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  • Håkanson, Cecilia, 1968-, et al. (författare)
  • Providing Palliative Care in a Swedish Support Home for People Who Are Homeless
  • 2016
  • Ingår i: Qualitative Health Research. - : Sage Publications. - 1049-7323 .- 1552-7557. ; 26:9, s. 1252-1262
  • Tidskriftsartikel (refereegranskat)abstract
    • Despite high frequencies of multiple, life-limiting conditions relating to palliative care needs, people who are homeless are one of the most underserved and rarely encountered groups in palliative care settings. Instead, they often die in care places where palliative competence is not available. In this qualitative single-case study, we explored the conditions and practices of palliative care from the perspective of staff at a Swedish support home for homeless people. Interpretive description guided the research process, and data were generated from repeated reflective conversations with staff in groups, individually, and in pairs. The findings disclose a person-centered approach to palliative care, grounded in the understanding of the person’s health/illness and health literacy, and how this is related to and determinant on life as a homeless individual. Four patterns shape this approach: building trustful and family-like relationships, re-dignifying the person, re-considering communication about illness and dying, and re-defining flexible and pragmatic care solutions.
  • Alvariza, A., et al. (författare)
  • A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool
  • 2018
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 35, s. 1-8
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context. Methods: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated. Results: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75). Conclusions: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care. © 2018 Elsevier Ltd
  • Fridh, Isabell, et al. (författare)
  • Extensive human suffering : a point prevalence survey of patients' most distressing concerns during inpatient care
  • 2015
  • Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd.. - 0283-9318 .- 1471-6712. ; 29, s. 444-453
  • Tidskriftsartikel (refereegranskat)abstract
    • AIM: To explore patients' most distressing concerns during a hospital stay.BACKGROUND: The characteristics of hospitalised patients have changed. Care is provided at a higher age, lengths of stay have fallen and the nursing workload is increasing. It is presumed that hospitalised patients are more seriously ill and have more palliative needs than previously. Studies show that inpatients suffer from more distress than similar outpatients although there is a lack of overall knowledge about inpatients' distress and major concerns, regardless of age, diagnosis or care setting.METHODS: This study was part of a point prevalence survey (PPS) concerning symptom prevalence. Of the 710 patients who participated in the PPS, 678 (95%) answered an open-ended question in a questionnaire: What is your main concern or what is most distressing or troublesome for you at present? Using a life-world approach, the text was analysed qualitatively and patients' concerns were interpreted in two main dimensions, an intersubjective dimension and a temporal dimension.FINDINGS: The patients reported extensive suffering due to illness, symptoms and failing health. Patients were concerned about family members, existential issues and the future. Three aspects of the patients' most distressing concerns were interpreted: The suffering self, The suffering person in close relations and The suffering person in a threatening world.CONCLUSION: Hospitalised patients are affected by severe illness, distressing symptoms and existential quandaries, revealing extensive human suffering in the midst of the demanding activities that take place during an ordinary day in a hospital. To support patients and alleviate suffering, hospital staff need to be more sensitive to patients' most distressing concerns. This presupposes a hospital environment in which the value system supports caring and comforting behaviour.
  • Holm, M., et al. (författare)
  • Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: a qualitative study from the perspectives of health professionals and family caregivers
  • 2015
  • Ingår i: Bmc Palliative Care. - : BioMed Central. - 1472-684X. ; 14
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Family caregivers in palliative care have a need for knowledge and support from health professionals, resulting in the need for educational and supportive interventions. However, research has mainly focused on the experiences of family caregivers taking part in interventions. To gain an increased understanding of complex interventions, it is necessary to integrate the perspectives of health professionals and family caregivers. Hence, the aim of this study is to explore the perspectives of health professionals and family caregivers of delivering and participating in a psycho-educational intervention in palliative home care. Methods: A psycho-educational intervention was designed for family caregivers based on a theoretical framework describing family caregiver's need for knowing, being and doing. The intervention was delivered over three sessions, each of which included a presentation by healthcare professionals from an intervention manual. An interpretive descriptive design was chosen and data were collected through focus group discussions with health professionals and individual interviews with family caregivers. Data were analysed using framework analysis. Results: From the perspectives of both health professionals and family caregivers, the delivering and participating in the intervention was a positive experience. Although the content was not always adjusted to the family caregivers' individual situation, it was perceived as valuable. Consistently, the intervention was regarded as something that could make family caregivers better prepared for caregiving. Health professionals found that the work with the intervention demanded time and engagement from them and that the manual needed to be adjusted to suit group characteristics, but the experience of delivering the intervention was still something that gave them satisfaction and contributed to them finding insights into their work. Conclusions: The theoretical framework used in this study seems appropriate to use for the design of interventions to support family caregivers. In the perspectives of health professionals and family caregivers, the psycho-educational intervention had important benefits and there was congruence between the two groups in that it provided reward and support. In order for health professionals to carry out psycho-educational interventions, they may be in need of support and supervision as well as securing appropriate time and resources in their everyday work.
  • Holm, M., et al. (författare)
  • Psychometric evaluation of the Texas revised inventory of grief in a sample of bereaved family caregivers
  • 2018
  • Ingår i: Research in Nursing & Health. - : Wiley-Blackwell. - 0160-6891 .- 1098-240X. ; 41:5, s. 480-488
  • Tidskriftsartikel (refereegranskat)abstract
    • The Texas Revised Inventory of Grief (TRIG) was developed to measure the intensity of grief after the death of a close person. It consists of two scales: TRIG I (past behaviors) and TRIG II (present feelings). Because of inconsistencies in previous validations, the instrument needs to be further validated, hence the aim of this study was to evaluate the psychometric properties of the TRIG in a sample of bereaved family caregivers in Sweden. The TRIG was translated to Swedish according to standard principles, and 129 bereaved family caregivers completed the questionnaire. Parallel analysis was used to decide the number of factors to extract, followed by confirmatory factor analysis. An ordinal version of Cronbach's alpha was used to evaluate the internal consistency of the scales. Construct validity was tested against the Hospital Anxiety and Depression Scale (HADS). The factor analyses resulted in one factor being retained for both scales. The internal consistency was excellent (>0.9) for both scales. Construct validity was supported by strong correlations between TRIG I and TRIG II as well as moderate correlations between the TRIG scales and HADS. In conclusion, the TRIG has sound psychometric qualities and the two scales should be treated as unidimensional measures of grief. Hence, the instrument is suited to be used in the context of palliative care.
  • Holm, Maja, et al. (författare)
  • Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care – The perspectives of health care professionals
  • Ingår i: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 31, s. 6-11
  • Tidskriftsartikel (refereegranskat)abstract
    • Purpose The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care. Methods The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles. Results The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support. Conclusions The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT.
  • Ohlen, Joakim, et al. (författare)
  • Conceptual development of "at-homeness'' despite illness and disease : A review
  • 2014
  • Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action. - 1748-2623 .- 1748-2631. ; 9
  • Forskningsöversikt (refereegranskat)abstract
    • Only one empirical study, the one by Zingmark, Norberg and Sandman published in 1995, explicitly focuses on at-homeness, the feeling of being metaphorically at-home, as a particular aspect of wellness. However, other studies reveal aspects of at-homeness, but if or how such aspects of at-homeness are related to each other is unclear. For this reason, the aim was to review Scandinavian nursing research related to at-homeness in the context of wellness-illness in severe and long-term conditions in order to take a step towards conceptual clarification of "at-homeness.'' The review included interpretive studies related to severe and long-term illness conducted in Sweden: 10 original articles and 5 doctoral theses. "At-homeness'' was found to be a contextually related meaning of wellness despite illness and disease embedded in the continuum of being metaphorically at-home and metaphorically homeless. This was characterized by three interrelated aspects and four processes: being safe through expanding-limiting experiences of illness and time, being connected through reunifying-detaching ways of relating, and being centred through recognition-non-recognition of oneself in the experience and others giving-withdrawing a place for oneself. This conceptualization is to be regarded as a step in conceptual clarification. Further empirical investigation and theoretical development of "at-homeness'' are needed. The conceptualization will be a step of plausible significance for the evaluation of interventions aimed at enhancing wellness for people with severe long-term illness, such as the frail elderly, and people with chronic illness or palliative care needs.
  • Saarnio, L., et al. (författare)
  • Enabling At-Homeness for Older People With Life-Limiting Conditions: A Participant Observation Study From Nursing Homes
  • 2019
  • Ingår i: Global Qualitative Nursing Research. - 2333-3936 .- 1471-8804. ; 6
  • Tidskriftsartikel (refereegranskat)abstract
    • At-homeness, as an aspect of well-being, can be experienced despite living with life-limiting conditions and needs for a palliative approach to care. In nursing homes, older residents with life-limiting conditions face losses and changes which could influence their experience of at-homeness. The aim of this study was to explore how nursing staff enable at-homeness for residents with life-limiting conditions. Interpretive description was employed as the design using data from participant observations and formal and informal interviews related to nursing care situations. The strategies found to be used to enable at-homeness comprising nursing staff presenting themselves as reliable, respecting the resident's integrity, being responsive to the resident's needs, collaborating with the resident in decision-making, and through nurturing comforting relationships. The result on how to enable at-homeness could be used as strategies for a person-centered palliative approach in the care for residents in nursing homes.
  • Berg, Linda, et al. (författare)
  • Characterisation of cancer support and rehabilitation programmes : a Swedish multiple case study.
  • 2014
  • Ingår i: Open Nursing Journal. - 1874-4346 .- 1874-4346. ; 8
  • Tidskriftsartikel (refereegranskat)abstract
    • Cancer support and rehabilitation are suggested to be an integral part of cancer care strategies. This study focuses on comparativeness of cancer support and rehabilitation programmes. The aim of this study was to analyse available cancer support and rehabilitation programmes in Sweden presented as complementary to cancer rehabilitation at cancer clinics. A multiple case study design was chosen in order to inquire the small number of existing supportive and rehabilitative cancer programmes. Based on the structures, processes and outcomes of the nine included programmes, three types of cancer support and rehabilitation programmes were identified: multimodal rehabilitation, comprehensive cancer support and art therapy. Cancer support and rehabilitation programmes offer a variety of activities and therapies which are highly valuable and relevant for people with cancer. The typology of cancer support and rehabilitation programmes and comparability between programmes need further inquiry.
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