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  • 1.
    Axelsson, Lena
    et al.
    Sophiahemmet university, Sweden.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Lindberg, Jenny
    Lund University, Sweden;Skåne University Hospital, Sweden.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study2019In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 18, no 1, p. 1-10, article id 89Article in journal (Refereed)
    Abstract [en]

    Background: Despite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals' views on provision of care. The aim of this study was therefore to describe nurses' and physicians' perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis. Methods: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data. Results: Participants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients' quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance. Conclusions: Nurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

  • 2.
    Axelsson, Lena
    et al.
    Sophiahemmet university, Sweden.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Lindberg, Jenny
    Lund University, Sweden;Skåne University Hospital, Sweden.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Processes toward the end of life and dialysis withdrawal Physicians' and nurses' perspectives2020In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 27, no 2, p. 419-432Article in journal (Refereed)
    Abstract [en]

    Background: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory. Aim: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease. Research design and participants: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data. Ethical considerations: Ethical approval was obtained (Dnr 2014/304-31). Findings and discussion: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress. Conclusion: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

  • 3.
    Benzein, Eva
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Olin, Cecilia
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    ‘You put it all together’: families' evaluation of participating in family health conversations2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 1, p. 136-144Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    To evaluate the Family Health Conversations from the perspective of families living with chronic illness.

    Methodological design and justification

    This study has a descriptive qualitative design using semi-structured evaluative family interviews and conventional content analysis.

    Ethical issues and approval

    The study was approved by a Regional Ethical Review Board.

    Research methods

    Family Health Conversations were used as an intervention with 14 families living with chronic illness. The outcome measures consisted of evaluative family interviews.

    Results

    Families' experiences of the conversations embraced their structure and the interactions with the conversation leaders. All families were satisfied with the conversations, pointing to the importance of having them early in the illness process. The opportunity to talk with someone outside the family was strongly emphasised as promoting well-being. The experienced significance of the conversations was captured in four categories: creating a whole picture, that is, being given the opportunity to listen to other family members' experiences and fill in potential memory gaps; making the situation manageable, that is, receiving support from other participants in order to handle problems and gain control; facilitating healing, that is, being able to tell their story about what had previously been ‘the unspeakable’; and strengthened family cohesion, that is, increased understanding for each other's experiences, thus bringing family members closer together.

    Study limitations

    Most families were partners, which could possibly limit transferability of the findings to families constituted by couples.

    Conclusions

    Family Health Conversations should be offered as a part of standard care shortly after diagnosis and at various transitions in life.

  • 4.
    Benzein, Eva
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Saveman, Britt-Inger
    Umeå University, Sweden.
    Syrén, Susanne
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Metoder inom familjecentrerad forskning2017In: Att möta familjer inom vård och omsorg / [ed] E. Benzein, M. Hagberg, B-I. Saveman, Lund: Studentlitteratur AB, 2017, 2, p. 107-122Chapter in book (Other academic)
  • 5.
    Bylund, Ami
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Creating a New Sense of We-ness: Family Functioning in Relation to Gastric Bypass Surgery2013In: BARIATRIC SURGICAL PRACTICE AND PATIENT CARE, ISSN 2168-023X, Vol. 8, no 4, p. 152-160Article in journal (Refereed)
    Abstract [en]

    Background: Gastric bypass surgery (GBP) is the most common treatment for morbid obesity (body mass index 35). To date, the person with obesity has been the main focus in bariatric nursing and research, although the person coexists within their family. Aim: The aim of this study was to describe family functioning in relation to GBP. Methods: Open ended questions were used. Nine families were interviewed on two occasions within 2 weeks 3 months after surgery. The interviews were transcribed and analyzed according to a hermeneutic method. Main Findings: An ongoing process of alterations related to family functioning was identified. Before, GBP families experienced distance and disengagement. Immediately after GBP, there were changes within relationships. Families experienced a period of difficulty, in interactions, while adapting to the lifestyle changes and altered positions. After 3 months, families experienced enhanced closeness in inter-relations within the family and increased social interactions as a whole family with friends and relatives. Conclusions: To better support families and enhance family functioning, bariatric nursing care needs to shift focus from an individual to a family perspective. Further studies are needed to gain a longitudinal perspective and improve understanding of family functioning after GBP.

  • 6.
    Bylund, Ami
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Thorell, Anders
    Danderyd Hospital (KI DS).
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Associations between family functioning, weight loss, sex and Health-Related Quality of Life outcomes two years after gastric bypass surgeryManuscript (preprint) (Other academic)
  • 7.
    Bylund, Ami
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet;Ersta Hospital.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linköping University.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Thorell, Anders
    Karolinska Institutet;Ersta Hospital.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Assessment of family functioning: evaluation of the General Functioning Scale in a Swedish Bariatric Sample2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 3, p. 614-622Article in journal (Refereed)
    Abstract [en]

    BackgroundThe General Functioning Scale (GFS) was developed to assess self-perceived overall family functioning. The scale has satisfactory psychometric properties, is internationally recognised and has been used in different contexts. However, no validated Swedish version is available. Healthy family functioning can support patients and help them adhere to treatment regimens. Moreover, it maintains the physical and emotional health and that of the family as a unit. Yet, there is limited information regarding family functioning postgastric bypass surgery. Thus, it is important to use validated instruments to understand family functioning in bariatric contexts. AimTo evaluate aspects of reliability and validity in GFS in a Swedish bariatric sample, focusing on factor structure. MethodThe Swedish version of the GFS (S-GFS) was administered on two occasions to 163 participants who had undergone gastric bypass surgery 6-8 weeks prior to testing. Internal consistency, temporal stability and construct validity were assessed. ResultsData were positively skewed. The S-GFS showed good internal consistency (ordinal = 0.92) with a sufficient overall mean interitem correlation (0.500) and adequate temporal stability (intraclass correlation coefficient = 0.833). After modifying response alternatives, confirmatory factor analysis indicated acceptable fit for a one-factor model. ConclusionThe scale is a promising tool for assessing family functioning in bariatric settings. The S-GFS showed satisfactory reliability - consistent with prior research - and acceptable validity in the study sample. This study contributes to the limited research on the scale's validity. However, the S-GFS needs to be evaluated in different cultural and clinical contexts, focusing on various aspects of validity and responsiveness (sensitivity to detect significant change over time) in different samples.

  • 8. Fritzell, Kaisa
    et al.
    Persson, Carina
    Karolinska Inst, Div Nursing, Dept Neurobiol Care Sci & Soc, S-14183 Huddinge, Sweden.
    Björk, Jan
    Hultcrantz, Rolf
    Wettergren, Lena
    Patients' views of surgery and surveillance for familial adenomatous polyposis.2010In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 33, no 2, p. E17-23Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Familial adenomatous polyposis (FAP) is an inherited condition that requires prophylactic surgery (colectomy) followed by a lifetime program of endoscopic surveillance to prevent colorectal cancer. Patients are normally free of symptoms before surgery but a majority report problems related to bowel function postoperatively.

    OBJECTIVE: The aim of the study was to gain a deeper understanding of how FAP affects life by exploring patients' view of what it is like living with the illness and being committed to a lifelong screening program.

    METHODS: Three focus group interviews were conducted, and data were analyzed using descriptive qualitative content analysis.

    RESULTS: The analysis resulted in two categories related to the participants' view of living with FAP. The first category was associated with concerns related to the hereditary and lifelong nature of the disease as well as to the prophylactic surgery and the second category was related to patients' ways of managing life.

    CONCLUSION: Most participants expressed unmet needs, such as lack of healthcare providers with good knowledge about FAP, practical and psychosocial support, FAP educational programs, and organized meetings with other persons with the condition.

    IMPLICATIONS FOR PRACTICE: One important aspect of living with FAP shared by the participants concerned ways of managing life concerns, something that healthcare providers caring for patients with FAP should identify and support. Furthermore, continuity of care by health care providers with good knowledge about FAP can be an important way of reducing patient concerns.

  • 9.
    Israelsson, Johan
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Kalmar County Hospital, Sweden;Linköping University, Sweden.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Bremer, Anders
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Strömberg, Anna
    Linköping University, Sweden.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Region Kalmar County, Sweden.
    Dyadic effects of type D personality and perceived control on health-related quality of life in cardiac arrest survivors and their spouses using the actor–partner interdependence model2019In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, p. 1-8Article in journal (Refereed)
    Abstract [en]

    Background: There is a lack of knowledge about factors associated with health-related quality of life in cardiac arrest survivors and their spouses. In addition, survivors and spouses are likely to affect each other’s health-related quality of life.

    Aims: The aim was to investigate if a distressed personality and perceived control among cardiac arrest survivors and their spouses were associated with their own and their partner’s health-related quality of life.

    Methods: This dyadic cross-sectional study used the actor–partner interdependence model to analyse associations between a distressed personality (type D personality), perceived control (control attitudes scale), and health-related quality of life (EQ index and EQ visual analogue scale).

    Results: In total, 126 dyads were included in the study. Type D personality and perceived control in cardiac arrest survivors were associated with their own health-related quality of life. In their spouses, a significant association was found for type D personality but not for perceived control. In addition, type D personality and perceived control in survivors were associated with health-related quality of life in their spouses.

    Conclusions: Type D personality and perceived control are factors that might be considered during post cardiac arrest, because of the associations with health-related quality of life in survivors and spouses. More research is needed to test psychosocial interventions in the cardiac arrest population in order to improve health-related quality of life.

  • 10.
    Israelsson, Johan
    et al.
    Linnaeus University, Faculty of Technology, Kalmar Maritime Academy. Kalmar County Hospital.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Strömberg, Anna
    Linköping University.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linköping University;Ersta Sköndal University College.
    Is there a difference in survival between men and women suffering in-hospital cardiac arrest?2014In: Heart & Lung, ISSN 0147-9563, E-ISSN 1527-3288, Vol. 43, no 6, p. 510-515Article in journal (Refereed)
    Abstract [en]

    Objectives: To describe in-hospital cardiac arrest (CA) events with regard to sex and to investigate if sex is associated with survival. Background: Previous studies exploring differences between sexes are incongruent with regard to clinical outcomes. In order to provide equality and improve care, further investigations into these aspects are warranted. Methods: This registry study included 286 CAs. To investigate if sex was associated with survival, logistic regression analyses were performed. Results: The proportion of CA with a resuscitation attempt compared to CA without resuscitation was higher among men. There were no associations between sex and survival when controlling for previously known predictors and interaction effects. Conclusions: Sex does not appear to be a predictor for survival among patients suffering CA where resuscitation is attempted. The difference regarding proportion of resuscitation attempts requires more attention. It is important to consider possible interaction effects when studying the sex perspective. (C) 2014 Elsevier Inc. All rights reserved.

  • 11.
    Israelsson-Skogsberg, Åsa
    et al.
    University of Borås, Sweden.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Markström, Agneta
    Uppsala University, Sweden;Karolinska Institutet, Sweden.
    Hedén, Lena
    University of Borås, Sweden.
    Children with home mechanical ventilation: parents' health-related quality of life, family functioning and sleep2020In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
    Abstract [en]

    Aim

    Children requiring home mechanical ventilation (HMV) have grown in number and complexity. Parents of children with HMV are often responsible for the advanced homecare. This study explored the health‐related quality of life (HRQoL), family functioning and sleep in parents of children with HMV. A secondary aim was to explore the impact on HRQoL, family functioning and sleep of selected potential determinants.

    Methods

    Questionnaires were completed by 45 mothers and 40 fathers, to 55 children receiving HMV. Parents were identified via respiratory clinics in the Swedish national quality register for oxygen and home respiratory treatment and invited to participate between December 2016 and December 2018.

    Results

    There were no differences between mothers and fathers overall HRQoL or family functioning reports, although differences within the physical (P < .043) and cognitive (P < .009) functioning dimensions were found. One of four parents reported moderate or severe insomnia. The variability in HRQoL and family functioning was predicted by HMV mode and sleep quality to an extent of 45% and 21%, respectively.

    Conclusion

    Sleep quality and the child's HMV mode predicted parental HRQoL and family functioning. The results underscore the importance of evaluating parents' sleep and of being aware that invasive ventilation influences parental HRQoL and family functioning.

  • 12.
    Persson, Carina
    Neurobiologi, vårdvetenskap och samhälle.
    I skuggan av lungcancer - närståendes erfarenheter2008Doctoral thesis, comprehensive summary (Other academic)
  • 13.
    Persson, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Family health conversations: how do they support health?2014In: Nursing Research and Practice, ISSN 2090-1429, E-ISSN 2090-1437, p. Article ID: 547160-Article in journal (Refereed)
    Abstract [en]

    Research shows that living with illness can be a distressing experience for the family and may result in suffering and reduced health. To meet families’ needs, family systems intervention models are developed and employed in clinical contexts. For successful refinement and implementation it is important to understand how these models work. The aim of this study was therefore to describe the dialogue process and possible working mechanisms of one systems nursing intervention model, the Family Health Conversation model. A descriptive evaluation design was applied and 15 transcribed conversations with five families were analyzed within a hermeneutic tradition. Two types of interrelated dialogue events were identified: narrating and exploring. There was a flow between these events, a movement that was generated by the interaction between the participants. Our theoretically grounded interpretation showed that narrating, listening, and reconsidering in interaction may be understood as supporting family health by offering the families the opportunity to constitute self-identity and identity within the family, increasing the families’ understanding of multiple ways of being and acting, to see new possibilities and to develop meaning and hope. Results from this study may hopefully contribute to the successful implementation of family systems interventions in education and clinical praxis.

  • 14.
    Persson, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Hälsostödjande familjesamtal2020In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternestedt & Cecilia Håkanson, Lund: Studentlitteratur AB, 2020, 2Chapter in book (Other (popular science, discussion, etc.))
  • 15.
    Persson, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Saveman, Britt-Inger
    Umeå University, Sweden.
    Syrén, Susanne
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Forskningsrön kring Hälsostödjande familjesamtal2017In: Att möta familjer inom vård och omsorg / [ed] E. Benzein, M. Hagberg, B-I. Saveman, Lund: Studentlitteratur AB, 2017, 2, p. 87-106Chapter in book (Other academic)
  • 16.
    Persson, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Årestedt, Kristofer
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linköping University.
    Assessing family resources: validation of the Swedish version of the Family Hardiness Index2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 4, p. 845-855Article in journal (Refereed)
    Abstract [en]

    All families face normative transitions. Some are perceived as stressful and calls for family resources to maintain or restore family well-being. In times of illness, families also need to develop strengths and capabilities to enhance family well-being. The way these are developed is related to family hardiness. Family hardiness is thus seen as a family resource, and the Family Hardiness Index (FHI) was developed to measure family stress resistance and adaptation resources. The index was not available in Swedish and no extensive international psychometric evaluation was found. Therefore, the aim was to translate and validate the Swedish version of the FHI. The study was approved by a Regional Ethical Review Board. Data from 174 Swedish participants, family members to persons with cognitive dysfunctions (n = 95) and nursing students (n = 79) were included. Family members were enrolled in outpatient clinics in primary care and rehabilitation, and nursing students at a nursing school. Psychometric properties were evaluated through calculations of missing data, distributions of item and scale scores, item correlations, Cronbach's alpha, confirmatory factor analyses and correlations with theoretically related constructs. Sample scores had acceptable data quality, internal consistency for the FHI total scale was satisfactory (alpha = 0.86), and construct validity was supported. Our findings cast some doubt on the intended interpretation since confirmatory factor analyses showed that a modified four-subscale version, excluding one subscale, showed best fit. The Control subscale lacked important psychometric properties in terms of homogeneity, internal consistency and construct validity. The sample size was probably sufficiently large for the factor analyses, but the subgroup analyses should be treated with caution. The conclusion is that the Swedish version of the FHI is a promising scale for assessing family hardiness, but more solid evidence for the factor structure in various Swedish and international samples is needed.

  • 17.
    Persson, Carina
    et al.
    Neurobiologi, vårdvetenskap och samhälle.
    Ostlund, U
    Wennman-Larsen, A
    Wengström, Y
    Gustavsson, P
    Health-related quality of life in significant others of patients dying from lung cancer.2008In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 22, no 3, p. 239-47Article in journal (Refereed)
    Abstract [en]

    This study compares health-related quality of life (HRQOL) in significant others of patients dying from lung cancer, with a general population sample. Further, it explores the course of HRQOL from diagnosis (T1), at a time point close to the patient's death (T2), and six months after the patient's death (T3). The group comparisons at T1 showed that the significant others scored significantly lower on the scales in the mental domain compared with a general population sample. These results were the same at T3, when the significant others also scored lower on most of the scales in the physical and social domains. In the longitudinal analyses, there were significant changes in four scales, and three patterns of change were identified: a decrease-increase pattern for 'self-rated health' and 'positive affect'; a constant decrease pattern for 'family functioning'; and a decrease-stable pattern for 'satisfaction with family functioning'. Thus, living with inoperable lung cancer in the family and then facing the death of a family member affects most of the HRQOL dimensions.

  • 18.
    Persson, Carina
    et al.
    Neurobiologi, vårdvetenskap och samhälle.
    Sundin, Karin
    Being in the situation of a significant other to a person with inoperable lung cancer.2008In: Cancer Nursing, ISSN 0162-220X, E-ISSN 1538-9804, Vol. 31, no 5, p. 380-8Article in journal (Refereed)
    Abstract [en]

    Little is known about how significant others experience their own situation when a family member becomes seriously ill. To illuminate the meanings of significant others' experiences of their situation after a family member had been diagnosed with inoperable lung cancer, we analyzed narratives from 12 significant others, using a phenomenological hermeneutic approach. Findings revealed 4 themes: feeling dislocated in life, being in an altered relationship, being in a struggle, and feeling secure. When reflecting on these findings, we considered the transition theories and works of Ricoeur and Lögstrup. The significant others' experiences indicated a transition process because of the changes brought about by the diagnosis of lung cancer and a struggle to endure and overcome difficulties and distress on the way to regaining a smooth functioning life. Furthermore, the diagnosis of lung cancer had altered the relationship toward the next of kin and meant not only feelings of increased closeness but also loss of intimacy and reciprocity. The significant others suffered in this process of transition, and healthcare professionals, who recognize the World Health Organization's definition of palliative care, may consider the findings of this study useful when reflecting on their care of families.

  • 19.
    Persson, Carina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Sundin, Karin
    Umeå University, Sweden.
    Fenomenologisk hermeneutisk tolkningsmetod – ett dialektiskt förhållningssätt2017In: Vetenskaplig teori och metod / [ed] Maria Henricson, Lund: Studentlitteratur AB, 2017, 2, p. 325-338Chapter in book (Other academic)
  • 20.
    Persson, Carina
    et al.
    Neurobiologi, vårdvetenskap och samhälle.
    Wennman-Larsen, A
    Sundin, K
    Gustavsson, P
    Assessing informal caregivers' experiences: a qualitative and psychometric evaluation of the Caregiver Reaction Assessment Scale.2008In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 17, no 2, p. 189-99Article in journal (Refereed)
    Abstract [en]

    With the aim to evaluate the Swedish version of the Caregiver Reaction Assessment Scale (CRA), informal caregivers (n = 209) to individuals with a malignant disease, dementia or a physical impairment were recruited. The CRA was developed in the USA and is a self-rating questionnaire consisting of five subscales, measuring family members' reactions to the experience of caring for a relative with mental or physical illnesses. Data were analysed using psychometric and qualitative methods. Findings indicated good internal consistency, and a factor analysis confirmed the structure with five subscales; however, an overlap of items between the subscales was found. A content analysis of respondents' comments indicated that there were problems due to presuppositions inherent in the questions and with the meaning of words. Problems regarding inclusion/exclusion aspects in some concepts were also found. Two aspects of caregiver reactions were found to be missing or only partly covered: worrying and positive experiences. Results from this study suggest that the Swedish version is useful for assessment of caregiver reactions but needs further refinement.

  • 21. Pusa, Susanna
    et al.
    Persson, Carina
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Sundin, Karin
    Significant others' lived experiences following a lung cancer trajectory: From diagnosis through and after the death of a family member.2012In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 16, no 1, p. 34-41Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The purpose of this study was to illuminate the meanings of significant others' lived experiences of their situation from diagnosis through and after the death of a family member as a consequence of inoperable lung cancer.

    METHODS: The data was collected through narrative interviews from eleven significant others and interpreted using a phenomenological hermeneutic approach. KEYRESULTS: Four themes emerged: being unbalanced, being transitional, being cared for, and moving forward.

    CONCLUSION: The significant others' experiences can be viewed as a transition process, beginning with a sense of dislocation in life and continuing through struggling, enduring and conquering the consequences of the altered life situation until finally approaching a point characterized by a sense of stability. Different strategies of adjustment and adaptation to the new living conditions are considered. Furthermore, the results indicate the need to develop a framework for family-centered health care in order to enhance the wellbeing for the significant others both in the anticipatory grief phase and during the bereavement phase.

  • 22.
    Tryselius, Kristina
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ideas of home in palliative care research: a concept analysis2018In: Nursing Forum, ISSN 0029-6473, Vol. 53, no 3, p. 383-391Article in journal (Refereed)
    Abstract [en]

    1 Aim

    To explore the concept of home and its' expressed spatialities in current palliative care research.

    2 Background

    Home is a central environment for living, caring, and dying. However, pure investigations of the sets of ideas linked to the concept seemed missing. Although identified as an important location, spatial perspectives expressed through the concept of home appeared unexplored.

    3 Design

    Rodgers' evolutionary concept analysis.

    4 Data sources

    Scientific articles published between January 2009 and September 2015.

    5 Review methods

    Rodgers' evolutionary concept analysis. Resulting attributes were explored from two geographically informed spatial perspectives.

    6 Results

    As main results, six attributes were identified and explored: Home as actor—capable of acting; emotional environment—something people have feelings for; place—a part of personal identity and a location; space—complex and relational spatial connections and a site for care; setting—passive background and absolute space; becoming—a fluid spatiality constantly folded. Examples of attributes and suggestions for further concept development were identified.

    7 Conclusions

    The concept reflects various sets of ideas as well as expressing both relational and absolute perspectives of space. The most challenging for nursing research and practice seems to be investigation, operationalization, and testing the implementation of sets of ideas reflecting a relational thinking of space.

  • 23. Wennman-Larsen, Agneta
    et al.
    Persson, Carina
    Neurobiologi, vårdvetenskap och samhälle.
    Östlund, Ulrika
    Wengström, Yvonne
    Gustavsson, J Petter
    Development in quality of relationship between the significant other and the lung cancer patient as perceived by the significant other.2008In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 12, no 5, p. 430-5Article in journal (Refereed)
    Abstract [en]

    AIM: To prospectively explore the quality of the relationship between significant others and patients during lung cancer, based on the perceptions of the significant others.

    METHOD: In a sample of 91 significant others, longitudinal data were collected during the first year after diagnosis, and explored on group level and as individual patterns over time.

    RESULTS: Relational quality was skewed towards high quality, although 30% of the significant others reported low levels close to diagnosis. Forty-eight percent reported stability in the quality of their relationship during the disease trajectory. Within this group, 36% reported low levels of relational quality. Fifty-two percent reported change in quality of relationship and four typical patterns of change were identified. Two showed approximate linear changes in either a positive direction (15%) or a negative direction (49%), and two showed non-linear changes with a temporary ascending curve (11%) or a descending curve (26%). This implies that a change towards low levels of relational quality was most common.

    CONCLUSION: The present results show that illness may be a trigger for change in relational quality, which may have implications for future family-centred practice and research, since previously high relational quality has been linked to improved emotional well-being.

  • 24. Ylvén, Regina
    et al.
    Granlund, Mats
    Persson, Carina
    Linnaeus University, Faculty of Health, Social Work and Behavioural Sciences, School of Health and Caring Sciences.
    Problem solving in relation to resources in everyday life in families of children with disabilities: a pilot study2012In: International Journal of Rehabilitation Research, ISSN 0342-5282, E-ISSN 1473-5660, Vol. 35, no 2, p. 102-108Article in journal (Refereed)
    Abstract [en]

    Problem solving is recognized as a skill, helping families of children with disabilities to manage problems in everyday life. Family problem-solving skills may therefore be seen as an important outcome of a child and youth habilitation service. The aim of this pilot feasibility study was to examine the design of a future web-based questionnaire study focusing on problem-solving patterns in relation to resources in families of children with disabilities. The descriptive statistical analyses built on data from 13 families and findings showed an overall satisfactory score distribution for three of the included instruments, whereas two instruments showed floor effects in one third of the items. Findings indicated design problems with data collection related to adapting questionnaires to a web-based survey format and to problems with the stop function that was added. Implementing the main study using web-based surveys needs critical considerations according to the choice of the web tool and the recruitment process.Problemlösungskompetenz gilt als eine Fertigkeit, die Familien mit Kindern mit Behinderungen hilft, Alltagsprobleme zu bewältigen. Eine Problemlösungskompetenz für Familien kann deshalb ein wichtiges Ergebnis von Reha-Maßnahmen für Kinder und Jugendliche sein. Das Ziel der vorliegenden Pilotstudie war die Untersuchung des Aufbaus einer künftigen webbasierten Befragungsuntersuchung unter besonderer Berücksichtigung von Problemlösungsmustern bzgl. der Ressourcen in Familien mit Kindern mit Behinderungen. Die deskriptiven statistischen Analysen beruhen auf Daten von 13 Familien, und die Ergebnisse wiesen auf eine insgesamt zufriedenstellende Verteilung der Scores für drei der enthaltenen Instrumente hin, wohingegen zwei Instrumente Bodeneffekte in einem Drittel der Items aufwiesen. Die Ergebnisse wiesen auf Designprobleme bei der Datenerfassung bzgl. der Anpassung von Fragebögen an ein webbasiertes Umfrageformat sowie auf Probleme mit der zusätzlichen Stopp-Funktion hin. Die Umsetzung der Hauptstudie mit Hilfe von webbasierten Umfragen muss entsprechend der Wahl des Web-Tools und des Rekrutierungsverfahrens kritisch untersucht werden.La resolución de problemas está considerada como una habilidad que permite a las familias con niños discapacitados gestionar los problemas del día a día. Por lo tanto, la capacidad que tienen las familias de solucionar problemas puede verse como un logro importante por parte de los servicios de habilitación para niños y jóvenes. El objetivo de este estudio piloto de viabilidad fue examinar el diseño de un futuro estudio basado en un cuestionario en línea, que trata sobre los modelos de resolución de problemas en relación con los recursos de que disponen las familias con niños discapacitados. Estos análisis estadísticos descriptivos se basan en datos procedentes de 13 familias. Los hallazgos mostraron una distribución general satisfactoria de la puntuación en tres de los instrumentos utilizados, mientras que dos instrumentos mostraron valores excesivamente bajos en un tercio de los casos. Además, los hallazgos indicaron problemas de diseño en la recopilación de datos con respecto a la adaptación de los cuestionarios a un formato de cuestionario en línea, así como problemas en la función de parada. La implementación del estudio principal mediante cuestionarios en línea requiere una serie de consideraciones importantes que dependen de la elección de la herramienta de red y del proceso de reclutamiento.La capacité à résoudre les problèmes est reconnue comme une compétence qui aide les familles d'enfants handicapés à gérer les difficultés de la vie quotidienne. Les capacités de la famille à résoudre les problèmes peuvent donc être considérées comme un aspect important des services visant à encourager l'autonomie des enfants et des adolescents. Cette étude pilote de faisabilité avait pour objet d'examiner la conception d'une étude future par questionnaire via le web, focalisée sur les modèles de résolution des problèmes par rapport aux ressources disponibles dans les familles d'enfants handicapés. Les analyses statistiques descriptives s'appuient sur des données recueillies auprès de 13 familles et les résultats présentent une distribution des scores globalement satisfaisante pour trois des instruments inclus, tandis que deux instruments affichent des effets de plancher pour un tiers des items. Les résultats indiquent des problèmes de conception vis-à-vis de la collecte des données concernant l'adaptation des questionnaires à un format d'enquête via Internet avec la fonction d'arrêt qui a été ajoutée. La mise en œuvre de l'étude principale par le biais d'enquêtes via le web nécessitera un examen approfondi en ce qui concerne le choix de l'outil web et le processus de recrutement.

  • 25.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Rämgård, Margareta
    Malmö University.
    A shared respite: The meaning of place for family well-being in families living with chronic illness2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, article id 30308Article in journal (Refereed)
    Abstract [en]

    Living with chronic illness is a family affair that involves ongoing changes and challenges in everyday life. When life changes, the environment is important for family health and well-being. The relation between a place and a family is rarely described, and therefore the aim of this study was to explore the meaning of place for family well-being in families living with chronic illness. A qualitative design was chosen. Data were collected by photovoice combined with narrative family research interviews with 10 families living with chronic illness. A phenomenological hermeneutic analysis was used to interpret the data. The results showed that the meaning of place for family well-being in families living with chronic illness can be described as "a shared respite.'' This main theme included three subthemes: "a place for relief,'' "a place for reflection,'' and "a place for re-creation.'' These results were further understood by means of the concept place security. Feeling well means having place security in these families. Through knowledge about the meaning of place for family well-being, health care personnel can stimulate families living with chronic illness to find respite in places that contribute to well-being, both in familiar and new places.

  • 26.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Families Living With Chronic Illness: Beliefs About Illness, Family, and Health Care2015In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 21, no 2, p. 206-231Article in journal (Refereed)
    Abstract [en]

    Beliefs can be described as the lenses through which we view the world. With emerging illness, beliefs about the illness experience become important for nurses to understand to enhance well-being and healing. The aim of this study was to illuminate illness beliefs of families living with chronic illness. A qualitative design was chosen, including repeated narrative research interviews with seven Swedish families living with chronic illness. Hermeneutic analysis was used to interpret the transcribed family interviews. The result described beliefs in families, both within and across families. Both core beliefs and secondary beliefs about illness, family, and health care were revealed. Illness beliefs have importance for how families respond to and manage situations that arise from their encounters with illness. Nurses have to make space for and listen to families’ stories of illness to become aware of what beliefs may support and encourage family well-being and healing. The Illness Beliefs Model provides a touchstone whereby nurses can distinguish both individual and shared beliefs within families living with chronic illness and provide ideas for family intervention if needed.

  • 27.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Living as a family in the midst of chronic illness2014In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 28, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    Aims and objectives

    The aim of the study was to illuminate the meaning of lived experience of living as a family in the midst of chronic illness.

    Background

    Chronic illness implies a change for both the individual and the family. In this changed situation, all family members seem to benefit from sharing experiences and receiving support. Current research highlights the individual patient's or family member's perspectives on chronic illness, but family systems nursing (FSN) studies are warranted.

    Design

    A qualitative design with a FSN approach was chosen.

    Method

    Repeated qualitative narrative interviews with seven families living with chronic illness were performed. A phenomenological hermeneutic analysis, inspired by Ricoeur, was used to interpret the data.

    Results

    The phenomenon can be described as an ongoing movement towards well-being. The results included two themes and five sub-themes. The first theme was ‘Co-creating a context for living with illness’ with the subthemes; ‘learning to live with the expressions of illness’ and ‘communicating the illness within and outside the family’. The second theme was ‘Co-creating alternative ways for everyday life’ with the subthemes; ‘adapting to a new life rhythm’, ‘altering relationships’ and ‘changing roles and tasks in the family’.

    Conclusions

    Living as a family in the midst of chronic illness can be described as an ongoing process where the family members co-create a context for living with illness. They also co-create a context for alternative ways of everyday life.

    Relevance to clinical practice

    Knowledge about lived experience of living as a family in the midst of chronic illness can help nurses to adopt a FSN care perspective. This can increase the chances of taking advantage of the ways family members manage situations

  • 28.
    Årestedt, Liselott
    et al.
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Ramgard, Margareta
    Malmö University.
    Benzein, Eva
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Experiences of encounters with healthcare professionals through the lenses of families living with chronic illness2018In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 3-4, p. 836-847Article in journal (Refereed)
    Abstract [en]

    Aims and objectivesTo describe and explore the experience of healthcare encounters in families living with chronic illness. BackgroundLiving with chronic illness is a family concern and often includes frequent encounters with healthcare professionals. These encounters affect how persons with illness and family members handle everyday life. Disease-related explanations are perceived by healthcare professionals as being of higher importance than the actual experience of illness, even though patients are concerned with issues involving their everyday life. DesignA descriptive design with a qualitative approach. MethodsNarrative family interviews were conducted with twelve families, using a qualitative content analysis. ResultsOne main category was indicated following analysis, specifically The impact of an accompanying family member. Additionally, three subcategories were revealed; The importance of collaboration, Mutual understanding, A desire to be confirmed in one's illness. Conclusions and relevance to clinical practiceHaving a participating family member increased the sense of power in families during encounters with healthcare professionals. This participation constitutes a level of support, making it easier for families to handle everyday life due to illness. Family members are, in most cases, included in discussions and decisions, both before and after encounters, and it should be a natural for healthcare professionals to invite them to the encounter too. This is an offer that may not fit every family, but the person with illness or the family should at least have the opportunity to choose.

  • 29.
    Östlund, Ulrika
    et al.
    Karolinska Inst.
    Persson, Carina
    Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.
    Examining Family Responses to Family Systems Nursing Interventions: An Integrative Review2014In: Journal of Family Nursing, ISSN 1074-8407, E-ISSN 1552-549X, Vol. 20, no 3, p. 259-286Article, review/survey (Refereed)
    Abstract [en]

    To add to the small, but growing, number of literature reviews of family interventions in health care, a systematic literature search of Family Systems Nursing intervention research resulted in the inclusion of 17 empirical research reports. Family Systems Nursing intervention research to date has primarily used qualitative methods and a few quasi-experimental designs using pre-post outcome measures. Families' responses to Family Systems Nursing interventions were categorized in this integrative review using the cognitive, affective, and behavioral domains of family functioning proposed by Wright and Leahey. Family response in the cognitive domain found improved understanding, capability, and enhanced coping. The affective response categories showed caring more about each other and the family, improved family emotional well-being, and improved individual emotional well-being. Finally, family responses in the behavioral domain comprised caring more for each other and the family, improvement in interactions within and outside family, and healthier individual behavior. These findings may guide the design of future family nursing intervention research and the selection of family outcome measures to examine the usefulness of Family Systems Nursing interventions. More intervention research using experimental and quasi-experimental designs is needed to strengthen the evidence for Family Systems Nursing practice.

  • 30. Östlund, Ulrika
    et al.
    Wennman-Larsen, Agneta
    Persson, Carina
    Neurobiologi, vårdvetenskap och samhälle.
    Gustavsson, Petter
    Wengström, Yvonne
    Mental health in significant others of patients dying from lung cancer.2010In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 19, no 1, p. 29-37Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Definitions and measures of significant others' mental health vary, but stress processes have been associated with caregiver outcomes of this kind. Thus, various mental health outcomes probably appear, either as specific responses to particular types of caregiver stressors, or as part of a general response resulting from an accumulation of various stressors. The present study explores the occurrence of symptoms of strain with regard to depression, exhaustion, and emotional well-being in significant others of patients dying from lung cancer, and how these symptoms coexist.

    METHODS: Measures used were the Montgomery Asberg Depression Rating Scale, the OLdenburg Burnout Inventory, and the Swedish Health-Related Quality of Life Survey. Data from 84 significant others of patients dying from lung cancer were collected at a time-point during the last 4 months before the patients died and subsequently analysed. The occurrence of symptoms of strain was established by creating cut-off scores from the general population. To explore how the different symptoms coexisted, hierarchical agglomerative cluster analyses were conducted using Ward's method.

    RESULTS: Approximately 40% of the significant others reported symptoms of strain for each of the three outcomes, and a coexistence was found since the significant others clustered as subgroups, ranging from 'high on all scales' to 'low on all scales'.

    CONCLUSION: A considerable proportion of the significant others were thus negatively affected in terms of mental health. We conclude that being a significant other of a person dying from lung cancer most likely results in a general response to this major life event.

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