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1.
Nurs Ethics ; 27(1): 104-115, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31104584

RESUMO

Dignity, usually considered an essential ethical value in healthcare, is a relatively complex, multifaceted concept. However, healthcare professionals often have only a vague idea of what it means to respect dignity when providing care, especially for persons with impaired autonomy. This article focuses on two concepts of dignity, human dignity and dignity of identity, and aims to analyse how these concepts can be applied in the care for persons with impaired autonomy and in furthering the practice of respect and protection from harm. Three vignettes were designed to illustrate typical caring situations involving patients with mild to severely impaired autonomy, including patients with cognitive impairments. In situations like these, there is a risk of the patient's dignity being disrespected and violated. The vignettes were then analysed with respect to the two concepts of dignity to find out whether this approach can illuminate what is at stake in these situations and to provide an understanding of which measures could safeguard the dignity of these patients. The analysis showed that there are profound ethical challenges in the daily care of persons with impaired autonomy. We suggest that these two concepts of human dignity could help guide healthcare professionals to develop practical skills in person-centred, ethically grounded care, where the patient's wishes and needs are the starting point.


Assuntos
Análise Ética , Competência Mental , Autonomia Pessoal , Pessoalidade , Respeito , Idoso , Idoso de 80 Anos ou mais , Afasia/psicologia , Disfunção Cognitiva/psicologia , Demência/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inconsciência/psicologia
2.
Scand J Caring Sci ; 32(1): 168-176, 2018 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-28464382

RESUMO

In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.


Assuntos
Adaptação Psicológica , Demência/enfermagem , Demência/psicologia , Família/psicologia , Pacientes/psicologia , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Feminino , Instituição de Longa Permanência para Idosos , Humanos , Masculino , Casas de Saúde , Pesquisa Qualitativa , Suécia
3.
J Clin Nurs ; 26(21-22): 3519-3528, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28042920

RESUMO

AIM AND OBJECTIVE: To illuminate how family members of persons with dementia describe their own experiences, before and after placing their relative in a nursing home. BACKGROUND: In the Western world and with a growing population of older people, the number of persons with dementia increases. Family members often become carers in their own homes creating stressful and exhausting situation that eventually leads to relocating the person to a nursing home. This may lead to troubled conscience among family members. METHOD AND DESIGN: This is a qualitative study with descriptive design based on interviews with ten family members to residents with dementia at one small nursing home ward. Data were analysed using content analysis. RESULTS: Five categories were derived from data: relocating a person with dementia - a responsibility; visiting the resident - a relief or a burden; the participants taking part in and monitoring the residents' care needs; participants meeting their own needs; and thoughts about the future and resident's death. The result shows both positive and negative aspects of being a family member to persons with dementia. Family members described feeling relief as well as having a troubled conscience when placing a relative in a nursing home. They held themselves responsible for monitoring and evaluating the quality of the care. Family members expressed fearing a slow death for the person with dementia as well as for their own sake. Most felt well treated by the staff. CONCLUSION: Family members were responsible for relocating the residents to the nursing home. This in itself was found to cause feelings of moral concerns and generating troubled conscience. RELEVANCE TO CLINICAL PRACTICE: Staff at nursing homes needs to exercise family-centred care to benefit the persons with dementia, their family members and the staff themselves.


Assuntos
Cuidadores/psicologia , Demência/psicologia , Família/psicologia , Casas de Saúde , Idoso , Idoso de 80 Anos ou mais , Emoções , Feminino , Humanos , Institucionalização , Masculino , Pesquisa Qualitativa
4.
Nurs Ethics ; 24(1): 100-110, 2017 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-27660184

RESUMO

BACKGROUND: Ethical problems are a universal phenomenon but rarely researched concerning patients dying from acute stroke. These patients often have a reduced consciousness from stroke onset and thereby lack ability to convey their needs and could be described as 'incompetent' decision makers regarding their own care. OBJECTIVE: The aim of the study was to deepen the understanding of stroke team members' reasoning about truth-telling in end-of-life care due to acute stroke. RESEARCH DESIGN: Qualitative study based on individual interviews utilizing combined deductive and inductive content analysis. Participants and research context: A total of 15 stroke team members working in stroke units of two associated county hospitals in western Sweden participated. Ethical considerations: The study was approved by the Regional Ethics Review Board, Gothenburg, Sweden. FINDINGS: The main findings were the team members' dynamic movement between the categories 'Truth above all' and 'Hide truth to protect'. Honesty was highly valued and considered as a reason for always telling the truth, with the argument of truth as common morality. However, the carers also argued for hiding the truth for different reasons such as not adding extra burden in the sorrow, awaiting a timely moment and not being a messenger of bad news. Withholding truth could both be seen as a way of protecting themselves from difficult conversations and to protect others. DISCUSSION: The results indicate that there are various barriers for truthfulness. Interpreted from a virtue of ethics perspective, withholding of truth might also be seen as an expression of sound judgement to put the patient's best interest first. CONCLUSION: The carers may need support in the form of supervision to be given space to reflect on their experience and thereby promote ethically justified care. Here, the multi-professional team can be of great value and contribute through inter-professional sharing of knowledge.


Assuntos
Pessoal de Saúde/psicologia , Acidente Vascular Cerebral/psicologia , Assistência Terminal/ética , Revelação da Verdade/ética , Adulto , Disfunção Cognitiva/complicações , Disfunção Cognitiva/etiologia , Ética em Enfermagem , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros/psicologia , Médicos/ética , Médicos/psicologia , Pesquisa Qualitativa , Acidente Vascular Cerebral/complicações , Suécia , Assistência Terminal/psicologia
5.
Scand J Caring Sci ; 30(1): 37-47, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-25919130

RESUMO

Living with dementia disease (DD) can include difficulties describing experiences of everyday lives, which can lead to withdrawal, social isolation or existential homelessness. Persons with DD living in nursing homes are mainly dependent on the nurses for establishing and maintaining relationships with those around them. It can be challenging for nurses to understand what a person with DD is trying to express and to make themselves understood in turn. The validation method is intended to facilitate communication with persons with DD, but to our knowledge, there have been no qualitative studies of how this influences persons' communication. This study aimed to illuminate the actions and reactions of persons with DD living in nursing homes in one-to-one conversations with nurses during 1 year of validation method training, as observed in videotapes. Four persons with DD were involved in videotaped conversations with four nurses who were participating in a validation method training programme. Videotapes with at least 5 months between the first and last recording were analysed and compared qualitatively. The findings are presented in four categories that were identified to various degrees in conversations at the beginning and at the end of the programme: being uninterested in or unable to answer questions, talking about more than one topic of conversation at the same time, trying to talk about what is on one's mind and speaking more freely about what is on one's mind. In the videotaped conversations at the end of the programme, the persons had the opportunity to use their remaining communication abilities. This may have been related to the development of the nurses' communication skills during the training programme, and so it is possible that persons with DD could benefit from communicating with nurses trained in the validation method.


Assuntos
Demência/enfermagem , Relações Enfermeiro-Paciente , Casas de Saúde , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Suécia
6.
Palliat Support Care ; 13(5): 1213-22, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25315360

RESUMO

OBJECTIVE: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives. METHOD: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis. RESULT: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable. SIGNIFICANCE OF RESULTS: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.


Assuntos
Atitude Frente a Morte , Dispneia/etiologia , Família/psicologia , Cuidados Paliativos/psicologia , Doença Pulmonar Obstrutiva Crônica/psicologia , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Tosse/etiologia , Progressão da Doença , Feminino , Humanos , Entrevistas como Assunto , Masculino , Cuidados Paliativos/métodos , Doença Pulmonar Obstrutiva Crônica/complicações , Pesquisa Qualitativa , Estudos Retrospectivos , Suécia
7.
Palliat Support Care ; 13(6): 1745-53, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-26072965

RESUMO

OBJECTIVE: This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. METHOD: Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. RESULTS: The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. SIGNIFICANCE OF RESULTS: Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.


Assuntos
Modelos Educacionais , Casas de Saúde , Cuidados Paliativos/métodos , Grupos Focais , Humanos , Enfermeiras e Enfermeiros , Inquéritos e Questionários
8.
J Clin Nurs ; 23(19-20): 2748-56, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-24372727

RESUMO

AIMS AND OBJECTIVES: To explore partners' experiences of everyday life in caring for a dying person with eating deficiencies at home. BACKGROUND: When a dying person receives care at home, eating deficiencies can influence everyday life for family members, who often take responsibility for the provision of food and meals. The literature reveals this to be emotionally stressful. Partners of dying persons are challenged both as caregivers and as partners who will soon lose their life companion. There is a need for studies that provide enhanced understanding about the influence of dying persons' eating deficiencies on their partners, from the perspective of everyday life. DESIGN: A qualitative design was chosen to obtain experience-based knowledge of relevance for the clinical context of palliative home care. METHODS: Nine people were purposefully selected and interviewed three-six months after the death of their partner. Data collection and analysis were guided by an interpretive descriptive method. RESULTS: The partners described experiences of how eating deficiencies brought about changes in the participants' everyday lives. Two patterns of experiences were identified: the challenge of doing the best for their dying partner around matters involving food and mealtimes, and experiences of striving to maintain ordinariness, including holding on to social values around food, despite experiences of unfamiliarity when the dying partners' habits were changed. CONCLUSION: Living close to a person who has eating deficiencies at the end of life is challenging, both from a caring perspective and for personal well-being. RELEVANCE TO CLINICAL PRACTICE: The findings can assist palliative home care teams and other healthcare professionals to give support that goes beyond giving practical advice about food. Initiating talk about the current situation around food and meals at home, by posing questions and opening the way for conversations, is suggested.


Assuntos
Cuidadores/psicologia , Comportamento Alimentar , Assistência Domiciliar , Estresse Psicológico , Idoso , Idoso de 80 Anos ou mais , Morte , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade
9.
Palliat Med ; 27(3): 257-64, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-22562965

RESUMO

BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.


Assuntos
Cuidadores/psicologia , Estado Terminal , Cuidados Paliativos , Apoio Social , Adulto , Idoso , Feminino , Serviços de Assistência Domiciliar , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Autoeficácia
10.
Nurs Inq ; 20(4): 341-51, 2013 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23336338

RESUMO

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach.


Assuntos
Objetivos , Serviços de Assistência Domiciliar , Relações Enfermeiro-Paciente , Cuidados Paliativos , Relações Profissional-Família , Adulto , Atitude do Pessoal de Saúde , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Teoria de Enfermagem , Competência Profissional
11.
Scand J Caring Sci ; 26(4): 738-46, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-22471714

RESUMO

BACKGROUND: People with irritable bowel syndrome (IBS) often experience severe illness-related troubles in their everyday lives. Many persons also perceive their disease-related knowledge to be insufficient, and they feel dissatisfied with their inability to improve well-being. Previous research about patient education and IBS has emphasized biomedical outcomes of symptoms, health-promoting behaviours, coping and health-related quality of life, rather than people's experiences. AIM: To explore people's experiences of participating in a multidisciplinary group-based patient education programme about IBS and of the influence of this programme on everyday life with illness. METHODS: Focus group interviews were performed with 31 persons after their participation in the patient education programme. Interpretive description guided the inductive analysis of data. The study was approved by the local research ethics committee. FINDINGS: The analysis revealed four patterns; being part of a safe community, learning about oneself through others, understanding and controlling the body and illness as a whole, and being outside of the community. The pattern of learning about oneself through others can be described as a reciprocal activity of learning by listening to, telling and observing others. Being among similar others had created feelings among most of the focus group participants of being part of a safe community where taboo subjects related to IBS-symptoms could be outspoken. Understanding the body and illness as a whole had enhanced their ability to interpret bodily signals and to handle trouble some situations with greater self-confidence, and this regained their access to the social everyday world. CONCLUSION: The combination of reciprocal sharing of experiences and the provision of professional scientific knowledge during the patient education programme together contributed to a growing readiness to improve well-being in everyday life, for most of the participating individuals. This was based on new understandings of the body and illness as a whole and of new abilities to make knowledge-based decisions about what strategies to use in overcoming illness-related troubles.


Assuntos
Grupos Focais , Síndrome do Intestino Irritável/fisiopatologia , Educação de Pacientes como Assunto/organização & administração , Adaptação Psicológica , Adulto , Idoso , Feminino , Humanos , Síndrome do Intestino Irritável/psicologia , Masculino , Pessoa de Meia-Idade , Adulto Jovem
12.
Acta Oncol ; 50(1): 112-20, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-21091087

RESUMO

BACKGROUND: cervical cancer screening (CCS) using Pap-smears has been carried out for decades and is still an essential tool for secondary cancer prevention. Focus has traditionally been on what hinders women's attendance, instead of researching this issue from a positive standpoint, i.e. what factors encourage women to take a Pap-smear? In this article, we therefore explore issues that 30-year-old women have addressed as encouraging CCS attendance, with particular focus on aspects susceptible to intervention. MATERIAL AND METHODS: through the population-based cervical cancer screening (PCCSP) registry in Stockholm, Sweden, a stratified random sampling technique was used to recruit women from the same birth cohort with varied CCS histories and results. Nine face-to-face focus groups discussions (FGDs) and 30 internet-based FGDs were conducted with a total of 138 women aged 30. Qualitative analysis was inspired by interpretative description, to generate clinically relevant and useful data. RESULTS: in general, these women expressed positive views about the PCCSP as an existing service, regardless of screening history. They described a wide range of factors encompassing the entire screening trajectory from invitation through follow-up which could motivate young women to CCS participation, including social marketing. Many of the suggestions related to individualization of the PCCSP, as well as a need to understand the relationship between human papilloma virus (HPV) and cervical cancer. DISCUSSION: [corrected these results are discussed in terms of the inherent tension between population-based public health initiatives and individually-oriented health care provision. Many suggestions given are already incorporated into the existing Stockholm-Gotland screening program, although this information may not reach women who need it. New research should test whether systematic information on HPV may provide a missing link in motivating young women to attend CCS, and which of their suggestions can serve to increase CCS participation.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Programas de Rastreamento/psicologia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Neoplasias do Colo do Útero/prevenção & controle , Saúde da Mulher , Adulto , Cognição , Compreensão , Feminino , Grupos Focais , Humanos , Internet , Pessoa de Meia-Idade , Motivação , Teste de Papanicolaou , Infecções por Papillomavirus/complicações , Infecções por Papillomavirus/virologia , Pesquisa Qualitativa , Medicina Reprodutiva , Estudos de Amostragem , Marketing Social , Suécia , Neoplasias do Colo do Útero/psicologia , Neoplasias do Colo do Útero/virologia , Esfregaço Vaginal
13.
J Adv Nurs ; 67(7): 1480-90, 2011 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-21375574

RESUMO

AIM: This paper is a report of a study of the experience of living with advanced chronic obstructive pulmonary disease and long-term oxygen therapy when living alone. BACKGROUND: Chronic obstructive pulmonary disease affects an increasing number of people. Breathlessness, fatigue and dejection are common symptoms during the last years of life. METHOD: Repeated qualitative interviews with four participants were conducted over an 8-month period in 2008. The data comprised 17 interviews, 15 telephone conversations and various field notes. A phenomenological hermeneutical method was used to interpret the text. FINDINGS: The analysis resulted in two main themes and five sub-themes. The first main theme, Being subordinated to the sick body, implies that the body, assistive devices and entrusting oneself to the hands of others can both extend and restrict the living space. The second main theme, Protecting significant values of identity, encompasses both the struggle to maintain self-image and the awareness of one's own death. CONCLUSION: Living alone with advanced chronic obstructive pulmonary disease is a challenging and complex phenomenon. The everyday life was characterized by a struggle to keep autonomy during a time of increasing dependency and need for help. A person-centred nursing care, built upon peoples' own experiences, may be one way to promote identity and dignity in patients even when they are close to death.


Assuntos
Adaptação Psicológica , Atitude Frente a Saúde , Serviços de Assistência Domiciliar/organização & administração , Doença Pulmonar Obstrutiva Crônica/psicologia , Isolamento Social/psicologia , Atividades Cotidianas , Idoso , Dispneia/psicologia , Emoções , Feminino , Humanos , Masculino , Pesquisa Metodológica em Enfermagem , Oxigenoterapia/efeitos adversos , Oxigenoterapia/psicologia , Cuidados Paliativos , Doença Pulmonar Obstrutiva Crônica/fisiopatologia , Doença Pulmonar Obstrutiva Crônica/terapia , Pesquisa Qualitativa , Qualidade de Vida , Autoimagem , Suécia , Cadeiras de Rodas/psicologia
14.
J Palliat Care ; 27(3): 189-97, 2011.
Artigo em Inglês | MEDLINE | ID: mdl-21957795

RESUMO

AIM: This study examines couples' experiences of living together when one partner has advanced chronic obstructive pulmonary disease (COPD). METHOD: Repeated qualitative interviews with four couples over an eight-month period, where one spouse in each couple suffered from advanced COPD. The final dataset comprised 19 interviews. A phenomenological-hermeneutical method was used to interpret the interview text. FINDINGS: One main theme, "living with the disease and one's spouse in a new and changeable life rhythm", emerged from three subthemes: "living with uncertainty", "living in a changed intimate relationship", and "finding new ways of living together". A mutual sense of companionship between the spouses facilitated their chances of reshaping their relationship and adapting it to the new life rhythm required by everyday life with the disease. CONCLUSION: The healthy spouse had major responsibility for the health of their sick spouse. Awareness of the couple's own conceptions and knowledge of health and illness is central to person-focused care, as is awareness of what values are important to them when restructuring their everyday life.


Assuntos
Adaptação Psicológica , Conhecimentos, Atitudes e Prática em Saúde , Doença Pulmonar Obstrutiva Crônica/psicologia , Cônjuges/psicologia , Idoso , Feminino , Humanos , Relações Interpessoais , Masculino , Narração , Suécia , Incerteza
15.
J Clin Nurs ; 20(7-8): 1097-105, 2011 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-21040038

RESUMO

AIM: The aim of this study was to explore situations in daily life that challenge caregivers' self-image when caring for a dying family member at home. Background. Caregiving affects the health and daily lives of family caregivers. Patterns of challenging situations may provide insight into the home caregiving experience, thus contributing to our understanding of the influence it has on the caregivers' self-image. DESIGN: Qualitative descriptive study. METHODS: Ten family caregivers who cared for a dying family member at home with support from an advanced home care team were interviewed 6-12 months after the death of the family member. The interviews were analysed with interpretive description. Result. Three patterns characterised the experiences of caregivers' daily lives in caring for a dying family member at home: challenged ideals, stretched limits and interdependency. These patterns formed the core theme, the modified self. Situations that challenged the caregivers' self-image were connected to experiences such as 'forbidden thoughts', intimacy and decreasing personal space. CONCLUSIONS: The caregivers met challenging situations in their daily lives that created a modified image of self. It is important to recognise the impact of caring for a dying family member at home. RELEVANCE TO CLINICAL PRACTICE: This study argues for supporting family caregivers to maximise their potential to handle the demanding everyday life with a dying family member at home. This study contributes to understanding situations in the home that may challenge caregivers' self-image and points out the importance of talking about caregiving experiences. From a clinical perspective, this study emphasises the significance of creating a climate, which allows family caregivers to express thoughts and feelings. Sharing experiences such as 'forbidden thoughts' can be one way of handling the profoundly changed every day life.


Assuntos
Atitude Frente a Morte , Cuidadores/psicologia , Família/psicologia , Humanos
16.
Qual Health Res ; 21(5): 683-95, 2011 May.
Artigo em Inglês | MEDLINE | ID: mdl-21263065

RESUMO

We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, "being me in a family living close to death" and "being us in a family living close to death." "Being me" meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual's self-image, or "me-ness." This pattern was present at the same time as the pattern of "being us," or in other words, being a family, and dealing with impending death and a new "we-ness" as a group. "Striving for the optimal way of living close to death" was the core theme.


Assuntos
Atitude Frente a Morte , Cuidadores/psicologia , Relações Familiares , Família/psicologia , Serviços de Assistência Domiciliar , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Feminino , Humanos , Relações Interpessoais , Entrevista Psicológica , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Estresse Psicológico
17.
Scand J Caring Sci ; 25(3): 491-8, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21175733

RESUMO

BACKGROUND: Living with chronic irritable bowel syndrome sets limitations in peoples' everyday lives. This is due to bad health and the difficulty to find strategies that will manage their problem. In encounters with health care providers, these people feel that they are not getting the appropriate support to manage their illness-related troubles, and they perceive themselves to be insufficiently informed about the disease. AIM: To evaluate the influence of a group-based patient education programme about irritable bowel syndrome, on people's ability to manage their illness in everyday life. METHODS: The study used an evaluative research design. Fifty-one individuals with irritable bowel syndrome completed the ways of coping questionnaire, and the irritable bowel syndrome severity scoring system, before and after participating in a multidisciplinary group-based patient education programme. RESULTS: In the participants' self assessments, statistical significances (p > 0.05) were found for the mean frequency of efforts used on the coping strategies distancing and escape-avoidance. Distancing was used more often after the education programme, while escape-avoidance, was used more seldom. The proportional use of the strategy self-controlling (relative score) was enhanced after the education programme. The participants' overall severity of symptoms was significantly reduced after the education programme. The individuals with a clinically noteworthy improvement in symptom severity (decrease ≤ 50) had greater changes in relative score values than those that showed a lesser improvement in symptom severity. CONCLUSION: Coping patterns were changed and symptoms were scored significantly less severe among the participants who participated in the education programme. Controlled studies following individuals over a longer period are suggested to establish the validity and sustainability of these changes, and qualitative interview studies would provide additional understanding about the significance of the separate parts of the education programme, and about the meaning of the programme to peoples' everyday lives as a whole.


Assuntos
Processos Grupais , Síndrome do Intestino Irritável/terapia , Educação de Pacientes como Assunto/organização & administração , Gerenciamento Clínico , Humanos , Síndrome do Intestino Irritável/fisiopatologia , Autocuidado
18.
Nurs Inq ; 18(2): 111-22, 2011 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-21564392

RESUMO

Development of nurses' abilities to reflect on how to create good caring relationships with patients in palliative care: an action research approach In this paper we present an action research process aimed at enhancing nurses' abilities to reflect on how to create good caring relationships with patients in advanced home care. Another aim was to examine the usefulness of an emerging theory, derived from results from a previous study. The request for this project to take place came from an advanced home care unit which had received complaints concerning patients in the palliative phase. The action performed was clinical supervision, structured around abilities that nurses need in order to create good caring relationships. During the action research process 42 narratives were analysed by the participating group. Three different data collections were carried out and analysed with qualitative content analysis in a triangulation procedure. The emerging theory was found to be useful and was also refined. The nurses reported that they felt strengthened and had developed their ability to reflect over good caring relationships. Some changes to practice were carried out by the participating nurses. The result also indicates that action research can be helpful in examining the usefulness of an emerging theory.


Assuntos
Educação em Enfermagem/normas , Serviços de Assistência Domiciliar/normas , Relações Enfermeiro-Paciente , Cuidados Paliativos/normas , Adulto , Currículo , Educação , Humanos , Pessoa de Meia-Idade , Aprendizagem Baseada em Problemas , Adulto Jovem
19.
Palliat Support Care ; 9(3): 263-71, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21838947

RESUMO

OBJECTIVE: The aim of the study was to describe family members' experiences of content, structure, and approach of a potential intervention including a support group program for family members of persons with life-threatening illness. METHOD: The study was a pilot project in a developmental phase in which a potential intervention, a support group program, was investigated. The design of the study was qualitative descriptive. Twenty-nine family members were interviewed by telephone after taking part in the program. The interviews were analyzed using qualitative content analysis. RESULTS: The results indicate that the support group program could work as an acceptable and useful intervention for family members. The program was experienced to cover topics of immediate interest reflecting life close to severely ill persons. The structure of the program was found to be inviting, offering an opportunity to establish relationships with other participants and the caring team in a warm atmosphere. SIGNIFICANCE OF RESULTS: The study indicates the importance of health professionals inviting and interacting with family members during ongoing palliative care. The results could inspire nursing staff to initiate, develop, and deliver similar interventions.


Assuntos
Atitude Frente a Morte , Família/psicologia , Cuidados Paliativos/psicologia , Relações Profissional-Família , Grupos de Autoajuda/organização & administração , Apoio Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/normas , Projetos Piloto , Desenvolvimento de Programas/métodos , Avaliação de Programas e Projetos de Saúde/métodos , Pesquisa Qualitativa , Grupos de Autoajuda/normas , Suécia
20.
J Clin Nurs ; 19(7-8): 1040-8, 2010 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-20492048

RESUMO

AIM AND OBJECTIVES: This paper explores how bereaved relatives experienced soft tissue massage during the first four months after the death of a family member who was in palliative cancer care. BACKGROUND: Death of a close family member or friend is recognised as being an emotional and existential turning point in life. Previous studies emphasise need for various support strategies to assist relatives while they are grieving. DESIGN: Qualitative design. METHOD: Eighteen bereaved relatives (11 women and seven men) received soft tissue massage (25 minutes, hand or foot) once a week for eight weeks. In-depth interviews were conducted after the end of the eight-week periods. Interviews were analysed using a qualitative descriptive content analysis method. RESULTS: Soft tissue massage proved to be helpful and to generate feelings of consolation in the first four months of grieving. The main findings were organised into four categories: (1) a helping hand at the right time, (2) something to rely on, (3) moments of rest and (4) moments of retaining energy. The categories were then conceptualised into this theme: feelings of consolation and help in learning to restructure everyday life. CONCLUSIONS: Soft tissue massage was experienced as a commendable source of consolation support during the grieving process. An assumption is that massage facilitates a transition toward rebuilding identity, but more studies in this area are needed. RELEVANCE TO CLINICAL PRACTICE: Soft tissue massage appears to be a worthy, early, grieving-process support option for bereaved family members whose relatives are in palliative care.


Assuntos
Luto , Família/psicologia , Massagem , Cuidados Paliativos , Apoio Social , Adaptação Psicológica , Adulto , Idoso , Feminino , Humanos , Masculino , Massagem/métodos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Suécia
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