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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Jalmsell, Li
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Eklund, Rakel
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The Family Talk Intervention in palliative home care when a parent with dependent children has a life-threatening illness: A feasibility study from parents' perspectives2021In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 2, p. 154-160Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: One of the main goals of the Family Talk Intervention (FTI) is to increase communication within families with dependent children about illness-related consequences and to support parenting. FTI is family-centered and includes six manual-based meetings led by two interventionists. This study aims to evaluate the feasibility of the FTI in terms of acceptability from the perspective of parents in families with dependent children where one parent receives specialized palliative home care.

    METHOD: A descriptive design employing mixed methods was used to evaluate the FTI in specialized palliative home care. In total, 29 parents participated in interviews and responded to a questionnaire following FTI. Qualitative content analysis and descriptive statistics were used for analyses.

    RESULTS: FTI responded to both the ill parent's and the healthy co-parent's expectations, and they recommended FTI to other families. Parents found the design of FTI to be well-structured and flexible according to their families' needs. Many parents reported a wish for additional meetings and would have wanted FTI to start earlier in the disease trajectory. Parents also would have wished for a more thorough briefing with the interventionists to prepare before the start. The importance of the interventionists was acknowledged by the parents; their professional competence, engagement, and support were vital for finding ways to open communication within the family. The FTI meetings provided them with a setting to share thoughts and views. Parents clearly expressed that they would never have shared thoughts and feelings in a similar way without the meetings.

    SIGNIFICANCE OF RESULTS: According to parents, FTI was found acceptable in a palliative home care context with the potential to add valuable support for families with minor children when a parent is suffering from a life-threatening illness.

  • 2.
    Alvariza, Anette
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Hakola, Pia
    Stockholms Sjukhem.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    How to support teenagers who are losing a parent to cancer: Bereaved young adults' advice to healthcare professionals-A nationwide survey.2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 313-319Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The loss of a parent to cancer is considered one of the most traumatic events a teenager can experience. Studies have shown that teenagers, from the time of diagnosis, are already extremely worried about the consequences of a parent's cancer but tend to be left to manage these concerns on their own. The present study aimed to explore young adults' advice to healthcare professionals on how to support teenagers who are losing a parent to cancer.

    METHODS: This work derives from a Swedish nationwide survey and employs a qualitative approach with a descriptive/interpretive design to obtain answers to an open-ended question concerning advice to healthcare professionals. Of the 851 eligible young adults who had lost a parent to cancer when they were 13-16 years of age within the previous 6 to 9 years, 622 participated in our survey (response rate = 73%). Of these 622 young adults, 481 responded to the open-ended question about what advice to give healthcare professionals.

    RESULTS: Four themes emerged: (1) to be seen and acknowledged; (2) to understand and prepare for illness, treatment, and the impending death; (3) to spend time with the ill parent, and (4) to receive support tailored to the individual teenager's needs.

    SIGNIFICANCE OF RESULTS: This nationwide study contributes hands-on suggestions to healthcare staff regarding attitudes, communication, and support from the perspective of young adults who, in their teenage years, lost a parent to cancer. Teenagers may feel better supported during a parent's illness if healthcare professionals take this manageable advice forward into practice and see each teenager as individuals; explain the disease, its treatments, and consequences; encourage teenagers to spend time with their ill parent; and recommend sources of support.

  • 3.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Årestedt, Kristofer
    Linnéuniversitetet; Länssjukhuset i Kalmar.
    Boman, Kurt
    Umeå universitet.
    Brännström, Margareta
    Umeå universitet.
    Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 3, p. 278-285Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III-IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

    METHOD: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

    RESULTS: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

    SIGNIFICANCE OF RESULTS: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

  • 4. Browall, Maria
    et al.
    Melin-Johansson, Christina
    Göteborgs universitet.
    Strang, Susann
    Danielson, Ella
    Henoch, Ingela
    Health care staff's opinions about existential issues among patients with cancer.2010In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 8, no 1, p. 59-68Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this study was to explore health care staff's opinions about what existential issues are important to patients with cancer and staff's responsibility when existential issues are raised by patients.

    METHOD: Four focus group interviews were conducted with health care staff (N = 23) at an in-patient hospice, on an oncology ward, on a surgical ward, and with a palliative home health care team. The focus group interviews focused on two questions, first, about health care staff's opinions about patients' important existential questions and, second, about health care staff's responsibility when existential issues are raised by the patient. The interviews were tape-recorded, transcribed verbatim, and analyzed by qualitative content analysis into subcategories and categories.

    RESULTS: Four categories and 11 subcategories emerged from the first question. The first category, "life and death," was based on joy of living and thoughts of dying. The second category "meaning," consisted of acceptance, reevaluation, hope, and faith. The third category, "freedom of choice," consisted of responsibility and integrity, and the fourth and last category, "relationships and solitude," consisted of alleviation, dependency, and loss. One category emerged from the second question about the health care staff's responsibility, "to achieve an encounter," which was based on the subcategories time and space, attitudes, and invitation and confirmation.

    SIGNIFICANCE OF RESULTS: The strength of this study was that the findings were fairly congruent in different settings and in different geographical areas. Health care staff were aware of the importance of existential issues to patients. The existential issues, mentioned by health care staff, are similar to findings from studies conducted among patients, which is another strength of the present study. Health care staff are also confident about how to act when these issues are raised by the patients. The challenge for the future is to implement the findings from this study among health care staff in different settings.

  • 5.
    Doveson, Sandra E.
    et al.
    Karolinska institutet.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Fransson, Per
    Umeå universitet; Norrlands universitetssjukhus.
    Wennman-Larsen, Agneta
    Karolinska institutet; Sophiahemmet högskola.
    Identification of early symptoms and changes in QoL and functioning among men with primary localized prostate cancer who later develop metastases: A matched, prospective study2023In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 21, no 2, p. 230-238Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To identify early symptoms and changes in QoL among men with primary localized prostate cancer (PC) who later develop metastases.

    METHODS: From an ongoing prospective study of 3.885 men with localized PC, primarily treated with radiotherapy (RT), a subsample of men developing metastatic PC (mPC) following the first year after the start of RT and that had died during the follow-up (mPC group, n = 107) were matched against men who did not develop metastases (non-mPC group, n = 214). Data were collected using the EORTC QLQ-C30 and PCSS instruments. Non-parametric tests were performed for comparisons at baseline, end of RT, 3 months, and 1, 2, 3, and 5 years after RT.

    RESULTS: The final sample consists of 317 men (mPC n = 106; non-mPC n = 211) who had completed at least one questionnaire. Initially, symptom levels were generally low and QoL and functioning high in both groups. An increasing difference between the groups was found, where the mPC group gradually deteriorated from the 2-year follow-up. Significant differences were found for several outcomes at 3 and 5 years. In a sensitivity analysis, where metastatic patients were removed from the time-point of verified metastases, most differences did not remain significant. Significant deterioration over time was seen within both groups for some outcomes.

    SIGNIFICANCE OF RESULTS: The results indicate that unmet supportive needs occur over time among these men. Worsening QoL or functioning and symptoms may be difficult to recognize when the development is gradual over several years, and with various access to systematic follow-up in late phases. This highlights the need for continuous monitoring of PC patients to detect needs for supportive interventions early and throughout the disease course, also among those with non-metastatic disease who have undergone curatively intended treatment.

  • 6.
    Eilegård Wallin, Alexandra
    et al.
    Karolinska Institutet; Högskolan Dalarna.
    Steineck, Gunnar
    Göteborgs universitet; Karolinska institutet.
    Nyberg, Tommy
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Insufficient communication and anxiety in cancer-bereaved siblings: A nationwide long-term follow-up2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 5, p. 488-494Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The purpose of this study was to examine siblings' long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

    METHOD: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).

    RESULTS: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2-4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3-4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings' risk of reporting anxiety at follow-up (RR = 2.2(1.1-4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5-18.2)). No such differences were seen when the ill brother or sister was cared for at home.

    SIGNIFICANCE OF RESULTS: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

  • 7.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Norge; Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 4, p. 406-413Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

    METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

    SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 8.
    Ek, Kristina
    et al.
    Högskolan i Skövde.
    Andershed, Birgitta
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing, Gjøvik University College, Gjøvik, Norway.
    Sahlberg-Blom, Eva
    Örebro universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    "The unpredictable death"-The last year of life for patients with advanced COPD: Relatives' stories.2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 5Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The end stage of chronic obstructive pulmonary disease (COPD) is described as prolonged, and the symptom burden for patients with COPD is often high. It progresses slowly over several years and can be punctuated by abrupt exacerbations that sometimes end in sudden death or a recovery of longer or shorter duration. This makes it difficult to identify the critical junctures in order to prognosticate the progress and time of death. Patients with COPD often express a fear that the dying process is going to be difficult. There is a fear that the dyspnea will worsen and lead to death by suffocation. The present article aimed to retrospectively describe the final year of life for patients with advanced COPD with a focus on death and dying from the perspective of relatives.

    METHOD: Interviews were conducted with the relatives of deceased family members who had advanced COPD. In total, 13 interviews were conducted and analyzed by means of content analysis.

    RESULT: All relatives described the patients as having had a peaceful death that did not correspond with the worry expressed earlier by both the patients and themselves. During the final week of life, two different patterns in the progress of the illness trajectory emerged: a temporary improvement where death was unexpected and a continued deterioration where death was inevitable.

    SIGNIFICANCE OF RESULTS: The patients and their relatives lived with uncertainty up until the time of death. Little support for psychosocial and existential needs was available. It is essential for the nurse to create relationships with patients and relatives that enable them to talk about dying and death on their own terms.

  • 9. Eriksson, Gerd
    et al.
    Bergstedt, Tina Wahlström
    Melin-Johansson, Christina
    Mittuniversitetet.
    The need for palliative care education, support, and reflection among rural nurses and other staff: A quantitative study.2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 2, p. 265-74Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Many people now die in community care, and, considering the aging population, all healthcare staff members must be prepared to provide palliative care. Our objectives were to describe the total staff working in different care organizations in a rural community in Sweden and to explore palliative care competence, to describe educational gaps and the need for support and reflection, and to determine whether there are differences in care organizations, professions, age, and gender.

    METHOD: A 4-section 20-item questionnaire was distributed to 1686 staff (65% response rate): in nursing homes (n = 395), home care (n = 240), and group residential settings (n = 365). Registered nurses (n = 70), assistant nurses (n = 916), managers (n = 43), and paramedics (n = 33) participated. Descriptive and correlational statistics were employed.

    RESULTS: Significant differences were found, and 40% (53% among men) lacked palliative care education, Fewer than 50% lacked education in the spiritual/existential areas, and 75% of those aged 20-66 (75% women, 55% men) needed further education. More women than men and staff aged 50-59 had an increased need to reflect.

    SIGNIFICANCE OF RESULTS: Our study may provide guidance for managers in rural communities when planning educational interventions in palliative care for healthcare staff and may support direct education with content for specific professions.

  • 10.
    Friberg, Febe
    et al.
    University of Stavanger; Göteborgs universitet.
    Lidén, Eva
    Göteborgs universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus; Karolinska institutet.
    Öhlén, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta sjukhus; Göteborgs universitet.
    Communicating bodily changes: Physicians' ways of enabling patient understanding in gastrointestinal cancer consultations2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 03, p. 661-671Article in journal (Refereed)
    Abstract [en]

    Objective: To explore how physicians communicatively enable patients' understanding of bodily changes in gastrointestinal cancer care consultations.

    Method: Two datasets were used. The first consisted of transcribed video-recorded palliative care consultations with three oncologists and six patients diagnosed with advanced gastrointestinal cancer, in the context of outpatient palliative care. The second dataset was audio-recorded transcriptions from diagnostic consultations with six surgeons and seven patients diagnosed with colorectal cancer, in the context of cancer surgery. An inductively driven and iterative analysis of interaction was performed, guided by Wetherell et al. (2001).

    Results: Two overarching communicative strategies were identified: (1) “visualizing strategies,” with the dimensions: visible strategies (visualizing with what you actually or potentially can see), sensory strategies (visualizing with what is possible to feel), and imaginative strategies; and (2) “contrasting strategies,” with the dimensions: contrasting subjective experiences and contrasting between the patient and other people.

    Significance of results: The visualizing and contrasting communicative strategies form parts of physicians' tacit and experience-based knowledge. The strategies employed by physicians reveal clear potentials to enable patients' understanding and sense making of bodily changes. However, these strategies need to be explicated and problematized as parts of both consultation practice and basic medical education. By means of increased awareness, physicians can more easily identify turning points in patients' levels of understanding, thereby enriching ordinary medical consultations with reflected pedagogical strategies and skills in how to dialogue in a person-centered manner.

  • 11. Henoch, Ingela
    et al.
    Strang, Susann
    Browall, Maria
    Danielson, Ella
    Melin-Johansson, Christina
    Göteborgs universitet.
    Development of an existential support training program for healthcare professionals.2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1701-9Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to describe the developmental process of a training program for nurses to communicate existential issues with severely ill patients.

    METHOD: The Medical Research Council (MRC) framework for the development and evaluation of complex interventions was used to develop a training program for nurses to communicate about existential issues with their patients. The steps in the framework were employed to describe the development of the training intervention, and the development, feasibility and piloting, evaluation, and implementation phases. The development and feasibility phases are described in the Methods section. The evaluation and implementation phases are described in the Results section.

    RESULTS: In the evaluation phase, the effectiveness of the intervention was shown as nurses' confidence in communication increased after training. The understanding of the change process was considered to be that the nurses could describe their way of communicating in terms of prerequisites, process, and content. Some efforts have been made to implement the training intervention, but these require further elaboration.

    SIGNIFICANCE OF RESULTS: Existential and spiritual issues are very important to severely ill patients, and healthcare professionals need to be attentive to such questions. It is important that professionals be properly prepared when patients need this communication. An evidence-based training intervention could provide such preparation. Healthcare staff were able to identify situations where existential issues were apparent, and they reported that their confidence in communication about existential issues increased after attending a short-term training program that included reflection. In order to design a program that should be permanently implemented, more knowledge is needed of patients' perceptions of the quality of the healthcare staff's existential support.

  • 12.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Meeting the needs of family members of persons with life threatening illness: a support group programme during ongoing palliative care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 263-271Article in journal (Refereed)
  • 13.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Geriatrik Dalen sjukhus; Ersta sjukhus; Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus; Karolinska institutet.
    Årestedt, Kristofer
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet; Linnéuniversitetet .
    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. 505-12Article 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.

  • 14.
    Henriksson (Alvariza), Anette
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    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 caregiver's ability to care and to facilitate the positive aspects and rewards of caregiving and focus on strengths and resources.

  • 15.
    Holm, Maja
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Wengström, Yvonne
    Karolinska Institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Preparing for family caregiving in specialized palliative home care: an ongoing process2014In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 767-775Article in journal (Refereed)
  • 16.
    Holm, Maja
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola, Stockholm.
    Lövgren, Malin
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms sjukhem.
    Eklund, Rakel
    Uppsala universitet.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Experiences of being a severely ill parent of dependent children receiving care at home: Hopes and challenges2024In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 22, no 1, p. 169-173Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Multiple studies have focused on severely ill patients in the role as parents of dependent children, yet few have explored the thoughts and feelings within this group during palliative home care.

    METHODS: This qualitative study derives from a pilot intervention study, the Family Talk Intervention (FTI), in specialized palliative home care. The FTI is a support program with the main goal to increase family communication about illness-related topics. The study is based on field notes from 104 sessions with 20 parents taken by an interventionist during intervention delivery. The field notes were analyzed using the principles of qualitative content analysis.

    RESULTS: The field notes revealed several challenging situations for parents with severe illness. A major issue was how to find ways to talk to their children about their illness and prognosis. The parents expressed guilt for being unable to fulfill their roles as parents and partners. Existing family conflicts had escalated with the illness, according to some parents. Despite being affected by illness, parents tried to have hope, if only for small things - such as a period of ordinary family life.

    SIGNIFICANCE OF RESULTS: Severely ill parents in specialized palliative home care seek support regarding how to communicate and stay connected to their roles in the family, which is a struggle when a parent is cared for at home, while it in contrast may promote normality and hope. Communication with children is vital and needs to be brought to the attention of health-care professionals. A family-centered focus, involving both parents and children, should be embraced.

  • 17.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Universitetssjukhuset.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Stockholms Sjukhem.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska Institutet; Sahlgrenska Universitetssjukhuset.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet Högskola.
    Web-based support for spouses of patients with life-threatening illness cared for in specialized home care: A feasibility study2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-9Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Psychoeducational interventions for family caregivers have shown to be effective but not possible for all caregivers to attend; thus, web-based interventions may be a complement. This study aimed to evaluate feasibility of a web-based intervention, "narstaende.se," from the perspective of spouses of patients receiving specialized home care.

    METHODS: A website was developed, containing videos with conversations between health-care professionals and family caregivers (actors), informative texts, links to further information, and a chat forum. The aim of the website is to provide support and promote preparedness for caregiving and death, and the content is theoretically and empirically grounded. The study had a descriptive cross-sectional design. Altogether, 26 spouses answered a questionnaire, before accessing the website, and 4 weeks after this, 12 spouses were interviewed. Descriptive statistics and qualitative content analysis were used.

    RESULTS: Spouses experienced the website as being easy to use, welcoming, and with relevant content. Participating spouses would recommend "narstaende.se" to others in similar situations, and the majority found the website introduced timely. Videos seemed easily accessible and were most used, contributing to a feeling of recognition and sharing the situation. The online format was perceived as flexible, but still not all spouses visited the website, stating the desire for support in real life.

    SIGNIFICANCE OF RESULTS: A web-based intervention can be feasible for spouses in specialized home care; however, the digital format is not suitable for everyone. Further research is needed to determine the website's potential to provide support and increase preparedness for family caregivers in general.

  • 18.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlen, Joakim
    Ersta Sköndal University College, Palliative Research Centre, PRC. Göteborgs universitet.
    Meanings and experiential outcomes of bodily care in a specialist palliative context2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 3, p. 625-633Article in journal (Refereed)
    Abstract [en]

    Objective: The objective of this study was to enhance the depth of existing knowledge about meanings and experiential outcomes of bodily care in the context of an inpatient specialist palliative setting.

    Method: Interpretative phenomenology was chosen as the study sought to explore individuals' lived experiences related to bodily care. Nine participants (five women, four men) of various ages and with various metastasized cancers and bodily-care needs, all from one specialist palliative care ward, participated. Data were collected with repeated narrative interviews and supplementary participating observations. Analysis was informed by van Manen's approach.

    Results: The following meanings and experiential outcomes of bodily care were revealed by our study: maintaining and losing body capability, breaching borders of bodily integrity, being comforted and relieved in bodily-care situations, and being left in distress with unmet needs. These meanings overlap and shape the nature of each other and involve comforting and distressing experiences related to what can be described as conditional dimensions: the particular situation, one's own experiences of the body, and healthcare professionals' approaches.

    Significance of results: The results, based on specialist palliative care patients' experiences, outline the meanings and outcomes that relate to the quintessence and complexity of palliative care, deriving from dying persons' blend of both basic and symptom-oriented bodily-care needs. Moreover, the results outline how these two dimensions of care equally influence whether comfort and well-being are facilitated or not. Considering this, specialist palliative care may consider how to best integrate and acknowledge the value of skilled basic nursing care as part of and complementary to expertise in symptom relief during the trajectories of illness and dying.

  • 19.
    Klarare, Anna
    et al.
    Karolinska institutet; Sophiahemmet Högskola.
    Rasmussen, Birgit, H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet Högskola; Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet; Karolinska institutet.
    Hansson, Johan
    Karolinska institutet.
    Lundh Hagelin, Carina
    Sophiahemmet Högskola; Stiftelsen Stockholms sjukhem; Karolinska institutet.
    Experiences of security and continuity of care: patients' and families' narratives about the work of specialized palliative home care teams2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 2, p. 181-189Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Those who are seriously ill and facing death are often li ing with physical, emotional, social, and spiritual suffering. Teamwork is considered to be necessary to holistically meet the diverse needs of patients in palliative care. Reviews of studies regarding palliative care team outcomes have concluded that teams provide benefits, especially regarding pain and symptom management. Much of the research concerning palliative care teams has been performed from the perspective of the service providers and has less often focused on patients' and families' experiences of care.

    OBJECTIVE: Our aim was to investigate how the team's work is manifested in care episodes narrated by patients and families in specialized palliative home care (SPHC).

    METHOD: A total of 13 interviews were conducted with patients and families receiving specialized home care. Six patients and seven family members were recruited through SPHC team leaders. Interviews were transcribed verbatim and the transcripts qualitatively analyzed into themes.

    RESULTS: Two themes were constructed through thematic analysis: (1) security ("They are always available," "I get the help I need quickly"); and (2) continuity of care ("They know me/us, our whole situation and they really care"). Of the 74 care episodes, 50 were descriptions of regularly scheduled visits, while 24 related to acute care visits and/or interventions.

    SIGNIFICANCE OF RESULTS: Patients' and family members' descriptions of the work of SPHC teams are conceptualized through experiences of security and continuity of care. Experiences of security are fostered through the 24/7 availability of the team, sensitivity and flexibility in meeting patients' and families' needs, and practical adjustments to enable care at home. Experiences of continuity of care are fostered through the team's collective approach, where the individual team member knows the patients and family members, including their whole situation, and cares about the little things in life as well as caring for the family unit.

  • 20.
    Lind, Susanne
    et al.
    Karolinska institutet.
    Sandberg, J
    Jönköping university.
    Brytting, Tomas
    Ersta Sköndal Bräcke University College, The Institute for Organisational and Worklife Ethics.
    Fürst, C J
    Lunds universitet.
    Wallin, L
    Karolinska institutet.
    Implementation of the integrated palliative care outcome scale in acute care settings: a feasibility study.2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 6, p. 698-705Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.

    METHOD: A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals. Result Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers' involvement in the implementation differed between the units. Significance of the results The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.

  • 21.
    Lind, Susanne
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Wallin, Lars
    Karolinska institutet; Högskolan Dalarna; Göteborgs universitet.
    Fürst, Carl Johan
    Lunds universitet; Region Skåne.
    Beck, Ingela
    Lunds universitet; Region Skåne; Högskolan Kristianstad.
    The integrated palliative care outcome scale for patients with palliative care needs: Factors related to and experiences of the use in acute care settings.2019In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 17, no 5, p. 561-568Article in journal (Refereed)
    Abstract [en]

    Objective: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings.

    Method: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.

    Result: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.

    Significance of results: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

  • 22.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Eilertsen, Mary-Elizabeth B
    Norwegian University of Technology and Science, Trondheim, Norway.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief2019In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 17, no 2, p. 138-142Article in journal (Refereed)
    Abstract [en]

    Objective: Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents' and young adults' ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief.

    Method: This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief ("What has helped you to cope with your grief after your sibling's death?") and one closed-ended question about siblings' long-term grief ("Do you think you have worked through your grief over your sibling's death?"). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings' long-term grief.

    Result: The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings' experience of having worked through their grief two to nine years after the loss (p = 0.016).

    Significance of results: Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

  • 23.
    Martinsson, Lisa
    et al.
    Umeå universitet.
    Axelsson, Bertil
    Umeå universitet; Swedish Register of Palliative Care, Kalmar.
    Melin-Johansson, Christina
    Mittuniversitetet; Göteborgs universitet.
    Patients' perspectives on information from physicians during palliative chemotherapy: A qualitative study2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 5, p. 495-502Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: During the course of their disease, patients with cancer receiving palliative chemotherapy receive extensive amounts of information from physicians. The objective of our study was to describe patients' perspectives on the information they received from physicians during palliative chemotherapy with regard to their cancer diagnosis, treatments, prognosis, and future planning.

    METHOD: A total of 15 semistructured face-to-face interviews with patients who had incurable cancer were conducted, transcribed verbatim, and analyzed with qualitative content analysis.

    RESULTS: Three categories were defined during the analytical process: "having a chronic disease," "depending on chemotherapy," and "living with an unpredictable future."

    SIGNIFICANCE OF RESULTS: Our study demonstrated that patients undergoing palliative chemotherapy perceived that their disease was incurable and chronic, that they were dependent on chemotherapy, and that their future was uncertain. Compared with other studies, the patients in our study seemed to be more aware of their prognosis and the goals of care.

  • 24.
    Melcher, Ulrica
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm.
    Sandell, Rolf
    Lunds universitet.
    Henriksson (Alvariza), Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus, Stockholm; Capio Geriatrik Dalen, Stockholm.
    Maintaining everyday life in a family with a dying parent: Teenagers' experiences of adapting to responsibility2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1595-1601Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Teenagers are living through a turbulent period in their development, when they are breaking away from the family to form their own identities, and so they are particularly vulnerable to the stressful situation of having a parent affected by a progressive and incurable illness. The current study sought to gain more knowledge about the ways that teenagers themselves describe living in a family with a seriously ill and dying parent. More specifically, the aims were to describe how teenagers are emotionally affected by everyday life in a family with a dying parent and to determine how they attempt to adapt to this situation.

    METHOD: The study employed a descriptive and interpretive design using qualitative content analysis. A total of 10 teenagers (aged 14-19 years, 7 boys and 3 girls) participated through repeated, individual, informal interviews that were carried out as free-ranging conversations.

    RESULTS: While contending with their own vulnerable developmental period of life, the teenagers were greatly affected by their parent's illness and took on great responsibility for supporting their parents and siblings, and for maintaining family life. Lacking sufficient information and support left them rather unprepared, having to guess and to interpret the vague signs of failing health on their own, with feelings of uncertainty and loneliness as a consequence.

    SIGNIFICANCE OF RESULTS: Support from healthcare professionals should be designed to help and encourage parents to have open communications about their illness with their teenaged children. Our results add further support to the literature, reinforcing the need for an approach that uses a systemic perspective and considers the family to be the appropriate unit of care and offers a suitable support system.

  • 25.
    Melin-Johansson, Christina
    et al.
    Göteborgs universitet.
    Odling, Gunvor
    Axelsson, Bertil
    Danielson, Ella
    The meaning of quality of life: narrations by patients with incurable cancer in palliative home care.2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 3, p. 231-8Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this qualitative study was to elucidate the meaning of quality of life as narrated by patients with incurable cancer approaching death in palliative home care in Sweden.

    METHODS: To gain a deeper understanding of what quality of life means for dying patients, data were collected from narrative interviews with eight patients in their homes in 2004-2006. Qualitative content analysis was used to interpret the meaning regarding quality of life.

    RESULTS: Three main themes were found: being in intense suffering, having breathing space in suffering, and being at home. Living with incurable cancer at the end of life was experienced as living in physical distress as the body became incapacitated by unexpected physical complications. This incapacity had consequences on patients' psychological, social, and existential well-being. As the complication phase abated, the patients experienced that they regained hopefulness and had time to reflect on existential issues. Patients were provided affirmative care at home from family caregivers and the palliative home care team.

    SIGNIFICANCE OF RESULTS: This study shows that it is feasible to perform individual interviews with patients approaching death and elucidate the meaning of patients' quality of life in palliative home care. Patients oscillate between being in intense suffering and having breathing space in this suffering, which somewhat opposes the traditional picture of a continuous linear deterioration. Being cared for at home by family caregivers and health care professionals provided a sense of independency and security. Being at home safeguards patients' entire life situation and increases quality of life.

  • 26.
    Melin-Johansson, Christina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet; Karolinska universitetssjukhuset.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Högskolan Dalarna; Centrum för klinisk forskning, Dalarna.
    A third of dying patients do not have end-of-life discussions with a physician: A nationwide registry study2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 20, no 3, p. 357-362Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of the study was to explore the proportion of adult patients and next-of-kin who had end-of-life (EOL) discussions and associated factors.

    METHOD: A retrospective nationwide registry study was reported with data from the Swedish Register of Palliative Care. All patients in Sweden in hospitals, nursing homes, own homes, community, and palliative care units during 2015-2017 and their next-of-kin were included. Data were reported to the register by healthcare staff, based on diseased patients' records regarding their last days of life, and were voluntary. Descriptive statistics illustrated the proportion of patients/next-of-kin who had EOL discussions and logistic regressions were used to examine associated factors.

    RESULTS: About half of the patients (46%) did have an EOL discussion, but a third (32%) did not. Associated factors of those who did not have an EOL discussion were dementia (48.5%) or stroke (47.5%), older age (38.4%), being female (33.6%), being cared for in a nursing home (41.3%), or hospital (40.3%), having lost decision-making ability months before death (58.9%), and not having a documented decision to shift to EOL care (82.7%). Younger patients diagnosed with cancer and cared for at a palliative unit were more likely to have EOL discussions. The regression analysis showed similar results for next-of-kin.

    SIGNIFICANCE OF RESULTS: The result shows that not all patients with palliative care needs have equal access to EOL discussions, despite efforts at a national level and the recognized benefits of timely communication about the EOL care. Further efforts must be made to achieve EOL discussions for all patients.

  • 27.
    Norinder, Maria
    et al.
    Capio palliativ vård, Dalen, Stockholm.
    Goliath, Ida
    Karolinska institutet.
    Alvariza, Anette
    Capio palliativ vård, Dalen, Stockholm.
    Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 3, p. 305-312Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.

    METHOD: Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.

    RESULTS: Patients' experiences were represented by three themes: "safe at home," "facilitated and more honest communication," and "feeling like a unit of care." Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

    SIGNIFICANCE OF RESULTS: Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

  • 28.
    Norinder, Maria
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative Care, Dalen Hospital, Stockholm.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar; Department of Research, Region Kalmar County.
    Axelsson, Lena
    Department of Nursing Science, Sophiahemmet University, Stockholm.
    Grande, Gunn
    Division of Nursing, Midwifery & Social Care, Faculty of Biology, Medicine and Health, University of Manchester, United Kingdom.
    Ewing, Gail
    Centre for Family Research, University of Cambridge, United Kingdom.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Research and Development Unit/Palliative Care, Stockholms Sjukhem, Stockholm.
    Increased preparedness for caregiving among family caregivers in specialized home care by using the Carer Support Needs Assessment Tool Intervention2023In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 1-7Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

    METHODS: The study had a pre-post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness - Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

    RESULTS: Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

    SIGNIFICANCE OF RESULTS: The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention's potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

  • 29.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Öhlén, Joakim
    Göteborgs universitet; Sahlgrenska universitetssjukhuset.
    Larsdotter ex. Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    The influence of care place and diagnosis on care communication at the end of life: bereaved family members' perspective2021In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 6, p. 664-671Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members' perspective.

    METHOD: A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

    RESULTS: Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

    SIGNIFICANCE OF RESULTS: This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members' reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

  • 30.
    Ozanne, Anneli
    et al.
    Göteborgs universitet; Sahlgrenska universitetssjukhuset.
    Henoch, Ingela
    Göteborgs universitet.
    Öhlén, Joakim
    Göteborgs universitet; Sahlgrenska universitetssjukhuset.
    Jakobsson Larsson, Birgitta
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Mittuniversitetet.
    Impact of an education program to facilitate nurses' discussions of existential issues in neurological care2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 20, no 5, p. 630-636Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Discussing existential issues is integral to caring for people with acute, progressive, or life-limiting neurological illness, but there is a lack of research examining how nurses approach existential issues with this patient group and their family members. The purpose was to examine the experiential impact of an educational program for nurses designed to facilitate discussions of existential issues with patients and family members in neurological wards.

    METHOD: Nurses in inpatient and outpatient care at a neurological clinic in Sweden were invited to participate in an education program about discussing existential issues with patients and their family members as related to neurological conditions. The evaluation of the program and of the nurses' view of discussing existential issues was conducted through focus groups before and after participation. The data were analyzed by qualitative content analysis.

    RESULTS: The program gave nurses a deeper understanding of existential issues and how to manage these conversations with patients and their family members. Both internal and external barriers remained after education, with nurses experiencing insecurity and fear, and a sense of being inhibited by the environment. However, they were more aware of the barriers after the education, and it was easier to find strategies to manage the conversations. They demonstrated support for each other in the team both before and after participating in the program.

    SIGNIFICANCE OF RESULTS: The educational program gave nurses strategies for discussing existential issues with patients and family members. The knowledge that internal and external barriers impede communication should compel organizations to work on making conditions more conducive, for example, by supporting nurses to learn strategies to more easily manage conversations about existential issues and by reviewing the physical environment and the context in which they are conducted.

  • 31.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Parents’ views on what facilitated or complicated their grief after losing a child to cancer2021In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 19, no 5, p. 524-529Article in journal (Refereed)
    Abstract [en]

    Objectives: The loss of a child is a devastating event, and bereaved parents often suffer intense and long-lasting grief reactions and are at risk for psychological symptoms. More knowledge about how parents cope with grief may improve the support to bereaved parents. This study, therefore, aimed to explore parents' views on what facilitated or complicated their grief coping after losing a child to cancer.

    Methods: This study was derived from a nationwide postal survey. Cancer-bereaved parents (n = 161) provided written responses to two open-ended questions: "Is there anything that has helped you cope with your grief after your child's death?" and "Is there anything that made it difficult for you to cope with your grief?" Content analysis was used to analyze the responses.

    Results: Parents reported that a supportive social network of family and friends, and having remaining children, facilitated their coping with grief. Meeting professional counselors and meeting other bereaved parents, connecting to memories of the deceased child in various contexts, including school and pediatric care settings, were also reported facilitating grief coping. Parents stated that the following experiences had complicated grief coping: additional losses in their family or social network; not being able to share emotions with their partner; when they perceived that friends, relatives, or colleagues lacked empathy or patience; when they felt challenging demands from employers at a too early stage.

    Significance of results: This study contributes to the understanding of parents' grief experiences and what has facilitated or complicated their coping with grief, which can help health care professionals and others improve bereavement support services.

  • 32.
    Seiger Cronfalk, Berit
    et al.
    Ersta Sköndal University College, Department of palliative care research. Karolinska institutet.
    Friedrichsen, Maria
    Milberg, Anna
    Strang, Peter
    A one-day education in soft tissue massage: experiences and opinions as evaluated by nursing staff in palliative care.2008In: 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.

  • 33.
    Seiger-Cronfalk, Berit
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet, Stockholm, Sweden; Stord Haugesund University College, Haugesund, Norway.
    Ternestedt, Britt-Marie
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska Institutet, Stockholm, Sweden .
    Franklin Larsson, Lise-Lotte
    Ersta Sköndal University College, Palliative Research Centre, PRC. Sophiahemmet University College, Stockholm, Sweden.
    Henriksen, Eva
    Stockholm County Council, Research and Development FOUnu, Stockholm, Sweden.
    Norberg, Astrid
    Ersta Sköndal University College, Palliative Research Centre, PRC. Umeå University, Sweden.
    Österlind, Jane
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Utilization of palliative care principles in nursing home care: Educational interventions2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 6, p. 1745-1753Article in journal (Refereed)
    Abstract [en]

    Objective: This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care.

    Method: Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used.

    Results: The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people.

    Significance of results: Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.

  • 34.
    Smedbäck, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Öhlén, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen sjukhus, Stockholm; Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Palliative care during the final week of life of older people in nursing homes: A register-based study2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 4, p. 417-424Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

    METHOD: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

    RESULTS: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

    SIGNIFICANCE OF RESULTS: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

  • 35.
    Sveen, Josefin
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Melcher, Ulrica
    Ersta sjukhus, Hospicekliniken, Stockholm.
    Alvariza, Anette
    Ersta Sköndal University College, Palliative Research Centre, PRC. Ersta Sköndal University College, Department of Health Care Sciences. Capio Palliativ vård Dalens sjukhus, Stockholm; Karolinska institutet, Stockholm.
    Teenagers' reasoning about a parent's recent death in cancer2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 14, no 4, p. 349-357Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of the study was to explore how teenagers reason about a parent's recent death and about their life without that parent.

    Method: A total of 10 teenagers (aged 14–19 years, 7 boys and 3 girls) were interviewed twice, 3–12 months after their parent's death. The interviews were carried out individually and as free-ranging conversations. A content analysis with a descriptive and interpretive design was conducted.

    Results: Importantly, all teenagers appreciated participating in the interviews. Some had not previously talked in such depth about this with anyone, while others had more open communications within their families and with others. Their parent's death was the worst thing that could happen, but they still expressed the feeling that it had been a relief for both the ill parent and themselves. The death had relieved the parent from suffering and a life with severe illness. Many of the teenagers empathized with the surviving parent's grief and worried about him or her as well as the entire home situation. As a consequence, the teenagers did not show their grief, as they did not want to burden the grieving parent. Seeing the parent grieving could lead to feelings of loneliness and hopelessness and that the support they needed was not there for them. Nevertheless, some teenagers could grieve together with the surviving parent in common understanding and with openness.

    Significance of Results: A tentative conclusion is that the teenagers who were more likely to talk and grieve together with their surviving parent coped better with their situation than teenagers who did not. Parentally bereaved teenagers tend to take on a responsibility to support the grieving parent, when it is they themselves who need and should receive support.

  • 36. Wallerstedt, Birgitta
    et al.
    Benzein, Eva
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Andershed, Birgitta
    Ersta Sköndal University College, Enheten för forskning i palliativ vård.
    Sharing living and dying - a balancing act between vulnerability and a sense of security: Enrolled nurses’ experiences of working in the sitting service for dying patients at home2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9Article in journal (Refereed)
  • 37.
    Wallin, Viktoria
    et al.
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Carlander (Goliath), Ida
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Sandman, Per-Olof
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Palliative Research Centre, PRC. Karolinska institutet.
    Meanings of eating deficiencies for people admitted to palliative home care2015In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 13, no 05, p. 1231-1239Article in journal (Refereed)
    Abstract [en]

    Food and eating are embedded in people's everyday social lives: at home with family members and as part of social interactions. For people with progressive life-limiting conditions, however, eating is often obstructed. The objective of the present study was to explore the meanings of living with eating deficiencies at the end of life among people admitted to specialist palliative home care.

    This qualitative inductive study employed an interpretive descriptive approach. A dozen persons, with various diagnoses and eating deficiencies, admitted to two specialist palliative home care units, participated. Data were collected through individual repeated interviews. Data collection and analysis were guided by the interpretive description method.

    The results reveal that eating deficiencies among people with progressive life-limiting conditions are existentially loaded markers of impending death. Finding ways to overcome declined food intake and hampered eating enabled our participants to feel able to influence their own well-being and remain hopeful. The results also showed that the eating deficiencies influenced participants' relationships and social interactions in ways that hampered their possibilities of sharing valuable moments together with friends and family members during the final period of life.

    Efforts to minimize the distress that people experience in relation to the challenges they face with eating deficiencies are important for well-being at the end of life. Person-centered approaches to acknowledge and support individuals' own ways of experiencing and dealing with their eating deficiencies are recommended that include a multidimensional perspective on food and eating.

  • 38.
    Weber Falk, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Eklund, Rakel
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Breaking the silence about illness and death: Potential effects of a pilot study of the family talk intervention when a parent with dependent children receives specialized palliative home care2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, p. 512-518Article in journal (Refereed)
    Abstract [en]

    Objective: The entire family is affected when a parent is severely ill. Parents often need and appreciate professional support when talking to children about illness and death. The family talk intervention (FTI) is family-centered and intends to promote communication about the illness and its consequences, support parenting to enhance family coping and help family members share experiences with each other to create a shared family history. This study aimed to explore potential effects of FTI in specialized palliative home care, as reported by parents.

    Method: This pre-post test intervention pilot was conducted in specialized palliative home care. A convergent mixed-method design was used to analyze interview and questionnaire data. Twenty families with dependent children were recruited from two specialized palliative home care units in Stockholm, Sweden.

    Results: Parents reported that family communication improved after participation in FTI as family members learned communication strategies that facilitated open sharing of thoughts and feelings. Increased open communication helped family members gain a better understanding of each other's perspectives. Parents reported that relationships with their partner and children had improved as they now shared several strategies for maintaining family relationships. Parents were also less worried following participation in FTI. The ill parents stated that they gained a sense of security and were less worried about the future.

    Significance of results: This study adds to the evidence that FTI may be a useful intervention for families with dependent children and an ill parent in a palliative care setting. This trial is registered at ClinicalTrials.gov Identifier NCT03119545.

  • 39.
    Winterling, Jeanette
    et al.
    Karolinska institutet; Karolinska universitetssjukhuset.
    Kisch, Annika
    Lunds universitetssjukhus; Lunds universitet.
    Alvariza, Anette
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Årestedt, Kristofer
    Linnéuniversitetet; Region Kalmar län.
    Bergkvist, Karin
    Karolinska institutet; Sophiahemmet högskola.
    Preparedness for family caregiving prior to allogeneic hematopoietic stem cell transplantation2022In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, no 4, p. 519-526Article in journal (Refereed)
    Abstract [en]

    Objective: Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers’ preparedness for the tasks and demands of the caregiving role prior to allo-HSCT might help them during this distressing time. The aim of this study was to explore whether demographic factors are associated with preparedness for caregiving prior to allo-HSCT and if such preparedness for caregiving is associated with caregiver outcomes in terms of caregiver burden, anxiety/depression, competence, self-efficacy, and general health among family caregivers.

    Method: This correlational cross-sectional study included 86 family caregivers of patients to undergo allo-HSCT, who completed a self-administered questionnaire on preparedness, caregiver burden, anxiety/depression, competence, self-efficacy, and general health. Descriptive statistics and multiple regression models (linear and ordinal) were used to analyze the data.

    Results: Family caregivers with a higher education and those who were the patient’s partner were significantly associated with a higher level of preparedness for caregiving, while gender and age were not significant. Higher preparedness was significantly associated with higher competence and self-efficacy and lower symptoms of depression, even after the model was adjusted for education, relationship to the patient, gender, and age but not for anxiety or caregiver burden. Higher levels of preparedness were also significantly associated with better general health.

    Significance of results: A higher level of preparedness for caregiving prior to allo-HSCT was associated with better family caregiver outcomes. Assessing family caregivers prior to allo-HSCT to identify those with insufficient preparedness might enable the provision of individually tailored psycho-educational support to help them cope with their caregiving role and prevent potential negative consequences.

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