-
[show abstract]
[hide abstract]
ABSTRACT: BERGDAHL E, BENZEIN E, TERNESTEDT B-M, ELMBERGER E and ANDERSHED B. Nursing Inquiry 2013 00: 000-000 Co-creating possibilities for patients in palliative care to reach vital goals - a multiple case study of home-care nursing encounters 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.
Nursing Inquiry 01/2013; · 0.64 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: 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.
Palliative Medicine 05/2012; · 2.38 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: OBJECTIVE: To describe the preparedness to provide care for victims of violence and their families in emergency departments (EDs) in Sweden. METHODS: A web-based questionnaire was sent to all hospital EDs in Sweden (N=66). RESULTS: A total of 46 out of 66 (70%) heads of EDs completed the questionnaire. The results show that most of the EDs are prepared to care for women and children who are victims of violence. However, there seems to be a lack of preparedness to care for other groups of patients, such as victimised men. Very few EDs have routines to identify victims of violence among patients. Results also indicate that nurses play a key role in the care for victims of violence; however, family members are rarely included in care. CONCLUSIONS: A lack of general preparedness in EDs to care for all victims of violence, regardless of gender and age, can lead to many patients not receiving appropriate care and treatment. To correct this there is a need to implement guidelines and routines about the care for victims of violence. Further research can shed more light on which measures are needed to improve quality of care for these patients and their families.
Emergency Medicine Journal 03/2012; · 1.44 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Older persons and persons with diseases other than cancer are often discriminated against when applying for palliative care despite growing numbers of both older persons and individuals with chronic diseases. An intention for palliative care in Sweden is that all persons in the final stage of life, irrespective of age, domicile, diagnosis, and care place shall have access to palliative care on equal terms. One way to support these persons in final stage of life and their relatives is to offer sitting service.
To describe individuals who were identified and documented as being in a palliative phase in a Swedish municipality, with respect to demographics, use of a sitting service, continuity of care in the last month of life and the place of death. A second aim was to describe and compare the groups who received/did not receive sitting services related to the aforementioned variables.
Retrospective data from nursing records and palliative care identification forms were analyzed with descriptive and analytic statistical methods.
Among individuals deceased during 2007, 51% were identified and documented as being in palliative phase. The majority was older people (mean 83 years) with a noncancer diagnosis (58%). Twenty-eight individuals (16%) had received a sitting service between 8 and 249 hours (one extreme value = 2211). It is indicated that sitting service significantly increased the possibility of dying at home (p = 0.00004), but did not affect how often the place of care changed during the last month of life.
A small sample from a Swedish context must be considered.
These results can be related to an awareness in the municipality that led to adopting the concept of palliative care as not only for those with a cancer diagnosis.
Scandinavian Journal of Caring Sciences 01/2012; 26(3):561-8. · 0.89 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving. Aim: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness. Design: Correlational. Setting/participants: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability. Results: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9. Conclusions: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.
Palliative Medicine 09/2011; 26(7):930-8. · 2.38 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: 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.
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.
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.
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.
Palliative and Supportive Care 09/2011; 9(3):263-71.
-
[show abstract]
[hide abstract]
ABSTRACT: The aim of the study was to describe how women with hirsutism experience their relationship with health care. Data were collected by tape-recorded individual interviews, which were analyzed by means of qualitative content analysis. The results showed that the relationship with health care, from the perspective of patients with hirsutism, is suboptimal.
Journal of Psychosomatic Obstetrics & Gynecology 09/2011; 32(3):157-9. · 1.39 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: To describe enrolled nurses' (ENs') experiences of working in a sitting service for dying patients at home (SSH).
The ENs who participated in this study had permanent jobs in community care/ primary care, but were also employed part time in a special home-sitting service organization in a municipality in the south of Sweden. Data were collected by four focus group interviews with 17 enrolled nurses. Qualitative content analysis was used to analyze the data.
Care-giving in SSH was a balancing act between a sense of security and a feeling of vulnerability. Feeling secure and valued and that one is developing both professionally and personally, stemmed from working in partnership, whereas a feeling of vulnerability was associated with managing closeness and distance, being a mediator, having responsibility and feeling guilty, feeling hindered from doing good, facing loneliness, and affecting private lives.
SSH makes it possible for people who are terminally ill to remain at home until they die. If the SSH organization were not an option for dying patients and their families, the pressure on the healthcare would be dramatically increased.
Palliative and Supportive Care 09/2011; 9(3):295-303.
-
[show abstract]
[hide abstract]
ABSTRACT: 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.
Nursing Inquiry 06/2011; 18(2):111-22. · 0.64 Impact Factor
-
Eva Benzein
Journal of Family Nursing 02/2011; 17(1):133-5. · 0.95 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Cardiac disease is a chronic illness that has extensive impact on patients and their partners. No previous review has been made on how the partner relationship is affected following cardiac disease. The review limited itself to the main cardiac disease of myocardial ischemia, arrhythmia and heart failure.
The aim of this review was to identify how the partner relationship is affected following cardiac disease after hospital discharge.
CINAHL, PubMed and PsycINFO were searched from 1999 to 2009. Quality assessment of included articles was made using the Joanna Briggs Institute Reviewers' Manual. A total of 20 articles were included.
Five themes identified how the partner relationship is affected following cardiac disease, namely: overprotection, communication deficiency, sexual concerns, changes in domestic roles, and adjustment to illness. Patients reported feeling overprotected by their spouses which occasionally served as a fertile ground for arguments or conflicts. Most couples experienced some implications concerning their sexual life following cardiac disease, though in various degrees. Both patients and partners seemed to experience communication deficiency concerning emotions within their relationship following the event. Most couples experienced a shift in roles and responsibilities within their partner relationship. Even though most couples experienced great distress following being afflicted with cardiac disease they reported that the disease had brought them closer together.
The review found that though couples found the cardiac event distressful they conformed and adjusted their relationship to the new situation.
European journal of cardiovascular nursing: journal of the Working Group on Cardiovascular Nursing of the European Society of Cardiology 02/2011; 10(3):140-9.
-
Mikael Rask,
Dan Malm,
Marja-Leena Kristofferzon,
Asa Roxberg,
Petra Svedberg,
Eva Arenhall,
Amir Baigi,
David Brunt,
Bengt Fridlund,
Bodil Ivarsson,
Ulrica Nilsson,
Annica Sjöström-Strand,
Inger Wieslander, Eva Benzein
[show abstract]
[hide abstract]
ABSTRACT: There is a need for a short and easily administered scale, in the Swedish language, for assessing partner relationships in the health care of persons with cardiac disease.
To establish the reliability and validity of the Swedish version of the Relationship Assessment Scale (RAS).
The present pilot study has a methodological design.
Content validity has been tested for relevance, clarity and readability. The scale was tested for construct validity with explorative factor analysis. The reliability was tested by internal consistency and test-retest analysis. The result showed a two-factor solution, which does not correspond to the original proposed one-factor solution. The factor analyses revealed two quite distinct factors of RAS, labelled "Relationship built on expectations and satisfaction of needs" and "Relationship built on love and devotion".
The scale has satisfactory psychometric properties in terms of content validity, construct validity, homogeneity and stability in a population of persons with cardiac disease. Wider evaluations of the RAS for other populations and settings are recommended.
Canadian journal of cardiovascular nursing = Journal canadien en soins infirmiers cardio-vasculaires 01/2010; 20(1):16-21.
-
[show abstract]
[hide abstract]
ABSTRACT: Many women suffer from excessive hair growth, often in combination with polycystic ovarian syndrome (PCOS). It is unclear how hirsutism influences such women's experiences of their bodies. Our aim is to describe and interpret women's experiences of their bodies when living with hirsutism. Interviews were conducted with 10 women with hirsutism. We used a qualitative latent content analysis. Four closely intertwined themes were disclosed: the body was experienced as a yoke, a freak, a disgrace, and as a prison. Hirsutism deeply affects women's experiences of their bodies in a negative way.
Health Care For Women International 06/2009; 30(5):358-72. · 0.63 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: The purpose of this study was to investigate the attitudes of registered nurses (RNs) about the importance of involving families in nursing care. A sample of 634 randomly selected Swedish RNs completed the instrument, Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA), and reported holding supportive attitudes about families. High scores were found for the subscales: family as a resource in nursing care, family as a conversational partner, family as a burden, and family as its own resource. Variables that predicted a less supportive attitude about involving families in nursing care included being a newly graduated nurse, having no general approach to the care of families at the place of work, and being a male nurse.
Journal of Family Nursing 06/2008; 14(2):162-80. · 0.95 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: This article describes the development and testing of a research instrument, Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA), designed to measure nurses' attitudes about the importance of involving families in nursing care. The instrument was inductively developed from a literature review and tested with a sample of Swedish nurses. An item-total correlation and a first principal component analysis were used to validate the final instrument, including a second principal component analysis to analyze dimensionality, and Cronbach's alpha was used to estimate internal consistency. The instrument consists of 26 items and reveals four factors: families as a resource in nursing care, family as a conversational partner, family as a burden, and family as its own resource. Cronbach's alpha was 0.88 for the total instrument and 0.69 to 0.80 for the subscales. The instrument requires further testing with other nurse populations.
Journal of Family Nursing 03/2008; 14(1):97-117. · 0.95 Impact Factor
-
Journal of Family Nursing 12/2006; 12(4):344-5. · 0.95 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Research about interactions between family members and staff are sparse, although family members' needs and experiences in intensive care units are well researched areas.
The aim was to describe and interpret interactions between family members and staff in intensive care units.
Interviews (n=24) with family members and repeated observations of interactions of family members and staff in intensive care units were performed and analysed together by means of content analysis.
The initial interactions between staff and family members had a substantial effect on family members and influenced their further interactions with the staff. Two kinds of interactions were revealed; mutual understanding and mutual misunderstanding. Family members, who understood the explicit information and the implicit messages were open in communication with the staff, adjusted well to the system, were acknowledged by the staff and sometimes consoled. Family members, who had difficulties understanding information and implicit messages drew back from communication with staff, did not adjust to the system and were sometimes insulted by the staff.
Unambiguous information from the staff is important for developing interactions of mutual understanding. The results may be a starting point for intensive care unit staff to reflect on how all family members are initially met and further informed and treated. Further research of family members' experiences of interactions with staff in a longitudinal perspective and the influence of critical illness on families are needed.
International Journal of Nursing Studies 09/2006; 43(6):707-16. · 2.18 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Caring for families in home care is a growing part of Swedish district nurses' professional work. District nurses' facilitative and constraining beliefs about families guide the extent to which families are acknowledged and engaged in the care.
The aim of the study was to explore district nurses' beliefs about families in home care.
Explorative, descriptive.
Five district nurses participated in focus group interviews on three separate occasions. Each interview lasted approximately 90 minutes, was audio taped and transcribed verbatim. A thematic content analysis was used for analyses of the data.
The result revealed two underpinning beliefs held by the district nurses towards families in home care: families are a resource and Families are a burden. Families could be a resource for the patient, for the other family members as well as for the district nurses themselves. Families could be a resource for the patient both practically and emotionally by e.g. being present and listening. Being open in communication with other family members and district nurses was also considered as a resource. The district nurses considered families as a burden when they were experienced as demanding in various ways, for example, when family members did not act in a way that pleased the district nurses or when family members showed their suffering.
This study highlight some facilitating and constraining beliefs held by district nurses: families can be both a resource and a burden.
It is important that district nurses are aware of what beliefs they hold as their beliefs guide their actions towards the families.
Journal of Clinical Nursing 11/2004; 13(7):867-75. · 1.12 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: Violence, for example physical, psychological, financial and sexual abuse and neglect, exists and is an under-reported problem in caring situations involving adult persons with intellectual disabilities and their caregivers, where both parties can be seen as victims and perpetrators.
To investigate violent situations involving Swedish adult persons with intellectual disabilities and their caregivers in group-dwellings.
A total population-based survey.
A questionnaire, including violence towards adults with intellectual disabilities and violence towards staff members during 1 year, was sent to all staff members (n = 164) from 17 care settings for adults with intellectual disabilities with a response rate of 74%.
Thirty-five per cent of 122 respondents admitted they had been implicated in or witnessed a violent incident towards an adult person with intellectual disabilities and 14% of the staff members admitted they themselves had been the perpetrators. Sixty-one per cent of the staff members described various situations when they were exposed to violence from an adult person with intellectual disabilities. Physical violence was most frequently reported. Most of the aggression occurred in helping situations when persons with intellectual disabilities did not co-operate or when both actors reacted with violence. The violent situations led the staff members to feel powerless and inadequate. In order to cope they discussed with each other or with the manager.
Violence seems to be accepted as a natural part of the daily care for adult persons with intellectual disabilities. Most of the violence is physical and psychological and occurs in close helping situations.
Supportive interventions, i.e. supervision for the staff members and training of communication skills individually or in group for the adults with intellectual disabilities.
Journal of Clinical Nursing 06/2004; 13(4):506-14. · 1.12 Impact Factor
-
[show abstract]
[hide abstract]
ABSTRACT: The aim of this study was to assess the reliability and validity of the Swedish version (HHI-S) of the Herth Hope Index (HHI), developed by K. Herth. The HHI-S is a 12-item Likert scale, arranged with scores from 1 to 4, where 1 is 'strongly disagree' and 4 is 'strongly agree'. The HHI-S together with the Miller Hope Scale (TMHS) and Beck's Hopelessness Scale (HS-S) were distributed to 85 adults, 40 patients with cancer in palliative care and 45 family members to patients with cancer in palliative care, recruited from four different in- and out-patient oncology clinics. The result showed an internal consistency alpha coefficient of 0.88 for the HHI-S. Concurrent criterion-related validity was assessed by correlating the HHI-S with the TMHS (r = 0.82) and the discriminant validity was assessed by correlating the HHI-S with the HS-S (r = -0.69). A varimax-rotated principal component factor analysis was performed and identified two factors; reconciliation with life situation and religiosity. Although the instrument shows sound reliability and validity, it should be used with care in clinical palliative care settings, because of linguistic, conceptual and cultural difficulties when transferring the instrument into Swedish. The result demands the work of developing an instrument measuring hope, based in the Swedish culture.
Scandinavian Journal of Caring Sciences 01/2004; 17(4):409-15. · 0.89 Impact Factor
