| 1. |
- Lindahl, Berit, et al.
(författare)
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On being dependent on home mechanical ventilation : depictions of patients' experiences over time.
- 2006
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Ingår i: Qualitative Health Research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 16:7, s. 881-901
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Tidskriftsartikel (refereegranskat)abstract
- In this study, the authors describe the meanings of experiences of being dependent on a ventilator (HMV) and living at home as narrated by 13 people who had been using a ventilator via a mask or tracheostomy for half a year. The analyses revealed various movements across time toward the goal of using the ventilator successfully, and some narratives depicted suffering caused by care. The analyses also yielded different representations of embodiment. These findings were abstracted into two contrasting meanings of the experience of using HMV over time: a closing in or an opening up of the lived body, oneself, to other people and to the world. The authors illustrate this interpretation with two images. Ignorance and negative attitudes on the part of professionals working and/or managing care in the patients' homes are interpreted as causing suffering and intensifying a closed-in mode of being.
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| 2. |
- Dalheim Englund, Ann-Charlotte, et al.
(författare)
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Having a child with asthma : quality of life for Swedish parents
- 2004
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 13:3, s. 386-395
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Asthma is the most common chronic childhood disease. Childhood asthma contributes significantly to morbidity among children and has a significant impact on the quality of life (QoL) and daily routines of both the children and their parents. AIM AND OBJECTIVE: The purpose of this study was to investigate how Swedish parents of children with asthma experience their QoL, and to investigate whether there were differences concerning QoL between parents within the same family. The purpose was also to investigate possible connections between their QoL and background variables. METHOD: A total of 371 parents of children with asthma (57% mothers and 43% fathers) participated in the study. The Paediatric Asthma Caregiver's Quality Of Life Questionnaire (PACQLQ) was used to measure the parents' QoL, i.e. how the child's asthma interferes with the parents' normal activities and how it has made them feel. RESULTS: The findings show that most parents of children with asthma evaluated their QoL as close to the positive end of the scale, and there was close agreement in the scoring between parents within the same family. Significant associations were found between parents' lower QoL outcome and living in the North of Sweden. There were also significant associations between fathers' lower QoL outcome and having a child younger than 13 years of age and mothers' lower QoL outcome and having a child with severe asthma. Although the result shows that a child's asthma did not influence the parents' QoL to a greater degree, it is still important for healthcare workers to help these parents to sustain and improve their well-being. CONCLUSIONS: The fact that they just evaluated their QoL during the preceding week only, and did so at the time when their children were being treated with asthma medication, might have influenced the results in a positive direction.
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| 3. |
- Dalheim-Englund, Ann-Charlotte
(författare)
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Skydda och frigöra : en studie av föräldrar till barn med astma och av professionella vårdare
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Aim: The overall aim of this thesis is, from the point of view of parents of a child with asthma, to describe meanings of being a parent, parents’ quality of life, and to describe how family relations are influenced by their child’s disease. The aim is also to increase the understanding of what strategies professional caregivers use in their work with teenagers suffering from asthma. Methods: Informants in the three qualitative studies were 29 parents (17 mothers and 12 fathers) of children with asthma and 7 professional caregivers. Informants in a quantitative quality of life study were 371 parents. The data collections were undertaken by means of interviews, observations and a questionnaire. The data was analysed by means of a phenomenological-hermeneutic method, grounded theory and statistics. Results: A meaning of being a parent of a child with asthma is to live a strenuous life and to fear that the child might die during a severe asthma attack. The parents’ actions involve both protecting and liberating and their feelings involve sadness as well as acceptance. Mostly the mothers act in a protecting manner and express feelings of sadness. The fathers mostly act in a liberating manner and express feelings of acceptance. The core concern in families of a child with asthma was found to be disease-engendered uncertainty. The mothers describe that feelings of uncertainty always are present owing to the unpredictability of the disease. These feelings make the mothers more or less available for family members. For the child with asthma the mothers’ experience that they are always available. Thus, control and tight bonds characterize the mother-child relationships. The mothers’ constant availability for the child with asthma is experienced to lead to a decreased availability for other family members and theses relationships are characterised by feelings of forsakenness and lack of understanding. However, when parents of children with asthma estimate their quality of life by a questionnaire, they estimate it as comparatively high. In the same family the parents scoring of separate items was to a large extent similar. The result also shows that professional caregivers’ central concern is to assist teenagers with asthma to conquer life. This gives rise to five strategies: showing respect, being at hand, promoting personal sense of responsibility, promoting exceeding boundaries, and promoting reflections. In professional caregivers’ attempt to assist teenagers to conquer life some differences are seen in the way they support boys and girls. Conclusion: One conclusion drawn from this thesis is that being a parent of a child with asthma involves feelings of uncertainty. In meeting the parents in question, caregivers should reflect upon these feelings and consider how the parents could be assisted. As mothers and fathers describe different attitudes in relation to the care of the child, it is also important to reflect upon how professional caregivers can assist the balance between the mothers’ protecting and the fathers’ liberating attitudes. It is also important for professional caregivers to reflect upon how they meet teenage girls and boys with asthma respectively, and to take their needs and understanding of the situation into consideration.
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| 4. |
- Efraimsson, Eva, 1955-
(författare)
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Vårdplaneringsmötet. : En studie av det institutionella samtalet mellan äldre kvinnor, närstående och vårdare
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to describe how elderly women’s encounters with an institutionalised world of health care manifest itself in a discharge planning conference (DPC). The thesis is based on eight video recorded DPCs and follow-up interviews with the women who took part in the conferences. The result of study I, a case study, showed that the woman’s experience of taking part in the DPC was characterised as a feeling of powerlessness. The women’s possibility to have influence on the care planning was small (Study II). Study III revealed that the participants adopted or were assigned to different roles during the DPC. As these roles collided dilemmatic situations occurred. Simultaneously the women and family members struggled to manage the institutional frame that surrounded the meeting by trying to find room within it or by challenging it. Study IV revealed that the women found themselves to be in a vulnerable situation. Their body had failed them, their future was insecure and they felt unprepared as they took part in the DPC. They felt as if they were being affiliated with the other participants in a joint project, as if they were standing outside the event or as if they were in focus for the conversation which. The last was a double edged experience: getting confirmative attention but also being exposed as dependent. Four themes characterise the care that was jointly constructed by all participants during the DPC. These themes are “Care as spirit of community and confirmation”, ”Care as alienation”, ”The incomprehensible care” and “The inflexible and betraitful care”.The result gives rise to questions about the relevance of DPCs in their present shape. Further research and developmental projects requested to achieve dicharge planning conferences that are corresponding better to official caring ideals and the patients needs.
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| 5. |
- Lindahl, Berit
(författare)
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Möten mellan människor och teknologi : berättelser från intensivvårdssjuksköterskor och personer som ventilatorbehandlas i hemmet
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The overall aim of this thesis is to illuminate meanings of the relation between human beings, technology and care, as narrated by critical care nurses and people in need of home mechanical ventilation (HMV). The data are based on narrative research interviews with six intensive care nurses (I), 13 people who were about to start HMV (II), these 13 people were interviewed for a second time six to eight months after HMV had started (III), and nine persons with more than two years HMV experience (IV). The text was analysed using a phenomenological-hermeneutic research method as described by Lindseth and Norberg. The method is developed from the writings of the French philosopher Paul Ricoeur. The findings illuminate meanings of nursing care in an intensive care unit (I) as undertaking the role of advocacy as a caring response to another human being. The basic condition for this caring response depends on the nurses' openness and sensitivity to the needs of patients or patients' next of kin. The nurses were aware of the influence of technology and tried to modify its negative effects. Meanings of becoming dependent on HMV (II) are interpreted and metaphorically expressed as "to get one's breath" and "to hold one's breath" respectively. On the one hand, breathing ensures the cellular oxidation process within the body, but on the other hand there can be "shortness of breath" in "spiritual breathing", and starting HMV will influence patients' whole life situation, body and spirit. After using a ventilator six to eight months, meanings of a life dependent on a ventilator was interpretd as either a closure or an opening of the lived body to oneself, other people and the world. This interpretation is illustrated by two images. A life on a ventilator at home is not to be seen as static being. On the contrary, it is a being which moves and changes over time. Being dependent on a ventilator and living at home, as narrated by adults with more than two years of HMV experience (IV), was interpreted as being able to rise above yourself and your personal boundaries in order to live a good life. These meanings are bound up with experiencing a vital force and interdependency, and despite fragility being able to reach others and the outside world. Design and function of technology had an impact on the lived body. The comprehensive understanding of the four articles (I-IV) unfolded meanings of the relation between human beings, technology and care, as an interchange and a creation of physical and spiritual energy among humans and between human and technology. It could be an experience of the lived body being filled with as well as emptied of energy. This interpretation points at a call for the caring personnel to be attentive and to listen to the voices of the lived body in health and illness, and to bear witness to those who suffer. Technology acts between the person and the world and in order to be embodied, technology must be "transparent", i.e. beautiful and fit to its use.
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| 6. |
- Lindahl, Berit, et al.
(författare)
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On becoming dependent on home mechanical ventilation.
- 2005
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Ingår i: Journal of Advanced Nursing. - : Wiley. - 0309-2402 .- 1365-2648. ; 49:1, s. 33-42
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Tidskriftsartikel (refereegranskat)abstract
- AIM: The aim of this paper is to illuminate meanings of becoming dependent on home mechanical ventilator treatment. BACKGROUND: People suffering from chronic alveolar hypoventilation and requiring home mechanical ventilation represent a small but increasing group in society, and are some of the most vulnerable individuals with chronic disabilities. METHOD: Thirteen people about to begin ventilator treatment at home were interviewed. Data were tape-recorded and analysed according to a phenomenological-hermeneutic method. FINDINGS: Findings revealed two contrasting meanings of being in the process of becoming dependent on a ventilator, interpreted as getting breath or holding breath. This interpretation is presented in two composite stories. CONCLUSIONS: The findings imply possibilities and deficiencies in meeting patients' existential needs, such as helping them to breathe spiritually by supporting them as they get their breath after such a life-changing event as becoming dependent on a ventilator.
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| 7. |
- Lindblad, Britt-Marie, et al.
(författare)
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A life enriching togetherness : meanings of informal support when being a parent of a child with disability
- 2007
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Ingår i: Scandinavian Journal of Caring Sciences. - : Wiley-Blackwell Publishing Ltd.. - 0283-9318 .- 1471-6712. ; 21:2, s. 238-246
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Tidskriftsartikel (refereegranskat)abstract
- The majority of children affected by disability are cared for at home by their parents. It is well documented in research literature that the parents are in need of professional support. In the striving to improve the professional caring, it is also important to deepen our understanding about the meaning of informal support from the perspective of parents' life world. The aim of this study was to illuminate the meanings of lived experience of informal support, when being a parent of a child affected by disability. Thirteen parents, eight mothers and five fathers within eight families, participated in narrative interviews, which were analysed by using a phenomenological-hermeneutic method. The meanings resulted in three themes: 'being gratified by experiences of the child as having a natural place in relation with others', 'being provided a room for sorrow and joy' and 'being enabled to live an eased and spontaneous daily life'. These themes emanated from the experiences of other persons' being and doing in relation to the parents, the child affected by disability and the siblings. According to our interpretation, informal support means a life enriching togetherness, the core of which is natural human caring. The findings also showed that parents highly valued professional support concerning informal supporters
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| 8. |
- Lindblad, Britt-Marie
(författare)
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Att vara förälder till barn med funktionsnedsättning : erfarenheter av stöd och av att vara professionell stödjare.
- 2005
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd, utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella stödjare. Datainsamling har skett i form av berättande intervjuer med 39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män) från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk hermeneutisk metod. Innebörder av att vara förälder till barn med funktionsnedsättning (studie I) har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende värde som en unik person och föräldrarna strävar efter att göra sitt bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det handlar om en strävan att möjliggöra för barnet att leva ett gott liv. Innebörder av att få stöd av professionella (studie II) har tolkats som att föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella, för att kräva det stöd som föräldrarna anser att de och barnet behöver. Innebörder av att vara professionell stödjare (studie III), består av att ha personlig filosofi, som är integrerat i sättet att vara och handla som stödjare. Det innebär att vara trygg i hoppet om att det alltid går att göra något för att hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till föräldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta har tolkats som en frihet från att vara bunden av byråkrati och prestige och en möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och föräldrar. Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv. Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande relationer med andra.
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| 9. |
- Rydström, Ingela, et al.
(författare)
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Asthma--quality of life for Swedish children.
- 2005
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Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 14:6, s. 739-749
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Tidskriftsartikel (refereegranskat)abstract
- AIMS AND OBJECTIVES: The purpose of this study was to describe how Swedish children with asthma experience their QoL and to search for possible associations between their experience of QoL and some determinants. BACKGROUND: Asthma is a chronic disorder that can restrict a child's life, physically, emotionally, socially and spiritually, and this has an impact on a child's quality of life (QoL). METHODS: Two hundred and twenty-six children with asthma (37% girls and 63% boys) and 371 parents of these children participated in the study. The Paediatric Asthma Quality Of Life Questionnaire (PAQLQ) was used to measure the children's QoL. This questionnaire reveals how the children's asthma interferes with their normal activities, their symptoms and how this interference has made them feel. RESULTS: The findings show that most children with asthma estimated their QoL towards the positive end of the scale. The children reported more impairment in the domain of activities than in emotions and symptoms. The most commonly restricted activity was the children's ability to run. Significant associations were found between a higher QoL outcome and being a boy, as well as living in the south of Sweden. A higher QoL was also found in children with mothers older than 40 years of age and in children with cohabiting parents. It was also associated with their fathers' QoL in a positive direction. CONCLUSIONS: It is important that children with asthma will maintain a high QoL. In this study the children were being treated with asthma medication when they evaluated their QoL. Perhaps this fact might have influenced the results in a positive direction. RELEVANCE TO CLINICAL PRACTICE: The findings of our study underline the importance of accurate nursing assessment including background variables of the children. Nurses also have to be aware that some of the children in the study have a low QoL and these children must not be forgotten. In addition, as caring tends to focus on the patients' limitations, another important issue for nurses is to try to discover those aspects in a child's daily life that contribute to a high QoL in order to improve and maintain the child's wellbeing.
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| 10. |
- Rydström, Ingela, et al.
(författare)
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Being a child with asthma
- 1999
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Ingår i: Pediatric Nursing. - : Jannetti Publications, Inc.. - 0097-9805. ; 25:6, s. 589-596
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Tidskriftsartikel (refereegranskat)abstract
- This study aimed to illuminate what it is like being a child with asthma. Unstructured interviews were conducted with 14 children with asthma in Sweden. The data were analyzed using a phenomenologic hermeneutic method. The results showed that the children strived to live normal lives. Sometimes they felt that they were participants in everyday life; other times they felt like outsiders. As participants, they felt confident in their own knowledge, in other people's wish to help, and that medicine would help. As outsiders, they felt deprived, guilty, lonely, anxious, and fearful. Results were interpreted from an ecosophic as well as an existential perspective.
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