| 1. |
- Melcher, Ulrica, et al.
(författare)
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Teenagers with a Dying Parent : A Qualitative Retrospective Study
- 2014
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Ingår i: Abstracts of the 8th World Research Congress of the European Association for Palliative Care (EAPC) Lleida, Spain 5–7 June 2014. - : SAGE Publications. ; , s. 797-797
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Background: Beeing a teenager living with a dying parent is well known to be distressing with a significant impact on teenagers psychological well-beeing. To support teenagers and prevent long-term psychological consequences we need to find out more about teenagers experiences. Aim: The aim was to explore teenagers experiences from living with a severely ill dying parent. Method: Repeated qualitative interviews were conducted with ten teenagers that had lost a parent within a year. The parent had received specialist palliative care by the time of death. Qualitative content analyses were used for analyses. Results: Preliminary results show that teenagers carry a great responsibility in the care of the sick parent and the healthy parent, siblings and general ordinary family matters. While carrying this responsibility they experience loneliness and try to adjust to the situation in different ways by being loyal to their parents. In their process to understand that the parent is dying they prepare by observing and trying to make sense of the illness symptoms they notice. Feeling trust to and support from the parents makes them feel more involved and less lonely and responsible. Conclusion: This study contributed with knowledge about great feelings of responsibility and loneliness among teenagers who has a dying parent. Healthcare professionals in palliative care could work to acknowledge and try to support the teenagers to feel involved, less lonely and less burdened by responsibility. An important aspect is also to support the healthy parent enough and thereby reduce the responsibility from the teenager.
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| 2. |
- Henriksson, Anette, 1967-, et al.
(författare)
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Adaptation and psychometric evaluation of the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in a sample of Swedish family members of patients with life-threatening illness
- 2012
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Ingår i: Palliative Medicine. - London, United Kingdom : SAGE Publications. - 0269-2163 .- 1477-030X. ; 26:7, s. 930-938
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving. Aim: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness. Design: Correlational. Setting/participants: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability. Results: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9. Conclusions: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture. © 2011 The Author(s).
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| 3. |
- Henriksson, Anette, 1967-, et al.
(författare)
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Effects of a support group programme for patients with life-threatening illness during ongoing palliative care
- 2013
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Ingår i: Palliative Medicine. - London, United Kingdom : SAGE Publications (UK and US). - 0269-2163 .- 1477-030X. ; 27:3, s. 257-264
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Tidskriftsartikel (refereegranskat)abstract
- Background: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. less thanbrgreater than less thanbrgreater thanAim: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care. less thanbrgreater than less thanbrgreater thanDesign: A prospective quasi-experimental design, including an intervention group and a comparison group, was used. less thanbrgreater than less thanbrgreater thanSettings/participants: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons. less thanbrgreater than less thanbrgreater thanResults: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes. less thanbrgreater than less thanbrgreater thanConclusions: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.
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| 4. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care : A correlational, cross-sectional study
- 2013
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 27:7, s. 639-646
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Tidskriftsartikel (refereegranskat)abstract
- Background: Family caregivers in palliative care often report feeling insufficiently prepared to handle the caregiver role. Preparedness has been confirmed as a variable that may actually protect family caregiver well-being. Preparedness refers to how ready family caregivers perceive they are for the tasks and demands in the caregiving role. Aim: The aim of this study was to explore factors associated with preparedness and to further investigate whether preparedness is associated with caregiver outcomes. Design: This was a correlational study using a cross-sectional design. Setting/participants: The study took place in three specialist palliative care units and one haematology unit. A total of 125 family caregivers of patients with life-threatening illness participated. Result: Preparedness was significantly associated with higher levels of hope and reward and with a lower level of anxiety. In contrast, preparedness was not associated with depression or health. Being female and cohabiting with the patient were significantly associated with a higher level of preparedness. The relationship to the patient was significantly associated with preparedness, while social support, place of care, time since diagnosis and age of the patients showed no association. Conclusion: Feelings of preparedness seem to be important for how family caregivers experience the unique situation when caring for a patient who is severely ill and close to death. Our findings support the inclusion of preparedness in support models for family caregivers in palliative care. Psycho-educational interventions could preferably be designed aiming to increase family caregiver's preparedness to care, including practical care, communication and emotional support.
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| 5. |
- Henriksson (Alvariza), Anette, et al.
(författare)
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Feelings of Reward among Family Caregivers during Ongoing Palliative Care
- 2014
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 613-614
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Konferensbidrag (refereegranskat)abstract
- Objectives: Palliative family caregivers appear to experience rewards of caregiving concurrent with burdens and negative feelings. Relatively few studies have especially 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. This study aimed to describe feelings of rewards among family caregivers during ongoing palliative care. A further aim was to compare experience of rewards in relation to sex and age. Methods: The sample consisted of 125 family caregivers and the study 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 used to describe characteristics of the participants and the level of rewards. Mann-Whitney U test was used to compare differences between groups of different sex and age. Results: Palliative family caregivers reported in general high levels of reward.The largest source of rewards was feelings of being helpful to the patient. This was closely followed by rewards as a consequence of giving something to the patients that brought her/him happiness and being there for the patient. The smallest sources of rewards were personally growth, self-satisfaction and personal meaning. There was an association between rewards and age but not between men and women. Conclusions: Family caregivers experienced rewards of caregiving during ongoing palliative care despite their unique and stressful situation. Feelings of rewards seem to be about handling the situation in a satisfying way, to feel competent and confident to take care of the patient and thereby feel proud. Support could preferably be designed aiming to improve family caregiver’s ability to care and to facilitate rewards of caregiving and focus on strengths and resources.
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| 6. |
- Holm, Maja, et al.
(författare)
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The Process of Preparedness for Caregiving among Family Members in Palliative Home Care
- 2014
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; , s. 622-623
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Konferensbidrag (refereegranskat)abstract
- Background: Preparedness for caregiving has been found to be an important concept in palliative home care where family members are taking a great responsibility for the patient’s care. Low preparedness has been linked to negative consequences and a greater burden for these family members. Preparedness has been defined as the perceived readiness to provide care and could be seen as a continuous process rather than a static condition. Aim: The aim of the study was to describe the process of preparedness for caregiving among family members in palliative home care. Method: An interpretive descriptive design was chosen. A strategic sampling method was applied and 12 family members of patients in specialised palliative home care were interviewed, using a semi-structured interview guide. The interviews were analysed by constant comparative analysis, using the software program NVivo. Results: The process of preparedness for caregiving included three patterns: Awaring, adjusting and grieving. The process was not described as linear but rather a continuous process where the family members were moving between the patterns during the trajectory. In all three patterns, grief was an important factor, affecting the caregiver role and the family members´ preparedness for caregiving. Conclusion: Exploring the process of preparedness for caregiving in family members could bring a greater understanding for this group and provide health professionals with new insights in how to support them.
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| 7. |
- Håkanson, Cecilia, et al.
(författare)
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Experience-based knowledge in the care of homeless people with severe illness and complex care needs
- 2014
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 28:6, s. 789-789
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Tidskriftsartikel (refereegranskat)abstract
- Background: The number of homeless people in Sweden amounts to approximately 34 000. Of those about 4500 live in streets or shelters. The mortality rate among homeless people outnumbers other groups in the society. Often they have severe, multiple mental and physical illnesses, drug abuse and a variety of complex care needs, including palliative. From an international perspective, research related to care for homeless people with severe illness and complex care needs is very sparse (no Swedish studies have been identified). Among the few that have been found, challenges related to the homeless situation and the illness panorama are reported. From the perspective of the homeless persons themselves, studies report stigmatisation, lack of respect and competence among health-care professionals, and insufficient organisation of health care.Aim: The aim of this study is to explore the development of experience-based knowledge among health care professionals and social workers in a unique setting, in which advanced inpatient health -and social care, including palliative care is provided to homeless people.Methods: In this on-going qualitative case-study, clinically relevant and applicable knowledge is focused. Repeated focus group discussions and coupled thematic interviews were performed with staff (physicians, social workers, mental carers, nurses). Analysis is performed with an interpretive descriptive method.Results and implication: The results, which are currently being processed, will present staffs’ experiences of identification and assessment of individual care needs, specific knowledge development and requirement in relation to palliative care and homelessness, and challenges, obstacles and opportunities for meeting the needs of severely ill and dying homeless people. The results will provide knowledge of importance for the development of care for severely ill homeless persons.
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| 8. |
- Johnston, Bridget, et al.
(författare)
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An evaluation of the use of Telehealth within palliative care settings across Scotland
- 2012
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Ingår i: Palliative Medicine. - : SAGE Publications. - 0269-2163 .- 1477-030X. ; 26:2, s. 152-161
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Tidskriftsartikel (refereegranskat)abstract
- There is a lack of evidence-based research in the use of Telehealth within palliative care in the UK, particularly in Scotland. The aim of this project was to evaluate the current use of Telehealth applications within palliative care across Scotland, and how these and future applications are perceived by patients, carers and professionals. This paper reports on the qualitative findings from focus groups with patients and carers in three geographical areas in Scotland, and individual interviews with key stakeholders from across Scotland, who currently work within areas of high and low Telehealth activity. The key findings indicated that Telehealth initiatives are welcomed by patients and carers but that these should be an adjunct to clinical care rather than an alternative. The stakeholder interviews revealed several notable differences between those working within areas of high and low Telehealth activity. Principally, areas of high Telehealth activity appear to be driven by national and local policy and seem to benefit from a greater level of investment in Telehealth equipment and facilities than in the more central, and hence accessible, parts of Scotland.
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| 9. |
- Karlsson, Marit, et al.
(författare)
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Dying cancer patients' own opinions on euthanasia : An expression of autonomy? A qualitative study.
- 2012
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Ingår i: Palliative Medicine. - London, UK : Sage Publications Ltd.. - 0269-2163 .- 1477-030X. ; 26:1, s. 34-42
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.
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| 10. |
- Lennernäs, Bo, 1963, et al.
(författare)
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Sublingual administration of fentanyl to cancer patients is an effective treatment for breakthrough pain: results from a randomized phase II study.
- 2010
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Ingår i: Palliative medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 24:3, s. 286-93
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Tidskriftsartikel (refereegranskat)abstract
- In this study we evaluated the efficacy and tolerability of sublingual fentanyl (SLF) for breakthrough pain (BTP) in adult opioid-tolerant cancer patients. Patients received one dose of placebo, SLF 100, 200 and 400 microg in random order at four pain episodes. The primary efficacy endpoint was pain intensity difference (PID) from baseline. Twenty-seven patients received study medication. Overall PID increased significantly with SLF 400 microg versus placebo (8.57 mm, p <0.0001). Improvements were statistically different from placebo at 15 min (p = 0.005). SLF 100 and 200 microg showed a numerical trend towards improved pain relief. A dose that gave a clinically important reduction in pain (PID > 20 mm) was identified by 95% of patients. Reduced use of rescue medication (p < 0.001, SLF 400 microg) and improved global assessment of treatment (p = 0.0146, SLF 400 microg) confirmed these differences as clinically important. Nausea and dizziness were the most common treatment-related adverse effects. SLF appears to be a fast, effective and well-tolerated treatment for BTP.
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