scholarly journals I need to be who I am: a qualitative interview study exploring the needs of people with dementia in Norway

BMJ Open ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. e035886
Author(s):  
Elisabeth Wiken Telenius ◽  
Siren Eriksen ◽  
Anne Marie Mork Rokstad

ObjectiveMany people with dementia receive community services. These services are often based on the needs of informal caregivers and professional caregivers’ assessment. User involvement and participation are main objectives in the Norwegian National Dementia Plan 2020. To enhance user involvement and individual tailoring of healthcare services, more information is required about the needs of people with dementia. The aim of this study was to explore the experienced needs of people with dementia in order to facilitate user involvement in provided services.MethodsAn explorative cross-sectional study design was used. We performed semistructured interviews with people with dementia who were recruited from all regions of Norway. The sample comprised 35 participants diagnosed with dementia. The interviews were audio-recorded and transcribed, and the data material was analysed using a qualitative content analysis.ResultsThree main categories emerged from the interviews: (1) to stay connected; (2) to be active and participate; and (3) to live for the moment. The overarching theme was: the need to be who I am.ConclusionsPeople with dementia participating in the study were heterogeneous regarding wants and requirements. Most of them expressed the need and wish to hold on to who they are. Close and robust relations with family and friends can give significant support to people with dementia. However, living with dementia might put considerable strain on relations. Services should provide support to enhance relationships, encourage existing networks to remain stable and facilitate participation in meaningful activities for people living with dementia.

2009 ◽  
Vol 24 (S1) ◽  
pp. 1-1 ◽  
Author(s):  
M. Gonçalves Pereira ◽  
J. Alves da Silva ◽  
I. Carmo ◽  
A.L. Papoila ◽  
A.M. Cardoso ◽  
...  

Background and aims:In meridional European countries such as Portugal, informal caregivers are almost always close relatives, either key-relatives (those more involved) or not. There are few systematic comparisons between the experience of key-relatives/primary caregivers (PC) and other/secondary caregivers (SC) in psychogeriatrics. We present some preliminary data from the FAMIDEM (Families of People with Dementia) survey.Methods:Non-randomised cross-sectional study comparing two related samples of caregivers (PC versus SC) of 41 patients with DSM-IV dementia from outpatient practices in Lisbon (Portugal). Caregivers’ assessments included: Zarit Burden Interview, Caregiver Activity Survey (CAS), Positive Aspects of Caregiving, GHQ-12, Social Network Questionnaire and Dementia Knowledge Questionnaire.Results:Patients’ mean age was 78,7 years (SD 7,9). 24 (58,5%) were women and 58,5% had Alzheimer disease.PC were older than SC (p=0,000) and tended to live with the patient (p=0,000). They reported less emocional support (p=0,021) but higher objective burden-CAS (p=0,002). Regarding all other outcome variables, significant differences between groups were not found. Within the global sample, comparing spousals (n=23) and adult children/other relatives (n=59) yielded interestingly different preliminary results, eg higher GHQ-12 levels (p=0,010).Conclusions:The experience of caregiving is possibly different regarding PC and SC, but further research is warranted in order to define who really is at risk. Being a spouse may be much more determinant, although most spouses are PC as well. for the moment, it seems prudent not to exclude SC from risk assessments. the final FAMIDEM results, even lacking generalizability, will probably provide interesting clues.


Author(s):  
Dur-e- Nishat

Background: Family medicine is a field in which complete and detailed set of healthcare services are provided to the patients and their families. In developed countries, freshly graduated students choose family medicine as a priority for their career. However, in Pakistan it is not the case. The present study is undertaken to determine the perceptions of final year medical students’ about Family Medicine as a viable career. Methods: A total number of 504 students participated in the study. This was a cross-sectional study. The study participants were in their final year of medical college. Data was collected using a preapproved questionnaire. Data was entered and analyzed via SPSS version 17 and Chi-Square test was used post-stratification. Results: Only 14.3% (n=72) medical students had heard about Family Medicine. Only 18% (n=92) would select family medicine as a profession. The most frequent rationale for choosing the field of Family Medicine was the variety of patients seen in general practice (55.4% n=51). Conclusion: There is a dire need to focus on increasing awareness about the field of family medicine among medical students. The students should be counseled on the advantages along with the disadvantages of choosing this field as a medical profession.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Sajad Vahedi ◽  
Amin Torabipour ◽  
Amirhossein Takian ◽  
Saeed Mohammadpur ◽  
Alireza Olyaeemanesh ◽  
...  

Abstract Background Unmet need is a critical indicator of access to healthcare services. Despite concrete evidence about unmet need in Iran’s health system, no recent evidence of this negative outcome is available. This study aimed to measure the subjective unmet need (SUN), the factors associated with it and various reasons behind it in Iran. Methods We used the data of 13,005 respondents over the age of 15 from the Iranian Utilization of Healthcare Services Survey in 2016. SUN was defined as citizens whose needs were not sought through formal healthcare services, while they did not show a history of self-medication. The reasons for SUN were categorized into availability, accessibility, responsibility and acceptability of the health system. The multivariable logistic regression was used to determine significant predictors of SUN and associated major reasons. Results About 17% of the respondents (N = 2217) had unmet need for outpatient services. Nearly 40% of the respondents chose only accessibility, 4% selected only availability, 78% chose only responsibility, and 13% selected only acceptability as the main reasons for their unmet need. Higher outpatient needs was the only factor that significantly increased SUN, responsibility-related SUN and acceptability-related SUN. Low education was associated with higher SUN and responsibility-related SUN, while it could also reduce acceptability-related SUN. While SUN and responsibility-related SUN were prevalent among lower economic quintiles, having a complementary insurance was associated with decreased SUN and responsibility-related SUN. The people with basic insurance had lower chances to face with responsibility-related SUN, while employed individuals were at risk to experience SUN. Although the middle-aged group had higher odds to experience SUN, the responsibility-related SUN were prevalent among elderly, while higher age groups had significant chance to be exposed to acceptability-related SUN. Conclusion It seems that Iran is still suffering from unmet need for outpatient services, most of which emerges from its health system performance. The majority of the unmet health needs could be addressed through improving financial as well as organizational policies. Special attention is needed to address the unmet need among individuals with poor health status.


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira

Abstract Objective To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2–3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.


2021 ◽  
pp. 205715852110096
Author(s):  
Erla Kolbrun Svavarsdottir ◽  
Gudny Bergthora Tryggvadottir ◽  
Margret Gisladottir ◽  
Ragnheidur Osk Erlendsdottir

An increasing number of children attend schools with chronic illnesses/disorders that require managing and comprehensive healthcare from school nurses during the day. Collaboration between school nurses, the school-aged child with attention-deficit hyperactivity disorder (ADHD) or asthma, and their families is needed when coordinating/managing chronic health problems in the school setting. However, involving families in the assessment and care planning processes can be challenging. The aim of this study was to survey the illness beliefs of school nurses and their perceptions of their family nursing practice skills when offering healthcare services to children with ADHD or asthma in schools. A cross-sectional study was used for a sample of 82 school nurses. The manuscript was prepared following STROBE guidelines. Results indicated that the school nurses perceived themselves to be more confident and to have better knowledge and skill in family nursing practice when offering healthcare services to families of children with ADHD in comparison to asthma.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Abeer Alharbi ◽  
Joharah Alzuwaed ◽  
Hind Qasem

Abstract Background The Ministry of Health in Saudi Arabia is expanding the country’s telemedicine services by using advanced technology in health services. In doing so, an e-health application (app), Seha, was introduced in 2018 that allows individuals to have face-to-face visual medical consultations with their doctors on their smartphones. Objective This study evaluated the effectiveness of the app in improving healthcare delivery by ensuring patient satisfaction with the care given, increasing access to care, and improving efficiency in the healthcare system. Methods A cross-sectional study design was used to assess the perceptions of users of the Seha app and non-users who continued with traditional health services. The data were collected using an online survey via Google Forms between June 2020 and September 2020. Independent t tests and chi-square (χ2) tests were conducted to answer the research questions. Results There was a significant difference between users and non-users in terms of ease of access to health services (t =  − 9.38, p < 0.05), with app users having a higher mean score (4.19 ± 0.91) than non-users (3.41 ± 1.00); satisfaction with health services (t =  − 6.33, p < 0.05), with users having a higher mean score (3.96 ± 0.91) than non-users (3.45 ± 0.94); and efficiency (only one visit needed for treatment) (t =  − 3.20, p < 0.05), with users having a higher mean score (3.71 ± 0.93) than non-users (3.45 ± 0.93). There were significant associations between the use of the Seha app and age (χ2 = 8.79, p < 0.05), gender (χ2 = 22.19, p < 0.05), region (χ2 = 19.74, p < 0.05), and occupation (χ2 = 22.05, p < 0.05). There were significant relationships between the three items (on access, satisfaction, and efficiency) and experiencing technical issues (t = 4.47, t = 8.11, and t = 3.24, respectively, p < 0.05), with users who faced technical problems having significantly lower mean scores for all three items. Conclusion This study provided evidence that the Seha app improved the delivery of healthcare in Saudi Arabia. Users of the app had a better health experience in terms of their perceived ease of access to healthcare services; their satisfaction with healthcare services; and the efficiency of the system, measured by the number of required doctor visits. Other factors that appeared to influence the use of the app included age, gender, usual source of care, and technical difficulties.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
G Graffigna ◽  
S Barello ◽  
L Palamenghi ◽  
M Savarese ◽  
G Castellini

Abstract Background At the end of February 2020 a new case was diagnosed with COVID-19 in north Italy, suddenly followed by new cases. Italian health authorities decided to enforce restrictive measures. Northern areas of Italy were identified as “red areas” to slow down the epidemic and its impact on the healthcare system. From this perspective, the COVID-19 epidemic in Italy constitutes a testing ground for the assessment of the ability of consumers to cope with this health risk. Methods A cross-sectional study on a representative sample of 1000 Italian citizens was conducted over the period 27 February- 5 March exploring the following hypotheses: 1) less engaged individuals are more concerned for the health emergency and feel more vulnerable; 2) less engaged have higher probability to develop negative attitudes and dysfunctional behaviors. Results only the 16% the interviewees presented a high level of engagement. Lower levels of engagement were measured in the southern parts of Italy (not yet touched by the epidemics at the time of data collection). People with lowers levels of engagement reported higher fears for the contagion and sense of vulnerability. Furthermore, they showed the lower levels of trust in the Public Health Authorities, in medical research and in vaccines. Finally, they appeared more dismissive in their preventive behaviors and more disorganized in the fruition of the healthcare services. Conclusions A psychological analysis of processes of attitudinal and role change in the direction of becoming more engaged in health prevention is worthy in order to forecast potential dysfunctional reactions to restrictive health prevention measures and to orient personalized education initiatives to consumers with different level of engagement. Key messages Profiling based on the levels of health engagement is important in order to plan more effective healthcare measures during epidemics. Targeted educational initiatives should take into account citizens' engagement profiles.


Neurology ◽  
2021 ◽  
Vol 98 (1 Supplement 1) ◽  
pp. S23.1-S23
Author(s):  
Carlos Pinheiro ◽  
Francisca Taciane Nascimento Sousa

ObjectiveTo evaluate the self-reported history of concussion in athletes of both Brazilian Jiu-Jitsu (BJJ) and Muay Thai.BackgroundCombat sports are widely practiced around the world. They include modalities that involves punches or kicks directed at the opponent's head (Striking sports) or that consists of grabbing an opponent and taking him to the ground (Grappling sports). Due to the objectives and close contact in combat sports, the risk of concussion is significant.Design/MethodsThis was a cross-sectional study involving a Brazilian sample of BJJ athletes (n-18) and Muay Thai athletes (n-22). The sample was consisted of both professional and amateur athletes (Women constituted 20% of sample). Through individual interviews with a researcher the following data were collected: self-report of concussion and the moment of the injury (whether in practice or in the fight). The Post-Concussion Symptoms Scale (PCSS) was also applied. In the present study, a concussion was considered as a direct impact on the head followed by symptoms. This study was approved by a local Ethics Committee.ResultsAmong BJJ athletes, 61% reported a history of concussion, while among Muay Thai athletes the percentage was more higher (86%). The main mechanisms of head impact were the throw/takedown and elbow-hits to the head in BJJ and punches and knee-hits to the head in Muay Thai. There was no difference in the symptom score between BJJ and Muay Thai concussed athletes (average of 11 vs 10.7, respectively). The most common symptoms were dizziness, headache and nausea in BJJ athletes, and headache, nausea, drowsiness and brain fogginess in Muay Thai ones.ConclusionsThe results presented herein suggest that concussions in Muay Thai and BJJ occur through different mechanisms. The clinical profile of post-concussion symptoms appears to be different between BJJ and Muay Thai athletes.


2013 ◽  
Vol 22 (1) ◽  
pp. 141-148 ◽  
Author(s):  
Fabiana de Souza Orlandi ◽  
Neide de Souza Praça

This descriptive cross-sectional study had the objective to evaluate the level of hope in women aged 50 or older suffering from HIV/AIDS, utilizing the Herth Hope Scale. The study involved 200 HIV- positive women, within the age bracket of interest, enrolled in three STI/AIDS specialized healthcare services in the city of São Paulo. The rules of the 196/96 Resolution were met and the study was approved by the Research and Ethics Committee. Data were collected in 2010 using two instruments: subjects' characterization and the Herth Hope Scale. Results demonstrated an average score of 36.75 (±4.52) on the Herth Hope Scale, with an interval of 12 to 48. This score is below the score obtained with the same scale for various pathologies, indicating a reduced perception of hope by the sample. Nurses should provide interventions to improve hope for these people, establishing realistic goals and strengthening social support.


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