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1.
Health Promot Int ; 39(2)2024 Apr 01.
Artigo em Inglês | MEDLINE | ID: mdl-38430507

RESUMO

Low health literacy (HL) has been linked to low self-rated health, reduced efficacy of behaviour change, and challenges in preventing, treating, or managing health conditions. People experiencing homelessness are at risk of poor HL; however, few studies have investigated HL in relation to mental and spiritual well-being among people experiencing homelessness in general, or women experiencing homelessness specifically. This cross-sectional study of 46 women experiencing homelessness in Stockholm, Sweden, recruited during the period October 2019-December 2020, aimed to examine how HL was associated with mental and spiritual well-being among women experiencing homelessness. Participants answered questions about socio-demographic characteristics (age, length of homelessness, education) and digital technology (mobile phone/the Internet) use, in addition to Swedish language versions of three questionnaires administered through structured, face-to-face interviews: the Communicative and Critical Health Literacy Scale, the General Health Questionnaire 12 and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being. Data were analysed using linear regression, which revealed statistically significant associations between HL and mental well-being (p = .009), and between HL and spiritual well-being (p = .022). However, neither socio-demographic characteristics nor digital technology use were significantly associated with HL. In conclusion, promoting HL may improve mental and spiritual well-being in this vulnerable population. An advisory board of women with lived experiences of homelessness (n = 5) supported the interpretation of the findings and emphasised the need to consider HL in relation to basic needs such as 'housing first'. Moreover, health information and services should be accessible to people with different degrees of HL.


Assuntos
Letramento em Saúde , Pessoas Mal Alojadas , Humanos , Feminino , Estudos Transversais , Saúde Mental , Escolaridade
2.
Qual Health Res ; 34(7): 676-690, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38235734

RESUMO

Interviews with individuals experiencing homelessness can be challenging for various reasons, including mental and physical health issues, substance use, and negative experiences with authority figures. Researchers have used photos to facilitate communication and empower participants during data collection. We analyzed data from a previous study to explore the use of researcher-generated photos during interviews about health with 13 women experiencing homelessness. Conversation analysis revealed clear patterns regarding the use of the photos during the interviews. The photos were referred to 118 times over the total interview length, 6 hours and 23 minutes, with the interviewer making 62% of the referrals and the women accounting for 38%. Fifty-nine percent of the referrals occurred within the first 5 minutes of the interviews. The women used the photos to trigger associations and emotions, to describe photo content, or in a minor role during the interview. Interpretations from an advisory board of six women with lived experiences of homelessness suggested that the photos did not engage participants as intended, highlighting the importance of considering participants' perspectives when designing photo-elicitation methods. The feedback also provided valuable insights into interview locations and incentives in research that may have influenced the women's willingness to use the photos. This study emphasizes the importance of understanding the complexity of choosing researcher-generated photos in interviews with underserved, hard-to-reach populations.


Assuntos
Pessoas Mal Alojadas , Entrevistas como Assunto , Fotografação , Pesquisa Qualitativa , Humanos , Pessoas Mal Alojadas/psicologia , Feminino , Adulto , Pessoa de Meia-Idade , Comportamento Cooperativo
3.
BMC Womens Health ; 23(1): 11, 2023 01 10.
Artigo em Inglês | MEDLINE | ID: mdl-36627642

RESUMO

BACKGROUND: Women in homelessness face extreme health- and social inequities. It could be postulated that during societal crises, they become even more vulnerable. Thus, the aim was to explore experiences related to the COVID-19 pandemic among women in homelessness. METHODS: Ten interviews were conducted with women in homelessness, in Stockholm, Sweden, using researcher-driven photo elicitation. The data analysis was guided by the DEPICT model for collaborative data analysis and a qualitative content analysis was performed. A collaborative reference group of women with lived experience of homelessness contributed to the research process through designing the data collection, performing the data analysis, and providing feedback during report writing. RESULTS: For women in homelessness, the COVID-19 pandemic was adding insult to injury, as it significantly affected everyday life and permeated most aspects of existence, leading to diminished interactions with others and reduced societal support. Thus, in an already dire situation, the virus amplified health- and social issues to another level. The women strived to find their balance on the shifting sands of guidelines and restrictions due to the pandemic. Adhering to the new social distancing rules and guidelines in line with the rest of society, was simply impossible when experiencing homelessness. However, for some women the pandemic was nothing but a storm in a teacup. The harsh reality continued irrespectively, living one day at a time and prioritizing provision for basic human needs. CONCLUSIONS: The COVID-19 pandemic and homelessness can be viewed as two intersecting crises. However, the women's aggregated experiences were greater than the sum of experiencing homelessness and meeting the threat of the virus. Gender, exposure to violence, poverty, social isolation, and substance use were additional factors that further marginalized the women during the pandemic. To rebuild a better and more sustainable post-pandemic future for all, global commitment to ending homelessness is crucial. In addition, addressing social determinants of health must be the number one health intervention.


Assuntos
COVID-19 , Pessoas Mal Alojadas , Humanos , Feminino , Pandemias , COVID-19/epidemiologia , Problemas Sociais , Surtos de Doenças
4.
J Med Internet Res ; 25: e43684, 2023 03 13.
Artigo em Inglês | MEDLINE | ID: mdl-36912876

RESUMO

BACKGROUND: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care. OBJECTIVE: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients' use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients. METHODS: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis. RESULTS: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth. CONCLUSIONS: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.


Assuntos
Serviços de Assistência Domiciliar , Telemedicina , Humanos , Cuidados Paliativos/métodos , Telemedicina/métodos , Pessoal de Saúde/psicologia , Etnicidade
5.
Scand J Caring Sci ; 37(4): 959-969, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35187681

RESUMO

BACKGROUND: The population of women in homelessness in Europe is increasing and women in homelessness experience multiple healthcare needs. However, there is insufficient understanding about how perceptions of caring behaviours compare between women in homelessness as patients and nurses in their clinical practice. AIM: This study aimed to investigate perceptions of caring behaviours among women in homelessness, Registered Nurses and nursing students. METHODS: A cross-sectional design was used with convenience sampling to recruit groups of women in homelessness (n = 37), Registered Nurses (n = 92) and nursing students (n = 142) in Stockholm, Sweden. Between August 2019 and December 2020, data were collected through face-to-face interviews or online, using the Caring Behaviours Inventory-24 instrument. Data were analysed using descriptive statistics and group-comparing hypothesis tests. RESULTS: Overall, women in homelessness' perceptions of caring behaviours were significantly lower than nursing students (p < 0.001), who in turn scored significantly lower than Registered Nurses (p < 0.001). The Knowledge and Skill domain had the highest score, and the Connectedness domain had the lowest score in all three groups. The ranking of the individual items according to score varied between the groups. However, all three groups had the highest score for the Knowing how to give shots, IVs, etc., item and the lowest score for the Helping the patient to grow item. CONCLUSION: Healthcare providers and nurse educators should consider incongruences and congruences in caring behaviours to better prepare Registered Nurses and nursing students to contribute to increased health equity, and more targeted clinical practice for women in homelessness.


Assuntos
Pessoas Mal Alojadas , Enfermeiras e Enfermeiros , Recursos Humanos de Enfermagem Hospitalar , Estudantes de Enfermagem , Humanos , Feminino , Estudos Transversais , Empatia , Relações Enfermeiro-Paciente , Inquéritos e Questionários
6.
BMC Womens Health ; 22(1): 159, 2022 05 11.
Artigo em Inglês | MEDLINE | ID: mdl-35546674

RESUMO

BACKGROUND: Women experiencing homelessness have complex and multifaceted healthcare needs and yet they are an underserved population across healthcare services. Nurses are trained to perform an integral role in the provision of equitable healthcare and their attitudes towards homelessness may therefore influence the care that women experiencing homelessness receive. This study aimed to examine correlations between attitudes towards homelessness and caring behaviours, and to test if these correlations differed between the groups of women experiencing homelessness, registered nurses, and nursing students. METHODS: A cross-sectional design using convenience sampling was used to recruit women experiencing homelessness (n = 37), registered nurses (n = 90), and nursing students (n = 138) in Stockholm, Sweden between August 2019 and December 2020. The participants answered two questionnaires: the Attitudes Toward Homelessness Inventory and the Caring Behaviours Inventory-24. Correlations between ordinal variables were calculated using Spearman's rank correlation ρ. Tests of equality between two independent correlations were performed using a Z-test applied to Fisher's z-transformed correlations. An advisory board of women with lived experience of homelessness supported the interpretation of the results. RESULTS: Weak, negative correlations were identified between the Attitudes Toward Homelessness Inventory and Caring Behaviours Inventory-24. The Attitudes Toward Homelessness Inventory mean total scores (SD) were 4.1 (0.6), 4.2 (0.6), 4.1 (0.5) points for the women experiencing homelessness, registered nurse, and nursing student groups, respectively, with the corresponding scores for the Caring Behaviours Inventory-24 being 4.1 (1.1), 5.2 (0.5), 4.8 (0.7) points, respectively. CONCLUSIONS: To promote equitable health for women experiencing homelessness, healthcare providers and nurse educators should consider the role of stigmatising attitudes in relation to caring behaviours.


Assuntos
Pessoas Mal Alojadas , Estudantes de Enfermagem , Atitude , Atitude do Pessoal de Saúde , Estudos Transversais , Feminino , Humanos , Inquéritos e Questionários
7.
J Clin Nurs ; 31(21-22): 3165-3177, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34850477

RESUMO

AIMS AND OBJECTIVES: The aim was to explore RNs' experiences of caring for patients with eating deficiencies in palliative care. BACKGROUND: Food and mealtimes are fundamental aspects for wellbeing and social interactions. The worldwide trajectory of ageing populations may result in increased need for palliative care. Everyday life with chronic life limiting illness and eating deficiencies is challenging for patients and families. RNs are key care providers at end-of-life. DESIGN: A qualitative study with an inductive approach was used. METHODS: Nineteen experienced RNs in palliative care were interviewed through telephone; interviews were audio recorded and transcribed verbatim. Inductive qualitative content analysis was performed, and the COREQ checklist was used to guide proceedings. RESULTS: The overarching theme, Supporting persons with eating deficiencies in-between palliative care and end-of-life care, is represented by three sub-themes: Easy to stick with doing, Just being, without doing, is hard and Letting go. Near end-of-life, eating symbolized social belonging and quality of life for RNs, whereas for patients and families, eating symbolized life. RNs tried practical solutions, however, not always according to patients' and families' preferences. CONCLUSIONS: RNs were well prepared to tackle physical inconveniences and provide support, however, less prepared to encounter existential, psychological and social issues in relation to eating deficiencies. Although RNs stated that human beings stop eating when they are about to die, letting nature run its' course and facilitating patients' transition to end-of-life care was challenging. RELEVANCE TO CLINICAL PRACTICE: Food and mealtimes represent fundamental aspects of human life and denote central parts in RNs clinical practice in palliative care. The findings can inspire development of a comprehensive palliative care approach to support patients and families. Structured reflection in relation to clinical practice may support and encourage RNs, caring for patients with eating deficiencies, in mastering both doing and being.


Assuntos
Enfermeiros Clínicos , Assistência Terminal , Morte , Humanos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Assistência Terminal/psicologia
8.
J Clin Nurs ; 31(21-22): 3190-3199, 2022 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34837292

RESUMO

AIMS AND OBJECTIVES: To explore hospital nurses' experience assessing changes in the health status of stem-cell transplanted patients in home care (HC). BACKGROUND: Stem-cell transplanted patients in HC are treated at home instead of in hospital wards. Hospital nurses visit patients daily and play a key role in assessing the patients' health status. Previous studies on HC for stem-cell transplanted patients focus mainly on safety in HC versus hospital care. No studies regarding nurses' experience assessing patients' health status at home when patients undergo stem-cell transplantation were found. DESIGN: Qualitative study with an explorative design. METHODS: Data were collected via 14 individual semi-structured interviews with hospital nurses working with stem-cell transplanted patients in HC. Data were analysed using systematic text condensation. The reporting of the study was guided by the COREQ checklist. RESULTS: Three categories emerged from the data analysis: 1) Effective communication and clinical intuition enhances the assessment of patients' general health condition; 2) It is challenging to rely on one's own judgment in remote assessment; and 3) There are key facilitators in performing remote clinical assessments. CONCLUSIONS: Effective communication and clinical intuition enhanced the assessment of patients' general health conditions. The lack of physical presence during remote assessments made using clinical intuition in the assessment process difficult. Experience with hematopoietic stem-cell transplantation was seen as important to facilitate accurate remote clinical assessments. RELEVANCE TO CLINICAL PRACTICE: Nurses with responsibility for hospital at-home telephone care should receive training in remote communication and should shadow hospital at-home nurses during in home visits to gain experience assessing patients' health status. Telehealth aspects such as videoconferencing and remote patient monitoring should be considered for more accurate remote assessment. This could potentially result in more effective assessments and reduced readmissions and could promote nurses' confidence in their assessments.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Serviços de Assistência Domiciliar , Enfermeiras e Enfermeiros , Nível de Saúde , Hospitais , Humanos , Pesquisa Qualitativa
9.
Death Stud ; 46(7): 1741-1749, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-33252318

RESUMO

The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.


Assuntos
Cardiopatias Congênitas , Mães , Criança , Feminino , Humanos , Pais , Grupo Associado , Pesquisa Qualitativa , Grupos de Autoajuda , Apoio Social
10.
Nurs Health Sci ; 24(4): 820-827, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36053985

RESUMO

The aim of this study was twofold: to illuminate registered nurses' experiences of palliative care and of caring for patients transitioning from curative to palliative care in hospitals. A qualitative descriptive design was used. Group interviews were conducted with 11 registered nurses in three different hospital settings. Content analysis was performed. The results are presented in four themes: "Understanding palliative care in a hospital setting"; "Involving, supporting, and caring for patients and families"; "Striving for consensus and common goals of care"; and "Struggling with the hospital environment." The registered nurses described struggling with the interpretation of palliative care and with how to transfer it into clinical practice in their specific care settings. Teamwork and collaboration were challenging and goals of care incongruent within the team. Further implementation of a palliative care approach, with core components symptom relief, teamwork, communication and relationship, and family support, is crucial to improve both patient care and the conditions enabling registered nurses to provide good care for the patients and their families in hospital settings.


Assuntos
Enfermeiras e Enfermeiros , Cuidados Paliativos , Humanos , Pesquisa Qualitativa , Pacientes , Hospitais
11.
Hum Resour Health ; 19(1): 11, 2021 01 20.
Artigo em Inglês | MEDLINE | ID: mdl-33472634

RESUMO

BACKGROUND: Patients' health and wellbeing are promoted when nurses successfully conceptualize caring in clinical practice. Measuring caring behaviors can advance knowledge about caring and has potential to improve caring practices and the outcomes of care. The Caring Behaviors Inventory-24 (CBI-24) is an empirical instrument for measuring caring, developed to determine perceptions of caring among patients and nurses. Since the instrument was not available in Swedish, the aim of this study was therefore to translate into Swedish and cross-culturally adapt CBI-24 for a Swedish healthcare context, and to psychometrically analyze the Swedish version of CBI-24. METHODS: The study used a traditional forward and back translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews, and (6) psychometric evaluations. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential and conceptual equivalence. The cognitive interviews generated thoughts and reflections, which resulted in adjusting three items of the CBI-24 SWE. For psychometric analyses, 234 persons answered the questionnaire. Results indicated acceptable overall model fit in the χ2-value for the confirmatory factor analysis, while for the heuristic goodness-of-fit indices, the comparative fit index (CFI) and the standardized mean square residual (SMSR) indicated good model fits, and the root mean square error approximation (RMSEA) indicated an acceptable fit. CONCLUSIONS: CBI-24 SWE has been shown to be a psychometrically acceptable instrument for use in Swedish research contexts. Further studies regarding the clinical usefulness of the instrument may be in order. In particular, CBI-24 SWE should be evaluated among nurses in rural areas.


Assuntos
Comparação Transcultural , Traduções , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Suécia
12.
J Adv Nurs ; 77(11): 4400-4413, 2021 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-34133759

RESUMO

AIM: To describe and synthesise experiences of food and mealtimes from the perspective of patients with chronic life-limiting disease. DESIGN: A mixed-method systematic review. DATA SOURCES: The databases Academic Search Complete, CINAHL, Nursing and Allied Health Database, PsycINFO, PubMed, Soc Index and Web of Science Core Collection were searched (January 2000 to March 2019). REVIEW METHODS: Out of 3151 identified articles, 24 were included for appraisal and synthesis, using a data based convergent design. RESULTS: Four themes were derived: 'understanding hampered eating-perhaps it is best to let nature run its course'; 'food and meals evoke distress-reducing joy, testing interim ways'; 'struggling with food and meals-eating to please others and to postpone death'; and 'food and meals as caring and love-flanked by social disconnecting'. CONCLUSION: For patients with chronic life-limiting disease, food entailed potential to remain healthy, improve well-being and prolong life. Meanwhile, eating difficulties were experienced as fundamentally affecting social life and interactions; consequently, joy around food and meals was lost.


Assuntos
Doença Crônica , Serviços de Alimentação , Humanos , Refeições
13.
Worldviews Evid Based Nurs ; 18(1): 42-49, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33280243

RESUMO

BACKGROUND: Homelessness is an increasing problem worldwide, and the origins of homelessness in high-income countries are multifaceted. Due to stigma and discrimination, persons in homelessness delay seeking health care, resulting in avoidable illness and death. The Attitudes Towards Homelessness Inventory (ATHI) was developed to cover multiple dimensions of attitudes toward persons in homelessness and to detect changes in multiple segments of populations. It has, however, not previously been translated to Swedish. AIMS: The aim of the present study was to translate, cross-culturally adapt, and psychometrically test the ATHI for use in a Swedish healthcare context. METHODS: The project used a traditional forward- and back-translation process in six stages: (1) two simultaneous translations by bilingual experts; (2) expert review committee synthesis; (3) blind back-translation; (4) expert review committee deliberations; (5) pre-testing with cognitive interviews including registered nurses (n = 5), nursing students (n = 5), and women in homelessness (n = 5); and (6) psychometric evaluations. The final ATHI questionnaire was answered by 228 registered nurses and nursing students in the year 2019. RESULTS: The translation process was systematically conducted and entailed discussions regarding semantic, idiomatic, experiential, and conceptual equivalence. Confirmatory factor analysis was used to examine if the collected data fitted the hypothesized four-factor structure of the ATHI. Overall, it was found that the model had an acceptable fit and that the Swedish version of ATHI may be used in a Swedish healthcare context. LINKING EVIDENCE TO ACTION: The ATHI has been shown to be a psychometrically acceptable research instrument for use in a Swedish healthcare context. The systematic and rigorous process applied in this study, including experts with diverse competencies in translation proceedings and testing, improved the reliability and validity of the final Swedish version of the ATHI. The instrument may be used to investigate attitudes toward women in homelessness among nursing students and RNs in Sweden.


Assuntos
Atitude do Pessoal de Saúde , Pessoas Mal Alojadas/psicologia , Psicometria/normas , Estudantes de Enfermagem/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria/instrumentação , Psicometria/métodos , Reprodutibilidade dos Testes , Estudantes de Enfermagem/estatística & dados numéricos , Inquéritos e Questionários , Suécia , Tradução
14.
BMC Palliat Care ; 19(1): 158, 2020 Oct 14.
Artigo em Inglês | MEDLINE | ID: mdl-33054746

RESUMO

BACKGROUND: With a growing world population, a longer life expectancy, and more deaths due to chronic diseases, the need for palliative care is increasing. Palliative care aims to alleviate suffering and to promote well-being for patients with progressive, incurable disease or injury. E-Health entails using of information and communication technology for healthcare provision. It is unclear to how patients experience use of eHealth technology within palliative care. METHODS: The aim of this study was to describe patients' experiences of eHealth in palliative care. A systematic integrative review was performed using six databases: Cinahl Complete; MEDLINE; PubMed; Psychology and Behavioral Sciences Collection; Nursing and Allied Health; and PsycINFO. Twelve studies met the inclusion criteria of adult patients in palliative care, English language, published 2014-2019: comprising 397 patients. Six studies were from European countries, four from North America, one from South America and one from Oceania. Seven were feasibility or pilot studies. RESULTS: The findings are synthesized in the main theme: E-health applications - promoting communication on patients' and families' terms, and three sub- themes: usability and feasibility of eHealth applications; symptom control and individualized care; and use of eHealth applications increased sense of security and patient safety. Patients' experiences were that eHealth promoted individualized care, sense of security, better symptom management and participation in care. Communication was facilitated by the inherent flexibility provided by technology. CONCLUSIONS: E-Health applications seem promising in promoting equal, individualized care, and may be a tool to endorse accessibility and patient participation in palliative care settings. Indications are that eHealth communication resulted in patients and families receiving more information, which contributed to experiences of patient safety and feelings of security. At organizational and societal levels, eHealth may contribute to sustainable development and more efficient use of resources.


Assuntos
Cuidados Paliativos/métodos , Telemedicina/métodos , Humanos , Cuidados Paliativos/psicologia , Satisfação do Paciente , Ensaios Clínicos Controlados Aleatórios como Assunto
15.
J Med Internet Res ; 22(5): e16218, 2020 05 05.
Artigo em Inglês | MEDLINE | ID: mdl-32369037

RESUMO

BACKGROUND: Telehealth is increasingly being used in home care and could be one measure to support the needs of home-based patients receiving palliative care. However, no previous scoping review has mapped existing studies on the use of telehealth for patients in palliative home care. OBJECTIVE: The aim of this study was to map and assess published studies on the use of telehealth for patients in palliative home care. METHODS: A scoping review was conducted using the methodological framework of Arksey and O'Malley. Reporting was guided by Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews. A systematic and comprehensive search of Medical Literature Analysis and Retrieval System Online, EMBASE, PsycINFO, and Cumulative Index to Nursing and Allied Health was performed for studies published between January 2000 and October 2018. Two authors independently assessed eligibility and extracted data. RESULTS: The review included 22 papers from 19 studies. Four thematic groupings were identified among the included papers: easy and effortless use of telehealth regardless of the current health condition, visual features that enhance communication and care via telehealth, symptom management and self-management promotion by telehealth, and perceptions of improved palliative care at home. CONCLUSIONS: The use of telehealth in palliative home care seems to be feasible, improving access to health care professionals at home and enhancing feelings of security and safety. The visual features of telehealth seem to allow a genuine relationship with health care professionals. However, there are contradicting results on whether the use of telehealth improves burdensome symptoms and quality of life. Future research should investigate the experiences of using telehealth among patients with life-limiting illness other than cancer and patients aged 85 years or older. More research is needed to increase the body of knowledge regarding the effectiveness of telehealth on symptoms and quality of life.


Assuntos
Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Telemedicina/métodos , Idoso de 80 Anos ou mais , Humanos
16.
J Adv Nurs ; 76(12): 3528-3536, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-33009854

RESUMO

AIM: To explore experiences of peer support among parents of children with congenital heart defects. DESIGN: A study analysing written responses to open-ended questions about peer support, collected via an online survey distributed in Sweden. METHODS: Respondents were recruited during 3 months in 2018 by means of convenience sampling, through ads via the Swedish foundation for families with children who have heart defects and two closed Facebook groups for peer support. An online survey containing open-ended questions was distributed and responses were analysed with systematic text condensation. RESULTS: Peer support was grounded in a mutual understanding among parents and involved highly appreciated emotional support. Listening to the stories of peers meant an opportunity to gain useful insights about what life is like for parents of children with heart defects. Receiving and providing peer support was described as rewarding on a personal level. Negative aspects of peer support were also described, which sometimes led to psychological distress and withdrawal from peer support activities. CONCLUSION: Peer support is emotionally relieving and appreciated among parents of children with congenital heart defects, who consider providing the support a rewarding responsibility. While peer support activities may have considerable benefits for individuals, it may also lead to psychological distress for some. IMPACT: This study addressed peer support among parents of children with congenital heart defects. The main findings illustrate the potential impact peer support can have on individuals and calls attention to the experienced benefits related to peer support activities, while also providing some insights regarding potential negative aspects. The findings have relevance for nurses, midwives, and other health professionals working in settings providing care for these families.


Assuntos
Cardiopatias Congênitas , Apoio Social , Criança , Humanos , Pais , Inquéritos e Questionários , Suécia
17.
J Nurs Manag ; 28(1): 102-111, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31868284

RESUMO

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.


Assuntos
Serviços de Assistência Domiciliar/tendências , Liderança , Cuidados Paliativos/métodos , Adulto , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/tendências , Pesquisa Qualitativa , Suécia
18.
J Interprof Care ; 33(5): 504-511, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30485125

RESUMO

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos , Equipe de Assistência ao Paciente , Especialização , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Relações Interprofissionais , Masculino , Pessoa de Meia-Idade , Equipe de Assistência ao Paciente/normas , Inquéritos e Questionários , Suécia
19.
Eur J Cancer Care (Engl) ; 27(6): e12948, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30298967

RESUMO

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.


Assuntos
Cuidadores/psicologia , Serviços de Assistência Domiciliar , Neoplasias/enfermagem , Cuidados Paliativos , Equipe de Assistência ao Paciente , Idoso , Idoso de 80 Anos ou mais , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Suécia
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