| 1. |
- Björk, Maria, et al.
(author)
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An Everyday Struggle - Swedish Families' Lived Experiences During a Child's Cancer Treatment
- 2009
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In: Journal of Pediatric Nursing. - : Elsevier. - 0882-5963 .- 1532-8449. ; 24:5, s. 423-432
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Journal article (peer-reviewed)abstract
- The aim was to elucidate families' lived experience during a child's cancer treatment. Interviews were conducted with members of 11 affected families. A hermeneutical phenomenological approach was chosen. "Focus on the ill child-An everyday struggle" emerged as an essential theme. The families' lived experience of daily life was described as "feeling drained," "disrupting family life," "feeling locked up and isolated," "retaining normality," "becoming experts," and "changing perspectives." The result indicates that life during a child's cancer treatment is a taxing period and that the entire family is in need of support to ease their burdens. © 2009 Elsevier Inc. All rights reserved.
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| 2. |
- Björk, Maria, et al.
(author)
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Like being covered in a wet and dark blanket : Parents' lived experiences of losing a child to cancer
- 2016
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In: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 25, s. 40-45
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Journal article (peer-reviewed)abstract
- Purpose: The aim of this study was to illuminate parents' lived experiences of losing a child to cancer. Method: Interviews and a narrative about parents' experiences of losing a child to cancer were gathered from six parents of children whom had participated in a longitudinal study across the child's illness trajectory. The analysis of the data was inspired by van Manen's hermeneutic phenomenological approach. Results: One essential theme emerged: Like being covered in a wet and dark blanket, as well as six related themes: Feeling conflicting emotions, Preparing for the moment of death, Continuing parenting after death, Recollecting and sharing memories, Working through the sorrow and New perspectives in life. Conclusion: There is a need for good palliative care. If not, there is a risk that the parent will perseverate and blame themselves for not being a good parent during the suffering child's last time in life. Meetings with the parents six months and two years after the child's death might facilitate healing through the grief process.
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| 3. |
- Björk, Maria, et al.
(author)
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Needs of young children with cancer during their initial hospitalization : An observational study
- 2006
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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 23:4, s. 210-219
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Journal article (peer-reviewed)abstract
- The aim of this study was to describe young (under the age of 7) children's needs as expressed by their behavior, body language and verbal expression through observations during their initial hospitalization after being diagnosed with cancer. Twelve children under the age of seven were followed during 26 hours with non-participant unstructured observations. Field notes were written after each observation and transcribed into a narrative text, which was analyzed by content analysis at both manifest and latent level. Five themes were identified, of which "need to have the parent close by" was the most prominent. The other themes were "need to play and feel joy," "need for participation in care and treatment," "need for a good relationship with the staff," and "need for physical and emotional satisfaction." The results indicate that the children needed their parents and the parents' presence helped the children to express other needs. Professionals need to support the child and his or her parents so that the parents in their turn can support and alleviate their child's hospitalization and cancer treatment. © 2006 by Association of Pediatric Oncology Nurses.
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| 4. |
- Björk, Maria, et al.
(author)
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Returning to a changed ordinary life - families' lived experience after completing a child's cancer treatment
- 2011
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In: European Journal of Cancer Care. - : John Wiley & Sons. - 0961-5423 .- 1365-2354. ; 20:2, s. 163-169
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Journal article (peer-reviewed)abstract
- The aim of the study was to illuminate the families' lived experience after completing a child's cancer treatment. The study took place at a University Hospital in southern Sweden. Interviews were carried out with 10 mothers, eight fathers, four patients and two siblings from a total of 10 families. The interviews were analysed with a hermeneutical phenomenological approach. One essential theme emerged from their stories, ‘returning to a changed ordinary life – incorporating a trying and contradictory experience’. The families felt relieved that the treatment was over yet they experienced strains in their daily life. Family members felt changed and especially the parents needed to focus on themselves in order to recover. Closeness with other people, especially their own family, was important. The previously sick children felt a loss of concern from their parents when treatment had ended, in contrast to siblings who experienced increased attention from their parents. Parents experienced being in uncharted territory and sometimes missed the security of hospital. For professionals it is important to offer the family a structured follow-up to help them in their daily life after the child's treatment is completed.
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| 5. |
- Björk, Maria, et al.
(author)
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Striving to survive : Families' lived experiences when a child is diagnosed with cancer
- 2005
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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 22:5, s. 265-275
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Journal article (peer-reviewed)abstract
- When a child is ill with cancer, this affects the whole family for long periods. The aim of this study was to elucidate the family's lived experience when a child in the family was diagnosed with cancer. A descriptive inductive design with a hermeneutic phenomenological approach including interviews with 17 families (parents, children, and siblings) was chosen. The families' lived experience was described as a 2-fold essential theme comprising "a broken life world" and an immediate "striving to survive." The families' secure everyday life disappeared and was replaced by fear, chaos, and loneliness. When striving to make the child and the family survive, family members strove to feel hope and have a positive focus, to gain control, and to feel close to other people. Phenomenological human science research can deepen the understanding of the meaning of being a family with a child who is ill with cancer and can help pediatric oncology staff become increasingly thoughtful, and thus better prepared to take action to diminish the chaos occurring in the family. © 2005 by Association of Pediatric Oncology Nurses.
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| 6. |
- Castor, C, et al.
(author)
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Psychometric evaluation of the electronic faces thermometer scale for pain assessment in children 8–17 years old : A study protocol
- 2023
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In: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2637-3807 .- 2379-5824. ; 5:4, s. 99-109
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Journal article (peer-reviewed)abstract
- It is often a challenge for a child to communicate their pain, and their possibilities to do so should be strengthened in healthcare settings. Digital self-assessment provides a potential solution for person-centered care in pain management and promotes child participation when a child is ill. A child's perception of pain assessment differs when it is assessed using digital or analog formats. As we move into the digital era, there is an urgent need to validate digital pain assessment tools, including the newly developed electronic Faces Thermometer Scale (eFTS). This study protocol describes three studies with the overall aim to evaluate psychometric properties of the eFTS for assessing pain in children 8?17?years of age. A multi-site project design combining quantitative and qualitative methods will be used for three observational studies. Study 1: 100 Swedish-speaking children will report the level of anticipated pain from vignettes describing painful situations in four levels of pain and a think-aloud method will be used for data collection. Data will be analyzed with phenomenography as well as descriptive and comparative statistics. Study 2: 600 children aged 8?17?years at pediatric and dental settings in Sweden, Denmark, Iceland, and USA will be included. Children will assess their pain intensity due to medical or dental procedures, surgery, or acute pain using three different pain Scales for each time point; the eFTS, the Faces Pain Scale Revised, and the Coloured Analogue Scale. Descriptive and comparative statistics will be used, with subanalysis taking cultural context into consideration. Study 3: A subgroup of 20 children out of these 600 children will be purposely included in an interview to describe experiences of grading their own pain using the eFTS. Qualitative data will be analyzed with content analysis. Our pilot studies showed high level of adherence to the study procedure and rendered only a small revision of background questionnaires. Preliminary analysis indicated that the instruments are adequate to be used by children and that the analysis plan is feasible. A digital pain assessment tool contributes to an increase in pain assessment in pediatric care. The Medical Research Council framework for complex interventions in healthcare supports a thorough development of a new scale. By evaluating psychometric properties in several settings by both qualitative and quantitative methods, the eFTS will become a well-validated tool to strengthen the child's voice within healthcare.
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| 7. |
- Hansson, Helena, et al.
(author)
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End-of-life palliative home care for children with cancer : A qualitative study on parents' experiences
- 2023
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In: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 37:4, s. 917-926
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Journal article (peer-reviewed)abstract
- BackgroundThere is insufficient knowledge available about the impact of paediatric palliative care at home on meeting family needs and ensuring the highest quality of care for the dying child. The aim of this study was to elucidate parents' experiences of how and why home-based paediatric palliative care impacted the entire family during their child's final phase of life.MethodsThe study used a qualitative design. Semi-structured interviews were conducted with the bereaved parents of children who had received palliative care at home from a paediatric cancer hospital department programme that was based on collaboration with community nurses and the paediatric palliative care service. The interviews were transcribed verbatim, and qualitative content analysis was applied. The Ecocultural theory was used to explain the findings.ResultsThree main themes emerged: (1) involvement enabling a sense of control and coping, (2) sustaining participation in everyday family life routines and (3) making room for presence and comfort during and after the end-of-life trajectory.ConclusionEnd-of-life palliative care at home can enable parents and other family members to maintain a sense of control, presence and semblance of everyday life. It contributes to managing and alleviating the burden and distress during the last phase of the child's life and during bereavement. We suggest that healthcare professionals support family members in participation and daily life routines and activities during a child's EOL care, as it affects the well-being of the entire family.
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| 8. |
- Höök, A., et al.
(author)
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Content validity of the electronic faces thermometer scale for pain in children : is a picture worth more than a thousand words?
- 2024
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In: Frontiers in Pain Research. - : Frontiers Media S.A.. - 2673-561X. ; 5
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Journal article (peer-reviewed)abstract
- Introduction: Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0–10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children. Methods: A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8–17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations. Results: A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0–1) and pain (level 2–10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2–10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments. Discussion: The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.
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| 9. |
- Höök+, Angelica, 1972, et al.
(author)
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Content validity of the electronic faces thermometer scale for pain in children: is a picture worth more than a thousand words?
- 2024
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In: Frontiers in pain research (Lausanne, Switzerland). - : Frontiers Media S.A.. - 2673-561X. ; 5
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Journal article (peer-reviewed)abstract
- Early recognition of pain in children is crucial, and their self-report is the primary source of information. However, communication about pain in healthcare settings can be challenging. For non-verbal communication regarding different symptoms, children prefer digital tools. The electronic Faces Thermometer Scale (eFTS) utilizes a universal design with colors, face emojis, and numbers on an 11-point scale (0-10) for pain assessment. The aim of this study was to establish content validity of the eFTS for pain assessments in children.A mixed methods design was used. The study took place at a university hospital in eastern Sweden, involving 102 children aged 8-17 years who visited outpatient clinics. Participants were presented with 17 pictures representing varying pain levels and asked to assess hypothetical pain using the eFTS. A think-aloud approach was employed, prompting children to verbalize their thoughts about assessments and the eFTS. Quantitative data were analyzed using descriptive and comparative statistics, together with a qualitative approach for analysis of think-aloud conversations.A total of 1,734 assessments of hypothetical pain using the eFTS were conducted. The eFTS differentiated between no pain (level 0-1) and pain (level 2-10). However, no clear agreement was found in the differentiation between hypothetical pain intensity levels (level 2-10). The analysis revealed that children utilized the entire scale, ranging from no pain to high pain, incorporating numbers, colors, and face emojis in their assessments.The variability in assessments was influenced by prior experiences, which had an impact on the statistical outcome in our study. However, employing the think-aloud method enhances our understanding of how children utilize the scale and perceive its design, including the incorporation of emotion-laden anchors. Children express a preference for using the eFTS to assess their pain during hospital visits.
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| 10. |
- Johansson Sundler, Annelie, et al.
(author)
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Living an Everyday Life Through a Child's Cancer Trajectory : Families' Lived Experiences 7 Years After Diagnosis
- 2013
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In: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 30:6, s. 293-300
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Journal article (peer-reviewed)abstract
- The aim of this study was to illuminate the lived experiences of families where a child had survived 7 years from a diagnosis of childhood cancer. This article describes one part of an inductive and longitudinal research project that included 17 families. Four families whose child was diagnosed with cancer 7 years previously were interviewed using a hermeneutical phenomenological approach. The families lived experience was described in one essential theme, "Living an everyday life through the child's cancer trajectory," further illuminated in 3 related themes: "Leaving the disease behind yet feeling its presence," "Being the same yet always different," and "Feeling stronger yet vulnerable." The results suggest that family members feel vulnerable even if a long period of time has passed since completion of treatment. To varied degrees they still may need support. When moving forward in life, the family members are helped if they can reconcile their memories and experiences derived from the childhood cancer trajectory.
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