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- Ehn, Mattias, 1972-
(author)
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Life Strategies, Work and Health in People with Usher Syndrome
- 2020
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Doctoral thesis (other academic/artistic)abstract
- Introduction: People with Usher syndrome (USH) have an inherited disorder causing congenital deafness or hearing loss combined with progressive vision loss and, in some cases, balance problems. Previous research has shown that people with USH have poor physical and psychological health. Research has, however, demonstrated that there are in-group health differences that have not yet been explored and that there is a lack of studies on life strategies as well as health in relation to working life.Aim: The aim was to explore the relationship between work and health in people with USH1 and 2 and to explore the experiences of life strategies in people with USH 2.Methods: A quantitative and a qualitative explorative design was employed comprising two cross-sectional studies of the relationship between work and health in people with USH2 (n=67) and USH1 (n=47). The third study, of life strategies, comprised focus group interviews with people with USH2a (n=14) analyzed by content analysis. The fourth study explored the lived experiences of working life by interviewing people with USH2 (n=7) using an interpretative phenomenological approach.Results: Study 1 and 2 demonstrated significant differences in health between working and nonworking people. Nonworking people showed significantly poorer health. In study 3, a variety of strategies to prevent and resolve challenges in life, as well as to comfort oneself was identified. The lived experiences of working life in people with USH2 (study 4) disclosed feelings of satisfaction, striving towards a work life balance. Work also disclosed feelings of limitations and uncertainty about the future.Conclusion: The results, which are discussed in relation to the Meikirsh model of health, demonstrated a complexity. Individual life strategies, psychological flexibility and environmental aspects, such as social determinants have to be considered to receive a comprehensive picture of the relationship between work and health in people with USH. This thesis provides new insights into the health of people with USH.
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| 2. |
- Sundqvist, Ann-Sofie, 1971-
(author)
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Perioperative patient advocacy : having the patient's best interests at heart
- 2017
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Doctoral thesis (other academic/artistic)abstract
- Patient advocacy implies taking action on someone else’s behalf, and has been described as a key element of nurses’ professional care. In the perioperative setting, it involves not only critical decision making, but also all the small things that the nurses do for the sake of the patients during their working day. Since previous research on the advocacy role of a registered nurse anesthetist (RNA) is sparse, and has not been conducted in a Swedish context, this thesis was intended to contribute to a greater understanding of advocacy in the perioperative context. The overall aim was therefore to explore the characteristics and consequences of perioperative patient advocacy (Study I), and to describe RNAs’ views of advocacy in anesthetic nursing through interviews (Study II), a questionnaire (Study III), and observations (Study IV).The synthesis of the characteristics and consequences of perioperative patient advocacy was interpreted in this thesis as the RNAs having the patient’s best interests at heart, in that they (1) had control of the situation, (2) preserved human values, and finally (3) were emotionally affected, as the results from the four studies suggested this as the core of perioperative patient advocacy.Perioperative patient advocacy is not always perceived as easy. In praxis, it is linked to the code of ethics outlined by the International Council of Nurses, which states that all registered nurses, regardless of their working context, shall respect human rights, promote health, prevent illness, and ensure that the individual receives accurate and sufficient information. This thesis elaborates on how this is done by describing how RNAs exert perioperative patient advocacy and how they interact in order to facilitate the best possible care for the patient. The results deepen the understanding of perioperative patient advocacy from the RNA’s perspective and contribute to a new insight in the RNA’s professional role.
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| 3. |
- Anderzén-Carlsson, Agneta, 1966-
(author)
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Children with cancer : focusing on their fear and on how their fear is handled
- 2007
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Doctoral thesis (other academic/artistic)abstract
- Various fears in children with cancer have previously been identified as a result of studying e.g. symptom experiences, distress and uncertainty within this population. Studies of the meaning the children give to their fear, as well as the handling of their fear seem to be sparse, however. Also, fear has not been an exclusive focus in previous studies. Professionals in clinical practice have pointed to the need for such research, which has prompted the present research work. The overall aim of this thesis was therefore twofold; firstly, the aim was to elucidate fear in children and adolescents with cancer in order to gain an understanding from the perspective of adolescents and parents. Secondly, it was to elucidate parents’ and professionals’ handling of the fear. This in order to gain a deeper understanding of what performances and manners the children and adolescents can face when being fearful. A qualitative descriptive design was adopted in the five included studies. The methods used in the data analysis were phenomenological hermeneutical method (studies I–III) and qualitative content analysis (studies IV–V). In study I six adolescent girls, aged 14–16 years, with experiences of various cancer diagnoses, but now declared fit, were interviewed. The results reveal that they experience their fear as embodied, which in the comprehensive understanding of the results was interpreted as a threat to their personal self, their whole existence. Their fear was seen as a holistic intertwined experience, including fear related to the physical body and to the social self. Also, existential fear was described. Their described experience was interpreted as suffering. Studies II and III share the same data. Fifteen parents of children at various ages with various cancer diagnoses were interviewed in focus groups about their experience of their child’s fear. In study II the result reveals how the parents experienced and understood their child’s fear. The fear was described as a multidimensional phenomenon, which was not always easy to identify. It was contrasted to feelings of unease and to absence of fear. In the comprehensive understanding the fear was interpreted as a suffering, as that was regarded to be what was the common meaning in the narratives. The suffering was interpreted as an ethical demand to the parents to take action. In study III the parents described their actions, i.e. they described how they dealt with the fear. Their actions were described as acting in the best interests of the child, which included striving to make the child feel secure and experience wellbeing, up to a certain point. However, after this point the parents used their parental authority to maintain the child’s physical health rather than trying to prevent or relieve the child’s fear. In the comprehensive understanding the parents’ handling of their child’s fear was interpreted as revealing mercy and as being synonymous with meeting the ethical demand put on them. In study IV ten experienced nurses and physicians were individually interviewed about how they handled fear in children with cancer. The result reveals that the existential issues were dealt with within the relationship with the child, on a sliding scale between closeness and distance, and that the fear related to medical procedures occurred on a continuum between support and lack of support. The various actions involved, and the manner in which these actions were performed, was described. In the observational study (study V) eleven parents and their children as well as eleven health professionals participated. They were observed at children’s routine visits at the outpatient clinic. The aim was to study the interactions related to fear. The result reveals that when children were fearful they expressed this both verbally and non-verbally. The parents’ and professionals’ actions and interactions in these situations were found to be characterized by recognition of the fear or lack of attention to the fear. The findings can contribute to a broadened knowledge on fear in children and adolescents with cancer. Awareness and understanding of the meaning adolescents give to their fear, and furthermore, of the parents’ experience and understanding of their child’s fear can provide tools for interacting with these groups. The findings on how fear is dealt with by the ones children have claimed as important sources for support, can give insights into what the child may face when being fearful. These insights can form the basis for individual, as well as collegial, reflections on what is done when children face fear, how fear is handled on an everyday basis and why it is handled in this way. Such reflections could lead to an ethical awareness of handling fear in children with cancer.
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| 4. |
- Olsson, Emma, 1980-, et al.
(author)
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Cultural adaptation and harmonization of four Nordic translations of the revised Premature Infant Pain Profile (PIPP-R)
- 2018
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In: BMC Pediatrics. - : BioMed Central. - 1471-2431. ; 18
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Journal article (peer-reviewed)abstract
- Background: Preterm infants are especially vulnerable to pain. The intensive treatment often necessary for their survival unfortunately includes many painful interventions and procedures. Untreated pain can lead to both short- and long-term negative effects. The challenge of accurately detecting pain has been cited as a major reason for lack of pain management in these non-verbal patients. The Premature Infant Pain Profile (PIPP) is one of the most extensively validated measures for assessing procedural pain in premature infants. A revised version, PIPP-R, was recently published and is reported to be more user-friendly and precise than the original version. The aims of the study were to develop translated versions of the PIPP-R in Finnish, Icelandic, Norwegian, and Swedish languages, and to establish their content validity through a cultural adaptation process using cognitive interviews.Methods: PIPP-R was translated using the recommendations from the International Society for Pharmacoeconomics and Outcomes Research and enhanced with cognitive interviews. The respondent nurse was given a copy of the translated, national version of the measure and used this together with a text describing the infant in the film to assess the pain of an infant in a short film. During the assessment the nurse was asked to verbalize her thought process (thinking aloud) and upon completion the interviewer administered probing questions (verbal probing) from a structured interview guide. The interviews were recorded, transcribed, and analyzed using a structured matrix approach.Results: The systematic approach resulted in translated and culturally adapted versions of PIPP-R in the Finnish, Icelandic, Norwegian and Swedish languages. During the cultural adaptation process several problems were discovered regarding how the respondent understood and utilized the measure. The problems were either measure problems or other problems. Measure problems were solved by a change in the translated versions of the measure, while for other problems different solutions such as education or training were suggested.Conclusions: This study have resulted in translations of the PIPP-R that have content validity, high degree of clinical utility and displayed beginning equivalence with each other and the original version of the measure.
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| 5. |
- Olsson, Emma, 1980-
(author)
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Promoting health in premature infants : with special focus on skin-to-skin contact and development of valid pain assesment
- 2017
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Doctoral thesis (other academic/artistic)abstract
- Premature infants are at greater risk for both short- and long-term negative outcomes than infants born at full term. Premature infants have an immature nervous system and are not developmentally prepared to process the often excessive stimuli and frequent painful procedures of intensive care. Skin-to-skin contact between the infant and the parent is beneficial for both infant and parents and can also humanize the intense environment of the neonatal intensive care unit. The aim of the thesis, to promote health in premature infants had two parts: (1) to investigate aspects of skin-to-skin contact (SSC) within neonatal care, and (2) to contribute to the development of a valid method for pain assessment in premature infants. In Study I, questionnaires about the implementation of SSC and staff’s attitudes toward the method were sent to all neonatal units in the Nordic countries. SSC was offered in all 87% of the units that responded, but to different extents in different countries. Medical risks and the physical environment were considered barriers to SSC, and the infant’s general development was considered the primary benefit. In Study II, 20 fathers of premature infants were interviewed about their experiences with SSC. The fathers’ overall experiences were positive and SSC made them feel involvedin their infant’s care. They also described the environment as an obstacle, but the experience as both gratifying and challenging. In Study III, SSC with their mothers was shown to have a pain-relieving effect on premature infants undergoing a blood test. This effect was examined through nearinfrared spectroscopy (NIRS) over the somatosensory cortex. In Study IV the Premature Infant Pain Profile - Revised was translated and culturally adapted into Finnish, Icelandic, Norwegian and Swedish. In summary, SSC was used to various degrees in the Nordic countries, fathers seemed to appreciate the method, which made them feel more involved, and SSC provided pain relief during a blood test.
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