Högskolan i Skövde

Background: When a child is diagnosed with childhood cancer this creates severe stress in the parents. The aim of the study was to describe the sense of coherence and its change over time in a sample of parents of children diagnosed with cancer.

Methods: The Swedish version of SOC (29 items) was used to measure the parents’ (n = 29) sense of coherence. Data were collected at four time-points: Time-point 1 at the time of diagnosis; time-point 2 during the treatment; time-point 3 after the child had completed their treatment and time-point 4 when the child had been off treatment for some years or had died.

Results: The results showed that SOC in the investigated population is not stable over time. The parents decreased in total SOC between time-points 1, 2 and 3. Mothers had significantlyweaker total SOC score including the components Manageability and Meaningfulness at time-points 1 as well time-point 2 compared to the fathers. However, for the component Comprehensibility no significant differences were shown between mothers and fathers. This study indicates that mothers’ and fathers’ SOC scores change over time during the child’s cancer trajectory. However, the pattern in these changes varies between mothers and fathers.

Conclusions: This study indicates that mothers and fathers may have different support needs during their child’s cancer trajectory.

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.

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.

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. 

The study took place in a 10-bed neonatal ward in a hospital in the south of Sweden and includes mothers having given birth to a preterm infant born before the 37th week of gestation. The aim of the study was to illuminate mothers' experiences of breastfeeding a preterm infant in a neonatal ward. Data collection includes written protocols from twelve mothers. These protocols were analysed thematically. The results indicated that the mothers should be offered a private place where they can breastfeed or express breastmilk, and that the breastmilk should not be placed in a shared area. The mothers described that they did not want to be separated from their preterm infant during the night. Finally, they also pointed out the importance of support from the health professionals for establishing an exclusive breastfeeding regime.

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.

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.

PURPOSE: Health care focus is shifting from solely looking at surviving cancer to elements of attention relating to living with it on a daily basis.The young child's experiences are crucial to providing evidence based care. The aim of this study was to explore the everyday life of young children as expressed by the child and parents at six months and one year post diagnosis.

METHODS: Interviews were conducted with children and their parents connected to a paediatric oncology unit in Southern Sweden. A qualitative content analysis of interview data from two time points, six months and one year post diagnosis, was carried out.

RESULTS: The process of living with cancer at six months and at one year post diagnosis revealed the child's striving for an ordinary, everyday life. Experiences over time of gaining control, making a normality of the illness and treatment and feeling lonely were described.

CONCLUSION: Nurses have a major role to play in the process of striving for a new normal in the world post-diagnosis, and provide essential roles by giving the young child information, making them participatory in their care and encouraging access to both parents and peers. Understanding this role and addressing these issues regularly can assist the young child in the transition to living with cancer. Longitudinal studies with young children are vital in capturing their experiences through the cancer trajectory and necessary to ensure quality care.

Background: Knowledge of living with childhood cancer, through the trajectory, is sparse. Aim: The aim of this study was to follow young children's health and functioning in everyday life through their cancer trajectory. Methods: Data were gathered longitudinally from a group of 13 young children and their parents connected to a pediatric oncology unit in Sweden. The International Classification of Functioning, Disability and Health for Children and Youth structure was used to identify difficulties in health and functioning in everyday life, in interview and questionnaire data. Descriptive statistical analysis was performed to show patterns of difficulty over a 3-year period from diagnosis. Results: Difficulties experienced by children declined and changed over time. An increase in difficulties with personal interactions with others and access to and support from health care professionals was seen 2 to 3 years after diagnosis and start of treatment. Similar patterns are seen within individual children's trajectories in relation to diagnosis but individual patterns were seen for each child. Conclusions and Clinical Implications: Health care professionals need to plan for ongoing contact with school services and information and support pathways, beyond the treatment period. A person-centered philosophy of care is required throughout the cancer trajectory.

BACKGROUND: Health care focus is shifting for children from surviving childhood cancer to living with it on a daily basis. There is a need to document health and function in the everyday lives of young children with cancer using the multidimensional framework and language of the International Classification of Functioning, Disability and Health - Children and Youth (ICF-CY).

AIMS: The aims of this study were (1) to document health and functioning in the everyday lives of young children with cancer using ICF-CY codes and (2) to identify a comprehensive code set that can aid clinical assessment.

METHOD: Interviews with children diagnosed with cancer and their parents, were transcribed, reviewed for content and coded to the ICF-CY using linking procedures.

RESULTS: A comprehensive code set (n = 70) for childhood cancer was identified. The majority of content identified to codes was related to activity and participation describing social relations with family, peers and professionals, preschool attendance and play, as well as issues related to support and independence.

CONCLUSIONS: The ICF-CY can be used to document the nature and range of characteristics and consequences of cancer experienced by children. The identified comprehensive code set could be helpful to health care professionals, parents and teachers in assessing and supporting young children's health and everyday life through the cancer trajectory. The comprehensive code set could be developed as a clinical assessment tool for those caring for young children with cancer. The universal language of the ICF-CY means that the utility of a clinical assessment tool based on identified codes can have wide reaching effects for the care of young children with cancer.

Purpose: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives. Method: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden. Results: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%). Conclusions: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice. (C) 2014 Elsevier Ltd. All rights reserved.

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BACKGROUND: Nurses' attitudes toward caring for dying persons need to be explored. The Frommelt Attitude Toward Care of the Dying (FATCOD) scale has not previously been used in Swedish language. OBJECTIVES: The objectives of this study were to compare FATCOD scores among Swedish nurses and nursing students with those from other languages, to explore the existence of 2 subscales, and to evaluate influences of experiences on attitudes toward care of dying patients. METHODS: A descriptive, cross-sectional, and predictive design was used. The FATCOD scores of Swedish nurses from hospice, oncology, surgery clinics, and palliative home care and nursing students were compared with published scores from the United States, Israel, and Japan. Descriptive statistics, t tests, and factor and regression analyses were used. RESULTS: The sample consisted of 213 persons: 71 registered nurses, 42 enrolled nurses, and 100 nursing students. Swedish FATCOD mean scores did not differ from published means from the United States and Israel, but were significantly more positive than Japanese means. In line with Japanese studies, factor analyses yielded a 2-factor solution. Total FATCOD and subscales had low Cronbach α's. Hospice and palliative team nurses were more positive than oncology and surgery nurses to care for dying patients. CONCLUSIONS: Although our results suggest that the Swedish FATCOD may comprise 2 distinct scales, the total scale may be the most adequate and applicable for use in Sweden. Professional experience was associated with nurses' attitudes toward caring for dying patients. IMPLICATION FOR PRACTICE: Care culture might influence nurses' attitudes toward caring for dying patients; the benefits of education need to be explored.

In Sweden, school nurses are part of the School Health Service with the main objective of health promotion to support students’ health and attainment of educational goals. The aim in this phenomenological study was to illuminate the experiences of school nurses in promoting the health and well-being of adolescent girls. Seventeen school nurses were interviewed, both in groups and individually, to facilitate personal disclosure and expressions from their lived experiences. To achieve their goal of improving the health of adolescent girls, school nurses require flexibility in their approach and in endeavoring to make a positive difference they experience many challenges. This study concluded that school nurses can tactfully provide adolescent girls with knowledge and health guidance adjusted to individual needs and empowering the individual girl to participate in her own health process.

Background

In research the relationships between parents and their adolescent daughters have been viewed from problem oriented perspectives, usually exploring negative effects and health-related problems. Health and well-being are complex phenomena and knowledge is needed on how parents can support the health and well-being of their daughter.

Objectives

The aim of this study was to illuminate parents’ experiences of supporting the health and well-being of their adolescent girls.

Methods

A descriptive design with a phenomenological approach including interviews, individually or in group with ten mothers and five fathers was conducted.

Results

Supporting the health and well-being of adolescent girls was experienced as challenging. The parents needed to altering the parenting role: from being the one who had previously set the limits they needed to rethink and be available for support. In this process interplay, communication and trust were important to support the health and well-being of the girls in an efficient way. This meaning was further illuminated by four constituents: Balancing the need for control, maintaining a trusting relationship, interplay to facilitate their daughters’ transition to independence, and an ambiguous parenting role.

Conclusions

This study highlights the importance of parents being involved in the everyday life of their adolescent daughter to support her health and well-being. The parents’ ability to contribute to the health and well-being of their girl seemed in this study dependent on their ability to communicate and alter the parenting role with sensitivity to the lifeworld of the adolescent girl.

Motivation & Aim

In today's complex healthcare organizations there is an increasing recognition of the need to enhance care quality and patient safety. Simultaneously, patient boards receive an increasing number of complaints from patients and significant others regarding healthcare providers’ non-caring behaviors. Defining and measuring both verbal and nonverbal caring and non-caring behavior in healthcare providers’ care delivery is vital to address such complaints. However, no studies were found that incorporated a comprehensive theory of caring to code encounters between healthcare providers and patients. Therefore, the aim was to develop and test a caring behavior coding scheme based on Swanson’s Theory of Caring.

Method

An instrument development process was used for behavioral coding including observational data from thirty-eight video recordings collected in an undergraduate nursing course at a Swedish University. The observational data depicts a six minutes simulated interaction between an undergraduate nursing student and a standardized patient focusing caring in nursing practice. 

Result

The Caring Behavior Coding Scheme (the CBCS) entails eight nonverbal and seventeen verbal behavioral codes, categorized as caring and non-caring behaviors in accordance with Swanson’s Theory of Caring. Content validity was examined by Dr. Swanson, face validity was conducted by two clinical-nurses. A timed-event sequential continuous coding was performed in INTERACT®, the coder achieved excellent agreement with the developed gold standard (k = 0.87), and excellent mean inter-rater reliability (k = 0.82). The CBCS adequately captured caring behaviors as all domains in Swanson’s Theory of Caring were rated in the interaction.

Rationale

To maintain patients’ dignity and well-being and alleviate suffering, it is essential that healthcare providers engage in caring behaviours. Yet, every year patient boards receive an increasing number of complaints from patients and significant others regarding healthcare providers’ non-caring behaviours. Defining and measuring both verbal and nonverbal caring and non-caring behaviour in healthcare delivery is vital to address such complaints. However, no studies were found that incorporated a comprehensive theory of caring to code encounters between healthcare providers and patients.

Aim

The aim was to develop and test a Caring Behavior Coding Scheme based on Swanson’s Theory of Caring.

Method

An instrument development process was used for behavioural coding including observational data from thirty-eight video recordings collected in an undergraduate nursing course at a Swedish University. The observational data involved interactions between undergraduate nursing students and a standardised patient.

Result

The Caring Behavior Coding Scheme (the CBCS), contains seventeen verbal and eight nonverbal behavioural codes, categorised as caring and non-caring in accordance with Swanson’s Theory of Caring. Content and face validity were assessed. Timed-event sequential continuous coding was performed in INTERACT software. The coder achieved excellent agreement with the developed gold standard (k = 0.87) and excellent mean inter-rater reliability (k = 0.82). All domains in Swanson’s Theory of Caring were observed and coded in the interaction.

Discussion/Conclusion

The CBCS is a theory-based instrument that contributes to research on healthcare providers’ behavioural encounters. It uses verbal and nonverbal caring and non-caring behavioural codes to assess the alignment of both the theory and practice of caring. The CBCS can contribute to both development and measurement of interventions focused on improving healthcare providers’ caring behaviour with the intended outcome of patient well-being.

This study examines undergraduate nursing students’ experiences of participating in a Caring Behavior Course using various learning didactics. Twenty-five students participated in one of five focus group interviews with data analyzed according to qualitative content analysis. The main theme to emerge, an insightful and sudden awakening that caring is not only theoretical words, was further explained with three themes and nine subthemes. The Caring Behavior Course demonstrates effective learning didactics to develop awareness of values that influence caring behaviors and can contribute to patient well-being, particularly relevant for the care challenges in the time of COVID-19 and beyond.

Motivation & Aim

Although school of nursing curricula often refer to caring as the central core in nursing practice, students often have a gap in understanding and knowing how to intertwine caring in all aspect of nursing practice. Thus, nursing curricula often tend to focus more on developing psychomotor skills and knowledge, referred to as doing, with less concentration on how one interacts with patients. Even though there has been extensive research on simulation in nursing education there are limited studies focusing on the intentional and visible incorporation of compassionate and competent caring behavior in simulations. Therefore, the aim was to describe undergraduate nursing students’ experiences of practicing caring behaviors with a standardized patient. 

Method

A sample of forty-eight fourth semester undergraduate nursing students enrolled in a five-week caring behavior course at a Swedish university, were at the first and last week individually video-recorded during two caring behavior simulations with a standardized patient. After observing each of their video-recordings, students completed individual written reflection on their own verbal and nonverbal caring behavior. The written reflections were analyzed using qualitative content analysis. 

Conclusion

Simulated encounters with standardized patients that visibly intertwine caring with nursing practice facilitates nursing students’ learning of compassionate and competent caring behaviors

The learning experience made the students aware of the impact of practicing caring in nursing practice, recognizing that being with is not the same as doing for the patient, and thus, how challenging it is to be mindfully present in patient encounters

Video-recorded caring behavior simulations provide a feasible educational learning didactic, facilitating students’ learning to apply caring behaviors

Background: In today's complex healthcare organisations there is an increasing recognition of the need to enhance care quality and patient safety. Nurses' competence in demonstrating caring behaviour during patient encounters affects how patients experience and participate in their care. Nurse educators are faced with the challenge of balancing the demand for increasingly complex knowledge and skills with facilitating students' abilities essential to becoming compassionate and caring nurses. Aim: The aim was to describe undergraduate nursing students' development of caring behaviour while participating in a caring behaviour course. Method: This pilot study used a quantitative observational design. At a university in Sweden, video-recorded observational data from twenty-five students were collected in the first and last weeks of a full-time five-week Caring Behaviour Course (the CBC). In total, 56-min video-recorded simulation interactions between a student and a standardised patient were coded by a credentialed coder using a timed-event sequential continuous coding method based on the Caring Behaviour Coding Scheme (the CBCS). The CBCS maps the five conceptual domains described in Swanson's Theory of Caring with related sub-domains that align with Swanson's qualities of the Compassionate Healer and the Competent Practitioner. The CBCS contains seventeen verbal and eight non-verbal behavioural codes, categorised as caring or non-caring. Results: Between the two simulations, most verbal caring behaviours increased, and most non-verbal caring behaviours decreased. Statistically significant differences between the simulations occurred in the sub-domains Avoiding assumptions and Performing competently/skilfully in the quality of the Competent Practitioner. Most observed caring behaviours aligned with the Compassionate Healer. Conclusion: Generally, the students' development of caring behaviours increased while participating in the CBC. Using a structured observational behavioural coding scheme can assist educators in assessing caring behaviour both in education and in practice, supporting caring as the universal foundation of nursing and a key to patient safety.

The aim of this study was to describe discursively constructed interactions between parents and health care professionals (HCPs) in a pediatric oncology ward. Field notes from 70 focused participant observations and 16 informal interviews with 25 HCPs interacting with 25 parents of children with cancer were analyzed using discursive psychology. Six dominant interpretative repertoires (flexible parts of discourses used in everyday interaction) were found. Repertoires used by the HCPs were child, parent, or family oriented, mirroring the primary focus of the interaction. Parents used a spokesperson repertoire to use their own expertise to talk on behalf of the child; an observer repertoire, in which they kept in the background and interfered only when needed; or a family member repertoire to position themselves on a level equal to the ill child. The results are discussed in relation to philosophies influencing pediatric nursing, such as family-centered nursing and child-centered nursing.

Aim: The aim was to investigate student nurses' experiences of the clinical learning environment in relation to how the supervision was organized. Background: The clinical environment plays an essential part in student nurses' learning. Even though different models for supervision have been previously set forth, it has been stressed that there is a need both of further empirical studies on the role of preceptorship in undergraduate nursing education and of studies comparing different models. Method: A cross-sectional study with comparative design was carried out with a mixed method approach. Data were collected from student nurses in the final term of the nursing programme at three universities in Sweden by means of a questionnaire. Results: In general the students had positive experiences of the clinical learning environment with respect to pedagogical atmosphere, leadership style of the ward manager, premises of nursing, supervisory relationship, and role of the nurse preceptor and nurse teacher. However, there were significant differences in their ratings of the supervisory relationship (p < 0.001) and the pedagogical atmosphere (p 0.025) depending on how the supervision was organized. Students who had the same preceptor all the time were more satisfied with the supervisory relationship than were those who had different preceptors each day. Students' comments on the supervision confirmed the significance of the preceptor and the supervisory relationship. Conclusion: The organization of the supervision was of significance with regard to the pedagogical atmosphere and the students' relation to preceptors. Students with the same preceptor throughout were more positive concerning the supervisory relationship and the pedagogical atmosphere.

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.