Inger Hallström

Striving to survive: families' lived experiences when a child is diagnosed with cancer.

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.

Children’s Participation in the Decision-Making Process During Hospitalization: an observational study:

Twenty-four children (aged 5 months to 18 years) who were admitted to a university hospital were observed for a total of 135 hours with the aim of describing their degree of participation in decisions concerning their own care. Grading of their participation was made by using a 5-point scale. An assessment was also made of what was considered as optimal participation in each situation. The results indicate that children are not always allowed to participate in decision making to the extent that is considered optimal. In no case was it judged that a child participated in or was forced to make a decision that was too difficult for the child. The interactions between children, parents and staff were also described in connection with discussions and decision-making processes. This showed that parents do not always support their children in difficult situations and that health care staff often inform children about what is going to happen without presenting alternatives or asking for their views. Staff may, however, find themselves facing an ethical conflict in deciding between supporting a child’s view or following hospital routine. It is of great importance that children are looked upon as potentially autonomous individuals and that staff members realize that one of their core duties is to facilitate children’s participation in decision making concerning their health care.

Swedish families' lived experience when a child is first diagnosed as having insulin-dependent diabetes mellitus: An ongoing learning process.

Sweden has the second highest nationwide incidence of childhood diabetes in Europe, and it is rapidly increasing. The diagnosis of Type 1 insulin-dependent diabetes mellitus has been indicated as a crisis in the life of the individual and family. The purpose of this study was to elucidate the whole family’s lived experience when a child in the family is diagnosed as having diabetes. It was designed as a longitudinal, descriptive, inductive study including qualitative interviews. Family members in 12 families were recruited from a children’s university hospital in Sweden to participate in a series of three interviews: when first diagnosed, and 1 and 3 years after diagnosis. This article derives from the first interview. All invited families agreed to participate and were interviewed 1 to 3 months after diagnosis using a hermeneutic phenomenological approach. The family’s lived experience was identified as an ongoing learning process including learning about the inevitable and learning about the extent. The learning process was experienced as a recurrent phenomenon when the family was exposed to new situations or contexts. Therefore, individualized treatment may reduce the difficulties experienced in coping with the diabetic management regimen after discharge, thus making the transition smoother.

An Observational Study of the Level at Which Parents Participate in Decisions During Their Child’s Hospitalization

When a child is hospitalized, the parents find themselves in an unfamiliar environment and their parental role changes. They are in a stressful and often anxiety-filled situation and it may be difficult for them to participate in decisions. The purpose of this study was to examine the extent to which parents participate in decisions during the course of events when their child is hospitalized. Thirty-five parents of 24 children (aged 5 months to 18 years) were followed by mobile observation during their child’s hospitalization in a paediatric department in Sweden. Three researchers analysed field notes in three steps, using manifest and latent coding. In step 1, 119 situations that included a decision process were identified. In step 2, the situations were assessed according to a five-level scale concerning how the parents’ wishes, desires or values had been respected. In step 3, each situation was scrutinized with respect to factors influencing the extent of the parents’ participation. The results showed that parents have varying ability to be involved in decision making. Professionals need to communicate more openly with them in order to identify and satisfy their needs because some parents are unwilling or incapable of expressing them.

Needs of young children with cancer during their initial hospitalization: an observational study.

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.

Acupuncture reduces crying in infants with infantile colic: a randomised, controlled, blind clinical study

Objective To investigate whether acupuncture reduces the duration and intensity of crying in infants with colic. Patients and methods 90 otherwise healthy infants, 2–8 weeks old, with infantile colic were randomised in this controlled blind study. 81 completed a structured programme consisting of six visits during 3 weeks to an acupuncture clinic in Sweden. Parents blinded to the allocation of their children met a blinded nurse. The infant was subsequently given to another nurse in a separate room, who handled all infants similarly except that infants allocated to receive acupuncture were given minimal, standardised acupuncture for 2 s in LI4. Results There was a difference (p=0.034) favouring the acupuncture group in the time which passed from inclusion until the infant no longer met the criteria for colic. The duration of fussing was lower in the acupuncture group the first (74 vs 129 min; p=0.029) and second week (71 vs 102 min; p=0.047) as well as the duration of colicky crying in the second intervention week (9 vs 13 min; p=0.046) was lower in the acupuncture group. The total duration of fussing, crying and colicky crying (TC) was lower in the acupuncture group during the first (193 vs 225 min; p=0.025) and the second intervention week (164 vs 188 min; p=0.016). The relative difference from baseline throughout the intervention weeks showed differences between groups for fussing in the first week (22 vs 6 min; p=0.028), for colicky crying in the second week (92 vs 73 min; p=0.041) and for TC in the second week (44 vs 29 min; p=0.024), demonstrating favour towards the acupuncture group. Conclusions Minimal acupuncture shortened the duration and reduced the intensity of crying in infants with colic. Further research using different acupuncture points, needle techniques and intervals between treatments is required.

Trends in outcomes for very preterm infants in the southern region of Sweden over a 10-year period.

Aim: To investigate trends in mortality and morbidity in very preterm infants.

Impact of extended written information on patient anxiety and image motion artifacts during magnetic resonance imaging

Purpose: To evaluate whether increased written information to patients prior to magnetic resonance imaging (MRI) decreases patient anxiety and image motion artifacts. Material and Methods: A two-group controlled experimental design was used. Of 242 patients, 118 received routinely given basic written information (control group) while 124 were given increased written information (intervention group). To measure patient anxiety before and during scanning, the self-report psychometric test State-Trait Anxiety Inventory (STAI) was used. After MR examination, the patients answered a questionnaire on satisfaction with the written information. The images were assessed with regard to motion artifacts. Results: Motion artifacts were present in fewer patient images in the intervention group than in the control group (4.0% versus 15.4%; P = 0.003). There was no significant difference between the control and the intervention group regarding patient anxiety and satisfaction with the information. Women in both groups showed a higher level of anxiety than the men did. Conclusion: Increased information about the MRI scanning procedure and expected experiences during the scan may help patients to lie still during the sequences, with a decrease in motion artifacts. However, further research is needed to evaluate the effect of other interventions on patient anxiety during MRI scanning.

Breastfeeding Support in Neonatal Intensive Care A National Survey

Background: The incidence of breastfeeding of preterm infants is affected by the support provided at the hospital and in the neonatal intensive care unit (NICU). However, policies and guidelines promoting breastfeeding vary both nationally and internationally. Objectives: The aim of this survey was to describe breastfeeding support in Danish NICUs, where approximately 98% of mothers initiate lactation. Methods: A national survey of all 19 Danish NICUs was conducted in 2009. Four NICUs were at designated Baby-Friendly hospitals, and 5 had a lactation consultant. In all NICUs, it was possible for some parents to stay overnight; 2 units had short restrictions on parents’ presence. Five NICUs had integrated postpartum care for mothers. Breastfeeding policies, written guidelines, and systematic breastfeeding training for the staff were common in most NICUs. Seventeen NICUs recommended starting breast milk expression within 6 hours after birth, and mothers were encouraged to double pump. Most NICUs aimed to initiate skin-to-skin contact the first time the parents were in the NICU, and daily skin-to-skin contact was estimated to last for 2-4 hours in 63% and 4-8 hours in 37% of the units. The use of bottle-feeding was restricted. Conclusions: The Danish NICUs described the support of breastfeeding as a high priority, which was reflected in the recommended policies for breast milk pumping, skin-to-skin contact, and the parents’ presence in the NICU, as well as in the restricted use of bottle-feeding. However, support varied between units, and not all units supported optimal breastfeeding.

Breastfeeding Progression in Preterm Infants Is Influenced by Factors in Infants, Mothers and Clinical Practice: The Results of a National Cohort Study with High Breastfeeding Initiation Rates

Background and Aim Many preterm infants are not capable of exclusive breastfeeding from birth. To guide mothers in breastfeeding, it is important to know when preterm infants can initiate breastfeeding and progress. The aim was to analyse postmenstrual age (PMA) at breastfeeding milestones in different preterm gestational age (GA) groups, to describe rates of breastfeeding duration at pre-defined times, as well as analyse factors associated with PMA at the establishment of exclusive breastfeeding. Methods The study was part of a prospective survey of a national Danish cohort of preterm infants based on questionnaires and structured telephone interviews, including 1,221 mothers and their 1,488 preterm infants with GA of 24–36 weeks. Results Of the preterm infants, 99% initiated breastfeeding and 68% were discharged exclusively breastfed. Breastfeeding milestones were generally reached at different PMAs for different GA groups, but preterm infants were able to initiate breastfeeding at early times, with some delay in infants less than GA 32 weeks. Very preterm infants had lowest mean PMA (35.5 weeks) at first complete breastfeed, and moderate preterm infants had lowest mean PMA at the establishment of exclusive breastfeeding (36.4 weeks). Admitting mothers to the NICU together with the infant and minimising the use of a pacifier during breastfeeding transition were associated with 1.6 (95% CI 0.4–2.8) and 1.2 days (95% CI 0.1–2.3) earlier establishment of exclusive breastfeeding respectively. Infants that were small for gestational age were associated with 5.6 days (95% CI 4.1–7.0) later establishment of exclusive breastfeeding. Conclusion Breastfeeding competence is not developed at a fixed PMA, but is influenced by multiple factors in infants, mothers and clinical practice. Admitting mothers together with their infants to the NICU and minimising the use of pacifiers may contribute to earlier establishment of exclusive breastfeeding.