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1.
Scand J Caring Sci ; 38(1): 185-199, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37507842

RESUMO

BACKGROUND: Wellness is a holistic, multidimensional, and process-oriented property on a continuum. It has been used interchangeably with and is undifferentiated from concepts such as health and well-being without an in-depth clarification of its theoretical foundations and a reflection on its meaning. The concept of wellness is frequently used, but its definition remains unclear. AIM: To conceptually and theoretically explore the concept of wellness to contribute to a deeper understanding in caring science. METHOD: Rodgers' evolutionary concept analysis was applied to the theoretical investigation of data from publications of international origins. The focus was on antecedents, attributes, consequences, surrogate and related terms, and contextual references. A literature search was performed through a manual review of reference lists and an online search in CINAHL and PubMed via EBSCO, and in ProQuest. Abstracts were examined to identify relevant studies for further review. The inclusion criteria were peer-reviewed papers in English; papers published in scientific journals using the surrogate terms 'wellness', 'health', 'health care', and 'health care and wellness'; and papers discussing and/or defining the concept of wellness. Twenty-six studies met the inclusion criteria. RESULTS: Based on the findings from this concept analysis, a definition of wellness was developed: 'a holistic and multidimensional concept represented on a continuum of being well that goes beyond health'. Implications for nursing practice were correspondingly presented. CONCLUSION: Wellness is defined as a holistic and comprehensive multidimensional concept represented on a continuum of being well, that goes beyond health. It calls attention by applying the salutogenic perspective to health promotion in caring science. It is strongly related to individual lifestyle and health behaviour and is frequently used interchangeably with health and well-being without an in-depth clarification of its theoretical foundation.


Assuntos
Comportamentos Relacionados com a Saúde , Promoção da Saúde , Humanos , Estilo de Vida , Atenção à Saúde , Formação de Conceito
2.
Health Qual Life Outcomes ; 19(1): 55, 2021 Feb 12.
Artigo em Inglês | MEDLINE | ID: mdl-33579311

RESUMO

BACKGROUND: The improvement in treatment of pediatric acute lymphatic leukemia (ALL) has introduced new challenges for pediatric oncology care in understanding and handling long-term treatment-related complications later in adult life. The aim of this study was to describe health related quality of life (HRQoL) and the relation to buffering factors among young adult (YA) pediatric ALL survivors and their siblings. METHODS: This cross-sectional study was performed among 227 adults, treated for pediatric ALL in Sweden between 1985 and 1997 and their siblings (n = 70). Group means of HRQoL (SF-36) were compared between YA ALL survivors and the siblings, as well as to normative values from the general population. Self-efficacy (GSES) and social support (SS-13 subscale AVSI) was considering potential buffering factors for HRQoL and mental health. Associations between HRQoL and mental health respectively and self-efficacy and social support was analyzed. RESULTS: The YA ALL survivors scored significantly lower on the HRQoL parameters general health (69.6 vs. 78.4, p = 0.004) and role emotional (77.1 vs. 88.1, p = 0.014), than the siblings. Further, they reported significantly lower general health (69.6 vs. 75.8), vitality (56.9 vs. 68.8), social functioning (84.5 vs. 88.6), role emotional (77.1 vs. 85.7) and mental health (71.3 vs. 80.9) compared with Swedish norms. Both YA ALL survivors and the siblings reported lower vitality and worse mental health than the general population. The HRQoL parameters, depression, stress and anxiety were all associated with both self-efficacy and social support among the YA ALL survivors. Among the siblings however, only general health, vitality, role emotional, mental health and depression were associated with social support, and only general health and mental health were associated with general self-efficacy. CONCLUSION: The results from this study show that buffering factors, like social support and self-efficacy, may play an important role for psychosocial outcomes and HRQoL among YA ALL survivors later in life. The results suggest that this group could benefit from continuous support in adult life to handle consequences of their pediatric disease.


Assuntos
Sobreviventes de Câncer/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Autoeficácia , Apoio Social , Adolescente , Adulto , Criança , Pré-Escolar , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Saúde Mental , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Irmãos/psicologia , Suécia , Adulto Jovem
3.
J Med Internet Res ; 22(7): e17673, 2020 07 28.
Artigo em Inglês | MEDLINE | ID: mdl-32720907

RESUMO

BACKGROUND: For children 6-12 years old, there is a shortage of electronic Health (eHealth) services that promote their participation in health care. Therefore, a digital communication tool, called Sisom, was developed to give children a voice in their health care. Children with long-term diseases want to be more involved in their health care and have the right to receive information, be listened to, express their opinions, and participate in decision making in health care. However, the outcomes of using Sisom in practice at pediatric oncology clinics have not been investigated. OBJECTIVE: The aim of this study was to investigate children's participation during appointments with pediatricians at pediatric oncology clinics, with or without the use of the eHealth service Sisom. METHODS: A quasiexperimental design with mixed methods was used. We analyzed 27 filmed appointments with pediatricians for 14 children (8 girls and 6 boys) aged 6-12 years (mean 8.3 years) with a cancer diagnosis. The intervention group consisted of children who used Sisom prior to their appointments with pediatricians at a pediatric oncology clinic, and the control group consisted of children who had appointments with pediatricians at 4 pediatric oncology clinics. Data from observations from the videos were quantitatively and qualitatively analyzed. The quantitative analysis included manual calculations of how many times the pediatricians spoke directly to the children, the proportion of the appointment time that the children were talking, and levels of participation by the children. For the qualitative analysis, we used directed content analysis to analyze the children's levels of participation guided by a framework based on Shier's model of participation. RESULTS: Pediatricians directed a greater proportion of their discussion toward the child in the intervention group (731 occasions) than in the control group (624 occasions), but the proportion of the appointment time the children talked was almost the same for both the intervention and control groups (mean 17.0 minutes vs 17.6 minutes). The levels of participation corresponded to the first three levels of Shier's participation model: children were listened to, children were supported to express their views, and children's views were taken into account. The results showed an increased level of participation by the children in the intervention group. Several codes that were found did not fit into any of the existing categories, and a new category was thus formed: children received information. CONCLUSIONS: This study shows that the eHealth service Sisom can increase children's participation during appointments with health care professionals. Further studies employing a randomized control design focusing on the effects of eHealth services on children's health outcomes, perceived participation, and cost-effectiveness could make a significant contribution to guiding the implementation of eHealth services in pediatric care.


Assuntos
Eletrônica/normas , Serviços de Saúde/normas , Oncologia/métodos , Participação do Paciente/métodos , Criança , Feminino , Humanos , Masculino , Ensaios Clínicos Controlados não Aleatórios como Assunto
4.
J Clin Nurs ; 29(1-2): 107-118, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31531995

RESUMO

AIMS AND OBJECTIVES: To develop and evaluate the psychometric properties of a self-report instrument measuring 6- to 12-year-old children's own experiences of participation in health care. BACKGROUND: Validated measures to evaluate children's participation in health care can play a critical role in strategic work towards supporting children's participation at an individual level and in working towards quality improvements at an organisational level. There are, however, no available instruments to achieve this. METHODS: An instrument development design was used, together with the TRIPOD checklist. Item construction was based on research about children's perspectives on participation in health care and Shier's model for participation. The face and content validity was evaluated by 14 healthy children, 9 paediatric nurses and 8 children with different diseases. The construct validity, internal consistency and stability reliability were evaluated based on data from 138 children visiting a paediatric clinic. RESULTS: The testing of the face and content validity resulted in an instrument with child-friendly language, additional instructions and visual attractive presentation. The principle component analysis resulted in the four-factor solution: "To be included," "To trust professionals," "To take control," and "To understand information." Internal consistency and intraclass correlation coefficients were acceptable. CONCLUSION: We conclude that the child participation in health care (ChiPaC) instrument has adequate reliability and validity when used to evaluate children's participation in health care. The involvement of children in the development of ChiPaC resulted in a brief, colourful and user-friendly instrument for use in paediatric health care. RELEVANCE TO CLINICAL PRACTICE: This new questionnaire, ChiPaC, is adapted for children between 6-12 years measuring participation in health care from a child perspective. ChiPaC can be used in the practical work of supporting individual children's participation in health care as well as in the strategical work towards quality improvements on an organisational level.


Assuntos
Participação do Paciente , Autorrelato/normas , Adolescente , Criança , Feminino , Humanos , Masculino , Enfermagem Pediátrica/métodos , Psicometria/instrumentação , Reprodutibilidade dos Testes , Inquéritos e Questionários
5.
BMC Health Serv Res ; 19(1): 800, 2019 Nov 05.
Artigo em Inglês | MEDLINE | ID: mdl-31690287

RESUMO

BACKGROUND: The growing field of participation in healthcare has the potential to provide a number of benefits for children, patients, healthcare professionals and also the healthcare systems. According to the Convention on the Rights of the Child (UNCRC), children have the right to participate in their own healthcare and make their voice heard. Children's opportunities for understanding their conditions, sharing their views and participating in decisions regarding their care depend on healthcare professionals but also on parents' ability to communicate and include children. E-health solutions can remove barriers to children's communication with healthcare professionals. The aim of this study was to explore parents' perspectives on the outcomes of an e-health solution, Sisom, used by children during healthcare appointments. METHODS: The empirical data is based on interviews with 16 parents. In the present study constructivist, grounded theory was chosen as the method. RESULTS: The theory of enhancing participation, by orientating communication about healthcare towards the voice of the child instead of the parents, summarizes the process of how the outcome of Sisom for children lead to enhanced participation, by making the child the main actor and an agent in his/her own healthcare. The facilitators for achieving participation in Sisom were four interrelated outcomes; engaging, voice-guarding, raising awareness and integrity preserving. In addition to generating increased participation, it emerged that the use of Sisom also initiated a process, which was evident in all four subcategories that facilitated the child in coping with the experience of having an illness. CONCLUSIONS: We conclude, that Sisom orientated communication about healthcare towards the voice of the child instead of the parents as well as including the child in the dialogue with the healthcare professional and thus increasing the child's participation and human rights.


Assuntos
Pais/psicologia , Pediatria/organização & administração , Telemedicina/organização & administração , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde , Pesquisa Qualitativa
6.
J Med Internet Res ; 21(11): e14271, 2019 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-31730040

RESUMO

BACKGROUND: Children's participation in health care is one of the most important components in the management of their disease. Electronic health (eHealth) services that are adapted to the needs of children have the potential for restructuring how children and professionals work together. Therefore, a digital interactive assessment and communication tool, Sisom, was developed to give children aged between 6 and 12 years a voice in their own health care. However, the implementation of eHealth services such as Sisom in daily practice in pediatric health care is rarely investigated. OBJECTIVE: The aim of this study was to explore the process of implementing Sisom for children in pediatric care in Sweden. More specifically, the study aimed to (1) evaluate whether the implementation strategy was conducted as planned, (2) understand the barriers and facilitators of the implementation strategy in pediatric care settings, (3) gain insight into how professionals work with the specific intervention, and (4) gain insight into the usefulness and effects of the intervention from the professionals' perspectives. METHODS: A process evaluation design was used to study the implementation of Sisom at 4 pediatric care centers in Sweden. An extensive amount of qualitative and quantitative data was collected before, during, and after the intervention through self-report checklists, memos, and interviews with professionals. In total, 46 children, aged between 6 and 13 years, participated. The children used Sisom on two occasions during 6 months. When they used Sisom, a printed report formed the basis for a forthcoming dialogue between professionals, children, and their parents. RESULTS: To our knowledge, this is the first implementation study of an eHealth communication tool aimed at strengthening children's participation in pediatric health care. Key factors for successful implementation were alignment of the solution with the values and goals of the organization, health care professionals' beliefs in the usefulness and usability of the solution, and health care professionals' willingness to change their professional roles guided by the solution. CONCLUSIONS: The results from the study show that it is possible to restructure health care delivery toward a child-centered approach, if there is a willingness and preparedness in the organization to implement an eHealth solution with the aim of restructuring the way of working with children's participation.


Assuntos
Pesquisa sobre Serviços de Saúde/métodos , Telemedicina/métodos , Adolescente , Criança , Eletrônica , Feminino , Humanos , Masculino
7.
J Clin Nurs ; 24(19-20): 2945-53, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26215896

RESUMO

AIMS AND OBJECTIVES: To describe the experiences of participation in perioperative care of 8- to 11-year-old children. BACKGROUND: All children have the right to participate in decisions that affect them and have the right to express their views in all matters that concern them. Allowing children to be involved in their perioperative care can make a major difference in terms of their well-being by decreasing fear and anxiety and having more positive experiences. Taking the views of children into account and facilitating their participation could thus increase the quality of care. DESIGN: Descriptive qualitative design. METHODS: The study was conducted in 2013 and data were collected by narrative interviews with 10 children with experience from perioperative care in Sweden. Qualitative content analysis was chosen to describe the variations, differences and similarities in children's experiences of participation in perioperative care. RESULTS: The result showed that receiving preparatory information, lack of information regarding postoperative care and wanting to have detailed information are important factors for influencing children's participation. Interaction with healthcare professionals, in terms of being listened to, being a part of the decision-making and feeling trust, is important for children's participation in the decision-making process. Poor adaptation of the care environment to the children's needs, feeling uncomfortable while waiting and needs for distraction are examples of how the environment and the care in the operating theatre influence the children's experiences of participation. CONCLUSIONS: Efforts should be made to improve children's opportunities for participation in the context of perioperative care and further research is needed to establish international standards for information strategies and care environment that promotes children's participation in perioperative care. RELEVANCE TO CLINICAL PRACTICE: Nurse anaesthetists need to acquire knowledge and develop strategies for providing preparatory visits and information to children prior to surgery as well as reducing waiting times and creating environments with meaningful and tailored opportunities for distraction in perioperative care.


Assuntos
Tomada de Decisões , Participação do Paciente , Assistência Perioperatória , Fatores Etários , Criança , Emoções , Feminino , Humanos , Masculino , Suécia , Confiança
8.
JMIR Form Res ; 8: e54819, 2024 Aug 12.
Artigo em Inglês | MEDLINE | ID: mdl-39133918

RESUMO

BACKGROUND: Acute lymphoblastic leukemia (ALL) is the most common malignancy in childhood, but the prognosis has remarkably improved over the last 50 years in high-income countries, and thus, there is a focus on long-term health outcomes following survival and how to best provide health care support to adult long-term survivors of childhood ALL to prevent and handle potential health problems. Digital health interventions are promising to deliver feasible health promotion and prevention programs. This is particularly relevant for ensuring long-term follow-up in cases where continuous contact with oncology care may be disrupted. Moreover, these interventions are beneficial in reaching geographically dispersed target groups and overcoming the time constraints of everyday life that often hinder participation in such programs. OBJECTIVE: This study aimed to fill the gaps in existing research on adult long-term survivors of childhood ALL and provide formative data that can inform the development of formalized follow-up services designed to meet the needs of these survivors in ways that align with their preferences for digital health interventions. METHODS: In this cross-sectional national study, adult survivors (aged ≥18 years) of childhood ALL for over 10 years after diagnosis were compared to their siblings in terms of mental and physical health-related factors, including sleep, stress, anxiety, and depression (Depression Anxiety and Stress Scale 21 [DASS-21]); several dimensions of fatigue (Multidimensional Fatigue Inventory 20 [MFI-20]); work ability (Work Ability Index); chronic pain; and prevalences of diabetes, cardiovascular disease, headache or migraine, and rheumatic disease. RESULTS: Overall, 426 of 855 eligible ALL survivors responded (mean age 30.9, SD 7.7 years), and they participated at an average of 24 (SD 6.9) years after ALL diagnosis. Siblings (n=135; mean age 31.5, SD 7.7 years) acted as controls. Sleep quality, sleep quantity, and mean work ability scores were significantly lower, and physical fatigue, reduced motivation, and reduced activity scores were higher in ALL survivors than in siblings. There were no significant differences between the groups in terms of BMI and prevalence of chronic pain, depression, anxiety, or stress. Physical and psychological complications were more frequent among adult ALL survivors who had received hematopoietic stem cell transplantation (HSCT) than among those who had not received HSCT. CONCLUSIONS: Our nationwide cross-sectional study addressed the scarcity of knowledge regarding the self-reported health outcomes of adult long-term survivors of childhood ALL. We highlighted significant disparities within this population and emphasized the potential of comprehensive digital interventions that target vitality, sleep quality, fatigue, and psychosocial well-being to enhance well-being and bolster the capacity for managing chronic health conditions in this target group. Such an intervention would align with the needs of this target group, which is a prerequisite for successfully incorporating technology into the daily lives of survivors of childhood ALL.

9.
Eur J Oncol Nurs ; 70: 102592, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38669953

RESUMO

PURPOSE: Adults who had acute lymphoblastic leukaemia (ALL) as children and were treated with allogeneic hematopoietic stem cell transplantation (aHSCT) may have been affected in their lives due to several long-term complications. From a clinical point of view, it is of interest to study how survivors describe their perceptions of their childhood today. The aim was therefore to describe how adults perceived their childhood and the influences of being treated for ALL with aHSCT as a child. METHOD: Semi-structured telephone interviews were undertaken with 18 adults who had been treated for childhood ALL with aHSCT and were included in a national cohort of childhood ALL survivors, diagnosed between 1985 and 2007 at an age between 0 and 17 years. A phenomenographic analysis was used. RESULTS: Three categories emerged: Feeling different, Feeling security and Feeling guilty. The informants felt that they had been different from other children but had felt security with the healthcare professionals and in care. They felt guilty because both their siblings' and parents' lives had been affected, but at the same time many perceived that they and their family members had become closer to one another. CONCLUSIONS: The results emphasised that adults who had been treated for childhood ALL with aHSCT were affected both in negative and positive ways during their childhood. This indicates the importance for early psychosocial care interventions directed to children during their treatment, but also the need for person-centred psychological care in long-term outpatient clinics.


Assuntos
Sobreviventes de Câncer , Transplante de Células-Tronco Hematopoéticas , Leucemia-Linfoma Linfoblástico de Células Precursoras , Humanos , Transplante de Células-Tronco Hematopoéticas/psicologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Leucemia-Linfoma Linfoblástico de Células Precursoras/psicologia , Feminino , Masculino , Adulto , Adolescente , Sobreviventes de Câncer/psicologia , Criança , Pessoa de Meia-Idade , Transplante Homólogo , Adulto Jovem , Pesquisa Qualitativa , Adaptação Psicológica , Pré-Escolar , Entrevistas como Assunto
10.
J Adv Nurs ; 69(7): 1500-14, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-22973890

RESUMO

AIM: To evaluate the effects of a self-care promoting problem-based learning programme for people with rheumatic diseases in terms of health-related quality of life, empowerment, and self-care ability. BACKGROUND: Individuals with rheumatoid arthritis express a great need for education and support in adapting to the disease, but the average qualities of studies about patient education interventions are not high. There is no evidence of long-term benefits of patient education. DESIGN: Randomized controlled trial. METHODS: A randomized controlled design was selected with test at baseline, 1-week and 6-month post-interventions after completed the 1-year programme. The tests consisted of validity and reliability tested instruments. The participants were randomly assigned in spring 2009 to either the experimental group (n = 54) or the control group (n = 148). The programme was running alongside the standard care the participants received at a rheumatology unit. Parametric and non-parametric tests were used in the analyses. RESULTS: The participants in the experimental group had statistically significant stronger empowerment after participation in the self-care promoting problem-based learning programme compared with the control group, at the 6-month post-intervention. Approximately, two-thirds of the participants in the experimental group stated that they had implemented lifestyle changes due to the programme. CONCLUSION: The self-care promoting problem-based learning programme enabled people with rheumatic diseases to improve their empowerment compared with the control group. It is important to continue to develop problem-based learning in patient education to find the very best way to use this pedagogical method in rheumatology care.


Assuntos
Educação em Saúde/métodos , Poder Psicológico , Aprendizagem Baseada em Problemas , Doenças Reumáticas/enfermagem , Autocuidado , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Promoção da Saúde , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Autoeficácia , Suécia
11.
Int J Qual Stud Health Well-being ; 17(1): 2009203, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34904541

RESUMO

PURPOSE: The most common treatment for resident's health problems is pharmacological. Little research has been done on how an intervention with a non-pharmacological method, such as a weighted blanket, Through the nursing staff view, we can learn how weighted blankets influence resident's health in nursing homes. The aim of this study was to explore nursing staff's experiences of how an intervention with weighted blankets influenced resident's expressions of health. METHODS: The study had a descriptive qualitative design with semi-structured interviews with 20 nursing staff working in nursing homes, and an inductive content analysis was applied. RESULTS: The nursing staff expressed that the weighted blanket positively influenced resident's health in the areas of sleep, physical activity, and psychological behaviour. The weighted blanket made them fall asleep faster, sleep was uninterrupted andthey felt more rested in the morning. The nursing staff observed an increased level of activity as the resident became more energetic . The nursing staff also experienced reduced negative psychological behaviours like anxiety and worrying. CONCLUSION: This study indicated that the weighted blanket changed the health expression of resident in several crucial areas. Deep pressure treatment indicates an alternative health-improved treatment for resident in nursing homes.


Assuntos
Casas de Saúde , Recursos Humanos de Enfermagem , Ansiedade , Emoções , Humanos
12.
Geriatrics (Basel) ; 7(4)2022 Jul 29.
Artigo em Inglês | MEDLINE | ID: mdl-36005255

RESUMO

BACKGROUND: An increasingly aging population is a global phenomenon. While considered a positive step forward, vulnerability to age-related health problems increases along with the ageing population. The aim of the study was to investigate weighted blankets' effect on health regarding quality of life (QoL), sleep, nutrition, cognition, activities of daily living ADL and medication in older people living in nursing homes. METHODS: In total, 110 older people were involved in an intervention with weighted blankets, and 68 older people completed the intervention. Measures before and after were performed regarding quality of life; QoL-AD, EQ-VAS, sleep; MISS, nutrition; MNA, cognition; S -MMSE (ADL) and medication. Comparative statistical analyses were applied. RESULTS: After intervention with weighted blankets, health in general, such as QoL, improved. Sleep also improved significantly, especially with respect to waking up during the night. Nutrition was enhanced, health as a cognitive ability improved, and medication in the psychoanaleptic group decreased. The effect size varied between small and large. CONCLUSIONS: A weighted blanket seems to be an effective and safe intervention for older people in nursing homes, as several improvements were made regarding the health of older people.

13.
BMJ Open ; 12(1): e048325, 2022 Jan 07.
Artigo em Inglês | MEDLINE | ID: mdl-34996782

RESUMO

INTRODUCTION: Acute lymphoblastic leukaemia (ALL) is the most common form of cancer in children. Although treatment methods have improved and resulted in significant improvement of survival and reduction in late effects and late mortality risk, the health-related quality of life (HRQOL) of survivors might be affected. To introduce new interventions in clinical practice with the potential to support positive HRQOL outcomes, more knowledge is needed on how HRQOL in this group is constructed and stimulated. The purpose of this study is to investigate how HRQOL is affected in adults treated for paediatric ALL, in a long-term perspective and possible factors influencing this relationship. METHODS AND ANALYSIS: This cohort of young adult ALL survivors allows for investigations of factors influencing HRQOL outcomes on a national level. Eligible participants are obtained from the Swedish Childhood Cancer quality registry. Data collection includes both a follow-up of data collected in 2012 (n=224) and recruitment of new eligible participants to the cohort (n=601). The cohort will cover survivors of paediatric ALL, diagnosed between 1985 and 2007, at an age between 0 and 15 years. Data will be collected using validated, multidimensional, self-administered instruments, designed to measure HRQOL (SF-36), social support, sense of coherence and resilience. ETHICS AND DISSEMINATION: The study will be carried out in accordance with the ethics permit obtained from the Swedish ethics review authority (Dnr 2019-05181). Dissemination of study results will take place through research articles and reports to the national patient organisation and the national network for consultancy nurses for this target group and to the working group for the Swedish national long-term care programme for childhood cancer. Results will also reach practical application within the follow-up clinic for adult childhood cancer survivors at Sahlgrenska Hospital in Gothenburg.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Estudos Transversais , Humanos , Lactente , Recém-Nascido , Estudos Longitudinais , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Adulto Jovem
14.
BMC Musculoskelet Disord ; 12: 102, 2011 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-21599884

RESUMO

BACKGROUND: Rheumatic diseases have a significant adverse impact on the individual from physical, mental and social aspects, resulting in a low health-related quality of life (HRQL). There is a lack of longitudinal studies on HRQL in people with rheumatic diseases that focus on factors promoting HRQL instead of risk factors. The aim of this study was to investigate the associations between suggested health promoting factors at baseline and outcome in HRQL at a 12 month follow-up in people with rheumatic diseases. METHODS: A longitudinal cohort study was conducted in 185 individuals with rheumatic diseases with questionnaires one week and 12 months after rehabilitation in a Swedish rheumatology clinic. HRQL was assessed by SF-36 together with suggested health factors. The associations between SF-36 subscales and the health factors were analysed by multivariable logistic regressions. RESULTS: Factors predicting better outcome in HRQL in one or several SF-36 subscales were being younger or middle-aged, feeling painless, having good sleep structure, feeling rested after sleep, performing low effort of exercise more than twice per week, having strong sense of coherence (SOC), emotional support and practical assistance, higher educational level and work capacity. The most important factors were having strong SOC, feeling rested after sleep, having work capacity, being younger or middle-aged, and having good sleep structure. CONCLUSIONS: This study identified several factors that promoted a good outcome in HRQL to people with rheumatic diseases. These health factors could be important to address in clinical work with rheumatic diseases in order to optimise treatment strategies.


Assuntos
Pesquisas sobre Atenção à Saúde/normas , Indicadores Básicos de Saúde , Qualidade de Vida/psicologia , Doenças Reumáticas/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Comorbidade , Feminino , Pesquisas sobre Atenção à Saúde/estatística & dados numéricos , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Doenças Reumáticas/epidemiologia , Doenças Reumáticas/reabilitação , Adulto Jovem
15.
J Adv Nurs ; 67(6): 1264-72, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21323976

RESUMO

AIM: This paper is a report of a study that explores and describes the meaning of the phenomenon of health-promoting self-care as experienced by people living with rheumatic diseases. BACKGROUND: People with rheumatic diseases estimate health status as low and health belief and health status influence self-care behaviours. Several self-care behaviours are used in the efforts to mitigate the diseases. METHOD: The study had a descriptive phenomenological approach based on a reflective life-world perspective. Data were gathered in 2007 by unstructured open-ended interviews with 12 individuals living with rheumatic diseases. FINDINGS: The meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care takes place against a background of continual hope and belief to influence health in positive ways. Self-care was a way of life and implied being ready to understand and respond to signals from the body. Three inter-related constituents elucidated their experiences: dialogue, power struggle and choice. Self-care was experienced as dialogues with the body and with the immediate environment. In order to respond to signals from the body, power struggles were required to be entered into when fighting the diseases. Choices were required to be made and things that were beneficial for the body were prioritized. CONCLUSION: In this study, the meaning of health-promoting self-care as experienced by people living with rheumatic diseases was that self-care was a way of life. This meant to be ready to understand and respond to signals from the body. Self-care required dialogues, power struggles and choices.


Assuntos
Adaptação Psicológica , Conhecimentos, Atitudes e Prática em Saúde , Promoção da Saúde/métodos , Doenças Reumáticas/enfermagem , Autocuidado/psicologia , Adulto , Idoso , Comportamento de Escolha , Feminino , Comportamentos Relacionados com a Saúde , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Modelos de Enfermagem , Pesquisa Metodológica em Enfermagem , Poder Psicológico , Pesquisa Qualitativa , Doenças Reumáticas/psicologia , Autocuidado/métodos , Autoimagem
16.
J Child Health Care ; 25(1): 31-43, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-32048874

RESUMO

According to the United Nation's Convention of the Rights of the Child, children have the right to participate in their own healthcare and make their opinions heard. The aim of this study was thus to explore the impact of using an eHealth service, Sisom, to gain the children's perspectives during their healthcare appointments. Data were gathered through individual interviews with a purposeful sample of 16 children, aged 6-13 years old, treated for different diseases and using the eHealth service, Sisom, during their healthcare appointments. The interviews were analysed using a constructivist grounded theory. The results showed that using Sisom made children's voice heard by creating a communication space in the healthcare setting. This meant that the children got involved in the communication, were acknowledged as an important person who could give the answers to questions and were given time. Implementing the use of Sisom is a way to make children's needs and preferences explicitly visible for decision-making in practice and thereby supporting the further development of child-centred care in practice.


Assuntos
Comunicação , Telemedicina , Adolescente , Criança , Atenção à Saúde , Família , Teoria Fundamentada , Humanos
17.
Int J Qual Stud Health Well-being ; 15(sup1): 1835138, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33103633

RESUMO

Purpose: Digitalization and e-health have potential to generate good quality, equal health, well-being and to develop and strengthen individuals' resources with the goal of increased independence and participation in society. The implementation of welfare technology requires knowledge of digitalization, as well as an awareness of its meaning in terms of ethical principles and ethical analysis. The purpose of this study was to describe ethical analysis concerning the implementation of welfare technology, in terms of both strategies and tools, within areas of social services in a Swedish municipality. Method: We followed a working model that focused on increased knowledge and experience in the implementation of welfare technology from an ethical perspective. In the data collection were observations, a questionnaire with open-ended questions and focus group discussions used. Results: The analysis showed that when welfare technology was introduced and implemented within the area of social services in a municipality, ethical awareness resulting from the conflicts between various interests and values had to be addressed. Conclusions: The ethical analysis improved implementation of strategies and tools in terms of facts and values, and invisible underlying values to the concept of well-being.


Assuntos
Análise Ética , Qualidade de Vida , Seguridade Social/ética , Serviço Social/ética , Tecnologia/ética , Adulto , Conscientização , Cidades , Tecnologia Digital/ética , Pessoas com Deficiência , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Valores Sociais , Participação dos Interessados , Inquéritos e Questionários , Suécia , Telemedicina/ética , População Urbana
18.
Musculoskeletal Care ; 17(1): 105-112, 2019 03.
Artigo em Inglês | MEDLINE | ID: mdl-30468564

RESUMO

BACKGROUND: Telephone helplines are useful for improving patients' access to healthcare services and reducing the need for frequent face-to-face contact with healthcare professionals. Little is known about how people who phone a helpline perceive the encounter. OBJECTIVES: The aims of the present study were to describe the variation in how callers perceive their encounter with a rheumatology telephone helpline. METHODS: The study had a descriptive, qualitative design and used a phenomenographic approach, comprising 27 semi-structured telephone interviews with callers to Rheuma Direct, a rheumatology telephone helpline with specially trained nurses. The callers comprised 22 women and five men, aged 22-89 years (mean 54 years). RESULTS: The callers phoned Rheuma Direct when they had problems obtaining answers to questions on the internet or from healthcare professionals. Three descriptive categories emerged: constructive dialogue, specialized competence and applicability. The callers perceived that it was a constructive dialogue when they were able to discuss their concerns with someone, received emotional support, felt reassured and were satisfied with the information provided. They perceived specialized competence when the nurses were experienced and skilful, the advice provided complemented previously received information and when they had more knowledge after the call. The callers perceived that Rheuma Direct had applicability because it was easy to access and they could make different choices before, during and after the telephone call. CONCLUSIONS: Callers to a rheumatology telephone helpline perceived it as a valuable complement to other sources of information, and felt that it could provide them with the tools to manage their disease better, as well as future contacts with healthcare professionals.


Assuntos
Aconselhamento , Linhas Diretas , Doenças Reumáticas/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Percepção , Pesquisa Qualitativa
19.
Health Qual Life Outcomes ; 6: 98, 2008 Nov 11.
Artigo em Inglês | MEDLINE | ID: mdl-19014459

RESUMO

BACKGROUND: Many factors are proposed to be associated with health-related quality of life. Knowledge of health factors associated to development of a good health-related quality of life could be of use in clinical practice and public health work. The aim of this study was to investigate the associations between suggested health factors and health-related quality of life at baseline and in an eight-year follow up in subjects with and without chronic musculoskeletal pain in a cohort from a general population. METHODS: The study was designed as a longitudinal study in a Swedish general population (N = 1 849) with a postal questionnaire at baseline 1995 and at follow up 2003. Subjects were divided into two groups, according to their response about chronic musculoskeletal pain at baseline. Health-related quality of life was assessed by the SF-36 together with suggested health factors. The associations between SF-36 subscales and suggested health factors were estimated by OR and 95% CI calculated by multivariable logistic regressions, with adjustment for all health factors, age, sex and baseline SF-36 values. RESULTS: Although subjects without chronic musculoskeletal pain reported better health-related quality of life than subjects with chronic pain, similar health factors were found to be associated to higher scores in SF-36 at baseline and predicted a better outcome in the eight-year follow up. The most consistent finding was a better health outcome in the eight-year follow up for subjects that were feeling rested after sleep. Other factors that in some aspects predicted a better outcome were belonging to higher socioeconomic group, being a native Swede, having emotional support, having good sleep structure, never being or being a former smoker, and regularly drinking alcohol. CONCLUSION: The most important health factor in subjects with and without chronic musculoskeletal pain was feeling rested after sleep, but also emotional support, sleep structure, smoking and alcoholic habits appears to be important components. These health factors could be important to address in clinical work with painful musculoskeletal disorders. Since several health factors are common in both subjects with and without pain there could be a common strategy to be formed in public health programmes.


Assuntos
Nível de Saúde , Doenças Musculoesqueléticas/fisiopatologia , Dor , Qualidade de Vida , Adulto , Idoso , Doença Crônica , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Vigilância da População , Inquéritos e Questionários , Suécia , Adulto Jovem
20.
J Child Health Care ; 21(4): 415-423, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-29110521

RESUMO

Lifestyle factors and behaviours are adopted very early in life and tend to persist throughout life. Considering that the parents are the primary gatekeepers for their child's health, there is a need to gain more knowledge and deeper understanding about what causes parents to act and react in order for early preventive efforts to have any effect. The aim was to explore the parental views and considerations concerning 'child health' among parents with infants 8-10 months old. The sample was strategic and 16 parents (aged 23-41) were recruited from three child health centres in Sweden. Open-ended interviews were conducted and a qualitative, manifest content analysis approach was utilized. The parents described the subject 'child health' as a large, multifaceted concept. Three categories emerged during data analysis: developing a sixth sense, being affected by perceptions and believing health and ill health as a continuum. The parents perceived food and feeding issues as one of the most worrying aspects and a significant indicator of 'child health'. In order to meet the parents on their turf, the 'healthy health message' conveyed needs to take the parental perspective into consideration rather than attempting to educate the parents from predetermined assumption, belief and values.


Assuntos
Saúde da Criança/normas , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Adulto , Pré-Escolar , Feminino , Humanos , Lactente , Estilo de Vida , Masculino , Pesquisa Qualitativa , Suécia
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