences with regards to age, sex, and business constellation. The study was of mixed methods design, using data from the baseline, 6-month follow-up, and 12-month follow-up surveys. Quantitative data on physical activity, sedentary time, impaired sleep, tobacco use, alcohol consumption, coping strategies, COVID-19-related worries, as well qualitative data in the form of free-text responses were analyzed over time. The study sample consisted of all 816 manual therapists in the CAMP cohort. The therapists maintained good lifestyle habits and other health aspects, with little change over the one-year period. The participants were conscientious regarding different health promotion activities, including exercise, nutrition, sleep, stress management and social activities. In study IV, the aim was to examine the clinical activity, and business impact due to disruptions caused by the pandemic, in manual therapy business owners. The study was of cohort design and used data from all four time-points in the CAMP cohort. The study sample consisted of 443 clinically active manual therapists who reported being business owners. Clinical activity, business disruptions, and turnover was measured over time. Half of the participants reported a decreased business turnover, disruptions due to the pandemic was common, and associated with reduced clinical activity. Those with decreased turnover early tended to remain with decreased turnover over time. Also, receiving governmental economic support was also associated with reduced turnover. The therapists reported adapting their practices to cutting costs, and finding alternative revenue sources. In study V, the aim was to describe the work environment and practices of manual therapists during a year of the pandemic. The study was of mixed methods design, using quantitative data on various work environmental aspects including infection control competency, protective equipment availability, ability to comply with official recommendations, and perceived ability to provide adequate care. Qualitative data included answers to free-text questions related to their work situation during the pandemic. All 816 participants of the CAMP cohort formed the study sample. Infection control competency, protective equipment availability, and ability to provide adequate care during the pandemic improved over time. The therapists adapted their practices and adjusted their routines to comply to recommendations. Further, many experienced a decrease in patient numbers, the inability to care for vulnerable patient groups, and less personalized care. Overall conclusions: Manual therapists in Sweden maintained good mental health with low symptoms of psychological distress throughout the pandemic. However, a considerable proportion suffered from musculoskeletal problems, primarily back pain – associated with lifestyle and psychological factors. The therapists were conscientious regarding health promotion and maintained good lifestyle habits with minimal changes during the pandemic. The pandemic disrupted therapists’ businesses in terms of clinical activity and economic turnover. However, they showed resilience amidst the challenges imposed by adapting their practices, including cost cutting, and finding alternative revenue sources for their business to persist. Despite the work environment challenges encountered by manual therapists, including infection control competency, protective equipment availability, and changes in clinical routines, they reported being able to deliver adequate patient care by adapting treatment given to conform to official recommendations
The role of welfare technology for persons with dementia living at home : Family caregivers experience - A literature review
No full textBakgrund: Kognitiva sjukdomar, påverkar många individer och deras anhöriga globalt. Med en ökande åldrande befolkning ökar även behovet av stöd och vård. I Sverige lever cirka 150 000 personer med en kognitiv sjukdom, och anhörigas insatser är avgörande för att möta dessa individers vård- och omsorgsbehov. För att underlätta anhörigas situation har välfärdsteknik lyfts fram som ett möjligt stöd med potential att förbättra livskvaliteten för både personer med kognitiv sjukdom och deras närstående. Syftet med studien var att belysa erfarenheter om välfärdsteknik av anhöriga som ger stöd i vardagen till personer med kognitiv sjukdom i eget boende. Metod: En litteraturöversikt med systematisk metod genomfördes baserat på kvalitativa och kvantitativa studier. Datainsamlingen skedde via databaserna PubMed och CINAHL, och 16 vetenskapliga artiklar inkluderades. Resultaten analyserades med hjälp av integrerad analys för att identifiera kategorier och underkategorier. I Resultaten framkom tre kategorier: Erfarenheter av teknologiska lösningar, Erfarenheter av teknologins påverkan i vardagen, Erfarenheter om förutsättningar och behov för användning av teknik samt åtta underkategorier: Välfärdsteknik som används, Applicering av välfärdsteknik, Teknikens positiva effekter, Utmaningar och hinder, Emotionell påverkan, Beslutsfattande, hantering och ansvar, Teknikens användarvänlighet och Support och utbildning. Slutsats: Välfärdsteknik har visat ha positiva effekter och möjligheten att strukturera och underlätta vardagen för både personer med kognitiv sjukdom och deras anhöriga. För att maximera nyttan krävs individanpassade lösningar, förbättrad teknisk support och ökade utbildningsinsatser.Background: Cognitive disorders affect many individuals and their families worldwide. With an aging population, the need for support and care is increasing. In Sweden, approximately 150,000 people live with a cognitive disorder, and the efforts of family caregivers are crucial in meeting these individuals' care and support needs. Welfare technology has been highlighted as a potential support tool with the ability to improve the quality of life for both individuals with cognitive disorders and their relatives. Aim: The aim of this study was to explore the experiences of welfare technology among family caregivers who provide daily support to individuals with cognitive disorders living in their own homes. Method: A literature review with a systematic approach was conducted, based on qualitative and quantitative studies. Data were collected from the PubMed and CINAHL databases, and 16 scientific articles were included. The results were analyzed using an integrated analysis to identify categories and subcategories. Results: The results revealed three categories: Experiences of technological solutions, Experiences of the impact of technology in daily life, and Experiences of conditions and needs for the use of technology, as well as eight subcategories: Welfare technology in use, Application of welfare technology, Positive effects of technology, Challenges and barriers, Emotional impact, Decision-making, management and responsibility, Usability of technology, and Support and education. Conclusion: Welfare technology has shown positive effects and the potential to structure and facilitate daily life for both individuals with cognitive disorders and their family caregivers. To maximize the benefits, individual adaptation, improved technical support, and increased educational efforts are required
Family caregivers experience of communication of palliative care in connection with incurable cancer disease : A litterture review
No full textBakgrund: Att föra samtal om palliativ vård har ett stort syfte genom att både förbereda den drabbade och dennes närstående inför vad som komma skall. Personalen inom den onkologiska vården har detta som ansvar när behandling övergår från kurativ till palliativ behandling. Närstående är den person som befinner sig nära patienten och som ofta tar på sig ett uppdrag att stödja patienten i vardagen och hjälpa till att bibehålla patientens välbefinnande. Beslut om avslutning av kurativ behandling och övergång till palliativ vård innebär en stor förändring i närståendes förhållningssätt till patientens tillstånd, sjukdomen, samt vården och kan orsaka de närstående lidande. Kommunikation mellan personal inom den onkologiska vården och de närstående bör omfatta riklig och tillräcklig information om cancersjukdomen, prognos, förväntningar och risker. Hur den onkologiska vården kommunicerar med närstående och vilken information som ges har en stor betydelse i hur närstående upplever patientens övergång från onkologisk till palliativ vård. Syfte: Att belysa hur närstående till patienter med diagnostiserad obotlig cancersjukdom upplever kommunikation med personal inom den onkologiska vården angående palliativ vård. Metod: En litteraturöversikt. Kvalitativ design med induktiv ansats. Resultat: Integrerad tematisk analys valdes för att sammanställa studiens resultat. Resultat redovisas i två kategorier och fem underkategorier. De två kategorierna är kommunikation mellan personal inom den onkologiska vården och de närstående och tillförsel av information från personal inom den onkologiska vården till närstående. Närstående ville bland annat att personal inom den onkologiska vården visade ett respektfullt förhållningssätt, engagemang, lyhördhet och empati. Närstående upplevde trygghet i samband med att de fått tillräcklig information men i vissa studier tog inte de närstående till sig den information de fått och kunde därmed inte heller acceptera den sjukes tillstånd. Resultaten visade att närstående ofta upplever bristande information och kommunikation från vårdpersonalen, vilket kan leda till ökat lidande. Kliniska implikationer inkluderar behovet av kontinuerlig utbildning för vårdpersonal och en förbättrad förståelse för närståendes behov. Slutsats: Studien syftar till att undersöka kommunikationen kring palliativ vård mellan personal inom den onkologiska vården och närstående till patienter i slutskedet av cancer. Metodologiska utmaningar, inklusive begränsningar i databasernas sökfunktioner och skillnader i åldersgränser, identifierades under studiens genomförande. Förslag till fortsatt forskning inkluderar undersökning av metoder för att förbättra kommunikationen och utvärdering av hur detta påverkar närståendes välbefinnande.Background: Palliative care is introduced to cancer patients where the disease progresses and the prognosis for the patient's recovery is poor. Indication for switching from curative oncological treatment to symptom-relieving palliative care is the deterioration of the patient's condition which does not make it possible for the curative treatments. A family caregiver is a person who is close to the patient and who often supports them in everyday life helping maintain well-being. The decision to end curative treatment and transition to palliative care means a major change in the approach of relatives and their views of a patient's condition, the disease and need of care, as well as it causes family caregivers’ suffering. Communication between oncology care providers and relatives should include correct and sufficient information about the disease, prognosis, expectations and risks. How oncology care providers communicate with family caregivers and what information is given has a great significance in how family caregivers experience a patient's transition from oncology to palliative care. Aim: To illuminate how relatives of patients diagnosed with incurable cancer experience communication about palliative care with the oncology care provider. Method: Literature review. Qualitative design with inductive approach. Results: Integrated thematic analysis was chosen to compile the study's findings. Results are reported in two categories and five subcategories. The two categories are communication between the oncology care providers and the family caregivers and supply of information from the oncology care provider to the family caregivers. The five subcategories are the oncology care providers’ choice of words and non-verbal communication, the oncology care providers’ attitudes in contact with family caregivers, importance of sufficient information given by oncology care providers to family caregivers, family caregivers’ unsatisfied information needs and no information about access to palliative care between the oncology care providers and family caregivers. Conclusion: The research aims to investigate the communication about palliative care between healthcare professionals and relatives of patients in the final stages of cancer. Methodological challenges, including limitations in the search capabilities of the databases and differences in age limits, were identified during the conduct of the study. The results showed that relatives often experience a lack of information and communication from the healthcare staff, which can lead to increased suffering. Clinical implications include the need for continuous education for healthcare professionals and an improved understanding of the needs of loved ones. Suggestions for continued research include investigating methods to improve communication and evaluating how this affects the well-being of loved ones
Sleep problems in adults with neurodevelopmental disorders: the patient perspective : A non-systematic literature review
No full textBakgrund Sömn utgör en grundläggande förutsättning för hälsa, återhämtning och livskvalitet. Hos vuxna med neuropsykiatriska funktionsnedsättningar [NPF], såsom Attention Deficit Hyperactive Disorder [ADHD] och autismspektrumtillstånd [ASD], är sömnbesvär vanligt förekommande och kan förstärka redan befintliga svårigheter. Bristande sömn har visats påverka vardagsliv, känslomässig hälsa och dygnsrytm samt bidra till ökad samsjuklighet. Trots detta har tidigare forskning huvudsakligen fokuserat på barn och ungdomar, vilket gör vuxnas upplevelser viktiga att belysa för att utveckla omvårdnad och individanpassade vårdinsatser. Syfte Syftet var att beskriva hur vuxna med ADHD och/eller ASD upplever sömnbesvär Metod En icke-systematisk litteraturöversikt genomfördes baserad på tolv vetenskapliga originalartiklar av kvantitativ design, publicerade i peer-reviewed tidskrifter. Sökningar utfördes i databaserna PubMed och CINAHL. Artiklarna kvalitetsgranskades med Sophiahemmet Högskolas bedömningsunderlag och analyserades för att identifiera återkommande kategorier och teman. Resultat Analysen, som baserades på studier publicerade mellan 2015 och 2025, visade tre övergripande kategorier. Biologisk sårbarhet innefattade dygnsrytmförskjutning, sensorisk känslighet och stressrelaterad reaktivitet. Psykologiska och beteendemässiga följder omfattade oro, nedsatt kognitiv förmåga och begränsad effekt av generella sömnhygienråd. Kontextuella hinder visade sig i brist på individanpassade insatser och vårdmiljöer som inte tillgodosåg NPF-relaterade behov. Patienterna beskrev att individanpassade strategier som strukturstöd, sensoriska anpassningar, hjälpmedel såsom tyngdtäcken samt anpassad kognitiv beteendeterapi för insomni gav förbättrad sömn, minskad oro och en stärkt känsla av kontroll och delaktighet. Slutsats Sömnbesvär hos vuxna med NPF framträdde som ett komplext fenomen med konsekvenser för både hälsa och livskvalitet. Resultaten tydliggjorde behovet av att sjuksköterskor identifierar sömnbesvär tidigt och erbjuder individanpassade åtgärder som stärker patientens komfort och egenmakt. En sådan omvårdnad kan inte bara lindra lidande och främja hälsa på individnivå, utan även bidra till minskad sjukfrånvaro, ökad arbetsförmåga och ett mer hållbart resursutnyttjande på samhällsnivå.Background Sleep is a fundamental prerequisite for health, recovery, and quality of life. Among adults with neurodevelopmental disorders (ND), such as attention-deficit/hyperactivity disorder (ADHD) and autism spectrum disorder (ASD), sleep problems are highly prevalent and may exacerbate existing difficulties. Insufficient sleep has been shown to affect daily life, emotional well-being, and circadian rhythm, as well as contribute to increased comorbidity. Despite this, previous research has mainly focused on children and adolescents, making it important to highlight the experiences of adults in order to develop nursing care and tailored interventions. Aim The aim was to describe how adults with ADHD and/or ASD experience sleep difficulties. Method A non-systematic literature review was conducted based on twelve peer-reviewed original articles of quantitative design. Searches were carried out in the databases PubMed and CINAHL. All articles were quality-assessed using Sophiahemmet University’s appraisal tool and analyzed to identify recurring patterns and themes. Results The analysis, based on studies published between 2015 och 2025, revealed three overarching patterns. Biological vulnerability included circadian rhythm delay, sensory sensitivity, and stress-related sleep reactivity. Psychological and behavioral consequences encompassed anxiety, impaired cognitive functioning, and limited effects of general sleep hygiene advice. Contextual barriers were identified in the lack of individualized interventions and healthcare environments that failed to accommodate ND-related needs. Patients reported that individualized strategies such as structured support, sensory adaptations, weighted blankets, and adapted cognitive behavioral therapy for insomnia led to improved sleep, reduced anxiety, and an enhanced sense of control and participation. Conclusions Sleep problems among adults with ND emerged as a complex phenomenon with wideranging consequences for health and quality of life. The findings highlighted the importance of nurses identifying sleep problems early and providing individualized interventions that promote comfort and empowerment. Such nursing care could not only alleviate suffering and promote health on an individual level, but also reduce sick leave, increase work ability, and contribute to more sustainable use of healthcare resources on a societal level
Association between eccentric and isometric shoulder rotation strength, shoulder range of motion and injury incidence in the shoulder in adolescent competitive tennis players : The SMASH cohort study
No full textBACKGROUND: For competitive adolescent athletes, injury avoidance is a challenge, and causes of injury are complex and multifactorial. Despite an incidence of 8.2 shoulder injuries per 1,000 hours of tennis played, few studies have investigated the association between shoulder strength, range of motion (ROM), and injury. HYPOTHESIS: Eccentric and isometric shoulder muscle strength and/or shoulder ROM are associated with new shoulder complaints and/or injuries. STUDY DESIGN: Cohort study. LEVEL OF EVIDENCE: Level 3. METHODS: At baseline 301 adolescent competitive tennis players aged 13 to 19 years completed a questionnaire, were assessed with a shoulder protocol for strength and ROM and followed weekly (for shoulder complaint/injury) for 52 consecutive weeks. Outcomes were a first incidence of a tennis-related shoulder complaint or injury in the dominant arm, defined as a sum score of ≥20 or ≥40, respectively, on the Oslo Overuse Injury Questionnaire. Two cohorts were created for Cox regression analyses, adjusted for age, sex, and playing level: (1) shoulder complaints (n = 204), and (2) shoulder injuries (n = 252). RESULTS: The most definitive adjusted associations were a hazard rate ratio (HRR) of 1.3 (95% CI 1.0-1.8) for a shoulder complaint in eccentric external rotation (eccER) strength, and a HRR for shoulder injuries of 1.4 (95% CI 1.0-1.9) in isometric internal rotation (IIR) strength in the 90-90 position, and 1.5 (95% CI 1.1-2.0) in eccER normalized to body mass. CONCLUSION: Higher values of eccER shoulder strength, IIR strength at the 90-90 position, and eccER shoulder strength normalized to body mass, were associated with shoulder complaints/injuries in adolescent competitive tennis players. CLINICAL RELEVANCE: Incorporating a training program that takes volume and intensity into account in the daily oncourt sessions, to build resilience through a well-planned, long-term training and competition plan to minimize shoulder injury risk may be of importance
Exploring physical activity patterns in adolescents with hypermobility spectrum disorder or hypermobile Ehlers-Danlos Syndrome
No full textBACKGROUND: Pain and fatigue are cardinal symptoms in adolescents with Hypermobility Spectrum Disorder (HSD) and Hypermobile Ehlers-Danlos Syndrome (hEDS). Adolescents with HSD/hEDS are assumed to be less physically active as compared to healthy peers, possibly contributing to poorer health, but objectively measured data are lacking. The primary study aim was to investigate physical activity patterns (daytime and nighttime movement behavior) using accelerometers in adolescents with HSD/hEDS versus a control group. The secondary aim was investigation of any association between fatigue and movement behavior, acknowledging pain catastrophizing as a confounder. METHODS: Thirty-seven adolescents with HSD/hEDS and 45 healthy adolescents (aged 13-17 years) participated. Physical activity was measured with Axivity AX3 triaxial accelerometer and an activity-sleep diary was used for assessing time in bed. Fatigue was assessed with the Pediatric Quality of Life Inventory - Multidimensional Fatigue Scale and pain catastrophizing with the Pain Catastrophizing Scale for children. RESULTS: Adolescents with HSD/hEDS spent significantly more time in sedentary behavior (SED), less time in moderate-to-vigorous physical activity (MVPA) and exhibited significantly more sleep movement during night compared to the control group. An association between fatigue and SED, MVPA daytime or sleep movement in adolescents with HSD/hEDS, with pain catastrophizing as confounder, could not be confirmed. CONCLUSION: According to this study, adolescents with HSD/hEDS exhibited physical activity behaviors at levels that are associated to poorer health compared to healthy peers. Measures need to be taken to design health promoting programs for these adolescents, including physical activity and sleep health, using a biopsychosocial approach that considers physical, psychological, and social factors. CLINICAL TRIAL REGISTRATION: linicalTrials.gov PRS: Protocol Section NCT05633225
Process evaluation of a randomized controlled trial with a mobile health intervention for children with obesity
No full textOBJECTIVES: To explore barriers for recruitment, attrition, and mHealth usage in a Swedish randomized controlled trial (RCT) including a mobile health (mHealth) intervention for children 5 to 12 years (n = 79) in obesity treatment. METHODS: A retrospective process evaluation was conducted using Normalization Process Theory (NPT). To answer the study objectives, data on staff- and parental mHealth experience and usage, staff working time, recruitment, and reasons for attrition were evaluated in relation to the NPT constructs. RESULTS: Recruitment process was complex and trial enrollment during the summer decreased staff- and participant-engagement. Attrition was influenced by technical issues, lack of motivation, and disliking the mHealth intervention. The major barrier for mHealth usage was technical problems. Staff struggled understanding core intervention components and found the intervention time consuming. CONCLUSION: Based on our findings we suggest future enablers for sufficient recruitment, retention, and increased mHealth usage of value for conducting pediatric obesity trials
The challenge on the side : A litterature review of parents experiences of living with a child or young adult diagnosed with anorexia nervosa
No full textBakgrund Anorexia nervosa är en av de allvarligare ätstörningarna, drabbar ofta unga och innebär stora påfrestningar för föräldrar. Trots att vårdpersonal möter dessa individer och föräldrar är kunskapen om sjukdomens allvar och föräldrars upplevelser begränsad, vilket kan påverka bemötandet negativt. Genom att beskriva hur föräldrar upplever situationen kan förståelsen hos vårdpersonal öka, vilket därmed kan bidra till ett mer förstående bemötande och förbättrade stödinsatser. Syfte Syftet med denna litteraturöversikt var att beskriva föräldrars upplevelser av att leva med ett barn eller ung vuxen diagnostiserad med anorexia nervosa. Metod Denna icke-systematiska litteraturöversikt baserades på 11 vetenskapliga artiklar med både kvalitativ och kvantitativ ansats. Artiklarna identifierades genom en strukturerad sökstrategi i databaserna CINAHL och PubMed, med tidsavgränsning till åren 2015–2025. Artiklarna analyserades genom en integrerad dataanalys där texterna granskades, kategoriserades och sammanställdes för att ge en översikt av studiernas gemensamma fynd. Resultat Resultatet presenterades i två huvudkategorier: Föräldrars emotionella och relationsmässiga påfrestningar vid anorexia nervosa och Föräldrars hantering av vardagen och vården – en förändrad livssituation. Resultatet visade att föräldrar upplever stark emotionell belastning när ett barn insjuknar i AN, där skuld var en framträdande känsla. Bristande kunskap och förståelse från hälso- och sjukvården upplevdes som ett hinder i vårdkontakten. Slutsats Föräldrar påverkades emotionellt och psykosocialt i den förändrade livssituationen. De beskrev känslor av skuld, skam och isolering, samtidigt som påfrestningar tär på relationer inom familjen. Föräldrar uttryckte behov av bättre bemötande och stöd från hälso- och sjukvården för att hantera den svåra livssituationen.Background Anorexia nervosa is one of the more serious eating disorders, often affecting young people and placing great strain on parents. Although healthcare professionals meet these individuals and parents, knowledge of the severity of the illness and the parents' experiences is limited, which can negatively affect the response. By describing how parents experience the situation, healthcare professionals understanding can increase, which can contribute to a more understanding response and improved support efforts. Aim The aim of this literature review was to describe parents' experiences of living with a child or young adult diagnosed with anorexia nervosa. Method This non-systematic literature review is based on 11 scientific articles with both qualitative and quantitative approaches. The articles were identified through a structured search strategy in the databases CINAHL and PubMed, with a time frame of 2015–2025. The articles were analyzed through an integrated data analysis where the texts were reviewed, categorized and compiled to provide an overview of common findings in the studies. Results The results were presented in two main categories: Parents' emotional and relational stresses related to anorexia nervosa and Parents management of everyday life and care – a changed life situation. The results showed that parents experience a strong emotional burden when a child falls ill with AN, where guilt was a prominent feeling. A lack of knowledge and understanding from the healthcare system was perceived as an obstacle to care contact. Conclusions Parents are emotionally and psychosocially affected by the changed life situation. They described feelings of guilt, shame, and isolation, while stress took a toll on family relationships. Parents expressed a need for better treatment and support from health and medical care to cope with the difficult life situation
Patient reported experiences of receiving person-centred, nurse-led follow-up after revascularisation for intermittent claudication : Secondary analysis of a randomised controlled trial
No full textAIM: To evaluate the quality of care from the patients' perspective after receiving either person-centred, nurse-led follow-up or standard care after surgical treatment of intermittent claudication. DESIGN: Secondary analysis of a randomised controlled trial. METHODS: Patients at two centres for vascular surgery in Stockholm, Sweden were randomised to either a person-centred, nurse-led follow-up programme (intervention group) or a standard follow-up programme with surgeons. During their visits at 4 to 8 weeks and 1 year after surgery, they received the questionnaire Quality from patients' perspective with 28 items. The patients responded to each item from two aspects: (1) how they perceived the quality of received care and (2) subjective importance (how important the care was for them). RESULTS: A total of 104 of 138 patients at 4-8 weeks and 159 of 193 patients at 1 year after surgery completed the questionnaire. At 4-8 weeks, the intervention group scored significantly higher perceived quality of care regarding five items: receiving useful information about "How I should take care of myself" and "Which nurse were responsible for my care", "Nurses were respectful towards me", "Nurses showed commitment/cared about me" and "Easy to get in contact with the clinic through telephone". At 1 year, the intervention group scored higher regarding two items: "Which nurses were responsible for my care" and "Next of kin treated well". CONCLUSION: Person-centred, nurse-led follow-up as implemented in this study has been shown to lead to a higher perception of quality of care regarding information about self-care, the experience of being respected, and knowing the care provider responsible for their care. Thus, it could contribute towards improved patient satisfaction without compromising the perception of quality of care regarding other factors such as receiving the best medical care or timeliness. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: This study addresses how patients with intermittent claudication, who underwent revascularisation, perceive a follow-up care that is person-centred and nurse-led compared to standard care delivered by surgeons. The results indicate that patients find the person-centred and nurse-led follow-up programme satisfactory, with equal or higher quality of care and that follow-up can be delivered by nurses with retained patient safety. Thus, vascular units may consider transitioning follow-up care from surgeons to nurses while maintaining positive patient's perception of quality of care, patient satisfaction and safety. REPORTING METHOD: Reporting of the work was made using the Consolidated Standards of Reporting Trials (CONSORT) statement. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution. TRIAL REGISTRATION: Study Details | Person-centred Follow-up and Health Promotion Programme After Revascularization for Intermittent Claudication | ClinicalTrials.gov: NCT03283358
Towards equitable maternity care : Exploring access to fetal movement care among migrant women in Sweden
No full textIn Sweden, women who have migrated to Sweden have, compared to women born in Sweden, higher risks of adverse birth outcomes related to decreased fetal movements, such as intrauterine growth restriction and stillbirth. Fetal movement information is integrated into the Swedish antenatal care programme and women are encouraged to seek care if they perceive that the movements decrease in strength or frequency. There are disparities regarding how often women seek care for decreased fetal movements based on their country of birth and level of education. Women born in Sweden and those with higher education levels are more likely to seek care compared to women born in Sub-Saharan Africa and those with lower education levels. This thesis aimed to explore access to fetal movement care among migrant women in Sweden, with a particular focus on Swedish-Somali migrant women. Study I explored Swedish-Somali migrant women’s experiences of fetal movement awareness through individual interviews (n=15). In Study II, interviews with midwives (n=15) about providing fetal movement information to migrant women were conducted. Study III, a retrospective cohort study based on registry data encompassing 18,791 women, examined the impact of the Covid-19 pandemic on women’s healthcare contacts for decreased fetal movements in Region Stockholm. Study IV, a non-randomised intervention study with a control group, including 2,806 women, used registry data to assess the effect of a modified Mindfetalness-based intervention specifically aimed at Swedish-Somali migrant women on birth outcomes. Study I and II found that migrant women encounter barriers on both individual and structural levels when accessing information and care related to fetal movements. Continuity of care was essential to building trust between the woman and midwife, overcoming communication gaps, and safeguarding maternal and fetal well-being. Study III showed that, overall, healthcare contacts for decreased fetal movements remained consistent before and after the onset of the Covid-19 pandemic. However, for women with a BMI ≥ 30.0, the rate of contacts declined following the onset of the pandemic, while for Swedish-born women, those with a university-level education, and students, the rate of healthcare contacts increased. Study IV did not find statistically significant differences in the primary outcome, Apgar score below10 at five minutes, between the intervention and control groups. However, women who participated in the intervention had significantly higher rates of spontaneous vaginal births compared to women in the control group. Migrant women’s awareness of fetal movements and their decision to contact healthcare for this complication are influenced by both individual, structural and contextual factors. The findings from this thesis highlight systemic inequities within the Swedish maternity healthcare system that create barriers for migrant women regarding access to fetal movement care. Addressing these barriers requires improved communication strategies and support for midwives to provide individualised care. When designing interventions aimed at improving birth outcomes, it is important to consider both demographic data and the prevalence of risk factors within the target population. To understand an intervention’s broader implications, it is essential to involve stakeholders throughout the study process, from designing the intervention to evaluating its outcomes