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  • 1.
    Cronfalk, Berit
    et al.
    Inst. onk-pat. Karolinska Inst.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Strang, Peter
    Ints.för onkologi-patologi Karolinska institutet.
    A one-day education in soft tissue massage: Experiences and opinions as evaluated by nursing staff in palliative care2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 2, p. 141-148Article in journal (Refereed)
    Abstract [en]

    Objective: Increasing awareness of well-being aspects of physical touch has spurred the appreciation for soft tissue massage (STM) as part of palliative care. Educational programs are available but with no specific focus on utilization for this kind of care. The aim was to study the feasibility of a 1-day course in STM in clarifying nursing staff's experiences and opinions, but also to shed light on their motivation and ability to employ STM in the care of dying cancer patients. Method: In all, 135 nursing staff participated. The course consisted of theory and hands-on training (hand-foot-, back massage). Focus-groups with 30/135 randomly chosen participants were conducted 4 weeks after the intervention. This study engaged a qualitative approach using content analysis. Results: The overall opinion of the 1-day course was positive. The majority experienced the contents of the course to be adequate and sufficient for clinical care. They emphasized the pedagogical expertise as valuable for the learning process. The majority of nurses shared the opinion that their extended knowledge clarified their attitudes on STM as a complement in palliative care. Still, a few found it to be too basic and/or intimate. Three categories emerged during the analysis: experiences of and attitudes toward the education, experiences of implementing the skills in every-day care situations, and attitudes to the physical body in nursing care. Significance of results: The approach to learning and the pedagogical skills of the teacher proved to be of importance for how new knowledge was perceived among nurses. The findings may encourage hospital organizations to introduce short courses in STM as an alternative to more extensive education. Copyright © 2008 Cambridge University Press 2008.

  • 2.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Welfare and Care (IVV).
    Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden.2003In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 3, p. 239-245Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease. METHOD: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method. RESULTS: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right. SIGNIFICANCE OF RESULTS: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.

  • 3.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hajradinovic, Yvonne
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Sundberg, Lars
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Axmacher Jonsson, Monica
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Prolonged grievers: A qualitative evaluation of a support group intervention2014In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 12, no 4, p. 299-308Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.

    Methods: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.

    Results: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.

    Significance of results: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

  • 4.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.
    Lindholm, Ann
    Stockholms sjukhem.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences of truth disclosure in terminally ill cancer patients in palliative home care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 2, p. 173-180Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.

    Method: We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.

    Results: Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.

    Significance of results: Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

  • 5.
    Henriksson, Anette
    et al.
    Ersta Skondal University of Coll, Sweden; Ersta Hospital, Sweden; Dalens Hospital, Sweden; Karolinska Institute, Sweden.
    Carlander, Ida
    Ersta Skondal University of Coll, Sweden; Ersta Hospital, Sweden; Karolinska Institute, Sweden.
    Årestedt, Kristofer
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal University of Coll, Sweden; Ersta Hospital, Sweden; Linnaeus University, Sweden.
    Factors associated with feelings of reward during ongoing family palliative caregiving2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 505-512Article in journal (Refereed)
    Abstract [en]

    Objective: Of the few studies that have paid attention to feelings of reward in family palliative caregiving, most are retrospective and examine the experiences of bereaved family caregivers. Although feeling rewarded has been described as an influence that may facilitate the way family caregivers handle the caregiving situation, no study has sought to identify the factors associated with feelings of reward while providing ongoing family palliative care. The aim of this study, therefore, was to identify influential factors in feelings of reward experienced by family palliative caregivers. Method: Our study had a correlational cross-sectional design. Family caregivers (n = 125) of patients receiving specialized palliative care were consecutively recruited from four settings. These caregivers answered a questionnaire that included the Rewards of Caregiving Scale (RCS). This questionnaire included questions about demographic background and scales to measure preparedness for caregiving, feelings of hope, perceived health, and symptoms of anxiety and depression. Correlation and regression analyses were conducted to identify factors associated with rewards. Results: The results demonstrated that the more prepared caregivers with higher levels of hope felt more rewarded, while caregivers with higher levels of anxiety and those in a spousal relationship with the patient felt less rewarded by caregiving. Significance of results: It seems reasonable that feeling rewarded can be a significant contributor to the overall experience of providing ongoing palliative care. The situation of family caregivers has been shown to be multifaceted and complex, and such covariant factors as preparedness, anxiety, hope, and being in a spousal relationship with the patient to influence this experience.

  • 6.
    Henriksson, Anette
    et al.
    Ersta Skondal University of Collage, Sweden; Ersta Hospital, Sweden; Dalens Hospital, Sweden; Karolinska Institute, Sweden.
    Carlander, Ida
    Ersta Skondal University of Collage, Sweden; Karolinska Institute, Sweden.
    Årestedt, Kristofer
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Ersta Skondal University of Collage, Sweden; Ersta Hospital, Sweden; Linnaeus University, Sweden.
    Feelings of rewards among family caregivers during ongoing palliative care2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1509-1517Article in journal (Refereed)
    Abstract [en]

    Objectives: Palliative family caregivers appear to experience the rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have attended to the positive and rewarding aspects in palliative family caregiving. In addition, most studies on rewards are retrospective and examine the experiences of bereaved family caregivers. The present study aimed at describing feelings of reward among family caregivers during ongoing palliative care. A further aim was to compare the experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and took place in three specialist palliative care units and one hematology unit. Participants answered a questionnaire including demographic background questions and the Rewards of Caregiving Scale (RCS). Descriptive statistics were employed to describe characteristics of the participants and the level of rewards. A Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported general high levels of reward. The greatest source of rewards involved feelings of being helpful to patients. This was closely followed by giving something to patients that brought them happiness and being there for them. The smallest sources of rewards were related to personal growth, self-satisfaction, and personal meaning. There was also an association between rewards and age but not between men and women. Significance of results: Family caregivers experienced the rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of reward seem to be about handling a situation in a satisfying way, feeling competent and confident to take care of the patient and thereby feeling proud. Support could preferably be designed to improve a family caregivers ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

  • 7.
    Kraai, I. H.
    et al.
    Univ Groningen, Netherlands.
    Vermeulen, K. M.
    Univ Groningen, Netherlands.
    Hillege, H. L.
    Univ Groningen, Netherlands.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Australian Catholic Univ, Australia.
    Hoekstra, T.
    Univ Groningen, Netherlands.
    Optimism and quality of life in patients with heart failure2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 6, p. 725-731Article in journal (Refereed)
    Abstract [en]

    Objectives. Health-related quality of life (HR-QoL) of patients with heart failure (HF) is low despite the aim of HF treatment to improve HR-QoL. To date, most studies have focused on medical and physical factors in relation to HR-QoL, few data are available on the role of emotional factors such as dispositional optimism. This study examines the prevalence of optimism and pessimism in HF patients and investigates how optimism and pessimism are associated with different patient characteristics and HR-QoL. Methods. Dispositional optimism was assessed in 86 HF patients (mean age 70 +/- 9 years, 28% female, mean left ventricular ejection fraction 33%) with the Revised Life Orientation Test (LOT-R). HR-QoL was assessed with the Minnesota Living with Heart Failure Questionnaire and the EuroQol. Results. The (mean +/- SD) total score on the LOT-R was 14.6 +/- 2.9 (theoretical range 0-24) and the scores on the subscales optimism and pessimism were 8.1 +/- 1.9 and 5.5 +/- 2.5, respectively. Higher age was related to more optimism (r = 0.22, p amp;lt; 0.05), and optimism was associated with higher generic HR-QoL (B = 0.04, p amp;lt; 0.05). Significance of results. The association found between optimism and generic HR-QoL of HF patients can lead to promising strategies to improve HF patients HR-QoL, particularly because the literature has indicated that optimism is a modifiable condition.

  • 8.
    Milberg, Anna
    et al.
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Karolinska Institutet and FoUU Stockholms sjukhem, Stockholm, Sweden.
    Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin2003In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 2, p. 171-180Article in journal (Refereed)
    Abstract [en]

    Objective: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care.

    Methods: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n = 30 interviews) during ongoing palliative home care.

    Results: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done.

    Significance of results: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

  • 9.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm.
    Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 251-262Article in journal (Refereed)
    Abstract [en]

    Objective:Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.Method:Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.Results:Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.Significance of results:The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

  • 10.
    Olsson, Louise
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Östlund, Gunnel
    Linköping University, Department of Social and Welfare Studies, Society, Diversity, Identity. Linköping University, Faculty of Arts and Sciences.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms sjukhem, Mariebergsgatan 22, SE 112 35 Stockholm, Sweden.
    Jeppsson Grassman, Eva
    Linköping University, Department of Social and Welfare Studies, NISAL - National Institute for the Study of Ageing and Later Life. Linköping University, Faculty of Arts and Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    The Glimmering Embers: Experiences of hope among cancer patients in palliative home care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 1, p. 43-54Article in journal (Refereed)
    Abstract [en]

    The experience of hope among cancer patients in palliative care is important knowledge for health care providers, but research is sparse. The aim of this paper was to explore how cancer patients admitted to palliative home care experienced the significance of hope and used hope during six weeks throughout the last phase of their life and to assess their symptoms and hope status during six weeks throughout the last phase of their lives.

    Eleven adult patients with cancer participated in twenty interviews and completed seven diaries. The participants were recruited from two palliative care units in South-East of Sweden. The methods used were Grounded Theory (GT), and analysis was based on the constant comparative method.

    The core category, glimmering embers, was generated from four processes: (1) The creation of “convinced” hope, with a focus on positive events, formed in order to have something to look forward to; (2) The creation of “simulated hope”, including awareness of the lack of realism, but including attempts to believe in unrealistic reasons for hope; (3) The collection of and maintaining of moments of hope, expressing a wish to “seize the day” and hold on to moments of joy and pleasure; and (4) “Gradually extinct” hope, characterized by a lack of energy and a sense of time running out. The different processes of hope helped the patients to continue to live when they were close to death. Hope should be respected and understood by the professionals giving them support.

  • 11.
    Rydé, Kerstin
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm.
    Crying: A force to balance emotions among cancer patients in palliative home care2007In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 5, no 1, p. 51-59Article in journal (Refereed)
    Abstract [en]

    Objective: Crying is a common but seldom studied phenomenon in palliative care. The aim of this study was to explore the significance of patients crying in a palliative care context.

    Methods: Tape-recorded interviews with 14 cancer patients in palliative home care were carried out. To gain deeper understanding, a hermeneutic analysis and interpretation was used.

    Results: Crying was described in different dimensions: (1) intense and despondent crying as a way of ventilating urgent needs, (2) gentle, sorrowful crying as a conscious release of emotions, and (3) quiet, tearless crying as a protection strategy. Crying seems to be an expression for an inner emotional force, provoked by different factors, which cause changes in the present balance. To cry openly but also to cry on the inside meant being able to achieve or maintain balance. Crying may be something useful, which could create release and help reduce tension, but it may also have a negative impact as it consumes energy and creates feelings of shame.

    Significance of results: Professionals need to understand the different levels of crying. In such situations sometimes comforting the patient may not be the best solution, as some may need privacy.

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