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BACKGROUND: Documentation of older people's end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care. METHODS: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis. RESULTS: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients' autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found. CONCLUSIONS: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people's patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients' thoughts and concerns may remain unknown to healthcare professionals.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Idoso , Cuidados Paliativos/psicologia , Estudos Retrospectivos , Assistência Terminal/psicologia , Solidão/psicologia , MorteRESUMO
BACKGROUND: Breast cancer (BC) and related treatment are associated with the risk of developing a wide range of persistent disabling impairments. Despite extensive research in the field and an enhanced focus on BC rehabilitation, up to 34-43% of these patients are at risk of developing chronic distress. In addition, it is known that these patients repeatedly report unmet needs, which are strongly associated with reduced quality of life. However, despite knowledge that patients' needs for support during BC rehabilitation varies greatly, individualized rehabilitation is often lacking. Therefore, this study aimed to explore health care professionals' (HCPs) experiences of current rehabilitation practice and describe current barriers and facilitators for individualized rehabilitation for patients following BC treatment. METHODS: A total of 19 HCPs were included, representing various professions in BC care/rehabilitation within surgical, oncological and specialized cancer rehabilitation units at a university hospital in Sweden. Five semi structured focus group interviews were conducted and inductively analysed using conventional qualitative content analysis. RESULTS: Three categories were captured: (1) varying attitudes towards rehabilitation; (2) incongruence in how to identify and meet rehabilitation needs and (3) suboptimal collaboration during cancer treatment. The results showed a lack of consensus in how to optimize individualized rehabilitation. It also illuminated facilitators for individualized rehabilitation in terms of extensive competence related to long-term experience of working with patients with BC care/rehabilitation. Further, the analysis exposed barriers such as a great complexity in promoting individualized rehabilitation in a medically and treatment-driven health care system, which lacked structure and knowledge, and overarching collaboration for rehabilitation. CONCLUSION: This study suggests that the cancer trajectory is medically and treatment-driven and that rehabilitation plays a marginal role in today's BC trajectory. It also reveals that structures for systematic screening for needs, evidence-based guidelines for individualized rehabilitation interventions and structures for referring patients for advanced rehabilitation are lacking. To enable optimal and individualized recovery for BC patients', rehabilitation needs to be an integrated part of the cancer trajectory and run in parallel with diagnostics and treatment.
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Neoplasias da Mama/reabilitação , Acessibilidade aos Serviços de Saúde , Recursos Humanos em Hospital/psicologia , Feminino , Grupos Focais , Hospitais Universitários , Humanos , Pesquisa Qualitativa , SuéciaRESUMO
The aim of this study was to explore patients' experiences of using the Integrated Palliative care Outcome Scale (IPOS) during specialized palliative home care. The study adopted a qualitative approach with an interpretive descriptive design. Interviews were performed with 10 patients, of whom a majority were diagnosed with incurable cancer. Our findings suggest that the use of IPOS as a basis for conversation promotes safe care by making the patients feel confident that the care provided was adapted to them which gives them a sense of safety. IPOS facilitated discussions between patients and nurses about care needs. The patients believed that using IPOS enabled reflection on their well-being and life situation. In conclusion, the study finds that using IPOS is beneficial and provide ways to enable person-centered care and with advantage could be used in specialized palliative home care. The results may help overcome barriers and facilitate the use of patient-reported outcome measures (PROMs). To enable the use of PROMs such as IPOS in palliative home care, nurses need education and opportunities to develop routines that enable patients' voice to be heard and thereby compose a basis for care.
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Serviços de Assistência Domiciliar , Cuidados Paliativos/psicologia , Medidas de Resultados Relatados pelo Paciente , Assistência Centrada no Paciente , Idoso , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Direito a MorrerRESUMO
OBJECTIVE: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings. METHOD: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed. RESULT: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS. SIGNIFICANCE OF RESULTS: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.
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Avaliação das Necessidades/classificação , Cuidados Paliativos/normas , Resultado do Tratamento , Idoso , Idoso de 80 Anos ou mais , Distribuição de Qui-Quadrado , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades/estatística & dados numéricos , Cuidados Paliativos/classificação , Cuidados Paliativos/estatística & dados numéricos , Pesquisa QualitativaRESUMO
OBJECTIVES: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. METHOD: Data were collected through individual narrative interviews with 23 people 76-101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL. RESULT: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as 'being disconnected from life'. CONCLUSION: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one's thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.
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Idoso Fragilizado/psicologia , Solidão/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Narrativas Pessoais como Assunto , Pesquisa QualitativaRESUMO
OBJECTIVE:: Homecare workers play a pivotal role in palliative care, but research on their experiences is limited. The aim of this study was to describe how homecare workers in Sweden experience their work in palliative homecare. METHOD:: This qualitative study used open-ended interviews with a purposive sample of 15 homecare workers. The data was analysed by means of qualitative content analysis. RESULTS:: One main theme emerged from the analysis: upholding an ideal image of palliative work. This had four subthemes: doing good; doing their best work; feeling work satisfaction; and facing difficulties. CONCLUSION:: Palliative care performed by homecare workers is demanding. Homecare workers need more practical support and would benefit from a care model that involves working with registered nurses, as a team, to provide humanistic care to dying patients and their relatives.
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Serviços de Assistência Domiciliar , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Satisfação no Emprego , Equipe de Assistência ao Paciente , Adulto , Idoso , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Suécia , Adulto JovemRESUMO
BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context. METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care. RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important. CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.
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Assistência à Saúde Culturalmente Competente/métodos , Cuidados Paliativos/métodos , Psicometria/normas , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Psicometria/instrumentação , Psicometria/métodos , Inquéritos e Questionários , Suécia , TraduçãoRESUMO
OBJECTIVES: The aim was to investigate the effects of an intervention that applies a palliative care approach in residential care upon nurse assistants' level of strain, job satisfaction, and view of leadership. METHOD: A quasi-experimental, pretest and posttest design was used. Study circles with workshops involving nurse assistants (n = 75) and their superiors (n = 9) focusing on emotional and existential issues in palliative care were evaluated using a questionnaire answered by the nurse assistants at baseline (November 2009), post-intervention (May 2010), and six-month follow-up (November 2010) in comparison with controls (n = 110). RESULTS: Directly after the intervention, the job satisfaction of the nurse assistants decreased and they perceived the leadership more negatively than before the intervention. Six months later, strain as a result of criticism from residents and their superiors and having difficulty in balancing emotional involvement had decreased. SIGNIFICANCE OF RESULTS: The intervention initially seemed to decrease the well-being of the nurse assistants, which could be the result of their increased awareness of the residents' and relatives' needs, in combination with limited support. More emphasis should be placed on the role of leadership when implementing changes in practice.
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Assistentes de Enfermagem/educação , Cuidados de Enfermagem/métodos , Cuidados Paliativos/métodos , Instituições Residenciais/métodos , Adulto , Atitude do Pessoal de Saúde , Feminino , Humanos , Satisfação no Emprego , Masculino , Pessoa de Meia-Idade , Ensaios Clínicos Controlados não Aleatórios como Assunto , Assistentes de Enfermagem/tendências , Cuidados Paliativos/estatística & dados numéricos , Inquéritos e Questionários , SuéciaRESUMO
BACKGROUND: A palliative care approach aims to integrate psychosocial and existential as well as relationship aspects in the care and is an approach that can be used in residential care. Nurse assistants are the ones who are closest to the residents but have limited prerequisites for working in accordance with the palliative care approach. We aimed to investigate the effects on nurse assistants' experiences of care provision and the caring climate of an intervention applying a palliative care approach in residential care. METHODS: An intervention involving nurse assistants (n = 75) and their leaders (n = 9), in comparison with controls (n = 110), was evaluated using a questionnaire at three points in time. RESULTS: In the intervention group, positive effects were seen concerning the nurse assistants' reports of the care provision in that they focused more on the residents' stories about their lives and on communicating with the residents about what gave meaning to their lives. Also, negative effects were seen when the nurse assistants rated that the residents' needs for medical and nursing care had not been met at the facility directly after the intervention. No effects were seen concerning the caring climate or the prerequisites of providing more person-centred care. CONCLUSION: The intervention seemed to have encouraged the nurse assistants to focus on relationship aspects with the residents. So as not to jeopardise the NAs' well-being and to support NAs in keeping themselves involved in existential issues, their support most certainly needs to be continuous and ongoing. However, in spite of the leaders' involvement, the intervention was not sufficient for changing the organisational prerequisites for more person-centred care.
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Assistentes de Enfermagem/psicologia , Casas de Saúde , Cuidados Paliativos , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , SuéciaRESUMO
PURPOSE: The aim was to explore nurse assistants´ experiences of paying attention to and encountering patients receiving municipal health and social care, who are in grief due to the death of a loved one. METHODS: A qualitative study with focus group interviews (n = 6) was conducted with nurse assistants (NAs) (n = 28) in municipal health and social care (n = 5) in southern Sweden. The data were analysed inductively using qualitative content analysis. RESULTS: Three categories (1) Noticing changes in the patient, (2) Using different strategies to create a dialogue with the patient, (3) Experiencing challenges when encountering patients in grief, included eight sub-categories were identified. The result is captured in the theme of Having to be attentive to signs of grief after patients´ loss of loved ones, sensing the right time to approach and comfort, while having to cope with emotional challenges. CONCLUSIONS: The NAs encountered expressions of strong emotions from patients in grief, and even expressions of a desire to end their lives. Additionally, the NAs had to deal with their own emotions that were evoked when meeting patients in grief. These challenges indicate the need for enhanced conditions in the work culture, and improved training and supervision in health and social care.
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Emoções , Pesar , Humanos , Pesquisa Qualitativa , Grupos Focais , Apoio SocialRESUMO
The aim was to explore existential loneliness in different long-term care contexts as narrated by older people. A qualitative secondary analysis was performed of 22 interviews with older people in residential care, home care, and specialized palliative care. The analysis started with naive reading of interviews from each care context. As these readings showed similarity with Eriksson's theory of the suffering human being, the three different concepts of suffering were used as an analytic grid. Our result indicates that suffering and existential loneliness are interrelated for frail older people. Some situations and circumstances that trigger existential loneliness are the same in the three care contexts while others differ. In residential and home care, unnecessary waiting, not feeling at home and not being encountered with respect and dignity can trigger existential loneliness while seeing and hearing others suffering can give rise to existential loneliness in residential care. In specialized palliative care, feelings of guilt and remorse are prominent in relation to existential loneliness. In conclusion, different healthcare contexts have various conditions for providing care that meet the existential needs of older people. Hopefully our results will be used as a basis for discussions in multi-professional teams and among managers.
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Solidão , Narração , Humanos , Idoso , Emoções , Existencialismo , CulpaRESUMO
AIM: To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care. DESIGN: This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting. METHODS: Five focus groups were conducted with nurses from four specialized palliative care units, and the discussions were analysed with quality content analysis. RESULTS: Using IPOS for communication with the patient gave an opportunity to understand the patient's care needs and to let these care needs guide care interventions. Prerequisites in terms of relation, atmosphere, skills and flexibility were needed to establish an interactive communication. It was challenging to communicate about issues that evoked emotional reactions in the patient. There was a balancing act between the use of a structured scale and overcoming communication challenges. Nonetheless, when the two complemented each other, IPOS was a useful tool for nurses to promote person-centred care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Enfermeiras e Enfermeiros , Humanos , Cuidados Paliativos/psicologia , Grupos Focais , Pesquisa QualitativaRESUMO
Introduction: Health care professionals (HCPs) encounter different forms of loneliness in their work. It is essential that they have the courage, skills, and tools to deal with loneliness, in particular with existential loneliness (EL) which relates to meaning in life and the fundamentals of living and dying. Aim: The aim of this study was to investigate HCPs' views on loneliness among older people and their understanding, perception, and professional experience of EL in older people. Materials and Methods: In all, 139 HCPs from five European countries participated in audio-recorded focus group and individual interviews. The transcribed materials were locally analyzed using a predefined template. The participating countries' results were then translated, merged, and inductively analyzed using conventional content analysis. Results: Participants described different forms of loneliness - a negative form that is unwanted and causes suffering, and a positive form where solitude is desired and sought. The results showed that the HCPs' knowledge and understanding of EL varied. The HCPs mainly related EL to different types of loss, eg loss of autonomy, independence, hope, and faith, and to concern alienation, guilt, regret and remorse, and concerns about the future. Discussion and Conclusions: The HCPs expressed a need to improve their sensitivity and self-confidence to engage in existential conversations. They also stated the need to increase their knowledge and understanding of aging, death, and dying. Based on these results, a training program aimed to increase knowledge and understanding of older people's situation has been developed. The program includes practical training in conversations about emotional and existential aspects, based on recurrent reflections on the topics presented. The program is available at: www.aloneproject.eu.
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The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients. In interviews, participants selected their top 10 from a deck of 46 statement cards. Descriptive and analytical statistics were used. Thirty-nine patients from 5 specialized palliative care units in Sweden participated. Six participants died within 1 month of the interviews. "To be free from pain" was ranked as the highest priority by the majority, and "To have staff I feel comfortable with" was ranked highest by the 6 most ill participants. A deck of cards with the 20 statements most chosen by patients receiving palliative care was created. The cards cover physical, psychological, social, existential, and practical aspects and are helpful for formulating goals of care for patients and informing the development of a core outcome set for palliative care.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Comunicação , Morte , Humanos , Cuidados Paliativos/psicologiaRESUMO
To avoid discomfort, health care professionals may hesitate to pursue conversations about end of life with patients. Certain tools have the potential to facilitate smoother conversations in this matter. The objective was to explore the experiences of patients in palliative care in using statement cards to talk about their wishes and priorities. Forty-six cards with statements of wishes and priorities were developed and tested for feasibility with 40 participants, who chose the 10 most important cards and shared their thoughts about the statements and conversation. Data from individual interviews and field notes were analyzed using content analysis. One category describes practical aspects of using the cards including the relevance of the content and the process of sorting the cards. The second category describes the significance of using the cards including becoming aware of what is important, sharing wishes and priorities, and reflecting on whether wishes and priorities change closer to death. The cards helped raise awareness and verbalize wishes and priorities. All statements were considered relevant. The conversations focused not only on death and dying, but also on challenges in the participants' current life situation. For the most ill and frail participants, the number of cards needs to be reduced.
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Comunicação , Prioridades em Saúde , Cuidados Paliativos/métodos , Relações Profissional-Paciente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Cuidados Paliativos/normas , Pesquisa QualitativaRESUMO
The aim of this study was to demonstrate how people with incurable cancer experienced soft massage in a palliative care setting in which massage was used as an established and integrated part of the nursing care. To reach a deep understanding of the experiences of receiving soft massage a qualitative method with a phenomenological approach was chosen. The study was based on interviews with eight patients in an advanced home care setting who had all received soft massage as part of their daily care. Soft massage was experienced by the informants as a way to find inner peace. During the massage the patients felt dignified, while memories from past massage sessions were about becoming free. These experiences of dignity and freedom brought hopes for the future. The conclusion is that soft massage ought to be offered in the ordinary palliative care. More research is needed to understand what is needed to integrate and establish methods such as soft massage in the palliative care.
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Atitude Frente a Saúde , Massagem/psicologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Idoso , Idoso de 80 Anos ou mais , Enfermagem em Saúde Comunitária/métodos , Feminino , Saúde Holística , Serviços de Assistência Domiciliar , Humanos , Masculino , Massagem/métodos , Massagem/enfermagem , Memória , Pessoa de Meia-Idade , Neoplasias/enfermagem , Pesquisa Metodológica em Enfermagem , Enfermagem Oncológica/métodos , Cuidados Paliativos/métodos , Satisfação Pessoal , Filosofia em Enfermagem , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.
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Idoso Fragilizado/psicologia , Solidão/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
BACKGROUND: Nurse assistants working in residential care facilities need support to ensure that they provide high-quality care for the residents and support for relatives, from admission to bereavement. AIM: The aim was to describe the nurse assistants' experience of how an intervention with a palliative care approach, had influenced them in their work in residential care for older people. PARTICIPANTS: Fourteen nurse assistants working in three different municipal residential care facilities. METHODS: Data were collected by means of semi-structured individual interviews following an intervention consisting of study circles combined with workshops. The data were analysed using content analysis. RESULT: The nurse assistants felt that, through the intervention, they had gained insight into their understanding of the importance of quality of care. This included an increased awareness of, and respect for, residents' and relatives' needs, and an increased understanding of the importance of the outcome of encounters with residents and their relatives. After the intervention, they also felt there was increased openness and understanding between colleagues. However, the nurse assistants also expressed frustration over obstacles to implementing a palliative care approach, such as lack of resources and supportive leadership. CONCLUSION: The nurse assistants felt that the intervention was positive and encouraged them to provide more person-centred care within the framework of a palliative care approach. Although the intervention was intended to involve and support the management, it was not sufficient. Nurse assistants described lack of resources and supportive leadership. There is, therefore, a need to place greater emphasis on leadership and their support of nurse assistants so that they can provide high-quality care. IMPLICATIONS FOR PRACTICE: To support nurse assistants in the provision of care, clear leadership and opportunities to discuss and reflect on issues associated with care, including systematic improvement work in practice, appear to be essential to ensure high-quality care.
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Enfermagem Geriátrica , Assistentes de Enfermagem , Casas de Saúde , Cuidados Paliativos , Idoso , Idoso de 80 Anos ou mais , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Melhoria de Qualidade , SuéciaRESUMO
There are many instruments assessing the wellbeing of staff, but far from all have been psychometrically investigated. When evaluating supportive interventions directed toward nurse assistants in residential care, valid and reliable instruments are needed in order to detect possible changes. The aim of the study was to investigate validity in terms of data quality, construct validity, convergent and divergent validity and reliability in terms of the internal consistency and stability of the Job Satisfaction Questionnaire, the Psychosocial Aspects of Job Satisfaction, the Strain in Dementia Care Scale (SDCS), and the Stress of Conscience Questionnaire (SCQ) in a residential care context. The psychometric properties of the instruments were investigated in terms of data quality, construct validity, convergent and divergent validity and reliability, including test-retest reliability, in a residential care context with a sample consisting of nurse assistants (n=114). The four instruments responded with different psychometric-related problems such as internal missing data, floor and ceiling effects, problems with construct validity and low test-retest reliability, especially when assessed on the item level. These problems were however reduced or disappeared completely when assessed for total and factor scores. From a psychometric perspective, the SDCS seemed to stand out as the best instrument. However, it should be modified in order to reduce floor effects on item level and thereby gain sensitivity. The Job Satisfaction Questionnaire seemed to have problems both with the construct validity and test-retest reliability. The final choice of instrument must, however, be made dependent on what one intends to measure.
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Satisfação no Emprego , Estresse Psicológico/diagnóstico , Cuidadores/psicologia , Consciência , Demência/terapia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Casas de Saúde , Psicometria , Reprodutibilidade dos Testes , Estresse Psicológico/psicologia , Inquéritos e Questionários/normas , Recursos Humanos , Carga de Trabalho/psicologiaRESUMO
BACKGROUND: Palliative care should be provided, irrespective of setting to all patients facing a life-threatening illness and to their families. The situation and needs of older people differ from those of younger people since they often have several co-existing diseases and health complaints. This implies an extensive need for care and for longer periods of palliative care. The main providers of palliative care for older people are nurse assistants, who are also those with the shortest education. AIM: The aim of this study was to illuminate nurse assistants' experience of palliative care for older people in residential care. DESIGN: The study had an explorative, descriptive design. SETTINGS: Thirteen residential care units in three different districts in a large city in southern Sweden. PARTICIPANTS: Twenty-five nurse assistants selected to represent variations in age, gender workplace and work experience. METHODS: Data were collected from six focus-group interviews and subjected to content analysis to gain an understanding of the phenomenon. RESULTS: The nurse assistants described palliative care as a contrast to the everyday care they performed in that they had a legitimate possibility to provide the care needed and a clear assignment in relation to relatives. Palliative care also meant having to face death and dying while feeling simultaneous that it was unnatural to talk about death and having to deal with their own emotions. They emphasised that they were in need of support and experienced leadership as invisible and opaque, but gained strength from being recognized. CONCLUSION: In order to support nurse assistants in providing high quality end-of-life care, more focus is needed on the trajectory of older peoples' dying, on the importance of involving relatives throughout the period of care provision, and on support when encountering death and dying. There is also a need for engaged care leaders, both registered nurses and managers, to recognize the work of nurse assistants and to support care provision for older people within the framework of palliative care philosophy.